Sunday, 22 April 2012

"Extreme Love" v. self love

I recently watched a documentary on BBC iplayer called "Louis Theroux - Extreme Love - 1. Autism". I'd like to say it was a heart warming, sensitive programme about individual families struggling with autism, but ultimately succeeding because of the power of their love. alternatively, I'd also be happy to say it was deeply insulting to anyone on the autistic spectrum, that it demonised the "low functioning" while erasing the "high functioning". my real opinion is...complicated.

a big part of what makes it complicated is Justin. Justin is probably the "highest functioning" of all the autistic individuals we meet in the documentary, but I'll come back to him.

first, I'd like to explain the perspective that I have. I'm a "high functioning", officially diagnosed, anti-cure female autistic. I use quotation marks when describing levels of functioning because I find the LFA/HFA divide unhelpful on both a practical and an ideological level. it is based primarily on an individuals perceived capacity for verbal communication which, while it is a major part of many autistic peoples personal struggle, does not define anyone's experience (for example, one mother in the documentary mentions that her son is considered severe, but shows fewer problem behaviours in class than his more verbal peers). verbal communication is also not constant; a child who doesn't say their first word till after their 5th birthday might become fluent in 2 or more languages later on, and even the most "high functioning" autistic adult can be rendered completely non-verbal by sensory overload. the LFA/HFA divide also allows the NT community to ignore autistic self advocates by either demonising or infantalising the "low functioning", while invalidating the "high functioning" autistic experience. ideologically, I don't see a difference between self- and officially diagnosed autistics, but I mention my diagnostic status so that it might be slightly harder for anyone reading this to dismiss my perspective.

so, back to the documentary. the first thing to note (when watching from the autistic perspective) is how the adults seem to ignore signals from the autistic children. at one point Justin is clearly becoming stressed by Louis, who is asking questions that Justin a) can't answer and b) can't clearly articulate why he can't answer. Justin's mum tells Louis that he's becoming overloaded as if Justin isn't even there, which just adds to the problem. adults talking about the autistic children as if they're not there is a running theme not only in this documentary, but in the majority of documentaries about autism. I suppose it's because they assume anyone who can't talk must be unable to understand language. I'm non-verbal during panic attacks and unable to use any form of language-based communication during meltdowns, but I can still understand everything that is said to me or near me (and, during panic attacks, I can type, text, write or finger spell). I see no reason to assume that  permanently non-verbal (or currently pre-verbal) autistics can't understand what's being said around them.

most of the parents also seem to deal with meltdowns as if they are just bad behaviour. they are consciously aware of the difference, that their children are stressed by routine changes or sensory overload, but they shout at them in the same way they'd shout at NT children who were demanding sweets. this is just as difficult to watch as talking about the children in front of them, but the solution is much less clear cut. as an adult autistic, I don't know what I would do to deal with that kind of situation, and saying that the way many people deal with it is "not the best way" without offering any suggestions for how to do it better doesn't help anyone. the parents also have other things to consider alongside the psychological well being of their autistic child, including that child's physical safety and the physical & psychological effect on other family members including themselves and are, generally, already very stressed by juggling these concerns.

returning to the main point of this blog; Justin.

we meet Justin when he's preparing to leave the specialised autistic school that the documentary is based around. he lives at home with his mum, twin sister and several brothers (I forget how many brothers, we don't meet them) (all NT). he writes, and proudly shows Louis some home written foreign language dictionaries and a novel. he is anxious about leaving the school, but deeply frustrated by many of his fellow students so, in that way, he can't wait to go.

I felt I could relate to a lot of what Justin did and talked about. we both got very angry when people at school took the piss, and when Justin is called into the office for threatening another student, they use the patronising "remember the strategies we talked about before?" tone that I remember so well. Justin reeled off a list of 5 such strategies that had been given by the staff on previous occasions, such as try to ignore them, tell the teacher, move away from the person... all things that sound great in theory but don't work in practise. ignoring them translates as "pretend there's no problem till you explode", while the other suggestions would, in practise, be more likely to get Justin into trouble for being disruptive than actually solve the problem, especially if he's already wasted time trying to ignore them and now has to move away without explaining himself or get the teacher's attention immediately before reaching snapping point. Justin says he tried to deal with it, he tried 4/5 staff-approved strategies, he couldn't ignore it, the other student wouldn't stop & followed him when he moved, the teacher did nothing. they change the subject and tell him he won't be able to get away with that at the new school.

when Justin gets home, his mum says exactly the same thing, but adds that if he threatens to stab anyone outside of school he could get arrested. Justin claims to not believe her but, in a way, it doesn't matter if he believes it, or even if it's true or not. the message is the same. what he feels is unacceptable. there is no way he can express it, the suggested coping strategies don't help, he just has to stop feeling that way or keep on getting into worse trouble. he almost certainly believes his mum, but he can't see a way out. like many young people on the spectrum, Justin has very little social contact outside of school and family, so this condemnation from mum & school leaves him completely isolated, feeling like the whole world is against him.

another aspect of Justin's story that was difficult to watch was the way he'd internalised many of the prejudices felt by the adults in his life. these prejudices are usually expressed unwittingly by well meaning professionals and parents, but are essentially that autistic people are less human than NTs, and that the value of an autistic person relates to how "high functioning" they are. when Louis asks Justin's mum  about his diagnosis and, when she says he was diagnosed as severe to start with, he talks over her about how much better he is now. he's proud that he can now be seen as a real person, and he wants to make sure everyone can see he's not "low functioning" any more. later, at school, Justin says a fellow student is "throwing a hissy fit". the event is not shown on screen, but it is almost certainly an autistic meltdown. as we know, autistic meltdowns happen when the mind is overloaded, either by a change of routine or too much sensory stimulation. if he thought about it, Justin would know it too. the problem is that it's much easier to distance himself from his fellow autistic students than it would be to confront this prejudice in the adults.

this internalised prejudice is something I really struggle to deal with, both in my own mind and when I see it in others. I am, in many ways much "higher functioning" than Justin. if you met me on the street, I could probably pass for NT with very little trouble. my sensory issues are mild or easily avoided, I don't need routines, I can chose not to stim, and it's easy to pretend. easy, but not right. I'm not NT, or some sort of strange psychological half-and-half, I'm autistic. I don't want to be NT, and the only way for people like me to make life easier for kids on the spectrum is to be ourselves, out, loud & proud. I know what to do but I am weak, and that was the worst part of watching the programme.

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