Disclosure

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I was reading this post and the comments beneath it and it suddenly occurred to me how the word disclosure means something totally different for parents and autistics.

For parents there’s a lot of anxiety over a child’s comprehension of the word, and that they might take the information in a negative way.

To autistics the word means putting power in the hands of someone else.

It was suggested by my mentor that when I have difficulties or issues with colleagues at work I should tell them I am autistic. Without a moment’s pause I blurted ‘But that’s putting power in the hands of someone who already views you negatively’.

Of course, not everyone will abuse that power. But hard experience tells me most people will. Their use of it will most likely be subtle, but you will quietly be moved from the category of human to almost-but-not-quite-human, from competent colleague to problem-waiting-to-happen, from let’s renew your contract to finding-another-job-elsewhere-is-a-wonderful-career-opportunity!

The problem of disclosure is an ongoing shall-I, shan’t-I conversation that runs on a loop in your head. Every colleague, every new friend, every group you consider joining. How will they react, how will they use the information, who else will they tell… and the consequences only show up when it’s too late to take it all back.

For many autistic adults, disclosure is a lifelong decision, a lifelong conversation. And I’m uncomfortably aware that there is one point when its consequences will become devastating; the likelihood of your diagnosis leading to you being declared mentally incompetent as you age. What happens to the older autistic who wants to continue to live in their own home? What happens if a residential home discriminates against an autistic resident?

That is a conversation we’re not even thinking about.

“Too caring to be autistic”

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You’re too humanist to be autistic.”

“You care too much about people to be autistic.

Both these statements have been made to me in the last month. Given that I am ‘externally’ diagnosed, and comfortable with the correctness of that diagnosis, I find these kinds of statements difficult to respond to. And humanistic is too close to human, and the way I’ve been feeling recently that touches a nerve.

I know that all these statements reveal is the speaker’s lack of knowledge about autism. Given that one is a doctor and the other a psychologist, it’s a little concerning. We now run at 1-2% of the population – there’s a high probability we’ll land up in the office of one or other group, and yet they seem to feel little need to understand what autism is before making sweeping statements about it. Given that both are ‘treating’ me I find it even more surprising that neither seems to feel the need to extend their knowledge. I don’t want to be a self-narrating zoo exhibit, and I’d really like not to feel like I’m the one who has to constantly do the educating.

I also get the feeling that people would be a lot more comfortable with a label like ‘personality disorder’, or ‘attention seeking’. If you’re white and female, no one ever questions the correctness of these labels. In fact, people bend over backwards to make your every difficulty fit under the diagnosis. A strange situation, where they like your diagnosis because it relieves them from the necessity of seeing you as a person with valid feelings and experiences, and also allows them to blame your difficulties entirely on your ‘maladaptive behaviours’.*

Autism, of course, doesn’t allow them that comfort. It is a disability that eludes personal blame and raises the possibility that many of your difficulties are entirely valid and require adjustment on the part of the other person. Once your behaviours and responses have strong biological underpinnings you find yourself out in the cold. You cannot be blamed, you cannot be fixed, and necessary accommodations require ongoing adjustment from everyone else – what the hell are normal people supposed to do with you?

I begin to suspect that people don’t want me, the autist, to care, that my caring opens up reciprocal obligations that would be fine if I were normal, but are distinctly uncomfortable when invited by someone who is incomprehensible/unpredictable/broken. There is, fundamentally, nowhere that I fit in, and even the parts of me that are ‘human’ are not good enough unless I become complicit in denying the truth of who I am.

 

*please note, this is not my opinion of people with these diagnoses.

If you were wondering

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Not all autistics have supportive families. Some have parents who describe them as vile and appalling, and refuse to acknowledge their disability, or to learn anything about it. Some have families who just don’t want to know, because knowing would deprive them of the right to dismiss, to belittle. Once they allow it as truth they are denied their righteous anger, denied the right to interpret every event their own way.

Not all autistics have supportive workplaces. When colleagues use ‘autistic’ to mean annoying, disruptive, obstructive, self-centred… or whatever the negative personality trait du jour is, then it’s hard to feel anything other than unwelcome and unwanted.

Not all autistics can shrug off their constant failure to understand the why of other people’s actions. Maintaining a facade of constant understanding to cover lifelong confusion is exhausting, but knowing that the moment the mask slips is the end of any form of acceptance leaves little choice.

Not all autistics have the strength to keep fighting every autistic behaviour, or to deal with people’s response to their failure to do so. To realise that the mocking smiles exchanged behind your back at school are still being exchanged thirty years later and know that this won’t stop until the day you die, well, you’ll have to forgive me for feeling negative about the future.

