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.

Saturday, 22 April 2017

Arguments For Use Against Anti-Vaxxers

Lately I’ve found myself getting into arguments with anti-vaxxers on social media. A tiring and unpleasant experience, it’s brought home to me just how cult-like the whole anti-vax movement is, and how closed-minded they are. You cannot reach them, and I certainly don’t argue with them with that in mind. Rather, I post in hope of reaching those who are undecided.

This can be a tricky call. Statistics are good, but too dry to really cut it. Not to mention the anti-vaxxers simply come back with their own stats and links that supposedly ‘prove’ their contentions. Never mind that these are either from contaminated sources (ie those of like mind, in a sort of circular argument), or, on closer inspection, really don’t prove anything of the kind they claim. [‘Vaccine injuries’ are a typical example.] We need something more.

So if any of you find yourself arguing with these people, and realise it’s not the anti-vaxxers you need to reach but those who might be wavering, I’ve realised there are two main points that are likely to appeal to them. I plan to use them myself, and if you’d like to use them too, feel free to link to this post, or to copy and paste, with suitable acknowledgement of the source, or a link back to here. Anyway, these are the points I’ve come up with -


If you’re someone who’s not sure about whether to vaccinate or not, think back over your life, and ask yourself the following questions. 

a) Were you raised in a developed country? If yes, it’s likely you received whatever vaccines were common at that time. And if for some reason you weren’t, it’s likely that most of those roughly your age (what researchers call your ‘age cohort’) were. If however you grew up in an under-developed country, the immunisation record for your age cohort is likely to be far more patchy or non-existent.

b) Do you remember kids of your generation getting sick and/or dying of any of the diseases that can now be vaccinated against? I’m thinking here of diseases like TB, whooping cough, diphtheria, scarlet fever, measles, mumps, rubella, and chickenpox. If you’re older, did you suffer through these diseases yourself, or remember them ‘going around’ as epidemics? And during these epidemics, did you hear your parents talking anxiously of who might be infected, and how (eg from attending a party with infected children)? Do you remember whole families being quarantined, or friends you weren’t allowed to visit for ages or never saw again after they got sick, or relatives who died young?

c) Did you grow up before or after the vaccines for these diseases were introduced in your country? Younger generations are far more likely to have been vaccinated for pretty much all of these diseases, if they grew up in a developed country.

If the answers for these questions are yes, yes and no, or yes, no, yes, or even no, yes, no, then that’s one powerful pro-vaccine argument right there. Some of these diseases are now coming back in Western countries of course – and, not-so-coincidentally, right in the very places where vaccination rates are dangerously low.

Just to give one example, my own generation grew up AFTER vaccines for whooping cough, diphtheria, TB, tetanus and scarlet fever were introduced, but BEFORE the MMR (measles, mumps and rubella) vaccine came in. So we didn’t get the first group of diseases, but we did get the second. I know, however, that those as little as ten years older than me did commonly get whooping cough, while those only a generation younger didn’t get any of these diseases.

If that’s not enough to convince you, consider the following –

2) Rational Common Sense.

Anti-vaxxers frequently argue that these diseases are ‘still happening’, but are being mislabelled by doctors, researchers, scientists, hospitals and the government. This can only mean that either –

a) Doctors, nurses, etc, are so incompetent that they can’t recognise these diseases, even though the symptoms are widely known, and pretty unmistakable. It’s difficult to mistake whooping cough for ‘just a regular cough’, or measles for ‘just a rash’, for example. Yet the anti-vaxxers would have you believe that all medical staff etc are this incompetent. All of them. All of the time. Everywhere. In every clinic and hospital, everywhere in the Western world, and possibly beyond. How likely is this, you must ask yourself?

