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Persevering With Autism Advocacy

Sometimes I feel like giving up.

On autism I mean.

Sometimes I feel like going back in time and not getting an assessment and not having this thing (which isn’t actually a thing at all but people think it’s a thing) that others think they can use against me.

In fact I feel I have given up a bit.

I wanted to be an autism advocate. And I’m not succeeding.

I wanted to say “You’ve got us all wrong.”
I wanted to say “Look if I can get an expert to say I have Aspergers – and look at me with my empathy and motherliness and clean washing and good hygiene and life-loving spirit and GSOH and no outward physical signs- then maybe it’s a lot more complicated and misunderstood than you thought!”
But I noticed that suddenly everyone was talking to me about autism in an ugly way. As if it couldn’t hurt me. They hadn’t changed their views about autism, no, weirdly they changed their views about me. I am still surprised daily at this. How did I somehow change?
I noticed people began to assume I was the unreasonable one in an argument when before they wouldn’t have been so quick to judge. People changed what they thought I could understand or was capable of. What the actual fuck?!

I felt no longer equal. I felt I became an alien.

I also felt that people who might perhaps themselves be autistic were afraid, and instead of thinking “Well if Rachel’s okay and not ashamed then maybe I should look into my own neurology because it’s clearly nothing to be afraid of” they were actually happier putting me into a box with a label and remembering what they’d read about this bad thing (that’s not actually a thing or bad) and not who I actually was. Or who they were. Worryingly I don’t think people realise they are being so derogatory or that it matters.

I’m still, quite frankly, gobsmacked at the things kind, loving people say about autistic people. I’m still stunned into silence on a daily basis at the categorising and the language used by otherwise caring, sweet people who have drawn a line they know they shouldn’t cross concerning what they shouldn’t say or assume for fear of offence and yet somehow autism slipped over and they can say offensive things about autism. I am offended daily. Properly hurt.

I feel I’ve been repeating myself for over four years and not getting heard.

I know one person, ONE PERSON, who admits they fit into most of the stereotypes about autism (Hello if you’re reading this!) The rest of those I know don’t think they do, and I don’t think they do either. And even then no one fits ALL the stereotypes. It isn’t possible. None of us are the same. I thought I’d made that clear but it’s not getting through. We didn’t come off a conveyor belt. But even those who do come closer to the old, offensive text book descriptions deserve better language, better respect and space for them to tell you how it is – not the other way round.

“Autistic people do …”
“Autistic people can’t do …”

Stop it.

Autism is part of a person’s personality, part of a whole. If you take away autism you leave a shell, a zombie. When you insult autism, you insult a human being. Being autistic isn’t about being plugged into a list of disorders from a nasty book that are external to a better self. You can’t unplug us and cure us. It’s about a plethora of nuances that make the person you love the person you love.

You non-auties – I don’t want to remove your insane love of gravy or your passion for sport or your habit of slinging your coat over the banister when you walk in the door or that little whistling thing you do when you’re nervous. And the things that society does that make things difficult for you? I want society to adapt, not you. And when you’re not coping with a situation I want to take you out of that situation not insist you try harder. I don’t want to unplug your nuances that are unique to you.

There’s nothing we ALL do. Nothing. Not one thing. There’s nothing we all can’t do either. Nothing. Not one thing. (Well apart from all the things that are in fact impossible.)

I feel like going back in time, sitting in a room with my psychologist and this time laughing and joking and asking her about her family and not helping her at all.
I feel like making direct eye contact and smiling and keeping my hands still (I can do this for hours if I need to) and choosing different stories from my childhood this time. I can do what all the undiagnosed autistics do. Reject. Pretend. Deny. Retain the privilege to offend.

I feel like waiting for my assessor to deliver her opinion that I may have a few traits but it’s probably just anxiety and that I am in fact not autistic.
Because I could do that. I could.
(Apart from the going back in time thing.)

But I won’t deny. I will continue with my solidarity. I will continue to hope respect will improve considerably. I will continue to hope everyone will catch up. I will continue to be more patient, understanding and forgiving than people will ever realise because they’re too busy looking through the wrong lens to notice how often I am forgiving them.

Anxiety Roulette


I want to talk about the power of anxiety.

I want to talk about how it’s not about a change in mindset.

I want to talk about how it’s not a thing you can easily control with thoughts and actions and practices.

I want to talk about how all the pep talks and encouragement in the world don’t always help. Sometimes they make things worse.

I want to talk about how the fight against anxiety is often a bad fight, a futile fight.

I want to tell you it’s not about attitude. There’s nothing wrong with my attitude.

I want to ask you please not to tell me not to worry, not to tell me it’ll all be okay, not to tell me I’ll enjoy it if I try, not to tell me I’ll be glad I did something, not to tell me “Well done” when I walk through hell and come out the other side, weak, dizzy and exhausted, with bits missing and reduced power.

I want to ask you to please not write me off either. Don’t think you know what I’m capable of or not capable of. Don’t assume I can’t or won’t. Let me decide.

I want you to know how much I love films and theatre and concerts and loud music and dressing up for parties and dancing and laughing and coming home late in a taxi thrilled by the feel of nylon instead of jeans on my smooth legs, and the soft fade of twenty perfumes around my head from all the familiar faces I kissed in greetings and goodbyes. I want to tell you how much occasion moves me and fills me with the joy of experience. I want to tell you how good it is to catch up with old friends and grin into eyes I love and to feel the energising give and take of a fond squeeze.
I want to tell you how beauty and being Out There, and filling all my senses with both new and familiar experiences and making a record of my life makes me feel alive. I want you to know I am fun. I am.

I want to tell you how, despite knowing everything will be okay and knowing my destination and my love for what I will be doing, that sometimes I hurt too much to see it through. That I hurt before I go, I hurt as I get ready, I hurt as I walk through a door, or leave the safety of our home or our car. I hurt when I see many faces. I hurt when I already know this isn’t going well. And on those occasions I will not be glad I went. And sometimes I will genuinely wish I hadn’t or be glad I didn’t just because I needed the pain to stop.

But instead, I’ll give you an example, and hope that will make you understand – or at least make you realise you understand less than you thought and that you need to understand more.

Yesterday we went to the cinema. I and three of my safe people. Safe people are people I can see whatever kind of day I’m having. In my case it’s my husband and children. We went to our usual, familiar cinema. I said what and where and when, and had booked seats in advance the day before and pictured where we would be sitting. I then got on with my life, pre-event. We went shopping and for a walk and I made dinner and did gentle yoga. I went to bed at a sensible time and I got up and did more gentle yoga. I showered and dressed in the usual way and got myself ready to leave the house. But anxiety had been waiting, and as I got ready, it began to hurt me. I felt pain in my chest, and by time we were in the car I felt pain in my upper arms. As we got out of the car and walked through town, I began to feel weak. This simple everyday event was something I should have felt entirely comfortable with, in theory, and yet I was getting all my usual symptoms of fear.
We met our eldest daughter and the four of us killed a bit of time before the film started but all the while I was looking forward to sitting down in the dark, and being out of this anticipatory phase.

The film was Bohemian Rhapsody. It was loud and entertaining and distracting. It tugged at my emotions, the music lifted the pain in my chest. I was taken back in time and really felt absorbed as music memories were triggered.
I am musical. Music used to play a huge part in my life. I was always singing, playing, performing, practising when I was young. Music always lifts me. Loud music that I can feel in my chest is medicine to me. I related to the quirky creative performer that was Freddie Mercury.

When the film was over and I was still high from the music, I talked about 1984 and Live Aid and the impression it had on a then 14-year-old me. My words weren’t formed properly and I stumbled. I think I got away with it because we were walking out of the building and I was up against other voices. But already I knew I’d exhausted myself.

At home we walked the dogs quickly as the sun set and I felt a strong desire to be still and do nothing but stare at the sky but we rushed home and I cooked the evening meal. My legs began to feel weak and my arms shook. No one noticed. It’s something I’ve had to hide all my life. I began to forget why I’d walked to the left to fetch a spoon or what I was going to do next. I can only explain this is a feeling of shutting down.

I felt dizzy. I felt weak. I felt symptoms commonly associated with hunger but eating didn’t make me feel better.

I didn’t help clear up after the meal. I went upstairs to change and collapsed on the bed. All the pain had stopped (although it’s back now for some reason) but I was left feeling absolutely exhausted. In theory though I shouldn’t have been tired.
The night before I had slept well. Really well. It had been my best night’s sleep of the year. I had absorbed the extra hour of the clocks going back and woken with a smile before doing yoga.

I am glad I did what I did yesterday. I don’t always know when or how much anxiety will strike. I don’t know how much it will affect my faculties. I do still want to plan and look forward to stuff and try to have fun. But anxiety is draining. It sucks the life out of me. If I do something small it’s bigger than your 2 activities, than your 3 activities. My trip to the cinema is bigger than your flight to Morocco or your 60th birthday party. I’m not entirely happy with that knowledge.

Today I will have an anxiety hangover and have to limit what I do and what I put my brain through. My husband won’t understand. Why should he? So I’ll just be slow and useless and boring and feel like a complete disappointment.

When I’m better I will plan something else.
And hope that anxiety can’t be bothered to play up. My trick of distracting myself sometimes works, sometimes it doesn’t. My trick of thinking ahead and making sure I know exactly how things will go sometimes helps and sometimes it doesn’t.
If anxiety does want to play I will have the usual choices:
Cancel?
Get as far as the event and either embarrass myself or run away or both?
Plough through the pain and hope the anxiety fades?
Go but regret it?
Spend the next few days doing nothing while my body recovers?
Get through relatively unscathed and be happy?

Maybe it will be worth it. Maybe it won’t.
I can’t call it. You can’t call it. But I’ll never write myself off or decide that I’m not doing anything again. I just have to pace myself.

So please don’t ever tell an anxious person they’ll be glad they did it. Please don’t tell me “Well done!” when I’m actually done in and uncertain. Each time is different and sometimes getting through was the wrong decision. The power of anxiety to trash events and lives is more complicated than you might think.

And please, please, please don’t write us off, don’t cross us off your list. We need things to look forward to and we need our capabilities noted.

Oh, and did that extreme exhaustion mean I slept well last night? Hell, no… adrenalin and cortisol poison my sleep patterns and haunt my nights.

On Hold

The last 8 months, since Richard’s brain scan — The diagnosis, the move, the change of identities, the stress of dealing with so many interactions, the life with no home — have been about endurance, tolerance and patience, and hoping we would meet at the other end of this current ordeal as much in love with each other and with life as before.

I believe we’ve achieved that. And some.

It’s been a gruelling first step in our new life, and a step that had to be built before the other steps could materialise.

I think about our old life often, and about how holding off would merely have delayed change and made it more difficult.

This has been a tough time but it would have been so much worse if we’d held out until circumstances with Parkinson’s problems dictated and then tried to build a new life with less strength and ability.

We’ve been aided by a glorious summer and can’t bear to think how we would have managed to live on a building site for so long had it been a typical, wet British summer or if we’d tried to do this after the disease had progressed further.

Just clearing out decades of clutter and crap was emotionally and physically draining. Not something you’d want to do with limited faculties.

And there were some days when we had nowhere to hide and nowhere to rest.

Initially we approached the few months of eating out and TV dinners in our room and enforced walks to get ourselves and the dogs out of the way, and of every day holding something different and challenging as a holiday and an adventure. We didn’t say it was going to be awful, we didn’t say we would struggle, we didn’t instantly fall into anxiety and despair. Being realistic about a struggle helps you plan ahead and create coping strategies.

But all the attitude and willpower in the world can’t fight the other stuff. We stopped eating out in late July and didn’t have the energy to celebrate either our anniversary or my birthday.

We are supremely knackered. We are sick of dealing with stuff. When Richard is tired or stressed or upset he shakes phenomenally and I, by his side, shake with him. He literally shakes the furniture (Yay! We’ve got furniture now!) and all I see is our world quaking.

When too many problems and noises and mishaps come too fast I lapse into fight or flight instinct, and anxiety rules. When anxiety rules me, it rules Richard too.

Richard has been suffering with a chest cold for weeks and there’s not been enough down time and peace to shake it off. Parkinson’s can cause some people to have weakened immune systems and struggle more with viruses, and he needs to take extra care of himself forever now.

How you cope and handle things is not all about strength, willpower and attitude. It’s about what extra stuff life throws at you.

We chose to handle Richard’s diagnosis well. We chose to see the positives. We chose to maintain our senses of humour and we chose to have a good attitude to it all and treat the moving and the house renovations as an adventure. Our minds were fully turned on to strong, good attitude and glass half full – if not more so.

But we can’t willpower away the fact that his tremors got worse. We can’t positive attitude away the aches and pains. We can’t say my often crippling anxiety is just a mind over matter thing.

Yesterday my anxiety appeared in the form of a force field that pinned me to the spot in terror and left me unable to speak. Think rabbit in headlights. Anxiety force fields are the result of exhaustion and not enough repair time. (Thank goodness for the internet and social media where my words can continue flowing freely). I thought I would pass out.

We can’t choose to not have our brains. We can’t make the tiredness go away. We can’t lie about how intolerably difficult some moments have been.

I’m honest about my feelings and. I’m self-aware of the place I’m at.

I’m not moaning, whinging, ranting; I’m not asking for sympathy or answers.

I’m not angry. I’m not fed up. I merely recognise what is going on in my life, my head and my heart.

It doesn’t feel natural to silence myself until I have only good news and happy scenes to share, and it is not always healthy – and certainly not necessary to those who truly care.

Projecting a perfect life onto the watching world can be hard work and can cause people to retreat if they feel it’s the only thing allowed.

For all the good, this is HARD work. For all the breathing in there needs to be breathing out. And right now we need to do extra, slow, heavy breathing out.

I think people often misunderstand openness. It’s not glass half empty. Not for us anyway. It’s honesty.

This evening I found myself looking at photos from last year – specifically the ones where I was still trying to work out why Richard wasn’t well – because his first doctor had said it can’t be Parkinson’s… Yeah…

My head went to some bad, scary places. Suffering in silence and denial and holding so much in is awful and halts progress.

As everything we’ve had to come to terms with this year sinks in, and the literal dust literally settles, we can see how the next steps can now appear. We’ve rebuilt our identities, we’ve rebuilt our home, and now we can start to rebuild our life.

I look forward so much to seeing Richard being physically active again and regaining his strength and ability to fight. I look forward to having time and energy to enjoy this space we’ve made and planning life-enhancing activities.

There is so much to do.

But first we rest. We are so very, very, very tired.

Some people need to get out more. I guess you could say we need to get in more right now!

We are not OK and that’s OK

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Dylan the dog coping with the chaos

Whilst over Christmas we might have looked like lucky buggers with enough time and money to be swanning off to Australia, in truth it was more like “pinch from Richard’s pension to have a holiday of a lifetime because we don’t know what scary news 2018 will bring with his brain scan looming”.

We hadn’t had a holiday for many years and we’d never had a big holiday. And we’d only ever had one family holiday with all five of us – which Tess was far too young to remember.

Richard had almost stopped surfing and we were both suffering from anxiety. The shop takings were down, the books weren’t balancing and we’d borrowed money three times to see us through winter and for much needed home improvements. We’d both also had 10 years of various physical and mental health wranglings to deal with on top of losing both our fathers.

Rich doesn’t like talking about this stuff. He grins and tells everyone he’s fine even when he’s absolutely not. He internalises money worries until he’s ill. So I joined him in the stoic front while privately I was in turmoil about his health and our future.

Grin and bear it is not my style though and I found it difficult to pretend – particularly as I had done months of research and knew the various reasons for tremors, and had contemplated the possible outcomes and the effects on not just his but all our lives.

While we were away thoughts of what we would be returning home to prevailed, and on the flight home I watched Richard’s tremor increase with the tiredness and anxiety, and wished I could stop it. I wished I could turn off his brain and give him a break.

When we returned from Australia in early January we had to gear ourselves up for hospital appointments and test results with months of winter still left to plough through. Surely it was finally time to stop pretending we were okay?

I eventually broke my silence and told Richard to prepare himself for a positive Parkinson’s diagnosis. I was worried that he had been hanging on too long to his former GP’s opinion that it was “just a tremor” and to the story he was telling himself and others that the scan was just to “rule out” Parkinson’s. I could see him coasting into yet another year of stress and full-time shop-running shenanigans without giving himself time to process the enormity of his own health issues. We are complete opposites when it comes to denial or self awareness and discussions of such, and I could foresee life getting very difficult with this “just keep plodding on” mentality of his.

It was time to dig deep and lay it all out.

So for seven months I have pushed to put what is important to the fore. I have made all our actions and visions and plans about family life and simple life; about peace, about reducing stress, about visualising what is best for all of us and making it happen. I am trying to force us both to recognise and accept – and love – each other’s quirks and limitations and work around them to make them no longer limitations.

Money, school grades, possessions, appearances, status, other people’s ideas about a life well lived are all off our radars. Bugger all that. We’ve bought a small unassuming house in order to pay off our mortgage, and don’t give a flying fig what people think of us.

Life is now going to be about acceptance, day-to-day appreciation, little stuff, beauty in nature, eating well, and space. Space in our heads, space in our timetables, space away from duty and phone calls, space away from the rat race. We have split open everything we ever were on the surface and are being the real us that we always were anyway – before we stopped lying.

And I do believe silence is a lie.

Other people use lies to survive, I get that. People need to ignore the truth in order to cope. Some people’s very existence depends on being as unaware of their true selves as possible.  But we’re using the truth to live by. The painful truth and the honest truth and the comfortable truth.

The hurdles to getting to that truth are huge though. We have a list as long as our arms of things we need to achieve and throw off, to finalise and to tolerate for a while, and we’re only down to our elbows so far.

We are exhausted. Richard’s tremor is awful. I feel sick regularly. I run out of peopling energy regularly. We are absolutely pig sick of eating out, of microwaving, of being uncomfortable. I don’t usually eat bread but I have had to for the last few months and I have a constant bread belly pain. We don’t sleep well at night, we get up early each day in case the builders/plumbers/electricians are here. We are unnerved by the inconsistency of life on a building site and of never knowing when noises will stop and start or if today the builders will come or they won’t come, of who wants to discuss what and what we have to answer. The days of nothing are as bad as the noisy days because the uncertainty is traumatic.

The concrete dust and insulation dust are bad for Richard’s asthma, and the decision-making and constant change is bad for his tremor.

I have had to try to forget I have an Asperger’s diagnosis and chronic anxiety. Noises, smells, newness, being surrounded by people, disruption are all excruciating and I am holding on to my big internal Mamma who is telling me I can cope and I will cope and I can collapse when this is all over. Internalising isn’t great though. It gives me mystery pains and nausea. I want to explain to everyone that anxiety is the most inexplicably exhausting thing to deal with and that I can’t live normally. I have periods of insomnia, periods of sleepiness and periods of illness. I can’t say that. Instead I rock up in the space we will one day call our home and sway weirdly from exhaustion, talk less than I should, indulge in fewer social niceties than I should and struggle massively to answer questions amidst the chaos and the noise and the dust. Loud noises make me freeze until they have passed. I can feel myself underperforming and it’s absolutely bloody horrid. I can barely function. And yet I do. Simple things like having a shower and drying my hair before the electricity is turned off this morning and trying to dish out dinner from the slow cooker on a desk in the hall last night are no longer feeling like an adventure but a nightmare.

The list is being ticked off though. And that’s why I’m writing this. We need a reminder of just what we’ve done, what we’ve gone through, what we’ve achieved. I keep visualising the future and feeling impatient that we aren’t there yet, and I need to visualise the past too. Because, hell, we’ve done really well so far.

We’ve processed a life-changing diagnosis, sold a house, bought a house, dealt with the appointments, emails, phone calls and stress involved in those things. I coped with the excruciating anxiety of house viewings that only a perfectionist with crippling anxiety can comprehend. We’ve closed the business and put the building up for sale and dealt with the tirade of communications involved in that; we’ve planned massive house alterations, communicated our needs, tolerated 7 weeks of utter chaos and lack of space, lived without a kitchen, a sofa or a place to eat; we’ve kept up with Richard’s meds and appointments. We’ve put up with incompetence, planning regulations, disappointment and frustration. We have taken on board an enormous amount of heartache and processed some difficult truths too. I’m not going to pretend our lives are in any way perfect right now.

