The first therapy that I even considered trying with Michael was ABA therapy. This decodes as Applied Behavioural Analysis and it involves analyzing a child’s behaviour (funnily enough) and then teaching them all the skills they need for life, broken up into chunks and practised to death. An important part of it is ‘reinforcement’ – that is, deciding early on that bad behaviour will not get your little one the result they want (they do not get the cookie after a tantrum) and at the same time teaching them what kind of behaviour will get them what they want. It might be reaching for it, it pointing, or whatever your goals are, but one of the aims of ABA therapy is to replace unwanted behaviours with other, preferred ones. When your driving instructor took you out to a quiet park and made you do right hand turns all day, he was doing a form of ABA with you. Or he would be if he gave you a cookie after each time you did it successfully.
Why did I choose ABA therapy to start with? It had the most evidence behind it and seemed to help the majority of children to learn to manage their symptoms. Some, about 45%, seemed to not meet the criteria for an autism diagnosis anymore after having this therapy. It only seemed to ‘not work’ on a very small percentage of kids and I just hoped mine was not one of them. Also when I visited my local ABA therapy centre (it’s called the Lizard Centre, and you can find them here) I was so impressed with all the little kids that went there. Almost all the therapy rooms had clear walls so I could see what they were doing at all times and they all seemed perfectly happy, engaged and learning.
When I was starting out I couldn’t imagine what ABA therapy (or any therapy) would look like with my little boy. ABA therapy is intensive and is supposed to take at least 25 hours per week. It works by harnessing the neuroplasticity mechanisms at work in the developing brain. But what can you even do with a 19 month old who doesn’t talk and runs back and forward all day? So this is what it looked like with Michael – remember ABA therapy is very personal so it might, and should, look quite different with another child.
Step 1: Assessment
First, Michael was assessed. Since he was only 19 months old of course this did not involve anything particularly difficult – mostly the assessors chased after him with bubbles and balloons and tried to make him look vaguely in their direction. They failed. He spent most of his time licking the glass and generally hiding from them in any handy corner. I got a printout of all the zero percents in due time and another one with a breakdown of various skills and Mikie’s age level at each skill. It went something like this:
Expressive Communication: 0-6 months
Receptive Communication: 0-6 months
Social Emotional Skills: 6-12 months
Gross Motor: 6-10 months
Fine Motor: 0-6 months
Cognition: 0-6 months
Visual and Gaze: 4-6 months.
His personal independence skills were his highest level, with some abilities in the 12-18 month level
It was not the sort of result to make you joyful. Getting over a result like that might legitimately involve some sort of alcohol and lots of chocolate, possibly together. However we did not have time to do that because then came
Step 2: Intensive Early Period
The first month of ABA therapy involved us going to the Lizard Centre three times a week for four weeks, and Mikie getting about two hours of therapy each time. At this stage what he was doing was ‘therapy’ in the same way that what Kristen Stewart does is ‘acting’. All the therapists were doing was trying to get him to notice them, and like them. They were trying to find something he liked and give it to him as much as possible so he associated them with good things.
My little boy, after first fooling everyone into thinking he could do nothing, was very suspicious at this point. He was so suspicious that he ignored all their attempts to be friendly and did not take anything from them. Or at least I liked to think so, the alternative being that he just didn’t care about any of the prizes we could think of. He didn’t like any toys so they were out. He didn’t like most food except his special fruit and chia bread so that was out. He hated chocolate, lollies, cars, balls, shiny things, bubbles and stickers. The only thing we could find that he liked at this early stage was cartoons and they were very hard to use because he would scream very hard as soon as they were paused. There were two hour sessions in there where he would sit on (or near) the lap of a senior therapist and just watch cartoons. They were that desperate for him to like them! I was in another room watching this over Skype and counting how many hundreds of dollars I was spending for someone to show my little boy cartoons. I gave up when I realized I couldn’t count that high without a calculator.
Step 3 : Therapy Begins
Eventually Michael did to the therapists what he had done systematically to me over the last 20 months. He made them give up. They gave up on making him like them first, realizing that this could be a six month process, and decided to keep ‘pairing’ as they started teaching him. They made up some early, developmentally appropriate tasks for him including:
- Looking around when a loud sound was played near him
- Reaching to request an item (as opposed to screaming for it or grabbing it)
- Simple imitation (banging a drum, pushing a car, shaking a maraca)
- Playing with a simple toy for 2 seconds
- Simple cause and effect toys like a toy piano or sound mat
- Placing the rings on a ring stacker
- Kicking a ball
- Sensory examination of objects (like slinkies, playdough, sand etc)
The way I taught him these things was to give him a cartoon he liked, then I would take it away until he did something for me that was vaguely useful. Then I gave it back to him for twenty seconds. And repeat. No one had ever attempted to make him do anything before so he was completely unprepared for this traumatic event.
His reaction was to kick, scream, bite, hit, and cry with the kinds of heartbreaking sobs that suggested that he would be dead within the half hour because I was slowly slicing him open. He did not want to bang that drum. Or press that button. He just wanted more Wiggles. And each time I had to prompt his hand to the button, and then praise him and show him a bit more cartoon. I had to ignore his cries except when I was making sure he couldn’t hurt himself. Then repeat. For two hours a day (initially), every day. It was a torture chamber for both of us. Other mothers spent their time trying to make their children happier. I felt like I was just making my one worse. What kind of a monster would deliberately make their child cry for two hours every day?
