Monday, 11 September 2017

So you think we're 'too high-functioning'?


Too often, when we autistic adults try to challenge the treatment given to autistics, we get a set of stock responses from some parents of autistic kids. They’re all variations on ‘you’re too high functioning to understand these people/the low functioning’, or ‘you’re not really autistic, because you can write/talk/live independently/have a job/blah blah blah’, or even ‘you’re not autistic at all, because you’re not like my kid’. Just about every autistic who challenges the treatment of autistics gets handed one of these dismissals sooner or later.

But, quite apart from the whole issue of functioning levels being nonsense anyway, there’s an entirely false bunch of assumptions wrapped up in this. So I have some questions for all those so quick to dismiss us and what we have to say as ‘not relevant’.

1) You’re sure we’re so ‘high functioning’? 

You see our writings, and jump to conclusions. But you can’t see behind the computer screen. You can’t see if we’re oral speakers or not, whether we need help to write or not, whether we use AAC or not. You can’t see how, even if we can talk, we may struggle to do it, or get ‘lost’ trying to talk to people because of auditory processing issues, or how stupid, alone or ashamed it makes us feel. You can’t see how we may need aides, or a lot of family support, just to get through each day. You don’t even know if we’re toilet-trained, or only partly so, or still struggle with knowing when we need to ‘go’.

Even if we do live ‘independently’ (or what looks like it), you can’t see behind us, to our executive dysfunction - the unwashed dishes or unvacuumed floors, the piles of stuff we don’t know how to sort, the struggles with getting to school or work on time, the jobs lost or the courses dropped out of – or the absolute rigidity we sometimes force on ourselves to prevent all this.

And even if we seem to ‘have our lives in order’, you can’t see if we struggle with anxiety or depression or other mental health issues. You can’t see if we have withdrawn from attempting to ‘do’ relationships, or hold down jobs, or do many other ‘normal’ things, because they’re just too overwhelming and difficult. You can’t see the times we retreat from public places because of sensory overload or too many social challenges. You can’t see the late-night crying jags, the pacing or frantic stimming or self-harming, the banging-the-wall meltdowns, the self-hatred or suicide attempts.

Or maybe you think if we have a job, or a relationship, or are attending regular school, then we ‘obviously don’t have any problems’? You can’t see the sheer lack of understanding from others that constantly fouls up our lives. You can’t see our co-workers or bosses ridicule, snub, manipulate, bully or simply fire us. You can’t see other students and even sometimes teachers reject, pick on or bully us at school. Or how we’re sometimes beaten up in the street, or abused by a partner, or by our supposed caregivers. You can’t see how often this ill-treatment happens, simply for being autistic. You can’t see how we lack the social skills or knowledge to prevent these things, or get out of them.

In short, you can’t see anything of our lives, or how well we may or may not ‘function’ in any given area of our lives. You don’t know us, you don’t know what struggles we’ve had or continue to have, so don’t judge us, or jump to conclusions.

2) You’re sure your kids will never be like us?

A mistake many parents of autistic kids make is assuming that because their kid can’t do ‘x’ by a certain age, that they’ll never do it. Or that they’ll never be independent, or have a life of any value if they aren’t ‘normal’. 

But this is simply not true. Not only is every child on their own developmental journey, regardless of their neurology (would you expect an NT three-year-old to live independently?), but we are often slower to mature than our neurotypical counterparts, which is no indication of our intelligence levels. We may not start talking till we’re twelve – and then go on to do public speaking about our journey. We may never speak, but learn to communicate in other ways – if those around us are listening. We may not get to higher education till we’re 25 – and then do very well at it. We may not live independently till we’re 30, or need to live in a group home, or be able to work with the right supports. Maybe we’ll even get married, have kids, a career, but just a little later or slower than others. Or maybe we’ll only do some of these things - but have lives worth living anyway. You can’t predict. So stop assuming they will never be like us.

3) You think we were never like your kids?

Even if we’re (apparently) ‘high functioning’ now, you don’t know what any of us were like when we were younger. You don’t know if we were non-oral-speaking till a late age, or slow to talk ‘properly’, or had a ton of speech therapy. You don’t know if we were late being toilet-trained, or had frequent huge meltdowns where we damaged things or hurt others, or whether we struggled with school or attended some form of special education, or didn’t even try to connect with other kids till we were teenagers, and so on. Unless you have or had some personal acquaintance with us as kids or teens, or we’ve told you stuff, you can’t tell. And even then, you won’t know the stuff we didn’t tell you. 

You just don’t know – what we were like as kids, or what your kids might be like, as adults. So stop dismissing us as ‘nothing like your child’.  

3) You think that only the most ‘severely’ autistic are ‘really’ autistic?

Even amongst professionals, that understanding has long been superseded and discarded. And we autistics don’t accept it either, because it means both our struggles and our strengths are denied or ignored, and because it attempts to divide our community. Even most of us who seem ‘high functioning’ (and I stress ‘seem’) don’t separate ourselves from our supposed ‘low functioning’ brothers and sisters, or our younger counterparts for that matter, because we see a continuum between ‘what they are’ and ‘what we are’. Any differences that do exist are those of degree, or stage of development, not type. We’re all autistic together.

This is why we oppose ABA. Some of us have already been through it, or something similar, and still bear the scars, and those of us who didn’t empathise with those who did, or who still are. We know how damaging it is, how those doing it to us fail to even begin to understand what autism really is. It’s also why we oppose a lot of other autism ‘treatments’ (e.g. bleach enemas), because we know them to be both a useless waste of money and actually harmful to us, not to mention all of them being based on the assumption that autism is a Big Bad Thing To Be.

And it’s also why we promote autism acceptance, not because we don’t have problems, but because even with all those problems, we can still take pride in being autistic, because, you know, it’s what we are, and why should we be ashamed of it?

So don’t jump to conclusions, don’t write us off as ‘not relevant’ or ‘not autistic enough’, or ‘too high functioning’ to be of any use to you in understanding and helping your child. We want to help, we come to you to offer our advice, and we hope that someday, you’ll be open to listening to us.

Because one day, your kids will be us.

3 comments:

  1. thank you. if only parents would listen.

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  2. I love this writing, so many people tell me my kids "should" be able to do something or be doing something because they are "high functioning". The fact is they can't do it, that is that.

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  3. Thank you SIGZ, this needs to be said - again and again and again.

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