So for now we are busy being not OK. It’s perfectly reasonable that we are not OK. We know how to be okay though and are working on that.

Tick

Tick

Tick

Tick

Tick

The Power to Rearrange

Recent events have taught me many things. Importantly, though, they have taught me that the future is not just ten years away, one year away, one month away, one week away. The future is our next breath, our next step, what we’re having for dinner. Tomorrow is the future – not just sometime; not just some other time down the line.

We can’t put off what we want to do, what we need to do, and pretend there is still time.

Old age is not a certainty. A healthy old age is most definitely not a certainty for us. We (as a couple) know now that our old age – if we are lucky enough to have one – will come with some big challenges. And we don’t know which ones.

A Parkinson’s diagnosis shouts “Uncertain shit ahead!” in a way we’ve forgotten to look out for. Life is all about uncertain shit ahead for each and every one of us. We have Richard’s dopamine receptors to thank for that nudge. I find myself wanting to tell other people “Don’t wait for your nudge!” “Don’t have regrets!”

Remember how you nearly weren’t born. Remember how it was nearly a different sperm, a different egg. How lucky are you to be here?! Life is full of accidents and butterfly wings and chains of events that we can control some of and we can’t control a lot of.

Our simple existence is a random chance to spin around the sun a few times and catch a few summers that we are so bloody lucky to experience. It’s so very precious and so very short and so very precarious.

I’m a very straightforward thinker (believe it or not!)

I don’t believe in meant to be.

I don’t believe that everything happens for a reason.

I don’t believe in any greater plan, and I really really don’t believe in destiny.

I’ve seen too much senseless pain to believe any of it happened for a reason. I’ve seen too much destructive greed and excruciatingly difficult lives to believe it was meant to be.

I’ve seen paths of equally good people go such different ways I can’t believe it was fate.

I believe that life is a series of events that could have been changed if we knew, that can be changed based on our tools, and that can’t be controlled totally because of our genes and our circumstances.

I even believe our power to make the best of situations is partly ours to control and partly impossible to control simply because of our genetic makeup and past experiences.

You can choose happiness but you can’t make it choose you.

This wasn’t “meant to be”. I wasn’t meant to walk behind my husband watching his muscles waste and his right side seize up and those beautiful muscly surfer’s shoulders I fell in love with shrink. Iwasn’t meant to look forward to spending our whole lives frightened of what’s next and wondering if he’ll ever be able to hold his grandchildren when they come along. I wasn’t meant to spend every day trying not to pity a man who can no longer sign his name or write without a huge struggle. He’s in pain when he wakes and slow to get out of bed before he’s even old. How can that be some kind of plan? I wasn’t meant to lose the freedom usually brought by middle age and big kids who no longer need care 24/7 to a disease that forced us to rapidly and drastically change our lives before we were ready. Just as I don’t think our baby sister was meant to die of neuroblastoma or our father of leukaemia.

I believe in atoms and free radicals and chances and missed chances and metabolic cravings and the effects of greedy men on our lives.

I believe in power. I believe in self-power being easier to harness in some of us over others, and however much some of us want life to be better we can’t make it happen.

Being able to harness what you have is a big separator. Whatever the individual components that made me are useful tools in spotting the good in life, in making choices towards happiness, in seeing and feeling the good around me. My chances are better because the series of events that made me who I am today make me better able to choose happiness.

A house full of books, a childhood learning music, much free time for thinking, a home in a beautiful area, educated parents, some fairly untypical opportunities at a young age to be forced consider others and to realise I was lucky to be alive ????? I don’t know? Some of that? All of that? Other stuff? My biological makeup? My fussy guts? My good bacteria? My bad bacteria?

I know I have the power to be happy. I know I do and I know I’m lucky in that.

I know that’s partly because happiness chose me – and that’s not fate or destiny or meant or be. It happened for reasons. But not a reason. And this is why we can rearrange our lives and make it work and be happy. This doesn’t make us better than anyone else. It makes us lucky.

I’m sad about what’s happening to my husband but we will cope and we will find ways around it because we have the power to. But I don’t for a second think it was meant to be. Another kind of nudge would have been kinder.

ALL CHANGE: From Autism Awareness Month to Parkinson’s Awareness Month

It’s April again. This year is very different. We have a new diagnosis to deal with, and here, in our family – in our relationship as a couple at least – this new diagnosis has overshadowed the old ones, and probably always will.

April has been marked by autism charities as Autism Awareness Month. April is also marked by Parkinson’s charities as Parkinson’s Awareness Month – with Parkinson’s Awareness Day in 2018 being held on 11th April.

My husband has been diagnosed with Parkinson’s Disease this year. This, as much as my anxiety and my Aspergers, affects each individual differently. And it is different each and every day too.

We are slowly reading a few pages of Michael J. Fox’s first Parkinson’s memoir: Lucky Man, each night, and I am recognising in my husband the same early rejection of the possibility of Parkinson’s, the same denial, and the same desire to not let it define or dominate his life, and I am hoping his progression from now will be much the same too. Michael J. Fox, as far as the book goes, doesn’t suffer with dementia or sleep problems or depression or gut problems or incontinence. He has remained active and positive and eventually become very public and very vocal about the disease. But at first, he, like my husband, was very quiet about it. Understandably. It’s a lot to take in. And it’s not who he is. It hasn’t taken his identity. He is still him.

But no one knows what will happen. No one knows how the next ten years will be, the next twenty or even the next day. Some days Richard tremors a little, some days he tremors a lot. Some days he just seems “wrong”, closed off, not himself. Some days I think he might be depressed and then he bounces back suddenly. When he wakes in the morning, I wonder, ‘What will we get today?’ There might be hours in each day when everything seems just how it used to be and nothing reminds us. And there are other times that are all about reducing the stress and anxiety and telling him to stop and to breathe and try to distract himself from something that’s upset him. Something upset him enormously recently and I could see how it now plays out in a much more physical way. Physical consistency has become an issue, which in turn means consistency in general has become an issue.

Kind people, with family experience of Parkinson’s, want to tell us it’ll all be okay – or at least okay-ish, or that they’re overwhelmingly sad or sorry, or that a certain drug regimen works wonders – based on their own experiences. But it’s not that simple. It’s a waiting game and it’s a lucky dip. The symptoms vary enormously from person to person and the reaction to medication varies enormously too.

Just like autism and anxiety it’s not a straightforward thing. As a Parkinson’s brain ditches the dopamine in its own very individual way, so it cherry picks the symptoms and delivers sets of struggles unique to each patient.
I understand this very well. And I understand the well-meaning people with their preconceived ideas and own observations and experiences.

Michael J. Fox said in an interview I watched recently that in a million people with Parkinson’s there will be a million different experiences. They are all valid. And we are genuinely grateful for the camaraderie and support given. I am grateful that I see so much love for my husband from inside and outside the family.
But there is no known trajectory. It just will be what it will be. His version.

Parkinson’s has made it into the U.K. media recently with reports of Parkinson’s patients being treated with ignorant unkindness and impatience in public places. It seems that people don’t know enough about it to recognise it and they fear difference or behaviour they can’t make sense of. Similar to a stroke patient after a significant stroke, a person with progressive Parkinson’s can’t get their body to do at the same speed what their brain is ready to do now, and there is often weakness and stiffness on one side compounding that inertia. It must be infuriating.

So it’s clear there’s a long way to go to understanding this disease and getting the public to understand it.

I’ve had to become more aware, more educated. I was researching privately and quietly before Richard’s scan and began to make myself ready for what was beginning to look inevitable.
We saw Richard’s brain scan at his follow on appointment and Richard knew I was more interested and ready to deal with it than him and he pushed me to get up and come forward and take a look. I saw inside his brain for the very first time. That brain that holds all his memories and instincts and desires and the very essence of who he is.
Wow.
Unlike a stroke, where brain damage is visible, in Parkinson’s it is only the dopamine transporters that are damaged. A DaTscan lights up the healthy dopamine brain cells remaining but Richard has dark areas where dopamine should show and yet there is already a chunk missing (I don’t believe “chunk” is a neurological term!). It will have been going on for years before we suspected anything. It’s strange to think he’s had Parkinson’s all these years as we lived life normally and unawares.

Our life and our future is still almost as uncertain and as much of a guessing game as it ever was. Only now we have something we have to live around, to accommodate, to make allowances for.
And I do mean “we”.
Although of course, this is first and foremost my husband’s struggle, it is our struggle. Life is about how we don’t let this control us, about how we implement change, about how we invent workarounds and how we are always looking forward.

From now on life is different. And how I live it will be different because this is our diagnosis, our motivation for change, our family, our past, our future, our partnership.

Anxiety Acceptance: this is me

Anxiety makes me skip meals and eat nothing for hours then eat popcorn and chocolate for hours and anything else that will boost my blood sugar. It makes me not sleep when I should sleep and feel I must sleep when I should not sleep.
It makes my heart beat like tom-toms in my chest and my ears. It makes me bite down all my fingernails. It makes me chatter through films and give up on every book I try to read. It makes me forgetful, unable to listen, unable to sit still, unable to find strength. It makes me ache, it makes me fat. It makes my face puffy and round. Anxiety stops me sticking to any task. Anxiety steals hours and whole days. Anxiety paralyses and panics so that I am both at once ready to run yet powerless to; desperate for action yet trapped in inertia. Anxiety rips up plans, disturbs peace. Anxiety stores fat on my belly yet tells me I’ve no time to exercise. It shouts at me through every thing I try to do for myself that I’m being selfish. Anxiety has a list of things I should be doing instead and where I’m going wrong, yet when I start that list it bombards me with so much other information that I lose my way. I lose minutes, hours, days, circling.

Anxiety butts me in the belly like an angry goat and sends shockwaves down the nerves of my arms like a jackhammer until I lose fine motor skills and fizz and tremble with weakness. It makes me drop things, injure myself and wonder at my own capabilities.

Anxiety makes me startle at every noise and it makes me terrified of the unexpected. It copes badly with potential conflict and gears itself for harm too easily.

Anxiety makes it almost impossible to cope with 2 different sources of sensory information and often others’ “ordinary” is my “Way too much!”

I was born this way. It’s all I know.

My motto is Always expect the unexpected.

Anxiety has taught me that absolutely nothing comes easily, that life is full of surprises, twists and turns; to be ready for anything, to seize every possible moment to enjoy normality and peace. Anxiety has taught me that the distractions of nature and the ocean are life’s greatest blessings, that a hug can heal, that a touch can calm, that a kind word can bring good tears; that simple is beautiful. That love is healing. Anxiety has given me no need for thrills and spills and adrenaline rushes (they keep on coming anyway) and instead has given me an instinct to be uncomplicated, non-competitive, a carer and a soother. A peace-seeker.

Anxiety makes me a super quick-thinker, an urgent problem-solver, an impatient completer.

Anxiety makes me exquisitely delighted when I find release and distraction from the worries of daily life. Small thrills are huge to me. The little stuff is truly wonderful.

Anxiety makes me spot things no one else has spotted. My on alert is highly useful, and my quickfixer mentality won’t rest until all avenues are explored. I literally and metaphorically sniff things out.

Anxiety is not me but it is a constant companion; a part of me. If I acknowledge it and let it play and make provision for it in my life instead of fighting it we live in a kind of harmony together. If I try to pretend it doesn’t exist and try to beat it and ignore it and override it then I lose the part of me that notices stuff and that finds peace from acceptance and instead it works underground to destroy my health.

I’m not beating it, I’m living with it. Acceptance is everything.

This is me.

It’s not all good. But it’s not so bad either.

I can’t hate anxiety anymore because it would be like hating myself.

How futile would that be?

Sorry.

I don’t know where to start. I really don’t know where to start.

I don’t know where things begin so where do I pick up from?

So I’ll start with reasons:

Anxiety, childhood and adult traumas, being misunderstood and misjudged, being bullied, mystery stomach pains, mystery exhaustion, anxiety exhaustion, insomnia exhaustion, social exhaustion, overstimulation exhaustion, hormonal problems, problems with executive functioning (in my case this means never knowing what order to do things in or how long they will take), untapped and unexplored creative yearnings, a feeling of wanting badly to fit but knowing I never will, a need to find solitude and space beyond the realms of what others consider “normal”, an intense hypersensitivity to everything going on around me, extreme empathy which means I literally suffer with people as well as feeling sympathy for them, low self-esteem, fear. In more recent years pain from hyper-mobility causing me to use my muscles badly. Uncommon reactions to foods, medicines and other stimuli. Massive emotions that cause me to feel hurt, heartbroken, moved, ecstatic, frightened, offended and traumatised and also highly amused and deeply in love and overpowered by music more easily than most. (I have to stop myself bursting into tears about the big feels of life literally every day. Often just because a sound is beautiful or something happens just at the right time). Absolute terror at any prospect of conflict. Fear of phone calls, fear of unexpected events or visitors, fear of losing people. Massive, massive, massive fear of losing friendships – so massive I don’t fall into friendships easily. Inconsolable sadness and frustration if misunderstood. Crushing pain in my chest and around my rib cage and back as if my heart is hurting lasting days if someone upsets me or misunderstands me. Socialising replay and fallout where I am kept awake by reruns of everyone I’ve talked to that day and then knackered while I try to recover.

That’s just a few things off the top of my head!

So why these reasons?

Because I’m fed up. And I’m sure some people are fed up too.

I just want to get on with my life. I don’t want to keep shrinking my world because people think I’m someone I’m not or I’ve said or implied something I haven’t just because I’m an individual and don’t always have the social energy to explain myself. I’m fed up with feeling people expect me to do life differently from the way I’m doing it and not just loving me for who I am. I am so tired of being afraid. So tired.

I don’t want help, guidance, counselling, drugs, advice, tips, or pressure to conform. I just want to get on with my big feels life and not be judged.

So, my point:

I’m sorry.

I’m sorry if you don’t “get” me. I’m sorry if you misunderstand me, I’m sorry if you think I’ve offended you or not measured up to your ideas of how I should fit into your world. I am genuinely, truly sorry if you don’t think much of me. I’m sorry you can’t see beyond what you think I am based on the way I held myself the last time you saw me or what you think I thought based on my silence the last time you tried to interact with me, or the way my words entered your brain in a different way from the way they left my brain and you didn’t stop to think that it’s not me you should be blaming. I’m sorry if you read my self-preservation as hostility or rudeness.

I’m sorry that because I’m not like you you think I must be faulty or bad or bad-hearted or in need of some kind of fixing.

I’m sorry. I am sorry.

I don’t want a world that is shrunk to tiny because I can’t muster the energy to act for your sakes every day. And yet that’s where I find myself.

I don’t want to keep thinking “Who the heck am I?” because I’m this to you, that to her, the other to him and neglectful to myself. Acting every day in different ways is pretty shattering.

I’m clever. I have a degree. I’ve studied a vast array of subjects. I’m great at research. I fix what needs fixing, I patch what needs patching, I find help for things I think are a fault and learn to love what I know is not a fault but simply my individuality. I had to be very brave and consider others’ feelings from a very young age and I’ve lived this way ever since. I’m always looking at how others are feeling and wondering what I can do and feeling part of you as if we are all joined in some way. I will literally be happier if you are happy and beside myself with worry if you are not.

I don’t expect you to research me. I don’t expect you to completely understand. What I did expect was for people to just realise and accept they simply don’t fully understand me and that was fine – they just shouldn’t judge.

An “Oh! You’re not like me?! Hell, that’s just fine” kind of acceptance would be great.

But people don’t always just accept. They don’t even know they’re not accepting. They look for ways to adjust me regularly because there’s comfort in familiarity and sometimes I don’t always do all your familiar stuff like you’d like me to. Deep down you find it hard to think it’s okay. You know you do.

I’d love it if you could try though.

Do you know how hard I’ve been trying all my life?

This isn’t a call for pity or sympathy. Nor is it navel-gazing, self-indulgence. It’s more of an outward-looking study of human behaviour around those who are not fully understood, and it’s an apology that I can’t not give a flying fig and move on or ignore or just be happy to hate the way some can because I love people and I can’t cope with bad feeling.

I give lots of figs.

So why am I sorry?

I’m sorry that’s it’s not my fault and that there’s nothing I can do about it. I’m sorry that I’m surprisingly happy with the way I am and you’re not so much. No really – I know you think I’m breaking some kind of unwritten rules that don’t actually exist. I know. I feel it. I feel it very well. I am tuned into little adjustments in your approval that you’re probably not even registering yourself. But subconsciously you’re point-scoring me a heck of a lot of minuses. I’m sorry that I have to shrink away from so many of you so often because being misunderstood is so physically difficult as well as so emotionally devastating. I’m sorry that my way of demonstrating caring is different sometimes from your way of demonstrating caring and that you can’t always see that both ways are acceptable. I’m doing big cares in ways you haven’t even thought of and you don’t know you’re breaking masses of my social rules and I’m not even mentioning it or holding it against you.

I’m sorry because there is so much more potential for all of us to be more joined by empathy and yet… and yet…

Well. I’m just sorry I am. Because I feel we’re all missing out.

Identifying and coping with being not autistic (or having Nonautism Disorder)

(Rachel is a normal, healthy autistic who has been working with Nonautistic sufferers all her life)

Non-autism Disability is a triad of impairments involving three or more of the following disorders:

1. Muted sensory awareness: Where the sufferer has a defective or lessened sense of smell, touch, hearing or visual awareness. Their palate might also be muted meaning they eat too much. Being defective in sound and vision abilities means they are often unaware of everything going on around them and miss out a lot on life. Sometimes they barely notice a touch or a flickering light as if they are not fully switched on to life.

2. Low Awareness Disorder: People inflicted with Nonautism Disability are often not taking in their surroundings enough and block out or ignore lots of detail. Although frustrating to live with people like this (friends, partners and families often report how they find their nonautistic family members hard work), people with nonautism can be very useful to us in the workplace as they achieve tasks with a devil-may-care attitude to their surroundings. It can be distressing, though, to watch them missing out on life.

3. Sleep Easy Disorder. Laboratory studies on sufferers of Nonautism Disorder show a common condition afflicting many subjects. They often find it too easy to “get over” stuff and unfortunately can fall asleep before examining what has gone wrong. This can be problematic for loved ones who might be distressed by their lack of interest in others’ feelings when their nonautistic companions don’t seem bothered about getting to the bottom of things.

4. “That’ll do” Disorder. People with Nonautism Disorder can plough through tasks like a machine. Their coldness and ability to detach themselves from deep emotions or distractions with ease means they ignore butterflies when gardening, never stop to dream when cleaning and always do things in a robot like order that may seem almost nonhuman to normal autistic people. You might often find a person with Nonautism Disorder has done exactly what they set out to do and finished on time which can be quite unsettling and unrealistic.

5. People with Nonautism Disorder have a Be Like Us Disability which makes them very samey. They often greet each other with the expression “Hi. How are you? I’m good.” – rarely deviating into lengthy sentences about the intricacies of life, and seem bewildered by those who do. They can often be found in groups staring blankly at anyone who is not like them.

6. Oversocialising Disorder. Nonautism Disability means the brain is defective at keeping the mouth from chatting. Idle chit-chat and gossip and pointless accounts about TV programmes or celebrities come pouring out. Family members often report their distress at the way their loved ones can’t control this Disability and have set up support groups to talk about them behind their backs. It’s possible that the Forced to Fit movement may be helpful in this area.

7. Deep Caring Deficit. Experts believe nonautistics simply don’t have the capacity to care enough. But they can be taught to mask this and can learn sets of pretences to help them fit. When forced to repeat “Wow!”, “Did you hear that!”, “Isn’t that beautiful”, in small rooms for days on end, some patients can become really quite convincing and often be mistaken for having normal healthy, easily distracted, autistic minds.

Recent studies are beginning to show evidence that this pretence might be exhausting though and never become natural to them but the jury is still out on that so the Forced to Fit movement still continues. Nonautistic Awareness Day has been set up to raise money for the founder members’ stable block and holidays.

There are text books and TV characters that accurately depict all non-autistic people. If you want to know more about how all non-autistic people behave then look no further than Lorraine Kelly. Non autism is mostly a female trait with more than 99 percent of non autistics being just like Lorraine Kelly. Some nonautistics are more disabled but just like her most are likely to spend a lot of time sitting on sofas chatting, making small talk and asking people questions about their lives.

