Monday, 25 September 2017

About those 'low-functioning' autistics...

In my last post, I talked about the myth of the ‘high functioning’ autistic. Now I’d like to examine the issue of the supposedly ‘low functioning’ autistics.

Functioning levels are not something intrinsic to the autistic individual, but rather an indication of ‘how well this autistic person can pass for NT’, i.e. ‘normal’. The things that are likely to get an autistic judged as ‘low functioning’ include the following –

-They can’t communicate orally. (This, above all.)

-They’re not toilet trained at an age when most NT kids are.

- They seem - and I stress seem - ‘unresponsive’ to other people.

-They stim a lot, noisily, or at times and in places deemed ‘inappropriate’. 

-They have a lot of meltdowns.

-They fail IQ tests. (More on this below.)

There is an assumption that there’s a clear dividing between ‘high’ (HF) and ‘low’ functioning (LF) autistics – ie that we think/react differently or even that the LF don’t think at all. It’s especially assumed that if an autistic isn’t speaking orally, that means they have nothing to say, that their intelligence is minimal, and their potential almost non-existent. Their abilities and strengths get ignored, and if they express anger with their situation, it’s presumed to be just meaningless rage, somehow intrinsic to their autism.

Try to challenge how ANY autistics are treated, and you’ll bump up against these assumptions. You’ll probably be told that you “don’t understand” that “these people” have a lot of “problems”, and hence, in their minds, that it’s okay to do anything which might make them ‘pass for normal’. LF, in too many people’s minds, means ‘worthless’ or even ‘sub-human’, and so all sorts of horrible ‘treatments’ of ‘these people’ are justified. There’s a serious human rights abuse issue right there. Not to mention that this actually puts ALL autistics at risk, because at any point in our lives, any autistic can be deemed ‘in need’ of these treatments[i]

Yes, some autistics can and do have difficulties with things like knowing when they need to go to the toilet, or understanding what is being said to them because of auditory processing issues, or co-ordinating their limbs well. Well guess what, many so-called HF types have these difficulties too. Our abilities vary a great deal from one autistic to another, and an autistic can be ‘high functioning’ in some areas, but totally ‘low functioning’ in others.

This is backed up by how, whenever I read the words of non-speaking, ie supposedly ‘low-functioning’ autistics, I find that what they say isn’t radically different from my own internal experiences. The difference is one of degree, more than kind, and trying to define us by arbitrary levels sets up a false division. The only real difference is that I can (usually) communicate orally.

So when I see a supposedly ‘low-functioning’ autistic, I see something different to what most NTs see, because I’m looking at them through autistic eyes.

When others see an autistic ‘inappropriately’ stimming, I see an autistic trying to self-soothe, or one who needs to express their delight with something, eg a food treat, or seeing a favourite person.

When others see an autistic having ‘constant’ and ’inexplicable’ meltdowns, I see an autistic driven beyond endurance by sensory overload, communication challenges, auditory confusion, or similar.

When others see a ‘violent’ autistic, I see an autistic wild with frustration at their inability to communicate, or how no-one will listen when they do try to, or at how people treat them as though they’re stupid or unable to hear or feel, or who put them through trauma-inducing therapies like ABA.

When others see an ‘infantile’ faecal-smearing autistic, I see an autistic who is deeply sensory-seeking – or perhaps one who has learnt that this is how you make people actually notice you, even if it’s only to scold.

When others see an ‘unloving’ autistic who screams if touched and rejects hugs, I see someone with painfully sensitive skin, but who nonetheless is capable of love and affection, in their own way.

When others see an autistic who scores very low on an IQ test, I see one who was probably overwhelmed by an unfamiliar situation and people, or one who has auditory processing difficulties that get in the way, or who has severe problems with co-ordination, leading the testers to think “they don’t know what an ‘x’ is”, when in fact they do know, but can’t get their hands to point to the right picture.

When others see an autistic who ‘perseverates’, or who has a meltdown if dragged away from their favourite thing, I see an autistic with a special interest, who needs their favourite object or activity to keep calm, and who almost certainly hasn’t been given enough transition time, not to mention one who could, oral-speaking or not, make this into a life-enhancing hobby, or even a career.