Not all autistics have no interest in people, though I wish I was one of those who liked being alone. I’ve always thought it an especially cruel form of disability that gives someone a need for human contact and then denies them the ability to maintain it.

So if you’re wondering why I’ve given up on friendship, on anything but the most superficial of interpersonal relationships, now you know. It’s not personal.

ABA, parents and well… you know

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Carly Fleischmann posted on facebook about a study concluding that ABA may cause or exacerbate OCD. (The study isn’t available online yet.)

She was met with the usual howls of outrage and staggering lack of insight by a number of neurotypical parents.

Well my son had OCD even before he was diagnosed and received ABA. When he was almost 2 years old he would line his crayons up in the same order everyday before he would do his arts and crafts projects with me. If I moved a crayon or disrupted the line he would fix it immediately. He is a child of routine and he made his own routines. When he comes home from school, even if he has to go to the bathroom, there’s an order of the things he must do before he does anything else. Shoes off first, coat off next, a little dance around the living room area and then he’s free to do what he wants.

Linig up crayons in colour order is OCD? Taking your shoes and coat off in the same order every time is OCD?

WTF???

What is wrong with these people? A ‘success’, for this woman, seems to be a child who doesn’t line his crayons up in colour order, who undresses randomly, and to hell with the internal distress this destruction of routine causes.

I do believe slowly control should be removed to some degree to give the person a feeling of self worth.

Gosh, thanks! It’s so nice to know that NTs will consider removing a degree of their control of autistic people. Let’s not get overexcited and use words like autonomy, hey?

My son receives 30 hours a week IBI

Can you imagine, as a kid, being observed and hassled and prodded into ‘correct’ behaviour for this amount of time every week? The likelihood of becoming stressed and anxious at not being able to perform? The knowledge that this is being done because you are made wrong and these people aren’t going to stop until you are fixed?

Not looking forward to April. Really not.

A strange thing about Amazon.com

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I’ve recently switched from amazon.co.uk to amazon.com. So many stories about people outside the UK having their kindles wiped made me increasingly nervous, so I decided to do the sensible thing. And it’s allowed me to make an interesting comparison.

Both sites are now using the same book collection I have on my kindle to make recommendations. And while on the UK site, around 50% of the authors on the recommended list are female, on amazon.com it’s less than 1 in 10.

This matters to me. I love female crime writers – Elly Griffiths, Ann Cleeves, Kate Atkinson, Lindsey Davis, Ann Holt. And I love female fantasy writers – Maria Snyder, Naomi Novik, Robin Hobb, MZB. I also read quite a lot of literary fiction. But the new list is full of predictability – Patterson, Connelly, Robinson, Banks, Pratchett, Baldacci. I don’t have any thrillers or violent American crime novels on my kindle. Though there are a few books on the list I might pick if I had unlimited funds, these are not the kind of stories I would jump at.

I can, of course, spend time endlessly ticking ‘not interested’, but shouldn’t the algorithm be doing that? Can it really not tell that if someone has 70% of their fantasy novels written by women, then other female writers might be a safer bet? I suppose the truth is probably simpler. This isn’t so much a list of what other people who read the same books have bought, as a list of what’s popular in the genres I read. And so it becomes a self-reinforcing list of male writers. Even though I don’t read thrillers, I read crime, and so Patterson turns up on page one of my recommendations. The list is skewed so the popular writers (or their ghosts) remain popular, and the place that’s supposed to help me find a link to something I want to read, in fact just pisses me off and makes me want to buy elsewhere. If my nearest decent bookshop wasn’t over an hour away, I’d be buying a lot of paper books.

Anyway, you want a book recommendation? Try Carry Yourself Back to Me, by Deborah Reed.

An autism textbook

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From A Comprehensive Book on Autism Spectrum Disorders, “aimed to be used as a textbook for child and adolescent psychiatry fellowship training and will serve as a reference for practicing psychologists, child and adolescent psychiatrists, general psychiatrists, pediatricians, child neurologists, nurses, social workers and family physicians.”

Because of their empathy or theory of mind difficulties they get very easily into social conflicts, become extremely controlling and dominating, and find it very difficult to resolve conflict. Indeed they can get stuck in a paranoid position in relation to another person. They have poor negotiating skills, poor capacity to give and take, poor social reciprocity, and have to win and insist that the other person give in and submit. They need help with understanding other’s minds, the nature of social relationships, social nuance, social know-how, help in reading other people’s minds, and seeing things from other’s point of view.

A very small group of persons with autism … engage in serious criminal activity eg computer hacking and indeed up to and including murder … This group also shows callous and unemotional traits in childhood and later. They can be fascinated by fire setting, killing animals, and in poisons.