Nonautistics are often funny without realising it and it’s good to laugh at fictional nonautistic characters in films and point out how we are better than them.

The debate continues on whether we should call people with Nonautism “A Person with Nonautism” or “A Nonautism Person”. Many family members say their loved ones – although difficult to live with – are still a person first and foremost despite their disability, and so they prefer to say they are a Person with nonautism and hope that one day a cure can be found and their nonautism removed. Normal Autistic people have first choice in this of course and must decide what to call people with Nonautism because we are the ones who write the studies and text books and tolerate the Nonautism affliction in others.

If you feel you or a loved one is suffering from Nonautism Disorder contact your General Practioner who may or may not know enough to help you, may or may not agree with you and may or may not put you on a long waiting list to be clinically assessed with the guarantee of an uncertain outcome and uncertain support. Don’t worry though. We’ve watched Lorraine Kelly and we all know exactly what you are all like.

Autistic Burnout: a special kind of weary

How do you start the day?

I start with a well-researched concoction of supplements to help reduce the effects of burnout and deficiencies. Magnesium and B vitamins feature highly. I also take natural anti-inflammatories and vitamin D amongst the plethora of other goodies. Without them, the desire to curl up and sleep is constant throughout the day and I feel generally “wrong”.
This isn’t just tiredness. This is a special (and possibly unnecessary) kind of Weary.

Looking back I think I’ve always struggled with episodes of burnout. School knocked me out, and by the time I was 16 I was too confused by and terrified of what the outside world expected of me to continue formal education. I tried for another two years but it was disastrous and I spiralled down into an unhappy mess where just about everything felt like a struggle. In the interim 30 years (for most of it unaware of being autistic) the burnout built into something that these days never really goes away. I’ve bullied myself into too much and now I’ll never recover.

Autistic burnout can be hell. Its effects are so vast on all aspects of life that it’s not straightforward to explain.

At best it can be disruptive, inconvenient, irritating, frustrating and exhausting; at worst it can be devastating, life-limiting and depressing, with chronic health and mental health problems. I look back at lost time and cry.

Then there’s the relationship fallout.

I can’t allow myself to spend too long dwelling on how much this burnout affects the lives of my loved ones because that would be futile. I can’t fight it; it would only make everything worse. And a big part of my burnout is connected to my intense, internal – socially conditioned – pressure not to fail, and modern ideas about what success is.

I am also burnt out partly because I am thinking of others, I do think of others, I have always thought of others and it’s ruined me. I wish I thought it was worth it but, but for a few exceptions, I don’t think most people have noticed the effort or regarded me as thoughtful about them at all. I now focus entirely on my life at home with my husband and the youngest child we are still responsible for and our two grownup children. They are my world. They get everything (although it may look paltry in comparison to the actions of other parents) and I have no energy left for anyone else. This is not a conscious choice, this is just how it is. Energy is at a premium.

Ah, Energy. To me that word means so much. Because I have several different kinds of energy and some days all of it is absent. On other days I have the energy to cope with certain things but not others. Some days I am mentally energetic but can’t walk uphill. Other days I am physically able and want to go for a long walk but can’t face having a conversation. Some days I have vast and impressive problem-solving energy and can answer tens of emails and texts but can’t make the bed or remember to cook tea before 8pm. Some days I can do everything and still smile and chat. But that’s not often these days. I celebrate those days with the deepest of joy.

The constant anxiety around expectation and a life spent meeting it, has eaten away my strength and health. It’s only now in middle age that I can see just how massively devastating expectation is for autistic people. We are often confused by so many conventions that don’t seem necessary to us but we keep on trying to please until we lose sight of who we are – especially if we see ourselves as non-autistic and just basically failing. The constant strive to fit and to meet expectation and never being true to oneself is completely the wrong way to live. I am ruined. Who am I???

These days, sadly, it only takes a tiny trip out of my comfort zone to put me into recovery for days, if not weeks. Anything that upsets me or strains me and takes a huge effort will take longer to recover from. And yet those around me see something resembling conventional functioning and have no idea of the effort involved and so of course don’t understand the subsequent down time required.

Everything is affected.
Every part of my life.
Everything.

I don’t have friends anymore. I can’t be part of anything because I am now so terrible at maintaining the to-and-fro that is essential for relationships, and people have understandably given up waiting for my reciprocation. I am inconsistent and my physical and social energy no longer match my enthusiasm. My willingness and my optimism have been pitted against my burnout for years and my track record teaches me that it’s not worth bothering other people with me.

It’s not my choice to have no friends and it’s heartbreaking, but a lot can be read into my silence and invisibility when people subconsciously expect so much from each other physically. And that’s the biggest problem of all: people don’t realise the weight of their expectations because they are not aware they have such huge expectation and that their version of friendship is actual quite energy-draining and physical for me. For autistics.

The socialising that means actually turning up for things – and preferably on time (Rachel might cancel, might say “no” might be late, might be uncomfortably quiet)…

The phone calls on a whim because someone fancies a chat (Rachel doesn’t answer)…

The to and fro chats across a table with noises going on around us (Rachel can’t sit still, is distracted, struggles to talk)…

Trips, concerts, weddings, shopping, days out (Rachel won’t travel far from her home and won’t go anywhere without her husband)…

What’s the point in having a friend like me?

I don’t get invited to anything anymore and it’s excruciatingly painful to see photos on social media after an event and know it wasn’t worth bothering to invite me because my behaviours in the past have given the impression I don’t care, I’m disinterested or simply too unreliable. I am in bits now thinking of how my absence is translated into disinterest. Looking like I don’t care is so far from the real me who cares so very much about everyone that I ache with sadness.

Burnout means plans can seem mammoth, talking can feel really physically taxing, and pushing myself to meet expectation can feel that it’s sacrificial to my health.
There are days when things are quite simply impossible. The inertia can be suffocating.

In a previous post I mentioned how pushing myself into something I’m not ready for is like trying to enter a force field. I feel physically unable to move because I am too burnt out to do something others find simple.

I’ve perfected the art of life without a plan because I simply can’t always choose how my day will go.

Choice. There’s a luxury.

So here I am with my pills and my three cups of tea that my husband brings me each morning, trying desperately to wake up. I can be awake for several hours before I can cope with a conversation because I can’t hold onto or process verbal information too well until late morning. I may open my eyes at 7 or 8am but my first interaction with a human might be 11am. I need periods of sloth-like behaviour with slow moves and often isolation. And it’s not just accommodating other people’s words that’s difficult, it’s also difficult to accommodate their presence.

I usually can’t eat in the morning. I’ll eventually have a small, late breakfast if you can promise me I can have it in solitude but otherwise, no thank you. I tried forcing myself to have breakfast every day a couple of years ago but I’ve since given up.

I’ve learnt, reluctantly, that the best way to live with burnout is to live with it: go with it, don’t fight it, listen to my natural rhythms, don’t force anything. Burnout is a big fat NO, a huge great ENOUGH, an in your face STOP IT. It’s not an enemy, it’s not to be fought, it’s a reminder that humans are not invincible, and that pretending, pushing oneself, comparing oneself with others and fitting in are really very unwise. Doing what others expect of you (and what you think is expected of you) leaves you with confusion about and no energy for what you really want to expect of yourself.

I have a ongoing sense of “What was it that I wanted to do?”

Accepting lost days is incredibly difficult. Feeling inactive and unproductive is not something that comes naturally to me. I am unrealistically ambitious and optimistic on a regular basis, and see life and the world as chock-full of opportunities, activities and things to get passionate about. It’s hard. It’s so very, very hard. Believe it or not I do still want to do everything.

Encouraging and applauding aspies and autistics for fitting in and being conventional, for holding down a 9-5, for functioning as “normal”, for affecting great socialising skills, for being independent and self-sufficient comes at a price because for many of us these things take too much – far too much – and are not sustainable. It’s Iike saying “Well done for not being you!”

It’s not that you’re asking too much of autistic people per se – in fact, much is possible – but that you’re asking the wrong things of autistic people.
We are burning out.

I’ve been suffering this way for years but just didn’t tell. I’m telling now. Because you really should know.
And the reason you should know is two-fold:

1. Because if you know me you should know that I am not unsociable or uncaring or a loner or any of the other things associated with people who withdraw from society.

And

2. Because there are thousands of others like me who are suffering and will continue to suffer and may not know until it is too late that they weren’t meant to conform, adjust and work so stupidly hard for a lie.

I’ve said it before and I’ll say it again: never underestimate the hard work an autistic person has to put in to fit into your world. Never underestimate that or the fallout that is inevitable. Think about how so much of life for autistics is all about “Well done – you’re managing to not be like yourself again!”

Have you any idea how tiring not being yourself is? It’s counterproductive. Anything that might not have been seen as autistic about me but perhaps just a quirk has become exacerbated by the trauma and exhaustion of the lifelong efforts to hide it, and now plays out as a disorder. I am more disordered the harder I try not to be. I’m am more introverted the more I try to socialise. I am less satisfied by life the more I try to “get out more”. I will never get this right because The Model For Life we’re all given by modern society, films, books and TV is based on not being autistic, on not having my levels of anxiety, on not needing so much space, on not getting ill from trying to be conventional. People’s ideas about being a good friend will always clash with my energy levels. Tiny worries will now always exhaust me days after they should have been forgotten.

I believe very strongly that I will now live in burnout forever, that there is no escape because there is no escaping society.

There is such a thing changing society though. It can’t come soon enough.

Occasionally I will forget just how badly and by just how much society has damaged me, and just how limited my life has become, and I will find myself making plans I can’t fulfil. Then I become upset and distressed at the time lost on effort and preparation for what will slowly become evident is unachievable. These are awful times, heartbreaking times. I become swept up in self-loathing, thoughts of failure and anger at myself for even trying. I can be angry at the world too, for not supporting me, for not stopping me, for not appreciating me just as I am.

But mostly I remember I am just another middle-aged autistic wife and mother with burnout, who has to understand herself, look after herself and be kind to herself in a way the non-autistic world simply doesn’t have the rule book to be able to do for us. Yet.

Ode to my executive functioning difference 

I made a list of “Things To Do”

Hoping it would see me through. 

Simple things and normal tasks.

With time to take – each one was marked.

Basic jobs you do with ease

Instinctively in twos and threes.

But I must do them one-by-one. 

And check my list to get them done. 

To keep an order is the worst. 

Whichever task shall I do first? 

And where on Earth does my time go? 

How others cope I’ll never know. 

At lunchtime you might find me sat

Half-dressed with jeans upon my lap.

Lost in thought, off-list again – 

Distracted by my tangled brain. 

 
That’s not to say my brain is bad 

Or wrong, disordered, faulty or mad.

It’s just my genes – I’m made this way

To live a slightly different day. 

Give me one task – serious and long

That I may truly focus upon.

And then you’ll see my mind works well

When released from daily domestic hell. 
 

What is Autism?: Extremes of Normal Humanness. (Do The Maths)

Today I’m wearing tumble-dried knickers. Tumble drying knicker elastic changes the feel of it significantly enough for me to spend the whole day being aware of it touching my skin. As underwear ages it becomes more and more uncomfortable and I have to throw it away. You can’t spend your life being distracted by knickers! 

I am an adult autistic. We can manage these nuances and not speak of them. You won’t know what other “feels” I’m dealing with generally. But if I wasn’t able to control what I have to do to make my life more bearable you may very know all about it! Autistic people put up with a lot before they cry out in discomfort. 

Autism has been in the news again recently. This time because a celebrity couple discovered their twins are autistic. With clickbait headlines about grief and despair rolling through social media, I avoided reading or watching any of it. I saw other people’s comments and decided I didn’t have the emotional energy to deal with just how crap it would make me feel and how much fight it would take to recover. And, to be honest, you never completely recover from derogatory language. The ways the outside world talks about autism hurt and offend me and other autistics deeply and yet no one asks us, they ask the non-autistic “experts” who don’t know – those who rarely, if ever, speak for us. Judgement and inference from observation and text books are not the same as direct experience. 
We often feel as if you think we are locked in a room with a one way mirror and it’s okay to observe and speak about us like this because we are somehow other or elsewhere. We are not. We are here, among you, part of you, your words insult us. 

It is assumed autism is based on a system of things gone wrong. It isn’t. 

The negativity, the focus on disorder, on words like “illness” (wrong!), “disease” (wrong!) and on the parents (oh, please…) is all too familiar and I can’t cope with anymore of that right now. 

When people think of “severe autism” they are often thinking of those who have a severe mental or intellectual disability alongside autism; those whose learning age never reaches above that of a young child, those who may always struggle to communicate or be understood. Severe mental/intellectual disability is not autism. It is sometimes a comorbid condition but it also exists outside of autism. It’s important to see that these are conditions that can be separated. 

 I would be devastated beyond words if anyone in my family grieves about me being autistic. My diagnosis saved my life and my sanity. I love how it removes all the other labels that didn’t fit and describes me instead as someone who’s been coping with too much for too long. In fact there are many people I wish had been around a bit longer to receive the news and hadn’t disappeared from my life thinking I was [insert alternative negative labels here]… 

FACTS: 

Children inherit autism from their parents. To be autistic means that one or both of your parents is autistic themselves or carries enough autistic traits of their own to pass them on to you through their genes. This could be the irritating stuff such as aversions to bright lights and noises; the (potentially!) manageable (though often misunderstood) stuff such as social exhaustion; the disorders such as anxiety; and the good stuff such as attention to detail and ability to hyper focus and get things done. In fact, many parents of autistic children aren’t aware that they themselves are also autistic because they only see the extremes of their child’s struggles and can’t see the other stuff. It’s a big old complicated spectrum and worth getting to know about properly from autistic people for the sake of autistic people. And not just one or two. 

We are all extremely different. 

Understanding and accepting which traits an autistic person has most strongly, and accepting and adapting for them is how to live with autism. 

It’s the same for anyone. All humans. Each individual part of me that my assessor used to make up a picture of autism is something other non-autistic humans can relate to. I know other people who relate to my anxiety or my social exhaustion or my distress at sensory overload or my habit for getting lost in a task or managing time badly or struggling with poor executive function. Other non-autistics have traits that are on the spectrum which I don’t have. I’m not obsessive about a special interest and yet I know non-autistic people who are, I am not funny about sitting in the same seat in a familiar place and yet I know non-autistic people who are, I’m not frightened of change and yet I know non-autistics who are. I don’t have a problem with sarcasm and yet I know non autistic people who struggle to recognise it. 

There is no stereotypical autistic or stereotypical non autistic.    

And, importantly: 

It’s not autism in itself that’s painful.  

It’s an extreme of any of the less manageable traits that’s painful, it’s lack of understanding and facilitation that’s painful. It’s often lack of preparation or willingness to change and absorb new ways of thinking by people who are imposing upon autistic people that is most painful. 

Switching your thoughts to “Oh heck – I can see now how that really bothers you, exhausts you, repulses you, I must try to avoid over-exposing you to those triggers” is like medicine to an autistic person. It’s something I instinctively do for my loved ones even though they don’t have autistic diagnoses. 

Don’t try to make people fit and then grieve when they don’t. 

Autism is about maths. It’s about adding up the different ways life affects a person, adding up the intensity of each of those traits, and if the figure is a high one then they are autistic. One autistic person’s life could be entirely different from another’s because the traits that add up to make them autistic and the intensity can be completely different. It’s the same with all humans. It’s not about a disease or a malfunction – and for thousands like me it’s not about a disorder (I have anxiety disorder and sensory processing disorder within my spectrum of autistic traits but being autistic itself is not a disorder). 

It’s about some extremes of normal humanness. 

I prefer to think of autism as a collection of nuances – including some disorders – that can be individually present in all humans. Sensory processing disorder – when any or all of the senses can respond to stimuli in an extreme or intense way and cause distress or feelings of being overwhelmed can be present in autism but it is not exclusively an autistic disorder. Non autistics can suffer with it. Social anxiety disorder can be a problem for autistics and non autistics alike. Social anxiety can also not be a problem for some autistics who display little anxiety when socialising.  

This doesn’t make autism on a line with autistic one end and non autistic the other. You can’t be in the middle and be a bit autistic. It’s more like a 3D Venn Diagram where all our behaviours, traits, nuances and struggles are in bubbles and if enough of them overlap then we are autistic. 

We are the ones with the highest numbers of overlaps, we are the ones with the biggest number of struggles coping with social norms, we are the ones most bothered by rules that don’t apply to us, we are the ones coping with the extra feels. We are the ones who are quietly and not so quietly often very uncomfortable. 

And we are not locked in or locked out, we are in the same room. 

Deal with it. 

Don’t grieve it. 

I Am Autism

I am all your fears multiplied 

I am all your senses intensified 

I am all your blinding lights in agonising magnification 

I am all your irritations quadrupled 
I am all your needs made life or death 
I am all your demons emboldened 

I am all your plans unstuck
I am all your sleep disturbed
I am all your time stolen 

I am a constant storm 
I am too much wind, too much rain
I am too cold, too hot, too buffeted  

I am “look at this”, “look at that”, eye for detail, nose for detail, “food’s gone bad” 

I am your calm denied
I am honesty at all costs
I am fairness at all times 

I am all your conversations distracted 
I am your tiredest morning every morning
I am at once too much and not enough 

I lock you in when you are out and release you when you are in 
I am too full of noise and too quiet 
I am not so much different as more 

I am the warrior within; the inner strength you cannot see
I am a desperate thirst for knowledge, for proof, for fact

I am all you are always 
I am never apart from you

I am the wild stallion you tried to make cart horse  

Let me run and you will see 

I am Autism 

MELTDOWN: “Greater Force” versus difficult 


“Meltdown” if you’re autistic is the culmination of too much coping, too much stress, too much internalising; too little opportunity for repair, too little understanding, too little time being true to one’s needs.

It’s a powerful rebellion of the inner self, of the true needs of the autistic person. It’s a reaction, a cry for help, an explosion. It’s a need for release from what’s going on now or what’s gone before. It’s an immense sensation that something must give, must break, must end. It can manifest as a strong – if not totally overpowering – need to escape. To rip a hole in this current life and run away.

There is often a sense of a Greater Force beyond our control creating havoc, making life especially difficult and of life conspiring against us.

It’s not a hissy fit. Please don’t say it is. It’s important.

What it really is is an inability to see soon enough that we’re asking too much of ourselves or that others are asking too much of us.

We might react to an immediate environmental or personal impact upon us. We might scream that life or a person is picking on us (it sure as hell feels exactly like that) but what it really is is too much expectation. Too much difficulty. Too much pain. Too much…

Like a belly so overfull it makes you vomit because there simply is no room for anymore, the only thing to do is let it all out or implode.

I see myself trying to carry too much – metaphorically and literally. I watch as I drop things, as I disappointment myself, as I hurt myself, as I become overwhelmed.
I feel a rising tide of everything pushing against me and I rarely remember to stop soon enough – or I am simply not permitted to stop soon enough.

There is no Greater Force conspiring against us.

It’s just too much. It’s too difficult.

But goodness only knows what the answer is.
Another world? Another time? Another set of rules?
Another way of thinking about difference and need?
Some kind of permission for better clarity from autistic people for autistic people and a language based on acceptance and empowerment that allows for difference to be accommodated and embraced is certainly needed; that allows for us to feel safe to say we want change, we want you to change and we want to cope on our own terms. And an end to this feeling that we were not made for this world or that we should try so very hard to not be ourselves when we and the world were very much made for each other.
It’s okay to say it’s too difficult. It’s okay to say your way is not my way. It’s okay to say I have to do a, b or c in order to survive.

But it’s not okay to be in a place of meltdown not knowing that all it was was too difficult, too unsuitable, and we should have been

allowed

to

Stop.






Flat on the Mat

I’m tired from things I had to do – that you didn’t make me – you were just being you.

I’m all used up from pushing so hard – to get there, to be there, to go the nine yards.

Again and again the pull of the norm; the done thing, tradition, weathering each storm.

No one knowing how unnatural it felt to never have nothing but what’s in my head.

So quiet now is needed more than before to make up for years of locking its door.

Taking what’s needed like a famine starved hound and taking extra while hitting the ground.

How long can I lie here? Can it please be forever?

I don’t want to be like That again ever –

That busy and shaky and buzzy and tired, and hopelessly desperate because I’m not wired

Like you and like them and the ones who set rules. Who mingle in parties and offices and schools.

