When I started researching early intervention methods for my son, just after his diagnosis, I was completely opposed to ABA therapy as a concept. I disliked behaviorism. It was very different to the kind of parent I thought I wanted to be. I used attachment parenting and it caused me physical pain to ever let my child cry about anything – something that made it rather difficult to be the parent of a child with special needs who cried at EVERYTHING! It must have been very frustrating for him. Every time he wanted something, he had no way to communicate it to me. He didn’t know how to point to it, or go and get me and bring me to the spot where he needed me. The only way he knew to let me know what he wanted was to cry, and I would then try to work out what he needed by guessing and a process of elimination.
When it came to my son’s therapy though, ABA was an obvious first choice. There are many promising therapies coming through, but the only one that is ‘established’ is ABA – over and over again it has been proven to be extremely effective at teaching. Many of the other promising therapies are based on similar principles to ABA, and use the same picture communication system (PECS) as well as toilet training techniques.
I certainly had a list of other things to try if ABA didn’t work after three to six months, and that first month or two was extremely difficult (I have written about our first experience with ABA here).
ABA therapy is extremely expensive and time consuming. It needs to be done for at least 25 hours a week and it works by harnessing the neuroplasticity mechanisms at work in the developing brain. It involves endless drills and repetition. It involves constantly, for many hours a day, pushing a (sometimes very young) child to their limits – often making them do things they do not want to do at all. It is very hard on the parent too, especially initially. I would have loved to just watch him learn and play with him, but unfortunately kissing and hugging him didn’t seem to have much effect on his cognitive skills or speech development and he didn’t play with anything. I had no choice but to do therapy all the time, because non-therapy time was non-learning time for Michael.
What ABA Looks Like For Us
Over and over, my son has to do things that are very hard for him.
He has to concentrate on a picture book for an increasing amount of time – forty seconds at the moment. Forty seconds doesn’t sound like much, but it has taken us nearly a year to get to this point. He has to learn to do this so that eventually he can learn to read and write.
He has to learn to imitate. This means he has to concentrate on what I am doing (touching my head, or clapping my hands, for example) and then do it himself. He does it so many times that he can now do it very well, and has started imitating me even at times I do not ask him to. He has to do this because without the skill of imitation he will find it very hard (to put it mildly) to learn most things in life – talking, for instance.
He has to learn to ‘match’ items. 3D to 3D at first – he had to learn that the sock went with the sock, not with the ball. This was extremely hard for him and took us months. Now he’s on 3D-2D, so he has to put the sock with the picture of the sock, not the picture of the ball. This is also very hard for him, and he doesn’t want to do it at all. Eventually he will go on to 2D-2D, so he understands that this picture of a ball, goes with that picture of a ball. And in the end we will use this skill to teach him to read and write, letter by letter and word by word. I don’t think I have to explain why this will be important in his life.
He has to learn to communicate, in pictures at first, and hopefully eventually in words. Without learning to do this, he cannot tell me if he is sick, if something hurts, if he doesn’t want to go to bed because he’s still hungry or because he doesn’t feel well. He cannot tell me exactly what he wants for breakfast, or lunch or dinner. All he can do, if something happens to him that he doesn’t like, is cry. I try to guess as well as I can of course, but I hope that with the PECS system, in a few years I will have a much better idea of what is wrong.
He finds it really hard to learn PECS. He has to learn every picture for every item individually and painstakingly. Over and over I train him in, at the moment, just his favourite items. His favourite food, water, his beloved soy milk, his iPad, some of his favourite toys.
To train him in them, I have to put them in front of him, along with other things that I know he doesn’t want, and then I have to not give them to him unless he gives me the right card. At first, I only put the one card in front of him, so he can’t make a mistake. Then two cards, then three, so he can learn to tell the difference between the pictures.
He also gets trained in commands every day. Stand up, sit down, stop. We add a new one every week or two, and maintain the others. We have to run these as drills, because although he has been learning them for nearly a year he still regularly forgets them and confuses them for each other.
We don’t just do endless drills though. A lot of time in therapy we spend doing his favourite things in the whole world. I spend a lot of energy finding his favourite cartoons (and this changes every day, I can’t wait till he gets to a stage where he’s obsessed with Disney so I have something that will always work), discovering new foods that he will like. My therapists and I all throw him up in the air so much, and give him so many piggy backs, that between us we will be paying thousands of dollars to the physio (did I mention he weighs 15kgs?). We sing songs, we tickle him and cuddle him all day. We take him outside, where he goes nuts in the water and runs around the backyard.
Why ABA Works For Us
Typical children play with toys and imitate their parents all day – they are learning from when they wake up in the morning to when they fall asleep. They are constantly improving their fine and gross motor skills, their cognitive skills, their social skills, and they do all this through play. Through stacking the ring stacker, playing with blocks, throwing a tea party for their Peppa Pig figurines (hopefully without imitating the voice. WHY does she have such an annoying voice?!).
If my son were left to do what he wants all day, he would never learn to talk, to understand what we say, and his fine gross motor skills would be non-existent. I doubt he would even have the pincer grip. He’s not interested in toys for themselves, and therefore can’t learn the skills they are supposed to teach. So we motivate him to do these things – through his cartoons, and favourite foods, and the aforementioned back-pain-causing piggy-backs. Sometimes through discrete trials, and repetition, other times other methods are more appropriate. Always following his lead – if he is in the mood for sitting on the floor, we do one type of activity. If he is in the mood to run around, we do another one.