It was the worst time of my life. It was worse than the diagnosis by a factor of five. I lived for Mikie’s smiles, and for his cuddles. Here I was deliberately withholding cuddles until he banged a stupid drum! Or leaving him in the room with a therapist, where he proceeded to go hysterical for two hours, while I sat and cried myself outside while reading stupid conspiracy articles about autism.
Every night I would mentally cross off another day. I would think – I’m going to do this for three months and then try something else. Three months. Just last for three months.
Step 4: Lots of crying.
The length of the ‘Crying Stage’ was about one and a half months for us, with some decreased crying for another month or so. It was horrible. I have read books about other parents with kids starting ABA who cried for one or two weeks and even they were traumatized. It is awful. The only thing that kept me going was that he cried anyway. At this stage his skills were so limited that he cried even when he wasn’t in therapy – if I left him alone to stim (engage in self stimulatory behaviour like looking at his fingers) he would cry. He didn’t enjoy stimming, and he didn’t enjoy being by himself, it was just the only thing he knew how to do right now.
I did try a few other therapies while we were building up the hours for ABA, despite promising myself I wouldn’t. I tried Floortime and found the same amount of crying. I tried some other techniques showed me by an occupational therapist. Same amount of crying . I brought him to special needs playgroups. Same amount of crying.
After a bit of this I decided to just do ABA as much as I could, while we were searching for a junior therapist to take him for some sessions at home. Since it was Christmas and these therapists insisted, thoughtlessly, on having their own lives and families, it was pretty much just up to me for a couple of months.
The privilege of this was that although I got all the crying, I also got to see the first time that Michael started to learn.
Step 5: Little one starts to learn.
One of the most beautiful things you will ever get to witness as a parent of a special needs kid is when they start to learn. You can see it is only the beginning but the tiniest little steps look like leaps at a time when you have been standing still for months.
With Michael, we had two months of pages and pages of prompts. I prompted him hundreds of times for almost all of his programs. A tick (which meant he did something by himself without needing a prompt) was more mythical than the Loch Ness Monster – because there are at least photos of something resembling a Loch Ness Monster in some deep dark corners of the Internet and there was nothing looking anything like a tick on any of his programs.
One day I was doing the ‘torture therapy’ with Michael and as usual, sat him down, put a drum between us, banged it and said ‘do this’. And he did it! He actually banged the drum himself. Without me moving his hand. Without tearing his hand away from me, falling to the floor, and kicking and screaming. Just banged the drum with his little hand.
I wooped. I laughed. I bounced him up and down so much I had to go to the physio later. He laughed. It was wonderful. I gave him a cartoon and let him watch it for waay longer than I should have.
Then I paused the cartoon and instead of screaming, he imitated me again. We twirled. I got excited and the universe made sense again.
And then the little victories started.
Suddenly, there were ticks all over the pages. Mikie took three months to learn to put rings on a ringstacker (when I handed them to him) – but really it all happened in the last month, when he started magnanimously allowing me to teach him. He started to play with toys first for two seconds, then five, then ten. Even sometimes in his downtime he would approach a toy and touch it.
Step 6: the REAL learning starts
Now, Mikie started to accelerate. The learning curve was more of a straight line before – a very very horizontal one. Then it started to slightly curve and now it is going straight up. We are at this step at the moment and it is worth every second of suffering from Step 3. It took him three months to learn to put rings on a ringstacker as I handed them to him. It took him one month to learn to figure out which was the biggest and which one the smallest when I just gave him two. Then another month to put them all on, if I gave them in order. Finally, it took another month to figure out how to put them all on, when I gave them to him randomly.
The amazing thing is that the last step is so much harder than the others, and yet he did it in one month! He learned it so well that no matter what ring stacker I gave him, he could do it. He had understood why they were in the order they are, and tested each one as he put it on – he did not merely memorise the colours and put them on in the same way each time.
Even after this he took only a couple of weeks to learn how to put in nesting cups (using a similar method).
A typical day for us will involve 5-6 hours of therapy, which he LOVES! If a therapist is away (because they do still insist on getting sick and having exams) I do a couple of ours myself and try to stop. He then usually insists I go back in the room and keep doing therapy because it’s one of his favourite things and who says you get to take it easy mum? All the things I didn’t like about it – the rigidity, the structure, the repetitiveness – are the things he loves. He now often rewards himself. That is, he will do a task, then go over to his iPad and press play, or go over to his box of treats and get one.
He is now a very happy little boy. He is learning how to communicate. His behaviour is better than that of most 2 year olds on or off the spectrum. He is getting better at social games and loves playing Humpty Dumpty or Aeroplane with me and my husband. His smiles and giggles are the best feature of our house.
Six months after he started therapy, we took him to an external provider for another assessment. While his language skills were firmly at six months, his social skills and fine motor skills had improved to a 12-13 month old level. Best of all his cognitive skills had improved to about a 18-19 month old level (that is an enormous change!) and he was starting to communicate using gestures, the PECS visual system and had very few tantrums. He was in fact one of the best behaved little two year olds I knew. I accept that he may never go to university, and maybe will need to go to a special school for the rest of his life – although I strongly believe he will be able to go to a normal school with some support. Either way his happiness levels are so much higher now that I know for sure everything we did and we will do in the future will be worth it.
Don’t get me wrong. There is still a huge way to go. There is a lot to learn, especially in the language field and the fine motor skills and social skills areas. But this step is wonderful and I am savouring it. Getting here was half the battle.