Applaud me for trying, for getting a first on how to behave though it made me feel worse.

But please understand it took more than too much and I’m not even me now it sapped me such

That here I am begging: “I can’t carry on but I can’t even tell you because it feels so wrong – To crave that much quiet and empty and slow.
And will you understand?
I really don’t know.”

Anxiety is a Bastard 

Anxiety

Anxiety prevents me from speaking my mind. And on the rare occasions I do, it prevents me from backing myself up, despite being bright, opinionated and strong-willed.

Anxiety prevents me from entering conversation that means a great deal to me, about things I have some knowledge or experience or a great passion for.
Anxiety stops me saying words I want to say to you, to him, to her, to them, to the world. It holds my tongue.
Anxiety prevents me from standing my ground. From standing up. From being proud. From being counted.
Anxiety does not let me be the person on the surface that I am inside. It does not let you see me, it’s does not let you hear me. It does not let me fight.
Anxiety does not let me give you everything I want to give you nor everything you want to give me.
Anxiety makes me look weak though I know I am strong.

It makes me look cold though I know I am warm.

It makes me lose words though I know I have many. So, so, so, so many.

It makes me hate me though I know I am loveable.

It makes my world small though I know it is vast.

It keeps me awake though I know I am tired.

It keeps me active though I want to relax.

Anxiety steals, and breaks and hurts and lies.

Anxiety is a bastard.
An absolute bastard.

I will never beat it. But I know it is wrong.

Life in The Wind Tunnel

I don’t mean to be self-indulgent but I feel this needs to be said. It’s something I keep not saying completely but it’s so huge. 

As 7th April is my 3-year autismaversary and represents the culmination of 3 years of deep thought, realisation and listening to others who deserve a darned site more understanding, I need to say something apparently simple and maybe obvious but incredibly important: 
When you’re autistic, you don’t have a choice about what bothers you.

Life blares at you and glares at you. Some things torment unbearably and create uncontrollable inner turmoil but you are told to “suck it up”, to “just don’t let it bother you”, that “it’ll soon pass” and other unhelpful crap. Or told to look at things from others’ perspectives when that’s all you’ve been doing all your whole bloody life long. More sympathetic people give you well-meaning hints about mindfulness, about coping, about letting go or about what works for them. Mostly about not being you. 

But. A lot of autistic people instictively know how they will feel safer and less tormented. They will have a safe activity, a safe sound, a safe place that they will escape to or attempt to escape to. We effect habits to release ourselves often without knowing we are doing it. 

My safe space is my mindfulness, is my coping, is my letting go. I’m clever enough to have worked this out, worked on it and solved many of my life’s coping problems, and gradually created a personalised fix for overload and anxious thoughts. It is what works perfectly for me and my inbuilt feeling of needing to escape, and it brings the greatest peace, joy and healing. It’s my pills, my alcohol, my sweet tea, my hug, my long hot bath, my counselling session, my night out with the girls, my retail therapy and my big long scream at the world all rolled into one. I know how to fix myself, I know how to keep going, I know how to find calm and peace and I am so so happy that I have found self-acceptance and a way to be me, safely and naturally. 

And breathe… 

But if my safe space and time in it is interrupted, I am distraught as if I am being denied oxygen. I literally breathe in short shallow breaths. My heart beats too fast in an attempt to cope. I am massively affected. 

I don’t choose to be massively affected by having my safe space invaded, I don’t choose to be completely beside myself and panicky. I don’t have a choice. I need a safe space and I need peace. When it’s compromised I can’t cope. It’s like cutting off my oxygen. Really. This one’s not something to meditate through. 

I’m not like everybody else. I am highly highly tuned to everything around me. I need somewhere where I can tune out from humans and society and tune into nature and wildlife. Autistics need their thing – whatever that is – that they can tune into like an empty engine being hooked up to fuel, like a dry desert lying in heavy rains. Like a starving baby being reunited with its mother. Each one of us is different and needs a different thing, but we need something that lets us out of the constraints of a non-autistic society. 

It’s as important as air and water, and without this I suffer from Safe Space Famine and become agitated. 

Something is giving me palpitations right now, it’s making me feel unsafe, invaded and rather rattled. There’s nothing I can do about it and no one I can complain to. I’m lost and alone and pacing and wondering if this will be the time I fall. 

It’s the story of my life. 

Coming down from a bad couple of hours one day this week, when everything began to feel more lucid again – in fact, perhaps the height of lucidity as everything fell back into place and the latest storm cleared – I explained being me to my husband:
‘It’s like having vertigo and having to spend your whole life always living on the edge of a cliff. Always terrified. I know where I will be safer and suffer less. I want to be safer and suffer less but I’m not allowed to move away from the edge and be calm.’ 

And while I see this as an abnormality in my brain if you like, I want to accept it and live with it. I’m not going to change so I need my environment to change. I need to be allowed to move away from the edge instead of fighting vertigo or learning new climbing techniques on top of everything else I battle and absorb and internalise. It’s as if I accept me but life around me doesn’t. 

I said it might be difficult to understand if it’s not something you feel yourself but he said it explained very well what he saw me going through on a regular basis. I think he is beginning to see that getting away from the edge is the best and the fairest thing. 

Of course he can’t completely understand. The kind of chronic anxiety, sensory onslaught and inability to filter things out that I suffer from is not easy for most people to really process. And the needs I have are not easy for most people to understand: 

No sudden noises, no surprises, no practical jokes, no telephones ringing, no unexpected visitors, no unexpected noises or voices when I’m alone. No repetitive or constant noises that overwhelm or compete with other sounds. 

No throwing me into situations I haven’t prepared for. 

No invading my safe space. 

Space invaders not welcome. 
Autistic people need to be allowed to choose their safe thing, their survival technique, their way to live just as everyone else chooses not to live in a wind tunnel being pelted with rocks with heavy artillery noise firing around them all the time. 

“Hey just get a stronger hair tie and wear a suit of armour and some ear defenders! Suck it up! Learn to live with it!”  

No. Get the hell out of the wind tunnel.  

Am I making any sense? 

Peeing Standing Up: the trouble with autism “awareness”

The trouble with Autism “Awareness” 

Where is the integration, the facilitation and the understanding? 

People say they’re “aware” but they don’t facilitate the differences, and open their minds to how life could be so much easier for us. This is why I see acceptance as so much better than awareness. 

Being aware but not providing means for autistic people to function is like expecting women to use urinals. It makes us seem more faulty than we are because we’re always struggling with how to cope with systems that don’t include our needs. 

A lot of mental health problems in autistic people are as a direct result of living the wrong life. 

How about thinking; ‘I can see how this might not suit you. You shouldn’t have to do this’ ? How about asking what you can do to make life more comfortable rather than assuming  there is something wrong with us

I originally wrote the opening comments above in a group for autistic women. We are diverse, interesting, wonderful, inquisitive, emotive women from all walks of life with vastly different experiences of life and vastly different personalities and opinions. The support and acceptance between the women is truly lovely. We have lots in common and we have lots not in common and there are heated disagreements but I’d say the pervading themes are of frustration at a lack of understanding and exhaustion from living in a modern world that doesn’t try to accommodate us or alleviate our pain. 

More non-autistic people are pleased with themselves that they are now “aware” of autism, and – bless you – you all “Love someone with autism” 😖 … thanks for that… but that doesn’t mean more people understand or listen or are prepared to challenge themselves on their own actions and assumptions. 

As if I Shouldn’t be this Way 

My head is fine – I checked: it’s good.
I tapped – knock, knock: knock, knock on wood.
I wondered what you thought was ailing:
Too honest? too thoughtful? too dreamy? too feeling?

I made a list. What is the worst?
How am I wrong? What should come first?
Too Not Like Everybody Else, but how?
In subtle ways that hardly show.

Fitting this world while I’m told I’m not.
A puzzle piece, apparently, not finding a slot.
You’re puzzled by me and you think it’s a shame.
But it’s just your brain not getting my brain.

Language chosen to hurt and label.
To create a discourse: ‘You are not able’.
Words not chosen with thought or care
Problems invented that are not there.

‘Don’t be like you, be like me,’ you say
As if I shouldn’t be this way.
But this way is me. Work harder to like it.
Instead of teaching me to fight it.

Take your “Disorder”, your “Disability”,
Stick it up your arse. Don’t apply it to me.
Years of burn-out now ensue.
From thinking I should be like you.

I own my mind, my thoughts, my brain.
No two humans should be the same.
When space and light and peace are mine,
I really couldn’t be feeling more fine.

A blend of individuality that makes up me.
I only see fault with society.
Don’t bother that you can’t make me fit
That there is my problem. That really is it.

Surviving this negativity is quite a feat.
So
Knock knock.
See? – I’m whole and complete.

Autism awareness month (April) is upon us again. For hundreds of thousands of autistics – particularly we adults who are able to “own” our own autism and do not have to suffer at the hands of well-meaning (and not so well-meaning) non-autistic “experts”, the Autism Speaks awareness campaign is a harmful and insulting campaign with unpalatable ideas of a cure, and focusses on insulting and distressing notions of faults and fixes rather than the education and acceptance that society needs.

Please don’t be “autism aware”. Please don’t “Light it up blue”. If you do, you clearly still have A LOT to learn. Please educate yourself with the words of autistic people themselves. We are all different and we have a lot of experience to pass on.

Twenty (ish) Reasons Why I can’t Possibly be Autistic*

shutterstock_396064966

  1. I’m not a boy
  2. I’m not a child
  3. I can and do empathise
  4. I’m not a genius in any field
  5. I don’t have a savant talent
  6. I like people
  7. I don’t rock, flap, jump or visibly stim
  8. I don’t have obvious meltdowns
  9. I shower and wash my hair every day
  10. I don’t have an obsession with space like the boy I knew at primary school
  11. I like fashion and think about what I wear
  12. I have brought up 3 children
  13. I don’t hit people
  14. I could talk and communicate at a very young age
  15. I’m not fussy about food and I love strong flavours
  16. I understand sarcasm and don’t take everything literally
  17. I am perfectly capable of accepting other people have a different point of view based on their experiences (even though I often wish they wouldn’t!)
  18. I love hugs
  19. I love hugs
  20. I love hugs

Hug me

(Make sure you’ve washed first)

Okay now leave me alone for a while 😜

What are yours?

*and yet I am

Autistic Woman and the Public Persona

I’m out, I’m dressed, I’m bright, I’m smiley. Eyes twinkling with mascara and positivity.

I’m active and alert, acknowledging, nodding, talking. I am efficient. I am cloaked in my efficient persona. I have rehearsed this. I will smile and I will be genuine because I am set up for this.

I’m not fake. This is me. I am real. It is not a mask or an act – but it is an effort and it is only part of me.

The other parts of me are quiet and thoughtful and closed off:

The watchful me, the imaginative me, the creative me; the me that likes to plan and plot and design and reorder and construct and renew and appreciate. The me that needs space away from others to think straight and to survive.

The recovering me, the aching, sore-bellied, groggy me; the me that pushed to make life easier for others and drove herself on adrenaline and internal pep talks and constant alertness to get things right. The me that gets ill because society doesn’t run itself for me. The me that pops beta-blockers in the night to try to cope with all the replay and self-deprecation and the panic about what’s to come and what went before.

The live-wire me, the musical, singing dancing, gardening me; the me who forgets the time, gets lost in thrills and who has a unique surge of productivity that sits so badly with the conventional work day. The me who loves what her imagination and inspiration comes up with.

I am so much that is not bad but that grates painfully up against the social order and that has its own clock.

I will fit. I do fit. I make myself fit.

And then I hide, I curl up, I crawl, I don’t speak. I think and I think and I think.

And then I lengthen and strengthen and stretch towards a life I know I can only take in bites. And boy do I bite it.

And that’s how the public persona survives. Like a symphony of contrasting movements and dynamics and all the rests in between.

Love the autistic woman’s public persona for she has worked hard to perform it for you. But love the whole of her, love the composition and the composer, the way the magic works and the how the best movements are the ones you don’t notice on the first performance.

“What price, creative souls?”

I draw three fingers gently down a page of sheet music and examine the dust. I left it open weeks – months – ago as a “Come and play me” but every day and every glance the pressure to do something else or the realisation I didn’t have time (my own fault: I didn’t make time; I didn’t complete other things quickly enough) won. I look at the notes and sing them in my head as I think of shopping and check the time yet again. Too bashful anyway to make a sound when I’m not alone. My camera is the same: dusty, waiting, unsure of its future. My imagination floods other worlds into my head, people I’ve never met appear to me and words unfold never to be spoken, never to be written. To be creative, to be musical, to thrive on sounds and words and images that I am part of, that come at my own pace, but to live in a world where sounds and words and images are now a media bombardment, gives me a sense of worthlessness: “We don’t need your creativity, Rachel,” the world seems to say, “Do something more useful. We have TV, we have radio, we have famous musicians, famous authors, big money stuff that draws respect.” Creativity that once served like a gentle, loving gift is now owned, branded, thrust upon us. 

To just do, to just feel, to just enjoy has become pointless. 

So here I am. Left. Frozen in moments. Waiting for the time when it will be okay. Living a lie. Stiff with impatience and boredom at a world that doesn’t pay with joy by the experience but with the dollar and the pound by the hour.

Wondering “Who am I?” 

Perpetual Tigers

shutterstock_322463783Tiredness leapt upon me and pinned me down. “You shall neither rest nor achieve,” it growled. It had come to take advantage of a body and mind left vulnerable by Anxiety who was still watching me from the darkness, plotting and sharpening its claws. 

Fighting for their turns to tear at me; to feed from my body, their potency has grown as I have weakened. They have sucked away the vitamins and minerals I need for energy, thought and deed. Anxiety at my head, my back, my heart, my belly and my skin; Tiredness at my lungs, my muscles, my brain matter and my bones. Clawing, draining, claiming me until I fear I no longer belong to myself. 

Not vultures politely waiting for the peace of a spent body, but murderous carnivores attracted to a living being with fight and the potential to rejuvenate. Parasites slowly depleting and giving nothing in return. 

The weapons to defeat these monsters are complex and many, yet they are short-lived. They are made of paper and candy and smiles, of dreams, of songs and laughter. They can all too easily wash away in a storm. But we who have learnt how to, fold them, sing them, dream them up, write them into our lives; can conjure pictures with no monsters, and pictures where monsters are defeated. You cannot turn away from these monsters, they curl like a snake around and around but if you squeeze your eyes tight shut, balloon your chest full out with air, and hold your weapons close, you can see beyond them to all that you have that they cannot hold; all the space that they cannot fill, all the good dreams and good words. You can see sleep and a calm body. You can see paths to the light and the future. Good things are there if you can reach them.

They will come again, the monsters, they fight me still because they are part of me, within me. But I win. I will always win. Scratched, scarred, exhausted and traumatised, I always make it out alive into the light where my words and my smiles and my dreams are my own.  I own my body – even the scars. 

Ghosts

img_3545There. Right there. On that spot. We stood right there where the worst of the worst memories hung in the air, lay on the ground, and circled around. I told my little girl nothing. I teased her with taking phone photos and showed her the leavers’ photo from my year: 1986.

How many people remember the floor of their school corridor 31 years on, I wonder? How many people picture it on a regular basis? How many people had to go back years later and stand on the same spot outside the very same room. She has the same tutor room I had. You couldn’t make it up.

It took me three weeks to ask her: ‘What’s your tutor room?’
‘Room 1,’ she replied.
I’d delayed asking her as if I knew already.
I shared some brief memories but shared no pain.

We met her outside. I did jazz hands and was allowed a hug. Cheerful and chatty, we were early and hung about. So much had changed and yet so much hadn’t. The floor tiles rose up to greet me, tease me, loaded with history, with DNA, and I remembered the sounds of 1980’s shoes echoing, of voices egging on my tormentor, of books and folders slapping hard on the cold surface. I remembered her words and my reply. I remembered trying to punch her ankle and trying to shout ‘Bloody bitch!’ as she turned and left me spreadeagled amongst my belongings on the bruisingly hard floor. But my voice came out reedy and tight with self-pity or shock or from the beginnings of tears. I’m not sure which. I just remember I felt weak, ineffectual, beaten.
I didn’t cry though. I went straight into Room 1, collapsed in my usual place at the table I shared with the some of the other girls in our tutor group, and ranted a little. I was pissed off, confused and stunned.
It never happened again. She’d done it. She was pleased with herself perhaps or maybe she got into trouble for it. I never reported it, though, never complained. Maybe someone else did.

The torment didn’t stop though. The name-calling, the looks, the bitching, the drawing other girls into her campaign against me. The constant, daily chipping away at me. I was unaware that the emotional abuse was bullying too. I just knew I hated it, hated her, hated school, hated myself. I feared my every move, my every garment, too much make-up, not enough make-up, too thin, too tall, too clever, too musical? Which was it she hated the most? Who else hated me? I had my suspicions. The subtle abuse continued too: bitching loudly in groups about me so that my closest friend would come and tell me the worst. I found out I was short-sighted that year. I didn’t wear glasses but walked around in a haze and couldn’t see the teachers’ writing on the boards in class. Everything else fell apart because of how I felt about myself.
I ran a mile home for lunch every day, I stopped attending choir – although singing was my favourite thing. Teachers began to dislike me and misunderstand me. I wasn’t aware that I appeared different or difficult but they reacted to me as if I did.

I don’t think about her. Not as a person. I don’t really care about her. It’s more that I feel broken by school and those months that bruised me so badly.

Do I feel better now I’ve been back and stood on that spot again?
Yes and no.
img_3549
Yes, I’m glad my child and my husband stood grinning on those cold cold floor tiles and helped me water down my visual memories with new ones.
And, no. No because I don’t like how I feel now. I don’t like it at all.

Mascara and Alcohol: when getting away with it got too heavy. 

mascaraeyeIt was the early two thousands, maybe 2003. I was still booking things, still agreeing to things, but in recent years had gradually begun to back out of more and more plans, and increasingly clocked up more no shows; strangely grateful for a child’s sniffle or a phone call to say things had been cancelled, and yet still in denial, still making excuses, still convinced I could do everything that I wanted to do. And still convinced going out and socialising was fun, was what I wanted. The tiredness or hormones of motherhood were making me enjoy home more perhaps? Being so busy in daily life meant I’d run out of time to get ready or the energy to stay out at night, right? There were well-argued reasons for every time I chose to stay at home. I would often truly feel ill when an event was upon us and I had genuine headaches, genuine stomachs problems. It all felt like real reasons and not excuses, and so the times staying at home built up and up and up like a brick wall. And it happened so slowly and I was so good at convincing myself that it was just this once we’d cancel, just this time we’d stay home because… because… Because, after all, going out is fun. Everyone likes it. Everyone. If you don’t there’s something wrong with you. Humans are social creatures. Fun, fun, fun times…

My grandmother had suggested I was depressed when she noted my increasing insistence for staying in, staying home but I looked at what I had and I was happy with my lot. And I could always always reason my actions. Until that day, one Christmas holidays, I was sure I was making my own choices and was in complete control.

It was the Christmas period. I’d booked pantomime tickets for what was then the four of us plus my parents. Getting ready for Christmas as a whole was difficult for me, it left me in a constant state of list-making, obsessing over minutiae, sleepless nights and panic, and the extra socialising completely drained me. I had to drink a lot to cope with anything social. I thought it was the same for everyone but I was chaotic for weeks, and every moment was taken with pinning down my panic and attempting to appear organised. I did appear organised but appearing organised was actually all I managed. It was a performance so convincing I managed to carry it off for years. I once admitted to being shy to a friend and she laughed and said “You’re not shy!” I really had pulled it off! So I just kept turning up for things and drinking and talking crap. I remember telling one of my Open University tutors that I got through Christmas on mascara and alcohol, and she told me I should write a book called Mascara and Alcohol. Maybe I will.

As our children were still young, I’d booked matinee tickets for the panto. Already in a flappy state (I didn’t know I had anxiety. I wasn’t even kind enough to give myself the gift of a label those days. All I knew was that things made me flap, made me worry, made me stressful. I got stressed. I stressed out), I found myself getting hotter, trembling, focussing on negatives about my appearance, obsessing about a pimple, unable to draw that line that said “finished getting ready” and walk out of the bedroom, downstairs, to the front door. I’d got the children ready, given my parents a picking up time, my husband was downstairs ready and waiting to start the car. I’d organised every thing and every one but I was Not Ready. I would never be ready. I couldn’t complete getting ready because that would mean leaving the house and I was trapped inside a forcefield that was insisting I stay home.

