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Posts from the ‘Autism’ Category

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.

Why “Getting away from it all” for me, means going home


On Instagram I saw a selfie of someone on an early train to London.

I instantly felt the intense, headachy smell of public transport, the sickly dread, the palpitations, the knotted gurgling tummy and irritated bowel, the pressure in the head from exhaustion, and the stress of travelling. 

I was shocked at how convincing the scent memory was – how I was briefly in the picture. Smells bringing memories is one thing but images recalling smells is something else. 

It was a not-so-welcome reminder of how painful and exhausting any kind of travel is for me. Of how I fail to relax, fail to sleep; how I am bombarded by scents and noise and other people moving too fast, and how I am flooded with anxiety until my guts knot and my mouth goes dry. Of how before any kind of trip I am focussed almost entirely on times and arrivals and coping with getting through so that I can’t sleep or eat, and spend hours, days, sometimes weeks just physically and mentally getting ready to leave, to travel, to feel the assault on my senses. Pacing with palpitations, anxiously rejecting any enjoyable activity or sensation from my life and mind. Even when finally seated aboard whatever vehicle it is, inside I’m pacing. My eyes are darting around, I’m gnashing my teeth, squeezing my fingernails into my palms, desperately attempting to appear calm. If I manage to get comfy (unlikely) and close my eyes, it is a pretence. The smells are as loud as the sounds. And the presence of others pushes against me until I must open my eyes and look again to check where everyone is. And the smells don’t just remind me constantly that I am not at home, that I am surrounded by the unfamiliar, but they also make me nauseous and poised for escape. 

How does that man manage to sleep right next to that woman with the highly-scented hand wipes?! 

I used to watch other people when travelling on long or short trips (I say used to because it’s been years since I took any kind of trip that didn’t involve sitting in the passenger seat of my husband’s car): I watched the readers, the talkers, the sleepers, and those who sat sleepily observing the world whizz past the window, and also those anxious travellers who like to sit near the front, holding on tight and looking ahead, secretly helping the driver deliver them safely. 

I wanted to read. I wanted to doze off. I wanted the ability to really sit still as well as just appearing to sit still. But I couldn’t. I can’t. 

Unlike the anxious passenger who is secretly trying to control the vehicle, I don’t have any huge trust or control issues, no: what is have is what I’ve more recently begun to identify as Self-performance Anxiety. It’s about me coping. It’s combined with with hyper-awareness and sensory bombardment. And I am already ill and exhausted from the build up to this journey. I am taking a personal test each time as well as a journey. And the purpose or destination becomes blurred almost to the point of irrelevancy. 

On a plane, while my husband is nervously reimagining every disaster movie he’s ever seen, worrying about whether the pilot is tired/too old/too inexperienced, and, I expect, really rather wishing he could meet and chat briefly with him/her and then check if the engines are well-serviced and refuelled, I, on the other hand, am pretty convinced of their experience and ability, and am instead coping with the effects of days of build-up anxiety and the utter exhaustion and the feeling of a clogged up lymphatic system it has given me. I am coping with head pain, stomach pain and overwhelming feelings of hyper-vigilance and anxious thoughts that are more internal than any feelings of pilot-incompetence or engine failure paranoia. My muscles are knotted with stress and tension and I feel bruised all over. And while dealing with all that, the non-stop world of travel chucks out so many movements and noises and smells and changing lights that I feel my animal survival mode kick in. 

My husband attempts to lift the arms of the seat as we land and his feet shoot forward as he exclaims “Brake!” He can’t help it – he is anxious about flying. As a passenger in our son’s car he holds tight to the grab handle, asks questions about the car and sits up straight. He can’t help it, he is an anxious passenger. 

But if he can put himself through it, he will reach a destination and sleep. It’s stuff he could probably deal with through a course of therapy or hypnosis or CBT. It’s what I call Actual Anxiety because it relates directly to a thing in itself here and now. It’s outside of himself and he’s scared because he can’t control it. It’s irrational but still understandable and solvable. 

My anxiety is on a whole other planet. I won’t sleep. I won’t rest. I will be ill for days following my ordeal. The exhaustion will be enormous but I will be too wired to sleep, and for days afterwards – even if in a safe place – my mind will have forgotten how to let go and relax and I will feel ill and slightly disconnected while I try to piece my life back together again and reassure my inner frightened animal that it is okay to sleep. Days of sleep-deprivation and anxiety will gnaw at my head like a hangover. Exhaustion will flood my cells and no part of me feels normal. 

