ABA – Applied Behaviour Analysis – is a polarizing therapy in the autism community: For some it is the holy grail of treatment, for others it is an abusive practice. When we began an ABA playgroup with our autistic son when he was three, I was largely unaware of the controversy or details; I just saw the opportunity to meet other autism parents and to learn more about my son in a therapy-based setting. Even so, there were some elements of the therapy that disturbed me.
For example, their insistence that my son not be allowed to just line up and play with vehicles in the break. My thinking was they were already asking so much of him during the learning sessions, why couldn’t he be allowed to do what he wanted with vehicles on the down time, just because it was typical autistic behaviour? The vehicles were there and visible, it seemed like a cruel tease to me that he was barred from this self-soothing and simple activity. By barring his access to play in this manner, the breaks for him would end up with tears or even meltdowns. To put that in proper perspective though, you’ve got to know that lining up vehicles was my son’s primary – and often only – form of play each day at home. He was deeply obsessive and controlling about it.
Another example, and the one this post is primarily about: My son’s happy dance. When my son is happy, he hums, flaps his hands, and bounces up and down, or runs back and forth across a room (he’ll do the running instead of the bouncing if he’s really feeling the joy). At the ABA play group, they would stop my son expressing his joy in this way, by either tapping him on the shoulder or holding the sides of his arms, or signalling that he must be quiet. The touches didn’t simply stop the happy dance though, they inevitably upset him since he really didn’t like being touched like that (he’s more receptive to deep pressure for what that’s worth). So he’d go from very happy, to quite miserable. This struck me as rather cruel and even un-necessary; wasn’t his happy dance just his own and innocent way of expressing his joy, why were they so determined to stop it..? Needless to say, we did not enforce that stopping-the-joy approach in the home environment, and I did wonder whether the approach would have ever been successful anyway, since this happy dance seemed so deeply embedded in his behaviour.
And so it was that the happy dance continued. And continues to this day. And now I deal with the unforeseen consequences of what I thought was my open-minded acceptance of his difference. Now I have regrets.
My son’s happy dance is the one strong behaviour that makes people stare at him in public, and steer clear of him in public too. If that was all it was – the staring and the steering – I could still convince myself that I was right. But there’s more. The hum part of the happy dance dominates a room. Making it hard to have a conversation with anyone else or listen to the radio or just relax. The running back and forth becomes a hazard in a smallish house of four people. The constant bouncing up and down is ruining the furniture, as my son has become a larger child (the poor couch squeaks under him and is sagging in his favourite spots). But there’s more…
My younger son, my two year-old, has picked up the happy dance as his own. He now also hums and runs back and forth when he’s happy. He used to just do it when his brother was around, which I thought was sweet – like he was in-tune with his brother’s joy and expression of joy. But now he’s adopted it as a behaviour as his own. And when other people stare I can’t say or think “don’t stare you judgmental ignoramus, he has autism,” because he doesn’t have autism. It’s just a remarkably annoying and unusual behaviour, solely picked up from another child. When both boys are humming and running in the house at the same time, it’s pretty much impossible to safely cross the lounge or hear yourself think. This is a multiple daily occurence now.
A seemingly harmless and special difference, has become a problem. And I can’t help thinking that if I’d just listened to those ABA therapists, and followed through more, we wouldn’t be in this mess. If I didn’t like the methods they were using to stop the happy dance, I should have discussed that openly with them – suggested an alternative perhaps – instead of silently adding it to my internal list of concerns about whether this was the right thing for my son. I should have openly shared my concerns with the therapists, instead of presuming that this was just how ABA was done and had to be done, I should have recognised what I had plenty of evidence for right in front of me: That ABA is personalised and receptive to the child. I know why I didn’t confront them properly; I didn’t want to seem ungrateful and so much of what they had done with him was actually working. (My son had gone from a screaming, fearful, angry child, to one who tried to take part and ended up very much enjoying his sessions with the playground. And I learnt a lot too through that group, about autism and about my own son.)
I think it’s so important that we encourage parents to voice any concerns, instead of feeling like the ignorant lesser party in therapies, because if the parents don’t full understand and support a therapy, it is that much less likely to be successful in the long-term.
You may wonder what happens now when I attempt to stop my son’s happy dance. He doesn’t cry, or have a meltdown or stop being happy. What he does, because he is a typically contrary and annoying six year-old right now, is hum louder and flap harder while staring straight at me and laughing, because he thinks it’s funny to do the exact opposite of what he’s told. He does that a lot. It’s a real problem with him lately. I’m working on it!
He still naturally happy dances every day, many times a day, and I hardly ever crack down on it if his brother isn’t around and if it’s not interrupting conversations or whatever. I still think it’s important to let him have that outlet in his own way. But I’m cracking down more now in public and around his brother, so he learns what all children must learn: Not all behaviours are always appropriate, even happy behaviours have their place. That’s life, and that’s fine, it’s what’s required in a world where we share space and time with other people.
I’ve noticed a small reduction in the happy dancing (without, I must emphasize, any reduction in actual happiness), which is great. At least it’s not getting worse or staying the same, so I’ll take the small victory for now. I’m sure I’d have more success if I tried to stamp it out completely, but as I said, I still have concerns about whether that is best by and for him. I have had no success yet in reducing the behaviour in my youngest, who loves his older brother and treats him like a role model. As my youngest gets more words and stops seeing his older brother doing it so much, it should be easier to reduce the behaviour. I very much want it gone before he starts kindergarten, I don’t want him being isolated and marked out as a target by his peers because of this. This is not part of “who he is,” this is a solely learnt behaviour from another child who has a very real neurological difference which explains that origins of the behaviour for that other child.
I do wonder if perhaps there was a “sweet point” for altering this behaviour in my autistic son: A point at which stopping the happy dance wouldn’t have been so upsetting as it was when he was three, and before it became so much more deeply entrenched as it most likely has become over the years. If there was, I think we missed it. But I firmly believe it’s never too late to take action to make our children’s lives better, which my son’s – in my opinion – would be, if I can get him to stop happy dancing all the time.
I know this post will annoy and maybe upset some people, particularly those who were so supportive a while back of my open-minded acceptance and encouragement of this aspect of my son’s difference. But I felt I needed to write this post anyway. I need to share my doubts and regrets and even continuing confusion about all of this; it is part of my journey with my son and his autism, and part of my journey as a parent. These are the judgment calls we have to make sometimes, over what may seem trivial to some (“a happy dance, so what!”), but impacts on our family life every single day many times over. I don’t pretend to have the answers, I screw up along the way, but I never stop searching for how to do the best by my son, for who he is as an individual that must find his way through this world.
So if you, on the contrary, do have the answers for me – if you can set my mind at ease, or feel you must dissuade me from this path I’m on, or encourage me to be even harder on him than I am, or do it in a different way – then I invite you to share those answers and explain to me where those answers come from.
In the meantime I shall take comfort from the fact that my home is filled by annoyingly happy children. That, at least, seems like an important success.
Some of the other posts I have done about ABA and my son’s happy dance:
- “A Dance of Joy” (29 Nov, 2010)
- “Changes to ABA recommendations in the NZ ASD Guidelines” (9th July 2011)
- “Food rewards in therapies for autistic children” (12th June 2011)