I’d met that forcefield before. Once as a teenager when cycling to a holiday job I cycled into the forcefield and it span me around and I found myself heading home again. At the age of five I refused to leave the house and go to ballet lessons because I knew I simply couldn’t go. I loved ballet but I never went again. I danced alone at home instead. Forcefields existed around doors and I couldn’t walk into certain rooms or areas at school.

But all these years later I still wasn’t joining the dots and putting together the picture of someone who physically and mentally couldn’t socialise regularly.

Upset, my family went to the Panto without me. Upset, I stayed home alone. I was relieved and comforted by the escape but incredibly upset.

What had gone wrong?

I’d done what I always do when going anywhere: I’d been in control of planning everything, I’d chosen in advance what I would wear, I’d pictured us there, I’d placed myself in amongst many people, imagined the claustrophobic crush in the entrance, pictured sitting under pre-performance lights, pictured people sitting all around us, imagined being spotted by people we knew, people we half-knew, people I couldn’t remember because (as I now know) I have a degree of face-blindness, imagined what I would say to people, realised I didn’t know what I would say, and knew deep down that I wasn’t going to cope – some other time, yes but not this time. But it was deep, deep down and I wasn’t really sure what was controlling my actions. My subliminal knowledge that I’m not coping or that I won’t cope often simmers away in the background until I meet that damned forcefield, and WHAM! – can’t do this. This one event in itself was not a big thing but everything else had circled around and around until I felt that just doing this one thing was like entering a black hole.

That day was a biggie for me. I’d let a lot of people down. And I haven’t been able to trust myself since. Other people in my life no longer want to take the risk with me either and I’m rarely invited to anything. I’m not entirely sure what I want to risk committing myself to anyway. My husband will never plan surprises for me because he too doesn’t trust me. This is not necessarily a bad thing because he’s not a fan of too much socialising anyway, and I think his habit of being a grumpy, unsociable git at times is what attracted me to him!

So these days what I want to do and what I’m able to do sometimes overlap beautifully like a Venn diagram, and sometimes they stay firmly separated in their big old lonely circles. Often I will put myself through what is uncomfortable because it’s probably what’s best, other times I will actively seek out peace. Lying awake at night after an event (sometimes for weeks or years afterwards) and remembering how you cocked everything up is no reward for pushing yourself through something. It’s hell and it’s not worth the pain of clocking up yet another bad experience, yet another disaster. So instead it’s a lifelong project of daily self-assessments now. This self-awareness has given me a more joined-up picture of someone who has to carefully measure and weigh up what’s going on, what’s necessary and what’s doable on a daily – sometimes hourly basis. I have to give myself permission to make plans for fun things but I also have to be able to admit that not doing something is also okay and sometimes crucial. And I have found comfort and beauty in just being and not always seeking outside experiences. I do like time at home. I like it a lot. It’s not just something that I have had to force upon myself. It’s often something I have to fight for.

At a wedding a few years ago, I was struggling to cope and someone next to me was involving me in conversation. After a while of getting limited response from me she turned to her companion and muttered something about “…so rude…”. I’m not rude. I spend my whole life adjusting myself to people and situations in order to not be rude. It’s exhausting. Why push yourself through things if you’re so overwhelmed you’re just going to appear rude? Humans are complex beings (no shit) and we can respond very differently to different situations, and there’s nothing quite like feeling trapped in situations that other people clearly find fun and enjoyable.
There’s something about socialising less that makes you look like you’re coping less. But I’m not coping less these days; I’m just coping differently.

Important: Autism and empathy 

I wrote this in a private group but it struck me that the whole world needs to hear this: Being shocking at thinking deeply about how others might feel and not being able to look at things from others’ perspectives is not about autism, it’s called being a psychopath and it’s a human trait that exists throughout all neurotypes. Autistic people are usually highly sensitive people (as are some non autistics) and we often can’t handle how much we *are* good at this imagining how stuff feels for others, and how we need extra time to process this. Or we may even put things on hold until we have enough space to deal with them. 

I believe an autistic person *can* be a psychopath just as an non autistic can be but a lack of empathy is not a sign that someone is autistic just as empathy is not a sign that someone is not. 

If someone is not reacting outwardly the way you would expect them to think more about how timing is different in our brains and language is tied up in all this and we may want to use exactly the right words and not just plump for commonly used ones. 

Once the world stops thinking of autistics as cold, aloof and unresponsive we can begin to heal the pain caused by years of misunderstanding and this in turn will help us to feel less broken and unloved because we are incredibly tough on ourselves and the discourse around autism is often derogatory among us too as we turn in on ourselves with negative thoughts. I see amazing, sensitive autistic women deprecating themselves on a daily basis and they shouldn’t. They are wonderful

All Change 

I’m picking up her last-day-of-the-summer-holiday clothes from the bathroom floor. Greyed with fun and carelessly crumpled. Today she is wearing her brand new crumple-free uniform for the start of a new term at a new school. From oldest in a primary school to youngest in a secondary school. The stress and expense of the new uniform has plagued our lives for weeks. 

The anxiety and excitement of so much change kept her awake most of the night. Fuelled by adrenalin, her eyes shone as she said goodbye to me, keen to leave, to see her friends and share this first day with those who would understand. We, after all are not going though this as she is…. Little does she know…  I am sad and nervous and proud. This morning she had to get up and be out of the house a good 3-4 hours earlier than she’s been stirring on holiday days. Throughout this coming week there will be belly ache and a sore throat and we, her parents, will suffer the brunt of her tiredness in her efforts to cope. 

I am grateful for mobile phones and social media and all the messages passed between jittery friends in the last couple of days: “Are you wearing short or long sleeves?” “Are you getting a locker?” “Do we need our PE kit?” “Are you wearing socks or tights?” And last night: “I can’t sleep either. I’m too nervous.” This morning a phone call from someone keen to have a companion to catch the bus with. A huge thing to have to travel to school by bus for the first time after years of a five-minute walk. 

There is no doubt secondary school will change her. In what ways I can only guess for now. There is no guarantee she will be happy or unscathed, there is no certainty of anything other than this knowledge that change starts in a big way today and she will have to change to cope, and I’m not sure I’m ready for it. 

Regular but Fizzier with Extra Lemons

Always the juxtaposition of being human and feeling regular human feelings along with atypical reactions to some aspects of life is uncomfortable to accommodate when I need to talk about feelings and about coping. 

Autism is still discussed as a fault; certain things are lacking – apparently… But I’m not lacking. I’ve got everything I need to be a fully-functioning human being. 

I’m not broken. I’m not wrong. I’m not so very different but I do have different needs. I am always truly heartbroken if I pick up any hint whatsoever that I may not be perceived as completely capable, trustworthy or approachable. 

True, some things trigger problematic feelings, some things take extra energy. Some things cause ill health or anxiety. Some spaces, time-scales or expectations are too tight. The choices for how to behave and when and where are too limited for me. That doesn’t make me lacking; that makes society lacking.

I am safe, I am competent, I know how to put my children first. I know what’s important, what’s fair and how to accommodate my needs around those things. I trust my instincts and I inform myself to back those up. I doubt myself hugely on a minute-by-minute basis and make sure I am getting things better as I go along. The combination of autism and others’ perceptions of what autism might cause me to fail at means I am super-vigilant. I don’t want anyone using this against me. 

I feel perhaps in the same way that our nerve endings are right at the end of our finger tips and everything we touch gives us information, that all my experiences and my emotions are on the surface too; out there, on my skin. My joy, my pain, all my senses, the heat, the cold, the tightness of a space, the pace of life, the expectations of that’s-just-how-it-is, it’s all fizzing with messages going to and from my brain with immediacy and honesty. I’m not packing away mini reactions and mini experiences throughout the day, I’m indulging in great big panoramic gasps of life all the time. Everything is fingertips on a pinhead or sandpaper or silk or kitten’s fur or ice or a burning stove. It’s a series of wonderful and not so wonderful sensations asking for my reaction. 

And yet I must often swallow those great gulps of daily life experience, I mute the “Ouch!”s and the “Slow down!”s, the “OOOH!”s and the “Aah”s and I internalise them. I sit politely pretending to listen to someone talk, all the while wondering what the hell is going off in my peripheral vision, and then I am left with huge great big full stops. I haven’t reacted enough. I haven’t dealt with all this. I lie awake at night, overstimulated, processing everything. 

I am very fizzy. I’m bubbling all the time. The way society runs itself is really rather like someone adding a spoon to an already effervescent world and stirring fast. So I regularly and sensibly give myself a break from that great big stiry thing.

I don’t see it as a bad way to be, I certainly do not see myself as abnormal. I’m human just like everyone else. I’m just extremely  human. 

And because I’m extremely human I am extremely honest. Ironically, despite the superhero clamping down on myself I do, I actually have a greater need to react with immediacy to everything going on. I want to vocalise each emotion as each experience plays out. I want to dance, to sing, to shout, I want to echo sounds that move me, I want to enthuse like an emotive wine-taster: “I’m getting lemon zest beside an ocean!” It’s all so zingy. 

The written word makes me feel safe. My counsellor is a querty keyboard; patiently waiting for me to form the words, to tell her how I feel. So I write it. I write moments of joy, flashes of anger, hours of pain, I spill, I edit, I too hear what I say and feel purged. This honesty, this purging, this sharing shows a side of me hidden from daily life in the physical world. I know how it looks to write pain on a page. I know how it can diminish you in the eyes of some. But it’s just honesty. And it feels better for saying it, making sense of it, it feels good to be honest, to pssshhhhh out a little of the carbon dioxide that makes me fizz. Life is all about feeling and sharing. 

I’m not entirely sure where I was going with this but I feel better for saying it! 😀

No Bench

The 8-year-old girl in the playground sat on the bench between lessons and zoned out. She watched, she dreamt, she observed. She heard the games, she heard the shouting, she refused to join in. She wasn’t rude, she wasn’t unhappy. She wanted to sit still and watch. Yesterday she had joined in. Tomorrow she would play a skipping game. It was just fine to have sitting time. She would do this often. When sitting in groups at tables in class she would look longingly over at the empty book corner and imagine herself alone there. She wrote a piece for her teacher about sitting quietly alone and her teacher read it to the class. It was okay to be her, to be like that.

But sometime after that it became not okay to be like that. It was the last time she felt proud to be her. It became necessary to be always in the game, never sitting it out. Life was never that way again.

And yet I am still that girl.

Sometimes I can’t deal with some moments. Some moments are hugely loaded with too much expectation, too much thinking, too based around the speed of others’ lives and thoughts. Sometimes a moment in time can send me into a spin and my heart races painfully. I panic, I long to call on help from somewhere somehow but there’s nothing and no one. And no bench. The breeze banging the door scares me. A voice outside terrifies me. All at once I know I can’t have things at my pace with my idea of peace and I am panicked. It’s so hard to explain to anyone how after a while I just want to mend in a place where time doesn’t matter. I feel especially aware of the different human constructs – supposedly designed to help society tick over and how they grate against my own natural rhythms. I find myself making the most of a snippet of time perhaps just a minute where nothing is going on and getting lost in it; reverting back to my time on the bench and my world of quiet observation. But slipping into my zone isn’t good when it’s not backed up by other things; if it’s not made safe.

I don’t know who’s outside making noises or why or how long they’ll be there. I don’t know who is at the door. I don’t know if I am safe to walk around the house from room to room. I don’t know if I am safe to let it be known I am in. I want my time out. I need it.

Like a migraine or a virus or a broken limb or maybe a Sunday morning after a hectic week, this is a call for less action, for time out, for healing. It’s not a constant but it’s necessary and it’s necessary that it is understood.

I need so much not to be *misunderstood* though, that I hide and run and ignore because the basic need for peace and space and simple no-expectation-just-for-now-please seems too difficult to explain without misunderstanding. This is about no one and no thing but a woman trying to fit herself into a world that can often feel like a constantly spinning roundabout and wanting the time to cope with the dizziness it brings.

It is simple: I am not a machine. But I have fired on all cylinders like a machine; I have to work myself like a machine in order to be part of this damn playground. It’s a big game with a grand set of rules and I play it well, I’ve got it all sussed, but I can’t keep doing that nonstop.

So I have moments. When I’m not playing anymore. But I don’t feel proud. I don’t have anyone telling me it’s beautiful and reading it to the class and making me feel okay.

Treading Water

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“It takes so much more strength to plough with all your effort through a difficult day and to keep going than it does to surge with little toil or exertion through a healthy day appearing brighter and more victorious,” I thought to myself today.

A difficult day is all about prioritising despite a struggle to think straight, to remain upright. It’s about finding the courage to choose what is best to do and say, about when to slog on, and when and how to stop and make time to recharge.
These are the battle days.
These are the finding the strong within me days.

The other days are simply about sailing on a tide with the wind in my favour.

What did you do today?
Today I walked through a storm and I kept walking.

Three cheers for anyone treading water. Getting through these days where achievements are invisible deserves the biggest medals of all.

Could Neurodiversity Be Making Me Ill?

I’ve suffered all my life with intermittent and tricky to explain (so I don’t bother explaining) not-quite-right-ness:

Strange pains and feeling like my blood is pooling in my legs when standing.

Sharp stomach pains and exhaustion.

Sporadic aching somewhere, somehow and not knowing why.

Dizziness.

Reactions to foods, and then no reaction to the same food another time.

Feeling ill when sitting too long.

Restless legs and trouble getting comfortable or sitting still.

Wide awake when I should be tired.

Floored by exhaustion when I should be energetic.

A strange feeling – with inner ear sound effects – that at the back of my head the top of my spine is made of popping candy and if I look up I will pass out.

Fuzzy, whooshy ears.

An inability to hold my arms in the air for too long when hanging out washing.

Bashing into things.

Tripping over my own feet

Trouble with balance and co-ordination.

Vertigo without heights.

 

But all this fluctuates and there is also:

Great physical strength.

Muscles which on certain days can power up the steepest of hills.

A tremendous sense of balance, and an ability to hold substantially awkward yoga positions.

A stretchy and flexible body.

The posture of a dancer or a horse rider.

When I am well I am very, very well. I can fit a lot into one day.

I can garden like a machine

I can cycle after months of not cycling and have power in my muscles.

I can walk for miles with ease.

I can run up and down stairs several times in one day and wash and dry many loads of washing, change beds, clean the kitchen, vacuum, carry heavy shopping.

I don’t feel weak or tired or over-exerted. I just feel well, and plan energetically for several days ahead based on this current exuberance.
And then a bad day follows the good days and my head feels 2 pounds heavier, like it’s putting strain on my neck. My eyeballs ache. Everything I’m supposed to do feels like a monumental climb with heavy legs and brain fog. My memory is poor, and I’m not even clear what my intentions are. My thoughts don’t flow. My energy is gone. And I’m floored again, ditching my plans, needing to lie down and yet not wanting to lie down. Weak, shaking, losing hours. Hands trembling. Frightened of food. Wondering who the idiot was who made so many plans for me that I can’t possibly carry out… Aching. Uncomfortable. Not quite right. Totally frustrated by an unpredictable body.

 

I’ve always been like this. Completely unable to plan anything long term and unable to know what I will be capable of. Nothing specific, nothing serious, nothing long-term enough to see a doctor (apart from the exhaustion but that lead nowhere). And I’ve mostly been fairly quiet about it. Until now. I’m starting to read more and more about how autism and Asperger’s can co-occur with hypermobility problems, connective tissue disorders and Ehlers Danlos Syndrome. It’s early days for me only a little over 2 years into my diagnosis, and I still struggle to find enough information about the physical effects of my condition.

But I can believe myself now – about my not-quite-right-ness. It’s still a bit of a mystery but it’s a very real one.

A Project, Not a Day 

“I love you. I haven’t written your card yet and I haven’t bought you a present but I do love you,” I said as he left my vitamins next to my cups of tea and walked away. I need 3 cups of tea and magnesium and vitamin B supplements to get me out of bed these days.
“Good,” he answered with much weight for only one word, and closed the door behind him. He’s unwell today and we’re not planning any conventional celebration. I have painted my nails though and am working out how to cook a special meal with no oven.

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2016’s Anniversary flowers

22 years ago today: exhausted, nauseous and anxious, carrying a modest cream roses and freesia bouquet, and wearing a sale dress, I took his name and we committed to one another. I didn’t need to take his name – I had my own name but I wanted ours to be the same name and to have a family all sharing this name. In the years since I’ve thought about all the women’s own names that have been cast aside for marriage and how my own surname was not my mother’s or grandmother’s or great-grandmother’s. But their names all came from men too, and it seems to be one of the last remaining vestiges of patriarchy. Besides you’d have to go a significantly long way back in history to find a name that didn’t come from a man, and that wasn’t a topic up for discussion when I was 24 and in love.

The beginnings of tiny baby Gemma were growing inside me and I wanted us to all share a name by the time she was born. So 22 years ago I went along with tradition without question. (And being pregnant before marriage was part of my family’s tradition!)

Our relationship was over 5 years old by then, we’d lived together for nearly 3 years and we’d been engaged for 2 of those but we’d never planned a wedding. We both found it daunting for our own reasons.
In the end it was a small, inexpensive registry office wedding with no time to do anything lavish and not enough time to overthink or over-plan as I am prone to do. I’m still glad we did it that way and, knowing myself a lot better these days, I’m quite sure it was the right thing to do.
On our anniversary each year I think only very briefly of the day – it served a purpose and an important one to me but I think mostly about the years, the numbers, the clocking up of shared experiences. I think about what’s changed through our commitment and through time, about what’s been gained and who has been lost. Somewhere there is a group photo of our wedding day. It’s stuck in a box. (We didn’t have a photographer but our tiny group of family and friends brought their own cameras – and they were a talented, artistic bunch!). But I like our relationship today so much better than the one we had then and I’d rather live in the present.

It may seem an awful thing to say but I wanted to get the wedding out of the way. I just wanted to be married and get on with being married. By the evening I was not enjoying myself at all, was completely knackered and had run out of the ability to make conversation. Big events and big, long days are not for me.

But the big, long years are for me. The learning, the shared mistakes, the getting things right through error, argument and experience, the way a relationship balances over time. Boy, we’ve made some awful cock-ups – and we will continue to make new ones but I do believe we’re getting more right than we are wrong and for me this means that being older and deep in a love is a lot more comfortable than being young and in love. I am never certain of anyone’s feelings for me. I am forever afraid of losing people and often won’t work at friendships for fear of failure or rejection. But this has been one relationship I was prepared to risk all for and really work at it. We have both perfected The Right Royal Pain in the Arse, and have a most nasty, mean, thoughtless side which we save only for each other.

Result.

I didn’t expect much from our wedding day, I certainly don’t expect much from today. What I have is a certainty that through joy and pain and suffering and general life shit, I have loved someone for 27 years and somehow he has committed to me for 22 years and shown me that he loves me back and my own commitment has been repaid. So I love anniversaries and I love that we both survived another year. Each passing year that slowly becomes less and less certain through age and ill health becomes more of a celebration. I never took any of this for granted and I never will.

Throwing your whole being into one relationship isn’t for everyone but it is for me.
And commemorating the overlooked numbers like 22, and not just the rounded ones, is important too.
I am a project girl. And project family and project relationship have been two of my absolute favourites.

Happy 22nd Anniversary to me and him. And thank you, Richard, for yet another beautiful bouquet of flowers.

Intricately, Profoundly Simple 

A tiny hoverfly on a tiny chive flower

A tiny hoverfly on a tiny chive flower


We insult our own and each other’s intelligence with descriptions such as “the little things”, “simple pleasures”, and we leave ourselves wanting, expecting more of life and of ourselves. We tell ourselves little and simple should surely never be enough. We deserve bigger, better. We should have ambition and drive and strive for a place high above the simple. Little things and simple things become merely a break or a holiday from the important things – the things we should really be wanting and really be aiming for. “Big” things. 

“Complicated” things. 

The hard work things. 

And yet the not-so-simple truth is that the things which bring us simple pleasure and which we have long sort to degrade with labels of “ordinary” and “boring” are in fact phenomenally complicated, rich and interesting, and often hard to come by and hard to hold on to. 