Over time I’ve gradually begun to realise that holidays just aren’t worth the ordeal because there are too many days lost in recovery and then there is always the forthcoming journey home nagging at me and tainting any enjoyment. The animal survival mode often lasts for a whole holiday because there is simply no point relaxing until I am back in a place where my peace and my pace can thrive again, and where I can switch off that blasted sensory overload that is continually processing. 

Looking at the photo again on Instagram, I remember the morning 6th form bus trips to college, the morning bus trips to town for a winter job in Marks and Spencer, the morning bus journeys to work in a local pub when I didn’t know what else to do with my life, the morning bus journeys back to college at age 23 to try again and fail again, and how by the time I’d got into a seat each time, I felt ill, sleep-deprived and unprepared for the day and desperate to go home again. Anxiety was constant. Sleep was fitful. And this was just the short trips. 

I think I spent my life looking for escape. And these days, when I’m not home, I think I still do. Home is the only place where that devastatingly exhausting survival mode can switch off. 

I believe I hid it well. I believe no one knew. I’m not sure how much I knew other than I felt like everyone looked like they were coping so much better than me. 

My best work happens at home. My best thinking happens at home. I’ve noticed other people seem sad to think of it like this but for me the best rest comes when I’m back at home too. Journeys are not out of the question – new sights, sounds and things to photograph are always exciting – but they’re certainly not the escape that other people experience. And each and every journey – however long or short and whatever the reason – is something to be recovered from. To live with chronic, ever-present, background anxiety is tiring enough, to exacerbate it always seems less attractive than easing it.

Rather than seeking adrenalin kicks, I seek out adrenalin breaks. And the best of those can be found at home.



Note: I almost didn’t publish this post. I’ve written about 10-12 blog posts recently and not made them public. It often feels too self-indulgent. But last night I spotted a piece in the Guardian by a fellow autistic woman and found her experience interesting and helpful and not at all self-indulgent, and remembered that my silence isn’t very helpful for other people!

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

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

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

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

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

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

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

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

FACTS: 

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

We are all extremely different. 

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

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

There is no stereotypical autistic or stereotypical non autistic.    

And, importantly: 

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

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

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

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

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

It’s about some extremes of normal humanness. 

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

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

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

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

Deal with it. 

Don’t grieve it. 

I Am Autism

I am all your fears multiplied 

I am all your senses intensified 

I am all your blinding lights in agonising magnification 

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

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

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

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

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

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

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

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

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

I am the wild stallion you tried to make cart horse  

Let me run and you will see 

I am Autism 

MELTDOWN: “Greater Force” versus difficult 


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

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

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

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

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

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

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

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

There is no Greater Force conspiring against us.

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

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

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

allowed

to

Stop.






Flat on the Mat

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

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

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

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

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

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

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

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

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

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

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

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

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

One Thing Only

I went for physiotherapy this morning. The outcome was good (well, better than expected). The physiotherapist is lovely, and I know her well enough to not be too daunted by the mysteries of what to expect. My husband drove me and picked me up and the journey was only 10 minutes. Yet I am exhausted. It took over the whole of today and I’m still replaying and relaying the experience. I worried about it overnight, worried about what I would say, what I would wear, about someone else seeing and touching my body. I am exhausted from socialising and from talking about myself – I find it really hard to take up people’s time and for the time to just be about me. I struggled to get back to normal and complete the rest of the day, to cope with work and parenting and this evening’s mealtime. I just wanted to go to bed at midday and say ‘I’ve dealt with something today!’ And yet to anyone else this is just an appointment amongst many in their diary – get over it. But every other conversation and decision for the whole of the rest of today has been an immense strain and had me close to shutting down. I even said to my husband ‘I’m not sure I can talk to anyone else today.’ 

This is me. One thing dominates and continues to dominate until it is over and I have recovered.  Good or bad. I do my best to keep going but the need to recharge is not a choice. It is a need. It’s how it is. 

Anxiety is a Bastard 

Anxiety

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

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

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

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

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

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

It keeps me awake though I know I am tired.

It keeps me active though I want to relax.

Anxiety steals, and breaks and hurts and lies.

Anxiety is a bastard.
An absolute bastard.

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

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