And yet, according to the anti-vaxxers, it’s either this, or –

b) That these same doctors, nurses, hospitals, researchers, government departments, etc, etc, are all in cahoots, conspiring to obscure and deny the truths, and keep the rest of the world’s population in the dark.
For what reason, you might ask? Good question. The anti-vaxxers never really answer that. Conspiracy theories abound, but tend, as do all such theories, to lack all rationality. They become an end in themselves, defying logic and plain old-fashioned common sense. We all know how difficult it is to get one or two people to keep a secret for long. How logical is it that hundreds of thousands of people, perhaps millions, from all around the world, are engaged in such an enterprise? For decades on end? Someone, somewhere, somehow, would start to spill the beans. And probably lots of them.

The anti-vaxxers of course claim that people already have, but weren’t believed. Firstly, these supposed ‘whistle-blowers’ invariably prove to be very few, and also part of the anti-vaxxer crowd, with the same confused and misleading ‘data’. Secondly, it still doesn’t explain WHY this was done. 

Explanations about ‘Big Pharma’ wanting to make a profit etc, etc, don’t really meet the logic test. Doctors, pharmaceutical companies, etc, don’t actually make that much on vaccines, on the whole. Not to mention that pharmaceutical executives, doctors, scientists, etc, live in the same world we do, after all, and by and large want the same things as we do – a safe world for their descendants to grow up in. 

Yes, there are ‘rotten apples in every barrel’, and a few might be corrupt, selfish, greedy creatures only in it for the money, but it defies logic and a basic understanding of human nature to think they are ALL like that. I’ve met some of these supposedly terrible people, and they’re human beings, just as we are. (It’s also worth noting that one of those truly ‘rotten apples’, who was struck off after having found to have faked his research for financial gain, is none other than Andrew Wakefield, yep, that’s right, the ‘guru’ of the anti-vax movement himself. Hmmmmm….)

Put simply, conspiracy theories about vaccines belong in the same category as ones about alien anal probes and Elvis still being alive.

So, if you’re reading all the screeds of supposed ‘facts’ the anti-vaxxers post everywhere at every opportunity, turn to these two things to test their claims – experience and logic. The anti-vaxxers fail spectacularly, on both counts.

Sunday, 2 April 2017

My Autistic Acceptance Day post - On Allies - Again!

Lately I’ve been thinking again about allies. By rights, adult autistics and the parents of autistic children should be natural allies, as these parents are raising the next generation of us. We should be working together. But alas all too often we’re distinctly not. I think the reasons for this are many.

On the one hand, parents have been fed the message that autism is a Terrible Thing, an epidemic or disease, that it’s caused by vaccines, mercury, the ‘wrong’ gut bacteria, too many antibiotics in pregnancy, or whatever the cause de jour is this week. They’re frequently told, right from diagnosis, that their child needs forty plus hours a week of intensive ‘therapy’ from a very young age to ‘get rid’ of the autism, or their kid is doomed. They’re told that their child will have no future, their marriage will break up, their other children and indeed their whole family will suffer if they don’t.

Terrified, overwhelmed, having no understanding of what it really means to be autistic, they succumb to all this, and some take years to work their way out of it. Many, alas, never do, and become vociferous advocates of the therapies, or rabid anti-vaxxers. They are sadly not open to hearing from adults on the spectrum at all, and can even be hostile. Others simply ignore us, believing that we’re ‘too high-functioning’ to ‘really understand’ their kids.

Adult autistics, on the other hand, have had some pretty negative experiences at the hands of various NTs - sometimes, sadly, including our own parents. We’ve been ridiculed, yelled at, condemned, beaten up, put down, manipulated or abused in various ways. We’ve been rejected by our families, thrown out of home, denied access to services, ended up homeless, incarcerated in mental institutions, misdiagnosed, fed drugs or given electric shocks. We’ve been arrested, imprisoned, and some of us have even been murdered. Many younger adults have gone through all that ‘therapy’, and are suffering PTSD as a result.