Once we start to appreciate the complexities of the little things, the hard graft behind the simple things, and the time, motivation and aspiration needed to keep and protect those things, we can begin to see that which we thought of as important and aspirational were really just empty trophies of greed and insecurity. 

There is nothing simple about the simple stuff. 

We do not stand alone to get away from you; we stand alone to be ourselves 

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Being neurodiverse is like being a single oak tree next to a great forest of pine trees.

To live in the midst of the pine forest and attempt to behave as an evergreen all year round would be futile. The conditions are wrong for an oak. Being forever among the pines would be life-limiting and stifling, as roots fight for water, and branches fight for space and light.

But to live alongside rather than in the midst of the pines, to be a true oak; to rest after each long summer and to follow the natural patterns which are built within each living thing allows for stronger, more reliable and natural growth. It creates the perfect conditions for stability and better potential to succeed.

Being deciduous is not a weakness, it is a way of being, of growing, of recharging. It is not a developmental fault. You cannot grow leaves in winter if you were not meant to grow leaves in winter. You can glue leaves to a winter tree but you cannot stop them changing colour in Autumn.  You cannot thrive if imitation is forced

Let us stand alone. Let us rest. Let us be what we are. That is how we can keep coming back, oak trees seem to whisper in winter. And many autistic people will relate to this. We thrive on doing what comes naturally and instinctively. We do not insult you by behaving differently. We are merely surviving. (Thriving if we’re really in the right place)

Your fun thrills you and my peace thrills me.

While you are a rave on a farm, I am a picnic by the river.

While you are a rockstar on the dancefloor of a club on a Saturday night, I am a rockstar in the shower on a Monday morning.

While you are a whirlwind trip to a busy city with traffic smells and noises and bustling crowds, I am bicycle ride close to home with space and freedom and safety.

While you are shout-chatting above thumping music as the bass smacks you in chest, I am watching bees build nests as bluetits tsee-tsee in the trees, and the wind audibly shakes delicate leaves.

While you are feeling the excitement of pushing your body through white water, or high speeds or the thrill of chasing up and down great heights, I am feeling the thrill of catching a clear photograph, of seeing my first baby adder, of holding hands in friendship across a bunch of social networks and finding my tribe, my solidarity, my peace.

I am an oak.

Your forest is grand. I watch it from a little way down the slope and admire it. I know it better than you think and love it better than you’ll know. But I am not of that forest.

I am an oak. Let us stand alone. Let us rest. Let us be what we are. That is how we can keep coming back, 

We are both trees. And we are both rockstars.

When All is Grass and Tarmac

Grass-cutting motors and engines roar angrily or hum around me, depending on their distance, in this once quiet village. The land of crop-growing, hedgerows, wildlife and animal-grazing is been gradually swallowed by humans with suburban obsessions and addictions for order and sameness.

The irony of all the hard work, noise and petrol that goes into taming something we planted to tread on, lie on, look on and find peace from when animals would do it for free, and of our not planting more useful things to grow in its place makes me think we like the responsibility of this obsession because it replaces an age old compulsion to tame, control and work on the land, and this is all that is left of our natural instincts.

What a shame that such a big part of our time spent outside is so noise and fuel-filled we no longer work in nature and with the sounds of nature but against it, over it, and often despite it and to its detriment.

We don’t realise what we are missing, what we are losing. We don’t think we are part of nature, we think we are above nature and build artificial barriers to prove we are apart from nature: superior. We think we can visit nature and step in and out of it like royalty. Soon we will have lost the option to go back. And we will lie on our artificial, weed-killer lawns on a warm day, smell the petrol and the hot tarmac, hear the roar and hum of engines, watch the vapour trails of aircraft exhausts poison the sky with white lines as seemingly innocent as clouds,  and think we are with nature. But we won’t be. We will be lying on its grave.

A distant strimmer’s growl is batted off course momentarily on the wind and I hear the plaintive whistle of a begging fledgling. I hear the squeaky see-saw of a bird and try to remember if it’s either coal tit or a great tit.

I make my mind up to quietly and actively do no harm to nature for the rest of today; to sit in it. And look up bird songs.

 

Storm SATs and the fright in the night 

shutterstock_356510603Last night Storm Katie rattled the roof tiles of our house in the small hours, clattering them like plates in the kitchen of a busy restaurant. It was disturbing and troubling. But I was far, far, far more troubled and disturbed that the final 4 months of my youngest child’s experience at primary school will be overshadowed by the anxieties of testing, unrealistic expectations and hideously wonky ideas of what getting the most out of schooling are. Her curious mind, her clever word play, her creative soul, her amazing observations; her beautiful choice and use of words in writing to set scenes, evoke emotion, create dialogue, and take the reader to another world. Her thoughtfulness, her wonderful sense of right and wrong and of fairness. None of that will count. She will be judged on technicalities, on her memory of rules, on her speed of taking up these rules and applying them in stressful exam situations. She will feel less able and intelligent than she is, she will feel pressure to perform on behalf of people she has never met and she will feel her worth and ability diminish. She is already frightened and I am having to take measures to deal with her anxiety.

‘What if I fail?’

‘What will happen to me at secondary school?’

I do what I can to tell her her strengths, to praise her, to show her I do not believe in testing for primary age children, and I do not trust these tests – now more than ever. But I can’t give her back these last four months and I can not change the way it means she will be judged by strangers and future education systems because of this.

Childhood should be great. It should be fun. It should be as diversely approached as possible by all of us responsible for the care of children. It is not only wrong but cruel to see it as preparation for work and adulthood. But cruelest of all is this idea that you can set strict standards for developing minds when development in children is so spasmodic and varied from child to child. Squidging all kids through sets of judgements with the very narrowest and limited of definitions of success and therefore creating massive scope to feel failure is like trying to shove a huge great, tangled multicoloured ball of fishing ropes through the eye of a tiny sewing needle. So so much will not fit and has no hope of doing so. And why should it? Why should they?

Why the hell should they?

It’s time to take back childhood.

Bugger the tests. Yes. Bugger them.

 

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Neither This Nor That: autism identity in a non-autistic world 

img_3016Being a mum and wife and helping run a business and a home, and being autistic has created two main versions of me: I can do busy, I can do efficient. I can do friendly, capable, organised. I can get up early and get through whole days without any me time. I grin and chat and duck and dive. It’s not that I don’t enjoy it, it’s that it’s exhausting. But this is the version of me every one likes and I push her hard to keep it up.

But it’s not really me.
Real me is holding her breath.

The lack of proper breathing space catches up with me though, and I begin to fail, to fall. It’s like I’m sitting on a cliff and getting closer and closer to the edge. Days get more difficult to wade through, I become clumsy, forgetful, insanely anxious.

I panic. And the panic rises.

Like a dog I pace and circle and look for a safe place to hide and be alone and rest, but the busy me has created a void where there are no safe places for the burnt out me. Every sound around me makes me twitch. Other humans become a threat. Not like paranoia but in a dutiful way, in a destruction of my peace way. I begin to loathe the sounds of fellow humans. My body starts to freeze up because the 2 strongest messages in my brain are “Run away from this!” and “Keep coping!”

Everyone around me is unaware of how much I’ve struggled and am struggling. I stumble and scrabble and I can feel the massive inevitable drop coming, and it’s horrid, it’s terrifying, and I really don’t feel safe at all anywhere.

Bit by bit by awful bit, events get more tedious, conversation becomes less possible, sleep fails, waking up fails. Pain comes. I run out of possibilities, I lose all direction. I can not go on. I am empty, biting my knuckles, unable to eat or drink and staring into space.

Help… I’m falling…

And fall I do.

I deliberately banged my head against the garage door 2 nights ago. I hurled my notebooks into the middle of the garden – my gardening lists, my household lists, the confusion of what needs doing. All these plans. Good stuff, bad stuff, who knows? What was I thinking? I was now incapable me.

I couldn’t do shit.

I’ve felt steamrollered ever since. Flattened. Hurting. Needing recovery. It’s a long climb back up and I’m not ready.

There shouldn’t be these two versions of me because neither one is right. The me that feels like real me pops up now and then but she makes me feel guilty. I’d love to let her live a full life and wipe away the other versions of me but I really really don’t know how to let her exist and be happy. She’d have her own pace, her own needs and they don’t fit this world.

Non-perfectionists versus Perfectionists

Your assignment: Undertake 10 specific tasks tomorrow.

 

The Non-perfectionist:
Well I can see you’ve given me too much to do in the time so I’m aiming to perform 8 of those. Because I don’t want to run over into my own spare time, I’ve deleted two tasks which I consider unnecessary.

The Perfectionist:
Those ten tasks? Oh. Okay. I’ll stay up half the night worrying and planning and set my alarm earlier than usual.

 

Later…

The Non-perfectionist
8 tasks achieved as promised. I haven’t knocked myself out (and why should I? I wasn’t asked to knock myself out) but I’m happy that it’s all done. Yay me.

I’m off to do something for myself now.

 

The Perfectionist:
I haven’t finished yet!!! Can I have extra time?! I’ve only finished 7 tasks and only 6 of those are absolutely perfect! Oh I’m so cross with myself because I know I can do better! No, I won’t stop to eat. I didn’t sleep last night anyway so I feel a bit sick. I will get it all done. Boy, I’m exhausted. Stupid me.

 

Much later… 

The Non-perfectionist:
Zzzzzzzzz…

 

The Perfectionist:
Oh, I’m so disappointed with myself that all that took so long and that the last two tasks weren’t done better. I wish I were a better person. I’ll just lie awake all night going over everything and sighing hugely with my great sense of underachievement.

 

(Needed to write this today to remind myself… )

 

Pulse

No more BBC news.
No more cheap, fizzy booze
No more trolley-bumping blues
No more bargain-mad queues

The TV is off
There’s washing to be done
I have tea
I have Bach (The iPod is on)

Guitar strings plucked crisply
A fugue in my head
Preludes my anxious mind
For calm instead.

Overpowering the beat
Of a cortisol heart
Softening my movements
Challenging my part

Intricate simplicity
Demanding yet giving
Slowing my thoughts
Music for living

A tune from the past
Confident and kind
Playing memories, plucking heart strings
Time in other times

That moment in this moment
That past living here
Creating a space
A pause in the fear

To listen, to feel
Tempos setting the pace
Tranquilised neuroses
Finding my place

Autism is a garden not a THING

shutterstock_225623656Autism is not a THING

Like a bad toe or a bad heart

It’s not an ILLNESS

Like flu or cancer

It’s not even EXACT

Like a tumour or a broken bone

It’s more like a GARDEN

Or a veg plot or a window box

But instead we ARE that garden and we LIVE that garden.
We all have some of the things – yes all of us – everyone – even you.

We all have the blades of grass or the ivy or a rose or that little bit of moss that sits between the roof slates and in the guttering. We all have bits of the bits that make up autism. It’s not easy to count or measure all the bits that make it enough to BE autism, and sometimes it is no more than a feeling that everything is not right or not easy: there are too many azaleas, and too many thorns on the roses perhaps or maybe the ivy has taken over.

But it’s not even necessarily a problem until we compare our garden with other people’s and wonder why it’s different and why we enjoy or obsess about different things, use colour differently or simply struggle to conform to garden norm. Allowed the right tools and allowed to use them in our own way many of us are completely satisfied.

People who are not autistic but think they know, want to measure autism as a THING, want to tell people whether they are allowed “into” autism or not, and then try to tell people their autism makes them problematic like a disease, like a weed, like something to be managed, or even feared.

But it is not a THING. It is a way of being a human that overlaps everywhere with everyone else’s way of being a human. It’s just that people like noticing differences, and if you’ve got enough of them, out comes the measuring stick and the assumptions.

‘Ooh. I expect you’ve got too much ivy.’
No.
‘You’ll be obsessed with grass then.’
No.
‘You’ll have a special skill for topiary like my cousin’s neighbour’s son.’
No. Not even that. You’d think so though wouldn’t you?
‘But what about that film where that man…?’
Ah that film. That man. Yes. No.

I saw a film about a murderer who was wearing a green jumper once and you’re wearing a green jumper… I can’t make that connection? No? Funny that.

We do need some form of measuring if the creeper up the wall becomes too big to manage, we need some form of help if there are too many jobs and not enough hours in the day, we need some form of acknowledgement if it’s essential to our health and well-being that we be allowed to concentrate on our wildflowers rather than our window boxes.

But there is no one THING that links autistic people together like a clan other than outside perceptions. We’re just the mixture of genes that made us the individual we are. All of us.

Even if we’re not gardeners. 😉

Inconveniently Alright

When I’m here BEING ME, doing what gives me PEACE:

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– challenging myself, thinking, doing, exploring, observing, taking note, playing music, sometimes writing, sometimes not, feeling NORMAL.
When I’m going from one task to another, being PRODUCTIVE, being USEFUL, finding FULFILLMENT.
When the day runs smooth and the hours don’t gallop or groan.
When nothing seems or feels WEIRD or DIFFICULT or TOO MUCH.
When I have CHOICES and FREEDOM and I can BREATHE…

Then.

Then I think WHAT DISORDERS?
No – really – WHAT DISORDERS?
What do they MEAN?

What’s WRONG?
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What IS wrong?

What is all the FUSS?

I’m okay. I really am.

Why is this world designed for people to NOT be THEMSELVES?
For ALL KINDS of people to NOT FIT?
For people to HURT?

Why would we rather fill the world with words like DISORDER
And BROKEN
And WRONG
Than DIVERSITY?

It is
The way
It is
– they say

But it’s not JUST the way it is.
It doesn’t HAVE to be so.

It’s only the way we’re LETTING it be.
The way we MADE it be
And dressing it up as NECESSARY
Instead of letting people BE.

It’s INCONVENIENT having to think around me.
And TOO SCARY to imagine I might be RIGHT.

So, for now, I am DISORDERED
TIRED from making myself fit where I don’t
When I DO KNOW where I DO fit

I just KNOW
I’m okay. I really am
And life’s about VARIETY
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Well it’s supposed to be anyway


To tell or not to tell.

Last night I dreamt someone I was chatting to had offered me a job. He said he liked my attitude and my intelligence and knew I would be good at the job (I don’t know what that job was). Although it was someone invented by my dream, I was supposed to know him; it was someone from my past who I hadn’t spoken to for a few years. But the important thing to note is that based on past knowledge of me and a current conversation, he saw something that would be an asset to whatever this mystery workplace was.

What happened next was very close to how I react in real life: I panicked, I stumbled, I felt the answer was probably no thanks but didn’t know which part of me, my life and my personality I needed to extract in order to say no. The first thing I told him was that I have Asperger’s. It wasn’t the first thing I wanted to tell him but it was going to lead on to how and why I get exhausted easily and how and why the way I’ve arranged my life and what I do suits me better than being employed in any regular conventional way. The real truth is that I have work, and I am busy. I don’t currently have time to do anything else anyway. But me being me, I can’t separate out what’s needed and what’s not. To me everything is connected. Everything is significant, everything is important. Once I’ve heard myself say something I usually know then which bits I’d like to erase and which bits I’d like to leave in but my first reaction is to say everything that’s forcing itself to the front of my mind. (Well it’s that or nothing. Saying nothing is my other cool trick).
The person in my dream didn’t wait for me to finish my sentence though or for any other explanation. The word “Asperger’s” immediately had him physically backing away uncomfortably and nodding knowingly. I continued talking and explaining and yet he raised his hand as if to say no further explanation necessary. He feigned listening politely but I could tell he was gone. The offer was gone too. Someone who 30 seconds earlier had seen me as capable suddenly saw a liability.

Everything faded and I woke up.

Why did I tell him that?

Why do I tell people? Even in real life I tell people. It’s all over my blog, it’s on my twitter bio; when I first completed my autism assessment I wrote an open letter to the world. I wanted everyone to know. I guess I needed a “Well done, you. You’ve coped with so much.” I guess I also needed to self-obsess for a while. I’d spent a lifetime avoiding talking about myself because I couldn’t pin myself down. At the time it became the reason I had found life so hard.
But it’s not the only reason I find life hard and by no means does it make everything difficult or impossible. People told me it didn’t change me and it didn’t change who I am. It was an affectionate way of saying they knew me and still cared about me and wouldn’t look at me any differently. But it does change me and people do look at me differently and people do assume I have certain limits without even bothering to ask me.

Next time I get offered a dream job (<- autistic person doing humour), I’m going to be flattered and concentrate on the positives: someone’s noticed I have talent! (God only knows what it is!) But I’m also going to point out that I’m doing lots of things already and thanks but no thanks.

And by the way, man in my dream, I wouldn’t want to work for someone who sees autism as a liability anyway so I’d say I had a lucky escape.


Backtracking

This is the first story I wrote for my writing tutor in October 2009. I hadn’t written since school but found myself longing to write again after my father died and I needed time alone in other worlds. I’ll never know whether it was his death that inspired my writing or my starting to write but looking back it feels like it was a catalyst. And having the discipline of a course to follow was just the boost I needed. I was inspired to dig out this particular story this week when a friend shared a photo of a sculpture by Penny Hardy. I’ve asked permission and Penny has kindly allowed me to use this photo here. Many thanks to her. I’ll put some links below for further interest.

You Blew Me Away by Penny Hardy

You Blew Me Away by Penny Hardy

Backtracking

Eddie sighed, feeling old, as if retiring from his job at the rail company was another nail in the coffin. He felt silly and uncomfortable wandering around a scrapyard, looking for goodness-knows-what amongst the rust and mechanical miscellany. Still, he had to prove Jan’s friends wrong – he wouldn’t be ‘getting under her feet’. So phase one of clearing his allotment was making the shed a useable space.

He’d noticed other allotment holders had chairs and tables and radios amongst the pots on their shelves. He thought he should probably have the same and that the scrapyard would be the place to look for some of these things.

Staring at the sharp, unidentifiable rust shapes and contorted bicycle jungle he scratched his head. It occurred to him that he was probably looking in the wrong place; what he was after wouldn’t be left outside in all weathers. But he continued staring up, impressed by how beautiful orange rust looked against an intensely blue summer sky.

And that’s when he noticed a hand. A metal claw of a hand, an accidental shape created by broken and twisted bicycle spokes. The hand was reaching up out of the wreck into the sky, reaching out for help. A cold bullet of shock and sadness torpedoed through his body and his memory tried to reload images from his past. He blinked them away turning towards the small office at the entrance where he would ask for help.

Under a shelter behind the office was a collection of old school desks. He ran his hand along one, feeling the varnish and remembering his own school days. This would be perfect; great for storing his sandwiches. He wouldn’t even have to go home for lunch. Eddie found a deck chair and an old radio and took them and the desk to his car then turned back for one more look. The spokes no longer looked like a hand at this angle – just a twisted mass of wiry metal. He found himself compelled to walk back to where he’d previously stood, so that he could recreate the illusion.
How wonderful that something so useless could conjure up such a powerful image:
A human shape created from junk.

And then he was in amongst the rust and spikes, pulling. Pulling out whatever he could find that was bendable, shapable. A powerful urge to have that feeling again was taking over. He could do this himself. Something that looked like old bicycle spokes could also look like a hand, so why not arms? legs? a head? He took to his car anything vaguely malleable, staining his clothes with rust and cutting his hands, until there was no room left in the car. He would come back.


‘You’re quiet this evening’ said Jan after dinner. ‘What’s going on in that head of yours?’
‘Nothing’ replied Eddie, visualising his hoard in the shed and imagining it taking shape already. He would start with the first: Hayley, the manic depressive who had leapt in front of his train in 1970. Then Mikey, the lad who ran after his ball onto the track in 1978. He would make 7 metal sculptures in all and stand them on his plot with a view of the valley and tell them all how sorry he was and how he would carry their deaths around with him for the rest of his life.

It was three months before Jan became curious. She had continued to keep the house as neat as ever, had seen her friends as much as before and was beginning to notice that Eddie’s retirement had made little difference to their marriage after all. In fact she was feeling rather neglected.



‘It was terrible’ she heard him say as she entered the shed ‘Your poor wife, John. I read all about her in the paper. Right, you can keep an eye on Mikey, while I start Gareth. At this rate I’ll have you all together by Christmas’
As he turned to move sculpture number three next to the first two he caught sight of his wife. She wasn’t moving, her face was pale, and tears flooded her eyes.
Eddie stepped forward and Jan dropped her head onto his shoulder. With their arms still by their sides, they both trembled with the release of many years’ pent up emotion and tears.
‘You don’t forget’ whispered Eddie to the top of her head. ‘How can you forget what you’ve done to people?’ He raised his head, guided Jan into his deckchair and leant himself against the school desk looking down at her, eyes feverish. ‘I read about them all afterwards. I didn’t want you to know how bad it was.’