When others see an autistic who ‘won’t let’ their family go places like out to dinner without ‘embarrassing’ meltdowns, or who ‘doesn’t appreciate the efforts’ their parents put into taking them on holiday in ‘nice places’, I see one who is never prepared for outings, who is ‘thrown in the deep end’ of strange and overwhelming experiences, and who finds crowded and unfamiliar ‘holiday spots’ sheer torture. In short, someone who isn’t trying to make their parents miserable, but one who is themselves miserable.

When I see an autistic who can’t communicate verbally, and is presumed ‘unintelligent’, I see an autistic who hasn’t yet found, or been given, the right means of communication.

I could go on, but you get the picture. And my biggest point is, that I see this NO MATTER THE AGE OF THE AUTISTIC, AND NO MATTER THEIR SUPPOSED ‘FUNCTIONING’ LEVEL.

To those who think that autism acceptance somehow doesn’t apply to LF autistics, I say this.

While all autistics are vulnerable to ill-treatment, and in desperate need of autism acceptance, I believe that LF autistics are actually the ones MOST in need of it, both for their own sakes, because they’re almost certainly the ones most at risk of abuse and mistreatments, and because if one autistic is at risk, we all are.

LF autistics desperately need those around them to stop, drop what they’re doing, and really look at them. Without judgement or pre-conceptions. They need to be accepted absolutely as they are, before those around them can really help them.

I’m not saying that there aren’t difficult parts of being autistic, I’m saying that the biggest chunk of our difficulties is caused by the lack of understanding and the right support from others – and that THIS IS TRUE FOR ALL AUTISTICS, NO MATTER THEIR ‘FUNCTIONING’ LEVEL. Instead of striving to ‘eliminate’ their autism, it’s far better if you work with it, strive to actually understand the kid, and go from there. 

So I will not let myself be artificially separated from the LF, nor abandon them to the not-so-tender mercies of those who claim to “know best” how to “handle” them. Because they’re my sisters and brothers, or the next generation of us. I’m not letting them go. I will continue to advocate for the LF when they can’t, and encourage others to listen to them/read their words when they are able to.

And I support all other autistics, and our allies, who are doing the same. We can’t afford to let anyone divide our autistic community. Because their, and our, very well-being is at stake.

[i] Also read Amanda Forest Vivian, “They Hate You. Yes, You.”, pgs. 124-127, in Loud Hands, Julia Bascom (ed), Washington DC: The Autistic Press, 2012.

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.

Saturday, 27 May 2017

Analysing Responses to ABA Critiques

I recently did a post about why I loathe ABA. What I noticed, in doing my research for it, is that there are an almost standard set of replies you tend to get from the pro-ABA crowd, when you critique it. I’d like to take those replies one by one, and analyse them.

1) “But my ABA isn’t like that”. Often called the “not-my-ABA” response. There is more than one possible reason for this.

a) You’re doing the ‘Not-ABA’ ABA. It’s quite common for other therapies that aren’t actually anything like ABA to get called that. If it doesn’t insist on compliance and repetition ad nauseum, doesn’t try to ‘normalise’ the child, or use any of the manipulative tactics I outlined in my post on ABA, then chances are it’s not actually ABA. Count yourself, and your child, lucky. But be aware that others aren’t so fortunate, and don’t generalise your own experiences to all ABA.

b) You’ve got the ‘nice’, ‘new’ ABA. The more modern ABA doesn’t use physical punishments, and its manipulations tend to be disguised under a layer of niceness, smiles and hugs. But don’t be fooled. If it still uses classic ABA techniques such as discrete trials and emotional withdrawal, and still demonises autism and tries to suppress autistic behaviours, it’s still ABA, and still harmful.

c) You’ve got the classic ABA, but you’ve been brainwashed not to see it. It happens. A lot of the ABA ‘therapy’ is actually training the parents into accepting that whatever the therapists do to the child is ‘good for them’. A typical ‘defence’ from these brainwashed parents is to insist there’s no difference between ABA and ‘normal parenting’ of the child. It should be obvious that there’s a world of difference between training a kid not to run out into traffic and trying to eradicate something that’s intrinsic to the child’s very nature. But they try to deny it anyway. Here’s a typical example, and an autistic response to it.

