Being a doctor

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One of the most unexpected things about diagnosis is the loss of the right to define yourself.

Just as you are presented with the word that brings all the disparate parts together, that explains both the things that are incomprehensibly difficult and those that are impossibly easy, everyone and their dog suddenly has an opinion on how autistic you are (or aren’t).

I’m guessing if you are male, a computer geek, an engineer or anyone whose adult life has in large part encompassed the hard sciences or the underpinning knowledge industry, the tendency is more towards ‘spot the autistic trait’ and enthusiastic searching for other (generally male) relatives back through several generations who can now be included in the autistic family.

If you have none of the above traits, the response is likely to be a little more… mixed.

Outright denial, or ‘but you have very mild autism, don’t you?’ is the commonest. Inviting you to participate in denial of who you are, painting that denial as a way to gain acceptance, a way to reassure the speaker that they need not worry themselves about any considerations or accommodations, is a classic NT response.

‘You may be autistic but let’s not talk about it!’ (phrased in various ways, both overt and covert), is another.

‘I don’t know anything about autism.’ (and I am not going to spend any time listening to explanations and educating myself, regardless of how useful it may be).

‘Let’s change the subject because I think you are heading towards asking me to make some kind of accommodation for your disability, and that will place me in the awkward position of having to say that I don’t believe you need that accommodation and I kind of suspect things might get awkward/ugly at that point.’

Four years on from my diagnosis, nothing has changed. I have pared back my life to a minimum. I still work full time, even though the physical and mental cost is enormous, because my one aim is to pay off the mortgage on my house. Once I have the security of a roof over my head that no one can take away from me, I will also have the foundation of the life I want to lead. I do the bare minimum of socialisation with work colleagues – the Christmas party is sort of  compulsory – and I have built a cheerful Facebook persona who posts cat videos and cheerfully owns the label of crazy cat woman (though I’m not entirely comfortable with the use of crazy). I work day shifts, though I live under the threat of return to evening and night shifts in the future.

I come home to an essentially silent house. No television, rarely any background music. Maybe one or two cars an hour pass on the dirt road outside. Everything is where I left it when I set out for work that morning (unless a cat has knocked it over). No perfumes, no strong smells. Maybe one message a month on the answering machine, that it will take me two days to be able to listen to anyway. Depending on the time of day and season, I know which parts of the house will be too bright or too warm to work in. If I need to lie in bed in the dark for an hour there is no one to tell me I am lazy, or I am giving in, or I am not trying hard enough. My occasional meltdowns are hidden from sight.

I am a doctor working in an emergency department, handling one of the least routine-based jobs it is possible to imagine. Dealing with people in all their unpredictability and emotional incontinence. (I had a whole lot of other descriptors there but deleted them. Strange how neurotypicals have no such consideration when labelling us.) No one I know lives the life I live outside of work in order to cope with the demands of the job, and yet it seems that, surrounded by health professionals, not one of them knows what autism looks like outside of Rain Man.

It has been occupying a lot of my thinking time because I have once again failed an exam. The parameters of the exam included the following:

  • An oral, face to face discussion with ten separate examiners one after the other. Compulsory eye contact, and comprehension of expressions and general body language essential to determine when you are on the right track.
  • Ahead of each discussion, five minutes to read a list of information, with or without photos and lab results – some, all or none of which may turn out to be relevant to the subsequent discussion.
  • A totally unfamiliar city requiring flights, hotels and a brightly lit overstimulating exam room with humming airconditioning.

Not only did I fail, but the areas I failed in were my specific strengths. On being asked why I had not immediately enrolled for the next sitting of the exam I was shepherded into a discussion with someone who has expressed doubts about my diagnosis in the past. When I asked whether any candidates in the past had been granted accommodations because of disabilities he admitted that this had occurred, but when I asked for detail he refused to tell me what kind of accommodations had been made or how you go about requesting them.

This is why autistics fail.

The exact details are specific to my position, but the same general response is experienced by autistics everywhere who need to pass an exam, an interview, an assessment. It doesn’t matter how ‘smart’ you are, whether you are being assessed at floorwashing or caring for a critically ill newborn. You can figure out exactly why you are failing but the likelihood of having the explanation accepted, let alone having adjustments made so you are on a level playing field, is still close to zero.

And it’s such a waste. I can only speak for my own experience, but I am endlessly frustrated at not being allowed to function at the extent of my abilities. I am a doctor with over 20 years of experience. I have an IQ of at least 160. I am very good at what I do. Yet a combination of recurrent bullying, insecurity, ostracism and pointless rigidity in systems that are set up solely to benefit NTs has limited what I can give back to a ‘humanity’ that most days seems to want only to exclude and deny the existence of me and my kind. The price I already pay simply to keep functioning in this job is simply airbrushed out of existence, as though it’s just some minor idiosyncrasy.

This tale is repeated again and again.

I am a doctor. You may be something else.

But I am willing to bet that in some way I am telling your story too.

Disclosure

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”

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

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

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.