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Posts from the ‘Adult Autism’ 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.

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.

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.

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