We never punish him for not being able to do something, that would be cruel and unfair. We reward him for being able to do it, just a little reward if he lets us teach him, and a bigger reward if he does it himself. We do not lose our temper, or raise our voice in any way. But we do not always give him what he wants when he wants it either. I doubt there are many parents of two year olds that do that.
The great thing is that our effort is paying off. His skills are improving in leaps and bounds every day. Not just his cognitive skills, social skills or fine motor skills – but life skills.
One day he may be able to go to a normal school with a lot of support, and we may be able to fade that support. He may be able to graduate high school, make friends (and he really wants to make friends, I can see it, he just can’t at the moment), maybe even learn a trade or go to university. If my husband and I are not in the picture, he may be able to live in the world, not in an institution. He may be able to travel to new places, to catch a bus on his own, or a plane – he may be able to go shopping for himself, do his own laundry, maybe even drive.
More importantly, to me, he will be able to tell me if something is wrong. He will be able to, maybe, understand a sentence, process it, and respond in some way (through words? Through pictures? Typing?).
Does ABA Therapy cause PTSD?
There are autism advocates out there that spend a lot of time and energy advocating against ABA therapy. We should definitely listen to their stories, I have read many of them. What they call ABA therapy, with the punishments, and sometimes some very angry people that shouldn’t be anywhere near young children, is not what I call ABA therapy.
They claim their therapy gave them PTSD, or at any rate inflicted considerable psychological damage. I am going to paraphrase Dr Cox from Scrubs here, but every single one of our parents does considerable psychological damage. That is one of the main perks of being a parent.
There is no solid evidence that it causes PTSD, other than anecdotal. Anecdotal evidence is completely worthless to me – I have ignored it regarding special diets, ‘alternative therapies’, vaccines causing autism, and I plan to ignore them equally in this respect. There is evidence that ABA works, solid evidence, and if I am not to use it I need equally solid evidence that it may harm my child.
Many practitioners of ABA aren’t fantastic, that is true, and of course you must be careful when choosing any of the people that spend time with your child. Autism sadly also coexists with many other conditions any of which could lead someone with it to develop PTSD, things like anxiety or bipolar.
I have seen many school age children that don’t get ABA that have hours long meltdowns every day when they get home, and many children that get ABA that have no meltdowns at all, or one every six months. I have seen adults with autism that had ABA and are leading full and happy lives – whether or not they display obvious signs of autism or where they are on the spectrum. I have seen many that did not get ABA that ended up with severe mental health issues, including multiple suicide attempts from the age of ten, again irrespective of where they are on the spectrum. But this is all anecdotal, it is my limited experience, and it does not prove anything. Until there is hard evidence for or against PTSD, parents and advocates will continue having their fruitless and repetitive arguments, so hurry up already people!
Does ABA Make People with Autism Go Against Their Nature?
Even if not claiming that it gave them PTSD, many people with autism claim that ABA makes them go against their nature. Of course, ABA can be completely tailored to the individual. You can include whatever you want in the program – if you want to leave the stimming alone, and not teach eye contact, you can do that.
I also wonder where we would all be, if we weren’t constantly fighting against our natures? I’m doing it right now. My son has me up at 2am, and it is my nature to sleep at 2am. Instead I am sitting in bed keeping myself awake by writing, and checking on him, as he quietly talks to himself in his cot. He will do this for three hours, before he falls asleep again.
I have fought against my nature since I was a very little girl. My nature is to lie in bed reading, or watching television, and eating mini m&ms. Instead I have had to get up, often very early. Go to school five days a week since I was five years old! I had to interact with teachers and children that sometimes I didn’t like very much. I had to learn to do things that I found very hard and uncomfortable, some things I hated with all my soul (any form of sport, science, design and technology,). My parents made me pay for things at the store, even though I hated doing that and was very shy. They found out I was nervous about calling, so they made sure that if we ordered out, I had to do it. They made me go to swimming, do sport, do chores, and they had no issues with smacking me if I did something they thought was wrong. I would never do this myself but I have survived, and have no flash backs at all to this awful, awful time!
Over and over, every day of every year in my life I have had to fight against my sitting-in-front-of-the-tv nature. Or my wanting-to-go-out-every-day-and-dance-and-drink-cosmos nature. If I hadn’t fought against it, I would not be married right now – my nature is very much against dating. Dating is awful, and awkward, and can be a horrible experience, and yet I had to go on many first dates before I met and fell in love with my husband.
I would not have been able to learn to drive, learn public speaking, and I would never have been able to clean Michael’s bath after he poos in it twice a week, without going very deeply against my nature. Many of these things that were deeply against my nature, are now my favourite (not so much cleaning the bath after he poos, that is still horribly awful).
Ironically, if I were free to do anything I wanted in life, I would have been very conflicted and I think very unhappy, like so many extremely wealthy people that seem to just kind of float.
Human beings need constraints. We need constrains to get us out of bed in the morning and more constrains to try things that we may initially hate, and may end up loving.
I am OK with my choices for my son, I am confident that with the information and evidence we have now it is the best choice and will give him the best chance of developing important life skills. So while the critics are, hopefully, spending time designing studies to test the PTSD hypothesis, or designing an alternative therapy method with results that are as good and that hold up to scientific scrutiny, I will be over here. Doing my trials and giving the piggy backs. Luckily at the moment my son seems to be extremely happy, and runs back to his therapy room after it’s supposed to be over.