2) “But my child loves it/the therapist”. Again, several possibilities.

a) You’re not seeing the signs that say they don’t. Are you ignoring meltdowns? Are they frequent, or were they frequent at first, but then the child ‘settled down’? This is a danger sign – they’ve learnt that their fears and wishes will be ignored, and that they can’t trust the adults around them to respect their needs. It’s also possible that you’re simply not reading them right – our emotions are frequently not visible to non-autistics. 

However, the first generation of younger autistics who have been subjected to ABA are now grown up, and their opinion of ABA is pretty negative. Read here, and here, and here, for more on this. Read this too, by a parent who saw the light – unfortunately too late for their young son.

b) They’ve been brainwashed too. Here’s how it’s done. When children are being emotionally manipulated, having their boundaries disrespected, and/or having the therapist withhold favourite toys, etc, until they express the ‘right’ emotions, they often lose touch with what they really feel, and might even have convinced themselves that they ‘like’ it, after all, they’re always being told that they do, and adults are always right - aren’t they? 

c) They might simply want the ‘goodies’ offered. This one is an extension of c), and the result of the manipulation. When all your toys and favourite things are only available to you during therapy, at the discretion of the therapist, yeah, you might appear ‘eager’ for therapy too.

3) “But it works!” The Holocaust worked, if your goal was to eradicate most of the Jews of Europe. The Hiroshima and Nagasaki atomic bombs worked too, if your goal was to end the Second World War, and never mind what it does to the Japanese people. Just because something ‘works’ doesn’t mean it doesn’t cause immense damage along the way. You need to ask yourself, is it worth the cost?

You also need to ask yourself, what is your definition of it ‘working’? Is it the making over of your child into a ‘normal’ one? Or stopping them from ‘obvious’ autistic behaviours, such as stimming? Be warned that normalisation of this kind has a VERY high cost. Your child is far more likely to self-harm, become aggressive, get abused, become an addict, or acquire low self-esteem, depression, anxiety disorders or other mental health issues, as they get older. Is this really what you want for your kid?

It might be of course that your goals are simply things like getting them toilet trained. ABA is not the only way or even the best way to achieve this. There are other therapies out there that are far better and far more respectful of the child’s autonomy and autistic way of being. It’s worth remembering that we tend to be late developers, and even without rigorous ‘therapy’ of this kind, we can eventually reach the goals you want us to reach – in our own time, and when we’re ready.

It's also worth remembering that ALL BEHAVIOUR HAS A REASON. Yes, even the faecal smearing, headbanging, screaming, etc. If parents can figure out the reason for the behaviour, they stand a better chance of diverting their child’s attention to something else more socially acceptable or less harmful. Without that, you run the risk of eliminating one undesirable behaviour, only to have it replaced with something even worse, as the original need has not been met.

4) “But it’s scientific!” This is an outgrowth of ‘but it works’ (see my comments above). A good question is, what do they mean by ‘scientific’? It seems to largely mean ‘because we say it’s scientific’, and/or ‘because our trials prove it works’. This supposed ‘effectiveness’ of ABA is largely unquestioned, by the people that do it and the parents that support it, at least. (Plenty of autistics have other views of course, but we’re largely ignored.) 

There are three things wrong with this. Firstly, self-validated ‘research’ is not convincing scientific research at all. Just because someone says ‘my product is great!’, doesn’t mean we should take their word for it. Secondly, at least one trial has shown that ABA works no better than other therapies. And lastly, of course, that ABA is harmful even when it does ‘work’.

5) “It’s only a few high-functioning autistics who oppose it”. This usually goes with something like “you don’t understand my child”, or “the most severely autistic need this”. This is an issue I’m planning to address in another blog post, so here I’ll only say that –

a) It’s more than a ‘few’, and not just autistics, but many parents and former ABA therapists as well.

b) It’s not only the ‘high-functioning’ or even the very young who get ABA.

c) We get to define what harms us. Not the therapists.

One final note -  I have noticed when researching ABA that it’s a tremendously mixed bag. Because it’s become so popular, all sorts of people are offering it, with or without classic ABA training, and with all sorts of modifications upon modifications, and even, as I have said, many therapies that aren’t in fact ABA at all but are called that (in the US this is usually for insurance reasons). 

I acknowledge this. HOWEVER the truth remains, that the more classic ABA elements there are in your ‘mix’, the more harmful it is likely to be. Please, think very carefully before continuing down this path. For your children’s sake.