“But it works”
It’s the most common reply I see from parents when autistic adults express opposition to behaviour modification therapy. I hear them tell the story of what has been achieved since their child has been in therapy, in order to convince others that they are wrong about the abusive nature of therapies like ABA. As I’ve listened I realise there is a lot of evidence supporting their claims, so I can only conclude that behaviour modification therapy does get the results parents want.
So, I’d like to explore what is behind the idea that behaviour modification therapy works. What are parents are getting from it? I’m going to do this by addressing the two most common reasons I see parents citing as evidence of the therapy working.
1 “Their behaviour has improved so much”
By this parents usually mean the child has stopped having so many meltdowns, or stopped being aggressive, or now does what they are told with less opposition…. or as one parent blogger I came across recently said “they are taught to be obedient”.
To be honest I can see why this happens. It’s simple really.
Any human being, no matter who they are, will eventually become compliant/obedient if they are subject for long enough to demands that they sit at a table and not move, eat, pee, hold a comfort item, express emotion or actually act like a human child for extended periods of time, or if they are made to repeat the same mundane tasks over and over and over again in exchange for tokens or lollies given out at the discretion of another person who periodically changes what you are required to do in order to earn the reward they have chosen.
Then when the child becomes quieter, more compliant, the therapy is deemed to have been “successful” and the autistic child “improved”, when in fact the therapy has been overwhelming and has worn the child down to a point where the child has shut down because they believe there is no longer any point expressing their desires, needs or distress. This is called “improved behaviour”.
2 “They’ve gained skills since we started”
This evidence is often followed by giving a list of things the child can now do…. talk, sit still, interact with peers, etc. And these changes have occurred, according to the parents, as a result of the child having been in therapy from when they were 2 or 3 years old, until they were 5 or 6 years old.
Of course, if your child’s doctor told you that your child would never do these things because *autism*, and that therapy was the only way for them to achieve things, and you didn’t know better, I can see why you might try the therapy. And then, if the child did achieve the things the doctor said they wouldn’t unless they had therapy, I guess I can understand why you’d believe the therapy brought about the change. It quite probably did.
It does work!
So, sure, behaviour modification therapy works. It does. It modifies autistic kids behaviour. But that defence is not adequate to validate or endorse the use of this therapy. It works by doing things that are unethical and damaging. We know there are better ways to support autistic people. Michelle Dawson, in her excellent and confronting article The Misbehaviour of Behaviourists: Ethical Challenges to the Autism-ABA Industry, says “when it comes to the test of ethics, to allotting autistics rudimentary ethical consideration, all sides and factions for and against ABA have persistently and thoroughly failed”.
Behaviour modification therapy has a history rich in false assumptions and bigoted and discriminatory ideals. It is assumed that the autistic way of being is inherently bad, wrong and harmful, and it is held as an ideal that autistic people to be whole and valuable must change and become something different than what comes naturally to them. Dawson points out, “False oppositions (if autistic children must be treated ethically then they will be doomed) and false equations (autism equals cancer) have elbowed aside empirical evidence and have become central to the legal, scientific, and popular promotion of the autism-ABA industry”. She says some of these false oppositions are
“Autism equals tragedy, suffering, and doom. Either autistic children are successfully treated through early intensive behaviour interventions or they are condemned to a life of isolation and institutionalization. Autism is incompatible with achievement, intelligence, physical and psychological integrity, dignity, autonomy, and learning: either you are autistic or you have access to these possibilities. Either the autistic gets ABA, and comes to resemble a non-autistic, or the autistic is doomed. Autism equals a nuclear bomb, a stroke, diabetes, a terminal illness, being “riddled with pain from a terrible accident”, and again, always, cancer. If you are against ABA then you are for institutionalization. If ABA is criticized then children will be destroyed. Autism is incompatible with humanity: either you are autistic or you are human. If an autistic is deprived of ABA then he will end up being thrown to the floor and sat on by four large attendants in a group home”.
And I agree. I have seen all of these brought up in conversations defending the horrific treatment of autistic people in the name of therapy.
Part of the trouble is that many parents don’t see what happens in families that choose no therapy. The doctors and therapists don’t tell them about those families. Maybe they don’t know about them either.
I know about them though. My family is one of them. Many of my friends families are as well. We chose a zero behaviour modification therapy approach and our children are thriving. All of the challenging behaviours parents claim therapy fixed have come and gone (and are still coming, and going) in our household with a no behaviour modification therapy approach. Time, gentle support, acceptance, patience and putting aside our own preconceived ideas about timelines and milestones have been all that is needed to see our kids progress.
The thing about children – all children – is that they do change over time. It is naive to think that if three years have elapsed the only possible reason the child has gained skills, become more proficient at self regulation strategies, and has less meltdowns when around other kids, is that they were in therapy.
Behaviour modification therapy is not needed for an autistic child to make progress, gain skills or live a fulfilling life.
But that is anecdotal. The professionals like hard data. Unfortunately, there isn’t a mass of publicly available evidence yet, but it is starting to come.
Have a look at this article, published in 2015, TRAINING BY REPETITION ACTUALLY PREVENTS LEARNING FOR THOSE WITH AUTISM, which says that the style of learning utilised in ABA, i.e. repetition of compliance behaviours, may be detrimental overall to the well being and further learning of autistic individuals.
Then read this paper by Karla McLaren, Research-Based Approaches to Autistic Ways of Learning, in which McLaren concludes,
“A small but growing number of multidisciplinary researchers are challenging the autistic stereotype and finding, in many cases, that our knowledge of autism has been built upon unsupportable ideas about normality, intelligence, sociality, eye contact, empathy, language development, child development, and communication.
“Much of this new, autism-positive research suggests that approaching autism in terms of valid human behaviors instead of medicalized deficits can significantly improve the lives of autistic people and their families.
“This culturally sensitive focus on autistic strengths and preferences is more supportive to the child, and also more supportive to parents, families, teachers, and therapists, considering how much time and energy it takes to try to extinguish natural and necessary autistic ways of being.”
So, while behaviour modification therapy does work, in that it does what it sets out to do, there are questions we must ask:
at what cost?
should it be allowed to continue to do what it aims to do?
and probably, would you like it to work on you?
More importantly though, we must consider why people want it to work. Why is it so important to defend it?
If there are other ways to support autistic people to live their lives fully and well, and that do not involve them being forced to appear to be something other than themselves or to abandon behaviours they find helpful, what is it about behaviour modification therapy that is so attractive?
I have to suspect that it is attractive because of the enforcing of compliance with societies norms.
If it is because compliance with societies norms is held up as essential for success in life, it becomes critically important to challenge whether compliance is helpful. If parents truly want what is best for their children, once they have heard autistic adults say that the best way to live as an autistic person is autistically, then should it not be an easy decision to make to stop defending harmful therapy and start seeking out gentler ways to support children to live authentically, even if that means norms are cast aside? Should we not value diversity in all of its forms enough to become advocates of it, instead of defenders of compliance enforcing therapy, especially when our children would benefit?