Jan reached up and took Eddie’s hand ‘Tell me now. Tell me everything.’


End.


Many thanks to Penny for allowing her photo to be used.
Penny Hardy has a website here
: http://www.pennyhardysculpture.com/
and a facebook page here: https://www.facebook.com/pages/Penny-Hardy/122465097936140?fref=ts

(I’ve noticed WordPress has just congratulated me on my blog anniversary. It’s 6 years old today so that was nice timing.)



Autism diagnosis: a slow, lonely crossing through the mind

Often, it’s not until a journey is over and you’re looking back at the wild sea you’ve been crossing that you realise what storms you’ve been through. 

This last 15 months has made me tired and withdrawn. I’ve had to deal with a different version of myself and life events through an autism diagnosis, and alone in my head I’ve had to take on a past loaded with things I’d hidden away for my own safety. There were lots of memories I was very reluctant to have visit me and I was cross with the past for hurting me. 

I was also (and still am) cross with and insulted by textbook language about autism and autistic people. It’s more than a little painful to hear that you’re thought of as broken, disordered, imperfect, and that something “went wrong” when you were forming from a bundle of cells years ago. Incapable of this, bad at that, struggle with whatever, can’t feel, can’t understand. Lots of subjective thinking based on non-austistics’ limited analysis. I didn’t fit it and I was confused. And yet I do and feel things I’m being accused of being unable to do! I even took on a few new traits for a while because I was so consumed by the dominant terminology and assumptions. No wonder people shy away from diagnosis and would rather convince themselves they are neuro-typical! 

It was only when I found writings by intelligent, independent, adult women from inside an autistic perspective that I found something I could relate to. No one was trying to tell me what I was and what I wasn’t anymore, and, importantly, no one was trying to undermine me with suggestions of not fitting. We weren’t lacking – this was something to be proud of! 

Dealing with things is important; it can stop you going crazy and eases the strain on your health – and it’s only fair on others to try to untangle complicated things which might be a strain on relationships – but the process is unsettling and often fraught with invisible mental battles and old wounds to be reopened and examined. It’s painful going through things alone that no one else can see. 

Like grief, it’s all about getting through, plodding on, and fighting the tide of everyday life on top of the swell of emotions, loss and sadness. Life has changed, the picture of me in my world has changed – just as it did when our father died. 

Of course, unlike bereavement, it hasn’t been all about sadness, but it has involved a lot of looking back and visiting painful memories. And there is a sense that something has gone. And from what I can gather about autism in me and others it seems the condition causes memories to linger excessively and makes “moving on” more difficult. 

I feel as if I have been swinging  monumentally between a fairly normal, average outward life of a wife and mother with grown-up responsibilities and the usual challenges of juggling finances and practicalities and the hidden world of my chasms of internal wranglings filled with such an emotional cacophony that there’s been little energy for anything else. It’s like a rocky landscape that appears all one from a distance but close up it is craggy and there are inaccessible hidden depths. 

It’s not been all about thoughts and memories; much of what I have been through has been about feeling stunned, wrecked and exhausted. There’s been a greater need than ever for quiet, space and escape. I crave a sensation of emptiness or perhaps a single focus instead of this jumble.

I often think I should have been offered counselling to help me talk my way through this but, on the other hand, I know that one more person to deal with may have been too much for me during this process. People’s words, faces and actions fill my head long after their company – they become yet another thing to process. 

So I’ve done this alone and I have felt incredibly isolated. 

It’s lonely, it’s lonely, it’s lonely; no one knows, no one can help me, no one understands.

But I feel that this more recent sense of looking back over the last year or so means that maybe I’m coming through it now, and maybe the lone path was the right way to go. 

At least I took it. At least I went. And like finding sea legs, I think I’ve found my autism legs. I often wish I hadn’t gone, I often wonder if it was worth it. But I can say now, 15 months on, that on the whole it hasn’t made life any worse (some things are worse, some things are better. The bad stuff is mainly to do with other people’s hurtful ideas about autism) so it wasn’t a bad thing to do. 

Anxiety: It’s not me; it’s you. Sorry. 

When my anxiety is getting the better of me I feel I need to say everything, put it all into words, make my own sense of it and be heard. 

Every part of this need for openness is problematic:

1. My anxiety involves other people and their actions so to talk about what is upsetting me is to criticise others – or risk making them feel they are being criticised. This results in others being defensive or hurt and my anxiety escalating. And people mistake silence for rudeness so I can’t ever get this right. 

2. People want to give me answers and solutions or explain what is going on and what is real and what is not real. This makes me more anxious and insults my intelligence. I know what is real. And I know about anxiety. I am an expert. 

3. People tell me not to worry. There are not enough hours in the day to explain why this is ridiculous but a comment like this will make me unlikely to share my fears with a person and instead make me feel ill. (Or if you’ve caught me at a particularly bad moment may result in colourful language.)

Most of what makes me feel anxious can’t be stopped. Some of it can be avoided to a point, and my self-awareness and ability to assess things enables me to judge what I feel able to put myself through at different times and in different situations.

4. People offer fixes. When you have lived with anxiety all your life and have been through what I have been through – you have researched, experimented and grown wiser – you become weary of “fixes” and weary of trying. You come full circle and your knowledge is deep.
‘I have found what works for me and what doesn’t, but thank you anyway’ doesn’t cut it for some because here I am still complaining about anxiety. Clearly this indicates to some I haven’t found what works and they feel a need to help. Really: thanks but no thanks. 

The truth is I don’t want to complain about MY anxiety, MY “problem”. I really want to complain about the world around me because I have found what gives me peace but I’m not always allowed it. Instead I must internalise the feelings and do the anxious thing. 

Currently I don’t know if and when our back garden will go back to being peaceful ever again and that is causing me to worry and to pace. The uncertainty and unpredictability of other people has always been distressing for me, and the responses required from me are exhausting – as too is the “put up or shut up” it often seems is required by everyone. I find the best way to heal and recharge is total withdrawal, and being able to escape from man-made noise is important for me. If and when I get that, I feel lost in a delicious calm. It’s my self-prescribed medicine, it’s what works.  

Several times every day, I swallow a rant that is playing on my lips, I hold back an opinion that might result in an argument I don’t have the energy for, I decide again and again and again that I can’t put my needs above others’, that I can’t voice my concerns, that I must disguise my discomfort. This in part is to do with being a woman, a mother, an adult, a responsible member of society. It’s about caring about others but it is also connected to my anxiety, and for me it is pretty constant and I wish I could retreat to my ‘what works for me’ more often to avoid this anxiety. Instead, though, I must keep on, knowing how things should be and knowing I can’t change them – and occasionally allowing myself to blurt out how anxious that makes me feel. I should be allowed that at least, surely? 

Night Picture

10.30 at night, I sit alone outside on the ground in bare feet and watch the clouds come and go over the moon. The breeze is warm and strong, and the moon seems to ease in and out in long breaths. Instinctively I begin to breathe in deeply each time it reveals itself – at first in wonder and then in harmony. Although nearly dark, the sky is still pale blue, and the very special combination of light from a full moon and light from high summer gives the clouds extra form and depth. Their edges glow bright and white. 

For the first time today the temperature is just right for me and I briefly wonder how easy it would be to sleep outside all night. 

To my right, Venus and Jupiter shine close together like two bright stars and above my head an aeroplane passes over like a lazy shooting star. A blackbird calls out one feeble last reminder that this is his patch, and as the lawn slowly disappears into darker and stronger shadow, I imagine hedgehogs and baby toads, and I enjoy losing the view of the structures and planting I have forced upon the garden – and all the thoughts of work still to do. I am simply in the night and with the moon and clouds. I feel small and weak and ineffectual and it is good because that is how it should be. 

We do not heal the past by dwelling there, but…

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Today is Dad’s birthday…

There are days, moments perhaps, when I need to listen to sad music and cry about my dad. It’s part of acceptance/healing/being human.

We do not heal the past by dwelling there; we heal the past by living fully in the present, said Marianne Williamson.

I don’t believe grief ever goes away or that you ever stop mourning those you love. And I don’t believe in pretending. So I don’t entirely support Marianne Williamson’s quote; I think emotions are far too complicated for such simplicity and I think remembering is important. We learn from life, we take hurt onboard and we carry the past as experience and wisdom, and are better for it in many ways.

But the trauma of Dad’s death and the events surrounding it are memories that harm me and I can’t work over them or through them, I need to shut them away. After years of circling distress, I choose to ignore the day he died and concentrate instead on the day he was born, and be forever grateful that he came into this world.

He was complicated and at times difficult but he had an amazing brain and amazing insight. I believe he observed life in a very special way and saw beyond façades in a way most people seem incapable of, and today I celebrate his life with a pride so huge it fills my chest. And he’s not completely gone; his children and grandchildren (and future great-grandchildren) are making sure of that.

It is not easy to shake off elements of the past while keeping hold of that which is dear to us and that which is good for us but I think that’s what we should do: live in the present but bring the past with us. After all it’s made us what we are today.

Dear Inner Guru

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Take me to a hammock, well-supported by two strong trees, in a secret destination.

Let there be no clocks, no watches, no TV, no radio; no news bulletins, no routines, no fixed mealtimes.

Vanish the engines of the modern world. Halt the wars, the greed and the destruction and the pain wrought in the name of power and progress

Tell me the weather will be what it will be but that I am safe. Make me breathe – properly breathe so I may feel the power in my breath and I may blow away old stress in my lungs.

Give me air, give me water, give me sunlight. Demand that I list what else it is I truly believe I need or deserve from life other than air and water, food and shelter. Let me carve a heart on a tree as my list. Allow me to believe I’m worth a little love.

Make me close my eyes and listen to the breeze and how it moves the things around me. Let me open them again only to look at clouds and birds and flickering leaves.
Tell me now is what matters. This is not about the times gone or times to come.

Cut the strings of the false hammock holding up my life, that I might turn off the chaos, mute the panic, drive out the urgency.

Now show me a space for calm to fit neatly where anxiety usually reigns, and pass me the book I could never before quiet my mind enough to read.

Teach me that peace is held in a hammock between two trees, not strung together by past battles and future fears.

Anxiety is disabling. It fills your head. It saps your strength. Often it is non-specific – it is a physical and emotional block. Sometimes it creates a whirlwind, and you’re trapped inside begging for peace. When the world can’t understand, can’t give you peace, you have to try to search for fixes of your own. 

I’m not at all religious but I do believe there are spiritual ways of asking for help and I do believe we have more answers than we know inside us. This is me, asking myself to help and giving myself some answers 

World Autism Awareness Day: we are not broken 

shutterstock_258287717 2Today is World Autism Awareness Day. You know about autism: you’re “aware” of autism, right…?

Like depression and other mental health conditions, and like homosexuality until very recently, autism is vastly misunderstood, feared, and seen as a disease, as scary, as wonky or as something to be cured or avoided. 

It is none of those things. It is about how our brains are wired through our genetic inheritance. 

Try and forget the word “disorder” if you can.

Through my parents’ genes I inherited a brain that puts me on the autistic spectrum. It is so not a disease and not scary and not wonky that none of us knew for 44 years. 

The main problem I have had in life is a feeling of being a little different and not knowing why. Some things have been a struggle and I could see they weren’t a struggle for others. These struggles were mainly around school and the expectations of others.  

I was forcing myself to fit was all. 

When I don’t force myself to fit – when I just get on with being me – I am perfectly happy. Now that I have read and read and read and informed myself, I am wiser.  

Just like the majority of people in the world I had a narrow and inaccurate view of autism. I’m not like Rainman, I’m not like the boy in the Curious Incident of the Dog in the Nighttime, I’m not like Don Tillman in The Rosie Project, I’m not like Sheldon in The Big Bang Theory.
Those and other narrow views caused me to spend my life convinced I was not on the spectrum. But then all the reading and the studying of the lives of real people with real autism and, importantly, of women, with their individual not matching stories made me see what a vast and complicated spectrum it is. 

A person with autism is a human being and an individual first. We are not part of a clan of people with matching needs, likes and dislikes. And we don’t have matching behaviours either!  Just like people who are not on the spectrum we all have different struggles, different senses of humour, and different views. Some of us are feisty, some of us are gentle; some of us are sociable, some of us are shy; some of us hate noise, some of us love noise; some of us have hobbies that last a lifetime, some of us don’t; some of us are creative, some of us are not; some of us like sarcasm, some of us don’t; some of us have an amazing talent, many of us don’t! Some of us can cope with being teased, some of us take things too literally; some of us have a favourite chair, some of us don’t give a damn where we sit. Just like everyone else. 

Some of us stand out as looking different, many of us don’t… etc… etc… etc… 

We are not dangerous, broken, weird, wrong or waiting to be cured. 

We just are who we are. 

The hugest problem for most people on the autistic spectrum is the preconceptions and ignorance of others. 

Sure there are some differences between brains on the autistic spectrum and brains not on the autistic spectrum. These differences can affect our senses so that some are more defined, they can affect our fear so that different situations can be more scary, they can affect our socialising because reading social cues can take place more slowly, and they can affect our organisation because doing too many things or switching tasks quickly can be difficult. They can also affect our energy and our sleep patterns because trying to not let our differences upset others is hard work. 

Some people on the spectrum have such intense difficulties that they require a lot of care and struggle to be understood and to be independent. But behind those difficulties they are a whole human being. 

Many of us don’t require much – if any – care. We simply want a world where we can live comfortably without anyone saying we are broken, inferior, or needing a fix. 

The best fix the world could give us is respect and acceptance.

We just have to be allowed to be us and not think there’s anything wrong or unnatural.

All the things that are a big deal or can seem like a big deal would be much less of a problem if people could see that like left-handedness we just have to adjust our position sometimes to do the same things as everyone else and not try to be right-handed; like homosexuality we just have to be allowed to be us and not think there’s anything wrong or unnatural.
We are all different, all of us everywhere. Human beings are complex and intertwined. Race, sexuality, size, health, hair colour, shoe size, likes, dislikes – they are all differences. Autism is another one of those differences. Big deal. 

Is it a big deal? No. Getting educated about it, putting to bed your preconceptions, seeing how society misjudged you and how you misjudged yourself is a big deal. But autism itself isn’t the big deal. It’s the way we fail to work around it that’s the big deal.

Seeing autism as a disorder, as something that has been caused like a disease, is damaging – it’s backward-thinking.

When I think of the stinking cold I am currently suffering from and the terrible night I had with burning throat pain and trouble breathing, how I am struggling to operate, I feel broken – I feel not right.
When I think of the terrible, dark days surrounding my father’s illness and death 6 years ago, of the days holding his hand or talking on the phone and listening to him talk about the progression of his illness, of his death, his funeral and the months following, I feel broken – I was not right.
But when I think about autism, about my own discovery and acceptance, I feel that society is broken, education is not right. I don’t feel broken – I feel perfectly alright.

Each and every one of us on this planet is on a spectrum of differences. When we learn to accept that and those differences as part and parcel of being a human being we can stop locking them away in categories marked “disorder”, stop looking for cures, and stop seeing difference as such a big deal, and move into a world where our perception of what a human being is is naturally wider and more accommodating. Once you educate yourself about something, you can stop making such a big deal of it, it seems.

Remember how we used to think of women as inferior to men? How we used to think of black as inferior to white? How we used to think of gay as inferior to straight? Well, we’re still thinking of autistic as inferior to not autistic and as something that needs a cause and a cure working out. Can we stop that please.

How to be a Kettle and Talk to Onions

shutterstock_139529804Women with Asperger’s and autism slip under the radar again and again and again. We are so bloody good at “pretending to be normal” that we get away with it even when we shouldn’t and should instead be living a far less anxious existence.

If there were ever any doubt that I am not normal, today I squashed that flat.

I broke something precious for the first time in ages just to try to break a cycle and find some peace.
Usually I am an eternal sock-puller-upperer. And I am a professional protector. I feel it my duty to not drag people into what I am going through. This doesn’t mean I lie – if you ask me I’ll be honest, but I will do my best to protect people from the raw state that life has often left me in, and pick words that will cause the least damage. It’s not entirely successful but the times I have battled and won far outweigh the times I’ve caved. Feeling I need to punch my way out of a box is common for me but I pull up my socks, take a deep breath, strike the Warrior Pose, and think seriously about what’s worth making a fuss about and what’s not. My guess is that I have about a ninety percent success rate of busting through a day unscathed, and, importantly, without letting any scathing show. Yesterday, for example, I shouted, ‘I’m not finding this even remotely funny!’ at two onions when no one else was about, and spared the more sensitive creatures of the world my troubles. I know about protecting people, about putting people first, about internalising and keeping the peace. I mostly feel practical, productive and caring, and in tune with the world around me.
Apart from a couple of minor differences such as not driving and not participating in school-gate chat, I’m a fairly typical woman and mother. I often wonder if we made a mistake and I’m neuro-typical after all.

But then come the days when I remember the world is not my oyster, I am not free to make long term plans like everyone else or stick a pin in a map and see where I end up, and live a life being thrilled by surprise and adventure. I am at the mercy of Bad Sock Days and no amount of shouting at onions will help me. I take my adventures on a small scale, short-term whim: in the kitchen, in the garden, in my online book purchases. When I step away from my limitations I am taking enormous risks and the sense of failure gets to beat any sense of “at least you tried” far, far, far too many times to make many risks really worthwhile. Besides I don’t get the same thrill that other people describe. Life is adrenalin-fuelled every single day anyway – I don’t need to force it. Quiet days are my adventure.
So I’m mainly happy that I’ve found some way of combining control, happiness and being the best person I can be for my family whilst retaining a great deal more peace than I think many autistics achieve.

I can’t remember the last time I cried and deliberately broke something – I can go for long periods of time being very restrained, and for an autistic person I believe I do the internal talking to stuff very well indeed (I read somewhere that autistics are really bad at this. Please tell me if you think it’s not so). I pride myself on my ability to hold it all together and keep on keeping on for long stretches of time. Since I was very young I’ve almost pulled off conventional and I’ve been working hard at it ever since. I’m so very nearly a natural now. I occasionally see a flicker of “What was that?!” flash across someone’s face; only for a moment though and then I’m back to getting away with it. I adjust and readjust to fit others’ needs and am on alert for what those needs might be all the time. I’m often seen as less weird than “normal” people!
I seem to have a knack for putting my own needs aside for days. Other people’s happiness gives me happiness and I strive to recreate that satisfaction when I can. One of the stereotypes of autistic people is an obsession with a special interest to the detriment of all else and a tendency to bore others with that obsession. It doesn’t present in me quite like that. I do have a project-minded brain and I can obsess about all sorts of things but I mainly obsess about people and home-life, and spend my time organising myself around those. I enjoy listening to other people too and hearing about their lives. I am a quiet observer. My decisions about what to do every day are based on what is needed of me and I readjust this regularly as things change. It’s not something I have to think about too much and I’ve always had good instincts for my children’s needs. As parents, our struggles and rewards are the same as anyone else’s and we are pretty conventional and do pretty conventional things with our kids.

But today I felt so trapped and frustrated I didn’t know what to do and I knew there was none of that keeping on stuff in reserve. I felt life was picking on me, preventing me from having fun, I felt I was unable to appreciate a day with my family because something more powerful than my wishes, my plans and my organising – something even more powerful than night turning to day was controlling me. You can make it Monday, you can make it my husband’s day off but I can’t have it. There may as well be no Monday.
It looks, from the outside; I’m sure, like a child angry at not getting her own way. It feels more like a lone battle and a desperate grasping to regain control of myself. There’s an intense frustration in having no control. The inability to put one’s finger on exactly what is to blame is, I suppose, infuriating but there’s no real anger – just an immense physical fighting instinct whilst simultaneously longing for peace. Wanting to bat away a mosquito, perhaps, only there is nothing there but the knowledge that something is after me. So what the hell do I bat at? I have to feel I’m doing something in my defence. The loneliness and helplessness and a sense that this is a journey I am taking on my own and I don’t want to go on has me running in circles trying to find a place of calm away from the turmoil but it hounds me. I want to tell someone, I want to talk about it but I’m an adult, I’m a mother and moreover there is no reference point for what I’m feeling. I’ve never heard anyone talk about this situation before. It’s all “why?”s and no answers. Add to this a history of never talking about this to anyone ever in my life and I’m left with mental energy and physical energy formed from an urge to escape rather than an enthusiasm for anything. This useless energy and the need for everything to stop leaves me with an urge to throw something. Throwing seems to give me a sense of hurling the unwelcome, unproductive energy away from me.
I didn’t want anything from anyone, I wasn’t cross with anyone so I chose things. Unfortunately today I chose my iPad to throw because of the sound it would make as it hit the radiator.