In Japan, one of the major complaints [sic] of autistic children is shoplifting … it is well-known that autistic people are difficult [sic] to learn unwritten rules like morality…

There are three interesting chapters; reviews of the current research on ASDs in Africa and Iran, and a poorly-translated article on ‘sensory motor development’. In general, though, the book is littered with statements about autistic people that are profoundly negative and demonstrably untrue.

I am hopeful that, given the appalling translations of large sections of this book (go here for amusement, or horror if you’re hyperlexic), that few people will use it as a text. However it is free to download, which might give it a wider audience than it deserves.

The male female divide

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If you’re a researcher or a neurotypical, it seems to be accepted fact that there are vastly more male autistics than female. If you’re a female autistic, I suspect you sometimes wonder, as I do, if the ratio might be a lot closer to 50:50. As a female autistic you are likely to know the ways we hide, the many small concealments, the ways we twist ourselves up to conform to outside expectations.

I want to take one small part of this assumption, that men are much more likely to be systematisers than women, and that this contributes to/is evidence of the preponderance of men on the spectrum.

Systematising, of course, is taken to be things like collecting train numbers, or dates, or focusing on mathematical progressions, or engineering with extreme precision. Of course, if you assume that systematising is a male thing, then you look for ways in which males systematise, you are unlikely to notice anything outside your predetermined focus. And if you also undervalue the things that women value (something that many, if not most, men do) then your implicit bias leaves you unable to make even a basic attempt at researching this aspect of autism

Women as systematisers:

Women as engineers – complexity, calculation and extensive periods of concentration:

Women as collectors:

1. Jane Wang

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Now I am not implying that anyone depicted here is on the spectrum. but it’s not hard to find plenty of ways in which female systematising is as common as male. Women are too often constrained by the expectations of culture, and their systematising impulses dismissed as unimportant or not even noticed.

When I was a child I rewrote natural history guidebooks. Anything that had lists of plants or animals, I rewrote obsessively, poring over distinguishing details, learning latin names, obsessing at how things were divided. By the age of ten I understood phyla, families, species and the detail of taxonomic division. I knew every breed of guinea pig, cat, mouse and rabbit and for many could list the points for which they would be judged at breed shows.

Yet I never see this kind of systematising listed in childhood criteria for ASD.  I don’t see my alphabetically organised 4000 book novel collection, my large colour organised fabric collection, or my need to collect and grow every type of aquilegia considered as a systematising impulse as an adult.

I’m sure there are many other examples that my own narrow focus prevents me from recognising. And I think it’s about time that researchers took a long look at their own cultural and gender blinkers, and considered that there might be more to ASD than things men are interested in.

Autistic people should

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…be allowed to talk about their autism without neurotypicals shouting them down with ‘yes! I get that sometimes, too!’

Because it’s not the same.

…be allowed to show autistic behaviours like stimming without being treated as subhuman or bad.

Because it’s necessary.

…be allowed to advocate for ourselves without dismissal, accusation or intolerance.

Because it will change things.

…be accepted as family members, friends and partners.

Because we are as human as you.

…be allowed to have lives that aren’t one long apology for existing.

Because if you don’t have to live your life like that, why should I?

http://autisticpeopleshould.blogspot.com.au/

Angus McPhee

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In 2001 I was living in the Outer Hebrides. At the local art gallery I bought a small, slim book titled Angus McPhee: weaver of grass. And ever since I read it this story haunted me in a way I couldn’t explain.

Angus McPhee was born in Glasgow in 1916, and seven years later his family moved to Uist in the Outer Hebrides. As he grew up he worked on his family’s croft, played the chanter (unable to afford a full set of bagpipes) and had a ‘fine singing voice’. According to the book, he had a mental breakdown after volunteering in the second world war, and was invalided out. When he returned home to the islands he became isolated, wandering the moors and beaches, refusing to eat. Following the attitudes of the time, his family had him committed to Craig Dunain, a psychiatric institution on the mainland, where he remained for fifty years. It is of note that when he arrived there he became mute, and remained so with only one exception until he returned to Uist for the last years of his life, where he conversed in Gaelic with another resident of the Home for the Elderly he was transferred to.

That one exception was when he was ‘allowed’ day release, usually to work at Black Park Farm nearby. He was considered a natural with the animals, managing an aggressive bull fearlessly. There he conversed ‘about the weather or farm related matters but never about himself’. On returning to Craig Dunain he would retreat into silence.

Craig Dunain had its own farm in its grounds where patients, as they recovered, could work providing food for the rest of the inmates and staff. It’s likely that Angus’ move to the farm was a positive step, because it was here that he began to weave the grass items that would later draw such attention.