Those of us who manage to endure, or evade the worst, know our own survival is always risky. We live with the knowledge of What Can Happen. We’ve been injured beyond belief, and it often shows. To expect the most traumatised of us to be friendly to NTs is like going up to a wounded tiger and patting it on the head, and expecting it to purr.

Add in a compliant and unquestioning media, the highly efficient publicity machines of big anti-autism groups, a largely still-ignorant or pathologising medical and psychiatric profession, the routine exclusion of autistics from organisations, groups and government processes that affect us, and it’s no wonder we so often don’t interact.

And yet. Amazingly, some parents do make it through all the garbage they’re fed. And some autistics are willing to engage in dialogue with parents, to make the effort, to try to reach them. And when that happens, it’s something special and incredible.

For those of you who don’t know, I am one of the admins of a Facebook group called ‘Autistic Allies’. We are a mixed group of autistics and parents of autistic children, both on the spectrum and not. It was originally started by the mother of an autistic child, who wanted something different from the usual autism parent groups, with their pity parties, ABA promotion, anti-vaccine talk, and insistence on normalising their kids. She’d even been thrown out of some of those groups, for disagreeing with all the negativity.

Soon, other like-minded parents joined her, along with some of us autistics who were interested in working with these more open-minded parents. The group has evolved along the way, and its primary purpose now is to educate people, so that we are all empowered to go out there and change the public dialogue around autism. We are thoroughly autism-positive in our approach, allowing no promotion of ABA or anti-vax or anything else that is negative about autism. 

I feel that we are doing important work. Not all will agree, I know. But to turn the public discussion of autism around, to eliminate the negative stereotypes, first of all we need to educate and prepare each other for the storm. To build our ally base. Only then can we go out there and fight the good fight, educate others in turn, and change the public perception, and hence treatment of, autism and autistics. There is *SO* much ignorance out there. We’re very much about fighting it, in our own way.

And I think it’s a unique group. We work hard to keep it free of the various types of drama that plague just about all autism parent and autistic groups, being pretty strict on trolls, baiters and general trouble-makers of any neurology. We boot those who break the rules, and let them back in only if they promise to behave. We wield the Big Stick quite often – and you know what? We just get more and more popular! People love it! So much so, we’re now over 2000 members and still growing, and we’ve had to set up a sister support group.

A big reason for our success is that we insist that the dialogue between the two groups must be, and remain, respectful at all times. Parents must come in prepared to listen and truly take in what autistic adults are telling them. Any parent who says stuff like “that’s just your autism talking”, or “you’re too high functioning to understand my kid”, or “you don’t know ABA like I do”, will find it hard in our group!

Autistics, on the other hand, have to refrain from the kind of abuse hurling, angry outbursts and factional disputes that are sadly all too common in some of our autie groups. We know all too well that it’s not a job for everyone - many autistics have been hurt too badly to willingly engage with any NT, parent or otherwise. But those who can do it, do, and it works.

Although as far as I can tell we’re the only group like this, that doesn’t mean no-one else can do the kind of thing we’re doing. I see positive stuff happening elsewhere, sometimes, but it’s patchy, and in many cases diluted by a lot of other stuff happening that’s not so positive. 

It needs a conscious effort to choose the autism-positive approach, and engage in dialogue. But it can be done. We’re doing it, and it’s time more started doing it. Time more parents truly listened to us. Truly understood that we’re not saying what we do just to make their lives harder. Truly understood that we do know what their kid is going through, that we’ve been there, done that, and are in fact trying to help them. If only they’d listen. It’s time for them to do so.

Because when I look around at all the ‘Autism Awareness’ stuff that’s happening RIGHT NOW, even as I write, when you understand the roots of it all, and that autism ‘awareness’ all too often means autism ‘bewareness’ – ie that the message is overwhelmingly negative – you realise just how important it is to offer an alternative.

I repeat – adult autistics and parents of autistic kids need to work together. Separately, we can end up lost, alone and isolated, powerless and knowing that the world doesn’t understand us. But together, we can move mountains, and change the world.