Now I’ve had a little time to think about it, I think I know why it happened today. I think I was waiting until it was safe: until there was another adult in the house, another adult to take my place. I could go and throw something alone and away from everyone. I think this morning’s meltdown has been building for some time and there are probably allsorts of triggers. I don’t really know. I never do. It’s all guesswork. All I know is I couldn’t do anything until it was over. We had made plans, but I had to step out of them. I had to admit I couldn’t be involved. I tried to put my feelings and reasons into words but I couldn’t. I paced as I waited for everyone to leave the house, I distracted myself by grabbing clothes from the wardrobe and piling them onto the bed in some kind of pretence of a clearout. The constant physical movement and using up of energy was useful if nothing else.

When everyone had gone and I felt the silence, I walked around the empty house, tears flowing so fast and hard that my face hurt and I was temporarily blinded. I had to stop and sit down to cope with the physical exhaustion heavy crying brings. As I sat waiting until I could move again, I noticed a noise like a whistling, stovetop kettle just as it begins its crescendo. I always found that sad murmur just before the whistle disturbing – to me it sounds like a wounded animal. I realised the noise was coming from my throat. I missed my family, I wanted to be with them, I didn’t want days like this, and I didn’t want to subject them to my turmoil either. What I really wanted was to belt out the emotional pain I felt but instead I had trapped it inside my throat.

When I see caged animals running themselves at the bars of their prison, chewing on themselves, repeating a head movement rhythmically or pacing in a small space, I recognise the pattern of a living thing that has had to contain one or more instincts for too long and has been forced to live a life they weren’t completely designed for. I recognise the need for something physical – even pain to create a release. I recognise the powerlessness, the feeling of being trapped, of not being able to run away. Of no other choice.
Some captive animals may perform better than others. Believing they have all their needs met we can be fooled into thinking their lives are good enough. But we are always forcing them to be something for us, and therefore we are not being entirely fair to them.
But what about animals born in captivity – those who know no different? Or maybe they do…? How much do they sense or feel that life is somehow not as it should be?

I think autistic people are like animals born in captivity. We are always forcing ourselves to be something for other people and therefore we are not being entirely fair to ourselves. And unwittingly other people are not being entirely fair to us. We are trapped in systems where society cannot be rearranged for us. Instead we have to rearrange ourselves constantly for society.

It’s impossible to describe to a non-autistic person why we don’t do things we want to do. Why we turn down fun, why we let people down. Sometimes the most simple yet pleasant experiences seem impossible, and how on earth can we explain that?!

Taking it right down to the most basic human needs might help perhaps. Sometimes it’s even impossible to eat: to carry out the everyday function of fetching food, lifting a fork to one’s mouth and then swallowing – let alone digesting. Similarly, it can be impossible to sleep sometimes. It feels as if everything has to stop while some other mystery process has to take place, perhaps.

Sometimes things are cancelled, sometimes offers are simply never taken up, sometimes things do happen but they are awful and I don’t cope. I can’t decide whether it is a day to talk myself into or out of something. I juggle with different reasons regularly and struggle to decide which reason it is each time.

There are four main reasons I can think of:
The Anxious Excitement Reason. I am looking forward to something so much that my cortisol goes bonkers and I experience the same symptoms as fear. Even when I know this is the reason I become anxious about my anxiety and can’t remember why I wanted to do the thing in the first place. Pulling out would mean an end to my symptoms and I would feel safe. This is usually the only time when I should consider pushing on through and taking a gamble with my anxiety but it’s a fine line and there are times when staying home really is best for my health. It’s a hard one to explain to people and is the one that causes the most upset. For weeks or months (even years) afterwards, it’s often distressing to try to deal with my decision. People simply can’t understand.
The Social Exhaustion Reason. I have already pushed myself through things that have drained me and overloaded me, and however much I want to do this thing (or not) I am exhausted and don’t have the energy to make it happen. It’s just not possible and I know I will have no words left in me. I may even be mute for a while.
The Uncertainty Reason. Some thing or things about the event will be so unfamiliar or out of my control that I can’t cope with all the unknowns and I can’t foresee how I will react to situations for which I haven’t planned. If I don’t know exactly how or when I will be getting home I panic about being trapped, for instance. I also fear my own performance and know I will probably not cope. Again I become anxious about my anxiety and everything becomes about trying to feel well.
The Meltdown Reason. For me this is a rare and rather frightening one. It comes like lightning, shocking me and terrifying me when it arrives out-of-the-blue. Rather like pre-storm heaviness, I can feel something building but I’m not aware of the extent of my agitation until something has gone wrong. And it can go wrong quite quickly. Because my concerns are so foreign to the rest of the world, I am not able to voice or communicate them, and I am left at the mercy of something extreme. Usually a fairly eloquent person, I find words in short supply while a physical and mental pressure bears down on me. For the sake of other people I try to find words, but they are all wrong and I hear myself say things I’m not thinking. They are just spare words. Spit words. Missiles. Somewhere deep within me there is a tiny guiding force telling me to get away from other people and give up on communication for while. This reason is complicated. It is an entity all in itself. Another character perhaps. It sits on the chest of who I am and who I want to be and what I want to do, and says, ‘No. No. You can’t move. You can’t do this, that or any other thing.’ The energy is different. It’s less anxiety and more frustration. My guess is that it comes after anxiety and is some kind of fallout I’ve stored until I’ve stored too much. It is perhaps a useful and healthy release to give my body a break from all the internalising I have to do. I know very little about what is happening. All I know is I can’t do anything until it passes. Fortunately it can pass quite quickly if I act. I hate it and I fight it. It always wins though. I have to give up my right to decide to push on through and give up my right to choice and simply let go.

The way I make choices, therefore, cannot be the same as for most other people. Sometimes I simply can’t make choices. I am not allowed to. The world as it is – as it was designed by other humans – is not mine in the same way it is for other people. I have to repeatedly stop myself from making any kind of long-term plans because I know I am not consistent.

So today I am missing something I was looking forward to, something I would have enjoyed. Returning to my captive animal analogy: some days a banana through the bars of the cage may be the most delicious most-welcome thing and I desire it terribly – so yes, the “It will be nice and you would enjoy it” argument is true to a point, but a day chilling out in the rainforest is even more necessary, and when all is said and done, I must bow to the instincts of the caged animal who has missed the world she was taken from and is not looking for thrills and enjoyable experiences all the time but for a peace that can only be found from following one’s instincts.

The times I’ve written about bad days, bad experiences, the bad stuff about having Asperger’s far outnumber the times I’ve written about the good days, the brilliant days, the mediocre days. And yet the good and mediocre days are the ones that really fill up my life. They are about getting on with stuff and are often really rather boring and normal to read about. I tot up minor struggles with noises, lighting, smells, busy shops, too many people talking at once, and live with anxiety daily if not hourly, but I accept that this is my life, this is my normal and I internalise and find ways around things. I cope, and my life is mostly boring and normal – and for that I am grateful. But I think it important to share with other autistics – and anyone else good enough to read this – some of the difficulties we experience, and try to put those crashing days into words so that people like me don’t keep on feeling we have no reference points for our lives and experiences. There’s stuff going on in our heads that no one understands anywhere near well enough yet. We don’t even understand it. It’s time understanding moved forward a bit faster, and what better way than reading about raw feelings and actual experience as it happens rather than only ever picking up a textbook written by experts who are not autistic, or a humorous novel based on mocking autism stereotypes?

shutterstock_143264182


Family. Familiar. Familiarity.

I’ve fished out my long pyjamas with the hare design: the familiarity is comforting, as is the super soft cotton.

Familiar habits and familiar objects reduce stress and provide immense comfort. I know I am not alone in this.

This isn’t just an autistic thing, it’s a human thing. (I do believe it’s likely to be more important to many autistic people though because the stress of processing a tonne of unfamiliar stuff is exhausting, and so something so totally familiar that one’s brain can take a rest is important.)

Ever since we went through the stress and upheaval of moving in June, the return of each familiar ritual, each familiar knick-knack, and each familiar kitchen item has brought massive comfort to us all. Last night we hung our old kitchen clock on the wall and it told me it was time to breathe. People keep coming back to fiddle with things like the electrics and patio windows and straighten things over the last couple of weeks, and there’s a small hole to fill outside and a new front door is on its way, and we’re expecting bedroom carpets on Friday so we’re madly trying to get ready for that but mostly we’re filling the space in a living rather than surviving kind of way and can keep popping back to our hired garage to fetch a cooking pot or glasses and other things that signal functioning domesticity and familiarity.

We’ve all longed to bring back things and bring back our ways. All of us. Home is about what you do and with whom you do it. Peace is an end to conflict, distress and disorder. So things that can bring back a semblance of a more settled past reduce trauma.

We have been traumatised, disorganised and unsettled. 2018 has, so far, shattered and scattered us – not scattered from each other but from ourselves and from our normality. The expression “my head is all over the place” has never been so apt.

On Friday 8th June we left our clean, bright former home with a huge bank of memories. As I dusted the last skirting board Rich got the call to say the house was no longer ours. This was the only home our youngest child remembered and where she grew from toddler to teenager. It was the home where I passed my degree, published a book, found peace, space and confidence to write and expand my knowledge and gained a little self-love and learned how absorbing myself in peaceful creativity was all I needed to fix my turmoil; where I learned blow-by-blow of my father’s terrible illness and death, then of my son’s terrifying head injury; where we put up family and guests over the years, and watched our eldest leave home and our middle child go from primary school to secondary school to college, to first car to second car to 21st birthday.

It’s where we took our eldest back in while she rebuilt her life and set up her own business.

It’s the last place I sat and had a cup of tea and a chat with my darling father.

It’s where my husband heard that his beloved father had died; where we went from young to middle aged and grey. It’s where we stood and listened to the neurologist give us the news we had begun to suspect about Richard over the phone. I can still picture each room I was in when each life changing phone call came in, and June of 2008 when I paced up and down on the patio, walkabout landline pressed to my ear, listening to bad news and more bad news as the most beautiful time of year took hold around me while horrors of our father’s leukaemia, treatment and pain poured into my ear is a memory of roses and footsteps, long evenings and sick fear.

When we first moved to that home, no one even owned an iPhone yet, Brexit would have seemed impossible, Prime Minister May highly unlikely and President Trump an absolutely incredible joke. No chance.

Pinochet and James Brown and Saddam Hussein were all still alive. Our mothers were still married women and not widows.

We’d created a flow and a rhythm and could get on with our lives because we weren’t distracted or disoriented by the unfamiliar.

There is something incredibly heartbreaking about taking a big old map of familiarity and cutting it up into small pieces in order to move house or initiate change. It is stonkingly painful and unnerving. It is particularly so when life is difficult and upsetting and you need that comfort.

When we walked through the front door as the new owners of Number 21 in June this year, it felt anything but ours. Someone had been a fan of fried food and fatty meats over the years in that house. Someone had been a smoker over the years. Someone had been abroad and been inspired by paint colours that better suited the Caribbean. The banister was sticky, the cooker was broken and filthy and stank of old, burnt animal fat that made me gag, the garden was no longer a garden but a hotchpotch of grey gravel, red and black brick, rubble and unusable outbuildings painted primary blue. The upstairs was a chaotic tumult of mismatched carpets, and the downstairs a cacophony of cheap laminate floor that cracked irritatingly under each step. It had looked okay when we’d viewed it but the harsh reality was that it needed tonnes of work doing.

No one seemed to have had a vague care about who would be entering that house once they left and our hands met grease and dirt on many a surface. Our youngest even woke to find old toe nail clippings on the floor on the first morning.

The impregnated memories of previous residents and thoughts of impending building work, combined with the exhaustion of selling up, downsizing and moving, on top of a Parkinson’s diagnosis and preparations for closing down and selling of a family business left us in what I have now come to recognise as Coping Mode. We simply talked practicalities, and monitored and recorded progress in order to survive. There was no way we could afford ourselves the luxury, at this stage, of discussing just how awful it was surviving in a small, foreign space surrounded by unfamiliarity, dirt, dust, noise, and other people’s, often offensive, smells.

The building contractor who followed our requests, organised the work, and hired all the subcontractors for all the jobs we wanted doing called our renovation project “A Challenge Anneka” (you’ll have to be British and over 30 years old to have any clue what that means…) but we felt supremely challenged ourselves.

I hate chaos, clutter and dirt so much it makes me squirm. I went to bed many a night with the windows wide open trying to ignore the taste and sensation of concrete dust and plaster dust in my mouth and nose. My senses are ridiculously highly tuned, and foreign objects – however tiny – scream at me. Life is a constant battle of trying to quieten or ignore those screaming senses at the best of times, but this was extreme. Foreign sights, foreign sounds, foreign smells, foreign tastes, and foreign sensations all around me began to drive me mad. And all the time my natural desire for cleanliness and a clutter free home so that my poor over-busy mind could rest and stop processing every damn detail, was being monumentally challenged.

Richard needs to eat regular, healthy meals, he needs to rest and recover from the extra exertion simply having Parkinson’s uses up and he needs to exercise regularly to keep his dopamine circulating. He needs to remember to take the right drugs and the right supplements at the right times. Just like me, he needs peace and periods of time when no one is asking questions or creating extra work or upheaval. We both began to find it difficult to attend to each other’s needs as we concentrated on our own survival. But somehow we did the bare minimum and we have survived.

Fortunately, despite being a much more built up area, the small strip of no-mans land between us and the modern houses behind our garden, the nearby river and the nearby Great Field mean that we haven’t lost bird song. The crows, seagulls, starlings, sparrows and pigeons are all here, and at night, when all is quiet and I feel I am the only person left in the world, I can hear a tawny owl couple communicating to each other.

I am learning the new soundtrack to my life, and learning to accept – if not quite filter out – all the new stuff. We haven’t quite created the right rhythm yet but at least it’s no longer a rhythm-free filthy chaos of unknown beats and crashes.

I think I will be traumatised by 2018 for some time. It will take me a long time to put the upset far enough back to live with it. I’ve come to recognise in myself how trauma doesn’t want to fade but wants to keep upsetting me and causing me ongoing pain. But exploring your own neurology can make you beautifully self-aware and able to accept moments of failure as human and just part of life.

I coped. I had mini failures and I will continue to. But I coped. We coped. And this too will fade into birdsong. Eventually.

When “The Done Thing” might be ableism

Ableism ~ discrimination or prejudice against people who have disabilities

I’ve thought long and hard about saying this and I think it’s necessary. This is not aimed at anyone in particular, instead it has grown from a combination of comments and actions and general thinking over a few years.

Lots of people think talking to someone face-to-face about something is the proper thing to do. The second best way is a phone call. Anything else is rude, unacceptable, lame, thoughtless, yadayadayada. I’m not saying everyone judges others who don’t do this – many people just assume it is the acceptable behaviour and so that’s how they function but many people do judge. They may not realise they are doing it until they hear themselves criticise someone not following The Order of Communicating Properly.

From what I can gather the next best way is to leave a message to say that you want to talk to someone. Or leave news or discussion with your actual voice. After this texts are allowed. Personal messages on social media are a last ditch emergency allowance.

Posting stuff on social media is often seen as inappropriate. It’s also rather cruelly called “overshare”.

But what you may not have thought about is that this is what is called “ableist”.

Many people with anxiety, many autistic people, or people with speech and language problems say what they need to say far more coherently and confidently and have an equal standing in a conversation if they can type words.

Many of us panic in stressful situations and in situations where we are being eyeballed (even in a sympathetic way). Being forced to function in ways that are not comfortable gives an unequal standing and means the person with the difficulty is diminished and their rights to equality stamped on.

Can we please get over this idea that sharing stuff on social media is wrong (unless it’s about another person without their permission); that communicating in the most comfortable way possible is somehow not understanding social etiquette.

It’s actually discrimination.

Ode to the Gum Tree, the Cicada and the Kookaburra

28 Dec 2017

It’s high summer in Australia. Pictures flood my social media of frost and snow back home. Despite the extreme, uncomfortable heat that I am far from acclimatising to, I don’t miss the snow or long for cold. In terms of sense of event, Christmas was more like an English August bank holiday than the sparkly affair it is in cold countries, and I surprise myself with the realisation that I don’t care.

Here the sun is so high, shadows are mere puddles at the bases of trees, air conditioning in cars is essential, and clothes with waist bands are clingy and oppressive. The heat scorches my skin even in the shade. I have come unprepared and have already been shopping and bought myself looser dresses which let my skin breathe.

The radio stations have finally ceased playing Christmas tunes alongside summer jingles, and things make a little more sense. Blue and white agapanthus flowers appear regularly at the roadside like a national flower. For the first few days I repeatedly marvelled at the blue haze.

Homemade roadside signs advertise fresh picked peaches and nectarines for sale, and pockets of cicada groupings roar like white noise in waves as we drive by – overpowering even through the closed, oven-door-hot windows. Resilient gum trees grow everywhere out of everything, so it would seem. An admiration for these majestic trees increases each day as I wonder at their existence and their ability to cover dusty land with life-giving and life-preserving forests. Not as samey as I was expecting but differing very much in shape and colour. Skinny, thick, red trunks, grey trunks, burnt black trunks, multi-coloured peeling trunks. Sure the greens and shapes that come of fertile, moist ground are more diverse but these hardy beasts are something else. Nothing to be sneezed at, I joke to myself as I think of the nasal clearing power of eucalyptus oil.

My head and body are still confused. I’m not a seasoned traveller and am always very much pushed and pulled by the seasons. To jump, teleported, from shortest coldest days to longest hottest days rather than easing into a season has confused my natural rhythms and I feel very much a visitor to an experience rather than rolling with summer. The shock of early morning cicada choruses and the first blast of a laughing kookaburra has had me hurling myself out of bed at 5am.

Just as my mind slips into thoughts about what time it is back home, we journey onto an unfinished road surface and slow our car to view kangaroos grazing in the valley. As Joel and I attempt to step out to photograph them, the kangaroos bound away up a slope into the trees and are instantly invisible. The dry heat, away from the coast where we are staying, is stifling and am back inside the cool car in seconds.

Rows of mailboxes sit together at the entrance to dirt tracks. I count at least eight homemade, rusty, paint-peeling boxes, hammered, all different and at different angles, into the dry earth. I look back and wish I’d photographed them. Diverse yet giving the same message: don’t come this way, the terrain is too tough for your tarmac only car and your delicate skin and untrained physique. These mailboxes were made by people with resourcefulness and resilience you can only dream of.

We stop to talk directions and wandering off course, and the men joke about the film: Deliverance, and sing a little banjo riff.

It’s now I discover we didn’t mean to come this way but I’m glad we did. I’m glad we left the clean, undusty comfort of the main roads. I’m glad we imagined the harsh, yet beautiful reality of life before infrastructure, and places where kangaroos still feel welcome and free.

I admire those inconspicuous dwellers who live beyond the easy and I indulge in the mystery of their struggle and how much is choice or necessity, and how far the electric cables and water supplies reach into this land.

The dangers that come from getting lost in such a country are so great that “experience” is organised, signposted, controlled. Wildlife is viewed from visitor centres and marked walks.

I know I will return home vastly limited in my knowledge and experience, and will not have seen the Australia I have watched on TV from the comfort of our sealed, Northern Hemisphere, pest-free, modern home, but this experience in itself is a good experience and a true one, and I have fallen in love with its inaccessible unfamiliarity juxtaposed with the determination of humans far far more than I expected to.

(The video above is not, in fact, from the day we got a little lost in the wild, but from the huge gum tree in the drive of our rental property. The sound of the cicadas was often totally overwhelming and we were showered with cicada “rain” (wee) each time we passed underneath)

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