He remained isolated, interacting with staff only when necessary. Every autumn he would watch silently as the groundsman raked up his grass weavings and burned them.

The exact date isn’t given, but it looks like it was the late 80s when Joyce Laing, an art therapist, visited Craig Dunain. She was on a self described ‘Scottish hunt’ for what is now termed ‘outsider art’ but was then called Art Brut, or raw art, following a Swiss exhibition of art from Swiss psychiatric institutions.

I have to confess, at this point I am already feeling somewhat disturbed by this story.

Joyce arrives at Craig Dunain having persuaded a taxi driver to tell her of the old man who makes things out of grass. She questions a nurse about this, and having  the story confirmed is told that Angus leaves the things he makes out in the field. Without making any attempt to speak to Angus, or ask his permission, they rush to the field and drag out every piece of grass weaving they can find.

Eventually they do speak to Angus, a another nurse’s suggestion. It’s not clear whether, had this suggestion been made, they would have made the attempt or would simply have removed the weavings. Anyway, they ask Angus’ permission to take the weavings to Glasgow. The nurse says Angus cannot read or write, but when offered a form he signs his name without difficulty, identifying the correct space without prompting.

Further on in the book, some of the things Angus wove, now lost, are described, including a swallow-tailed frock-coat, multiple types of hat, trousers, jackets, boots and waders. No one seems to have considered that in order to weave the multitude of items he must have had a keen understanding of what they looked like and an excellent memory. Where did he acquire this information in a world devoid of television or any source of information other than reading material? This question isn’t asked; the interrogators are happy with their idiot sauvant interpretation.

Angus McPhee’s diagnosis was schizophrenia, yet nothing in this story gives indication that he heard voices or had hallucinations, the defining symptoms of the condition.

I am left with a number of questions.

The main one, the one that brings me to tears, is what happened when he was called up? What happened to this intelligent, capable young man when he was thrown in with a group of his peers who likely had no tolerance for anyone who didn’t fit in?

We have only the slenderest details about his childhood; the book is full of ‘would have’ and ‘must have’ and nothing about any difficulties he faced

How could no one believe, after fifty years of observing him, knowing about his schooling and history, that he couldn’t read or write?

How could Joyce Laing not see that after fifty years of having no autonomy, when she ‘asked permission’ to take his weavings, he likely had no belief that he was allowed to refuse? (Being realistic, he was right, his refusal would almost certainly have been disregarded.) I also feel that a lot of the search for this kind of art was for the aggrandisement of the finders; the artists themselves were so disenfranchised they would have had little or no say in the display and sale of their work.

How could no one see that his mutism was the only way he could retain some sliver of autonomy? The simple fact that he would speak when away from Craig Dunain is telling.

There is much more in this book, and lots of distressing NT privilege on show, with constant references to Angus being ‘allowed’ to weave being a good example. I have ordered a more recent book, Silent Weaver, so will update this once I have read it.

But finally, the thing I realised only last year, the statement I am now willing to make:

Angus McPhee is likely one of us. Bullied, abused and tormented, he found solace in two things common to so many of us – his love of animals and his art. He is one of our elders, someone we should remember with respect.

Angus McPhee died in 1997.

I’m just surviving…

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This post, that I discovered via Inner Aspie, rings very true for me.

Once again, I’m wandering round the house on my day off, feeling jittery and close to tears, my skin prickling. I can’t listen to music because I can’t take the additional sensory load. I can’t cook because of the smell. I can’t work in the garden because the sun is too bright. Of course, I could force myself to do all these things,, but you know what? I want to do them and enjoy them, just like any non-autistic person would. I don’t want to push myself through things that should be pleasant, colouring them with overload and formless anxiety.

The only good thing to be said for this is that at least I now have an explanation. I’m not a useless procrastinator; there is something happening that makes me feel this way. Of course there’s also this, the knowledge that things aren’t going to change, the infuriating knowledge that whatever I do I am going to waste a lot of my life like this.

I was educated in a tradition that said that if you don’t have something tangible to show for your efforts at the end of each day then you are a failure. Try as I might, I cannot shake off that lingering voice in the back of my head. Look at that weekend, it says. You spent half of it sitting on the sofa reading, when there was all that stuff needed doing. You have a long list to get through and you’ve barely touched it. You are a failure.

I’m still adjusting to this knowledge of my difference. I’m still holding up my experience, examining it, asking is this autism? or is this just me being a failure? and trying not to conflate the two.

But I have stuff that needs doing, and this damn sensory overload is standing between me and getting it done…mahfaceitgo128397453235625000

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