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 You can’t see if we have withdrawn from attempting to ‘do’ relationships, or hold down jobs, or do many other ‘normal’ things, because they’re just too overwhelming and difficult.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.

Thursday, 11 May 2017

Why I Loathe ABA

I’ve always been suspicious of ABA, but I’ve held back on commenting on it much in the past, because I wanted to know what I was actually objecting to. But I’ve found that the more I researched it, the more my horror deepened. The result is that I am now more opposed to it than ever, for the following reasons. (Bear with me, this could be kind of long.)

1) Its Behaviourist Origins. The roots of ABA are in the behaviourism of psychologists like B. F. Skinner. I wasn’t impressed by this theory when I first encountered it at university more than 20 years ago, and I’m even less impressed now.

Behaviourists are only interested in measurable human behaviours, and regard underlying causes of these behaviours as irrelevant, or as something that will change if the behaviour is changed. Lovaas followed their ideas when ‘treating’ autistic children. He even saw autistics as ‘not-people’, empty shells, or raw material that, in his own words, he could ‘assemble into a human being’. 

ABA’s behaviourist approach tells them that autistic behaviours can be ‘extinguished’, and the child will then become ‘normal’ as a result. So, for instance, if an autistic child is stimming, ABA ignores WHY the child is stimming, ie what need it fulfils, and simply works to suppress it. 

2. Its lack of understanding of autism. Because ABA sees autism as just behaviours to be extinguished, ABA therapists usually have zero training in what autism actually IS. In fact, many of them have few qualifications and little training at all, in anything other than delivering the ‘therapy’. They consequently lack any understanding of the underlying neurology. They fail, most of all, to understand that autism is intrinsic to our very beings.

Even where ABA therapists do consider our motivations for behaviours, they invariably get them wrong. And they not only don’t really understand us at all, but refuse to try, or to listen to us when we try to explain. (They tend to simply reply with more jargon instead.) 

3) Its Alarmism. ABA therapists will tell you that your child only has a certain developmental ‘window’, and that if you don’t put them through intensive ‘intervention’, as young as possible, they are ‘doomed’. They paint a scary picture of your child becoming a faecal-smearing, head-banging, non-verbal, non-toilet-trained, highly dependent adult, if they don’t have this therapy.

It’s nonsense of course. It entirely ignores that autism is a developmental DELAY, and that there is no predicting how any child will develop in the future. They may not progress even if they’re ABA’d to the max, or they may progress just fine without it, but in their own time. Because a child is not doing ‘x’ at a given point, doesn’t mean they will never do it. Autistic personal histories are replete with instances of sudden leaps in abilities and skills. I have experienced them myself.

But ABA promoters don’t want you to know that, because that would take money out of their pockets. Make no mistake, ABA is primarily a money-making enterprise, and autistic children and their real needs and developmental trajectories come way down the list of importance. (It also seems to have some of the hallmarks of a cult, but that’s a post for another day.)

4) Its Creation of Compliance Junkies. ABA places great emphasis on training the child to do exactly what the therapists and other adults around the child want, when they want, as they want it. The child is not allowed to say no or refuse to participate. It uses repetition ad nauseum, till the child learns to ‘behave’, ie to do what is demanded, over and over, regardless of whether what is demanded makes any sense to them, or is even useful to them. They learn that their needs and wishes will be ignored, and that they must comply or else.

The end result is that ABA’s compliance/approval junkies lose touch with what they really feel. They become approval seekers, always doing as they are told, ignoring their own feelings and invasions of their personal and physical boundaries, and thus they become ripe targets for any abuser.

5) Its Abusive Nature. Forty plus hours of ‘work’ per week? Much of it boring and repetitive in the extreme? What other young children have that expected of them? The rigid insistence on the therapist/parent ‘winning’ against the child’s desire to get out of it is abusive in itself. The child’s will is systematically broken.

And that’s without the physical forcing often done – I have watched video after video where the child is pushed to do the ‘right’ thing with ‘hand over hand’ (ie the therapist forces the child’s hand to pick the right card etc), or pushed into or pulled out of a chair. Even supposed ‘rewards’ can be physically invasive, tickling and grabbing the child for a bearhug was also common. 

Manipulation is also frequent, and can be a form of abuse. Emotional withdrawal when the child does something ‘wrong’, or taking away the child’s favourite things and doling out time with them as a ‘reward’ for compliance, are common tactics. Any distress the child displays over this is ignored. Meltdowns are also ignored, as ‘unwanted behaviour’ that must be ‘extinguished’. They are not seen as the cries for help they actually are. 

Originally, ABA was accompanied by hitting or yelling if the child didn’t comply. Some (though not all!) modern ABA tends not to do that, leading some proponents to claim it’s ‘different’ to ‘old’ ABA, and hence not harmful. But don’t be fooled. Physical violence or no, mental/emotional abuse is frequent and almost intrinsic to the therapy.

6) Its Ignoring Consequences. Some of the first children who went through the whole ABA-for-years thing are now young adults. Many of them now suffer from PTSD, depression, anxiety disorders, low self-esteem, fear and mistrust of adults, or other mental health issues. Yet the ABA industry has never done any follow-up on the long-term consequences of their ‘therapy’, that I’m aware of. 

They also refuse to acknowledge that extinguishing an essentially harmless behaviour can see it replaced with another and far worse one, if the original need is still unmet. Suppressing stimming, for instance, can lead to an individual developing self-harming habits instead, such as cutting or gouging their skin. Or they might develop addictions, aggressive behaviours, suicidal ideation, etc.

But even these things, bad as they are, still don’t get to the heart of what I loathe most about ABA, which is this…

7) Its Demonisation of Autism. Autism is cast as a Big Bad Thing, a horrible ‘disease’ or epidemic, which has ‘stolen’ your child and which only ABA can ‘rescue’ them from. Parents are told that autism is ‘ruining’ their child’s life, and potentially that of the parents and the rest of the family also. So ABA is saturated in the autism-negative mindset. It promotes normalisation, at the cost of the child’s autonomy and natural way of being. It’s not alone in this, of course, but it does play a big role in perpetuating all this negativity.

The truth is that autism simply *IS*. It comes with its share of difficulties and problems, but it’s not a horrible thing to be in itself. The horrible part of being autistic is how we are treated, including by ABA therapists and parents who, having swallowed the rhetoric, have lost sight of the child in front of them, at least for now. Some do come out of this trance later, and regret what they’ve done, when they see the results in their kids. But many seem to be almost brainwashed – as do their kids.

ABA proponents have a standard set of answers for criticisms like the above, which I’ll get to in another post (this one is long enough!). For now, I have this to say – 

Autistics have the right to BE autistic. They have the right to behave autistic, to develop at their own pace, to receive support that actually helps them, and to be free of being coerced into behaving like the NTs they are not. They do not deserve to have an essential part of their very being quashed, denied, hated and forced into repression.

Please, parents, don’t ABA your kids. For their sakes, and your own.