Autism and ABA. Progress or Punishment?
This is my son Oscar. As you all know, he’s five years old now and has Autism. Oscar had completely normal development until he turned two. He could talk and had over two hundred words in his vocabulary. It took just short of a month for him to loose them all and regress back to the point of becoming a baby again. For the first couple of weeks, his speech appeared to become slurry and indistinct, I put it down to him being a little lazy and the terrible twos. During the third week, he went quite quiet, not talking much at all and he’d had quite a bad cold, so I put that down to him feeling unwell but kept my eye on him. By the fourth week, his words had vanished. I don’t know what’s more heart breaking-never having heard your child speak, or them loosing their voice after having heard them and facing the possibility that they might never find it again. Oscar’s diagnosis process lasted about a year. He had observations and assessments from psychologists, physiotherapists, paediatricians and speech therapists. When it began, I already knew, as his mother, what the out come would be and rather than wallow in depression and the “What could’ve been” (I’ll talk about that one later), I decided to embrace our life, my son and this situation and be pro active. I read and researched. Day and night. I became an authority on everything Autism and decided to put several things into practice.
Firstly, I spent night after night drawing flashcards (I didn’t have a printer-life would’ve been so much easier!) and laminating them. I had categories for them all. We had clothing-everything from a nappy, to socks, to a vest etc. We had animals, food items, household objects (things that included a tap and a door handle etc), you name it, I drew a flash card for it. Then I spent day after day on a category with Oscar, showing him the picture, repeating the word. I made games of it. I seriously hammered that boy with words and pictures (but not to the point where it distressed him) and slowly, slowly his words started to come back over the course of several months.
I designed a ‘Now and Next’ board and stuck it up in the living room (Velcro tape is a God send!) along with rows of photographs of places we visit and people we see, as well as specific tasks like bath time and dinner time etc. That way Oscar could always see what was about to happen and this helped calm him down. If we went shopping, he would insist on taking his ‘Shopping’ card with him :) He loved the routine and still does, it gives him some safety and control.
I invested in some sand timers so he could physically see time. So when we went for a bath, he knew he had twenty minutes (he would stay in there for hours, given the choice!) to play and that was his lot.
I bought puppets. I had Angry Monster who would have meltdowns and it was Oscar’s job to calm him down and reassure him. I had Doggy who was shy and Oscar had to talk to him and bring him out of his shell. It really worked a treat.
Last night I watched a program on BBC4 called Autism:Challenging Behaviour. Here’s the link if you missed it:
For those of you who can’t access the link, it was a program about ABA (Applied Behaviour Analysis) and those who were for and against the method. ABA is basically a form of teaching Autistic children. It is an invasive form of teaching, the teacher will be on top of that child constantly in order to get him or her to do set tasks for rewards. In the show I saw they used sweets and fruit as a reward for a child completing a set task. If a child gets upset or stressed during the session, they carry on regardless and push the child to do the set task. As I watched, I found myself going through a range of emotions. I got so angry at points, I wanted to throw the TV remote.
A man I found particularly offensive was an ABA practitioner called Gunner Fredrickson. His philosophy is that Autism can be cured or to use his word ‘fixed’. He equated Autism to a bad accident, he said “You go into hospital, there will be pain, blood and tears but then the doctors will fix you”. I watched in horror as a 2 and a half year old child he was working with, in such obvious distress, was ignored and almost punished (not physically, I should add!) for not completing his tasks. I found it absolutely appalling that ANY child be treated this way. This was all because the child didn’t want to take a piece of cake from this man. Children have the right to say NO, too. What a ridiculously pointless task.
Another boy in an ABA school had to be trained to eat. He could only manage baby food as solids made him gag, he was five years old. The teachers had to endure him crying, lashing out and being sick but eventually succeeded in getting him to eat solid food. At an anti-ABA school, an eleven year old boy was living on meal shakes because he had the same behaviour. The teachers there predicted that eventually he would be fed via a feeding tube.
I watched another little boy have a meltdown at an ABA school. He threw himself down on the floor screaming because the teacher wanted him to change tasks. Whilst on the floor, he got his arm stuck under himself and obviously hurt it. When he stood back up, he was rubbing and shaking his arm. The teacher didn’t even check him and ignored the incident as if it never happened.
I do agree with some of the ideas of ABA-to a point. I believe that Autistic children should be pushed to come out of their shell and interact with the world BUT not to the point where it is detrimental to their emotional well being. Who knows where Oscar would be now if I hadn’t hammered him with flash cards day after day. The difference being that I NEVER ONCE made him cry over it. However, he did develop an intense dislike for the colour green a couple of years ago. I can’t remove green from the world and knew he had to get over that one pretty sharpish or we were all in for a miserable life and so I painted my living room green. Three days of meltdowns later and he was over it. Another year he developed a phobia of Christmas trees. Again something I can’t change as they’re everywhere you go at Christmas! And so with a sad heart, I put a tree up. He bust his lip head banging over that one but last year he was fixated by the tree and never left it alone! I was finding baubles in the oddest places for months afterwards! :) He also hated toys made of rubber. Now this one is really a no brainer. It is his personal choice if he doesn’t want to play with anything made of rubber-I wasn’t going to force him because to me that is just cruel (a bit like the guy with the cake!!) and so I never bought him rubber toys. Simple.
The point I’m making is, you have to strike a balance and choose your battles. Christmas trees were unavoidable as was green (and similarly the boy in the program with his feeding behaviour), it’s something you have to change, for their quality of life and yours as a parent too. But the dislike of rubber and the not wanting to take the cake-then it’s their personal choice and should be respected like anybody else’s. As far as learning is concerned, then by all means push but not to the extent of emotionally hurting them so badly that they end up in floods of tears. I understand the concept of rewarding for good behaviour-it’s the same with any child but I don’t agree with torturing that child in order for him/her to produce your idea of ‘good’ behaviour. Encouragement and praise will always be the key for me.
What I found most interesting was my own emotional reactions to seeing these children. A lot of their behaviours I can see in Oscar and they’re the things I find most endearing about my son. Never, ever would I want to change his ‘flappy’ hands, it’s a sign of his happiness. If someone offered me a ‘cure’ for Autism, I wouldn’t take it for anything in the world. Autism is part of my son, it’s part of who he is and what makes him so lovable. I wouldn’t take that away EVER.
I don’t believe Autism can be ‘fixed’ and I wouldn’t want it to be. I don’t agree with forcing Autistic children to conform to what someone somewhere has decided is the ‘norm’. We are all different. We are all unique. People should be seen, loved, valued and appreciated for who they are, not a label. I learnt to shed the “What could’ve been” mentality years ago. I dropped any expectations I had for Oscar when his diagnosis began. It was the most liberating thing I’ve ever done. Instead of focusing on what he’ll be like when he grows up, whether he’ll get married etc, I celebrate his achievements now, in the present.
I wouldn’t want to remove him from his world, it’s far more interesting, innocent and full of wonder than the one I inhabit. Oscar’s Autism is more like a superpower to me. I marvel at him spotting a plane in the sky that is a mere pin prick to my eyes. I love that he has radar ears and can pick out the sound of a train from miles away.
Next time a child lays their head down on the floor to spin the wheels on their toy car from an odd angle, try getting down there and looking at it too. Or if, like Oscar, your child is fascinated with the underneath of the slide in the playground, have a nosey from that perspective. It really is a far more fascinating, rich and colourful world. I celebrate that, you should too.