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Posts from the ‘Anxiety’ Category

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

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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.

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.

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.






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