Life after Diagnosis

Lizard Parent Julia shares the next stage of her and her son Michael’s journey that is Life after Diagnosis.

The 12 months after an autism diagnosis are the hardest that a parent has to face. Your whole world dies. All your plans and dreams for your child are gone, and replaced with uncertainty. I remember when I was pregnant with Michael I would tell my husband ‘oh isn’t it sweet, we’re going to have a little you running around’. And he would say ‘no it has to be a little you’. We would then argue at length just who our kids were allowed to resemble. Basically we were sickening and you should all be very glad we mostly had these little talks in private.

Then Michael was diagnosed at 20 months and we started at the Lizard Centre soon after. I remember going to a talk for parents at the beginning and seeing a video. In the video there were two little boys, both starting ABA at age three. Their outcomes were very different. One is able to go to mainstream school and on to college. The other learns to speak only about 70 words and has trouble riding a bike well into his teens. I know watching that video, that every parent was secretly hoping their child would be like the first little boy and not the second one.

I was his first therapist because I wanted to make sure that if he was upset, at least it was with me. It somehow made it better than waiting in the next room imagining everything.

But it’s not really like that. The outcomes of course are much more nuanced than a fifteen minute video can possibly show. And they don’t just depend on the therapy or on chance, but on what unique challenges your child is facing. Is it severe or mild autism. Is there ADHD. Does the child have an intellectual disability on top of the autism.

I remember a talk by Nicole Rogerson around the same time, whose son Jack was diagnosed with moderate autism many years before. He was one of the many children that would end up somewhere in the middle. Not like the first little boy in the video and not like the second. Yet it was a fantastic outcome. He had a job, he had a relationship with his family, he could drive and catch the bus and joke around the dinner table. And listening to her I remember setting myself a similar goal.

Even then I could see my original goal of all my children getting scholarships, and also into selective schools, and then getting over 99 for the HSC was not going to happen. But one day my child would be able to have a relationship with his future siblings and joke around the dinner table. One day he would be able to work, whether it was stacking shelves or computer science. I wasn’t sure if my changed goals were a little victory or a big defeat. But there they were and working on them was to take up by days from then on.

After Michael was diagnosed we started ABA therapy straight away. And to tell the truth my husband and I both HATED it at the beginning. We hated the idea of it, and the way it worked, and the way it made our child cry. If I had a coherent parenting philosophy, which I didn’t, this was completely against all of it. I was his first therapist because I wanted to make sure that if he was upset, at least it was with me. It somehow made it better than waiting in the next room imagining everything.

We are big believers in evidence-based treatment and this was the most evidence-based treatment there was. We could see the results with so many other children.

But we told ourselves we would try it for six months. We are big believers in evidence-based treatment and this was the most evidence-based treatment there was. We could see the results with so many other children. None of them looked remotely traumatized.

So despite all the rubbish we read about it online we kept at it. I remember lying in bed discussing it with my husband, both of us counting down the days until the six-month trial period we had set ourselves was over. Meanwhile we did it fully, immersed ourselves. If we were going to be fair to this therapy I felt that we really had to give it a full chance.

I can’t describe how awful those first few months of therapy were. My little boy, who wasn’t even two years old, yet, would spend the time in a corner. Nothing could get through to him. He wasn’t interested in toys, or bubbles, or balloons. All he did was cry, stand in the corner stimming, or run from one end of the room to the other. Unlike most other children at the centre, his initial assessment results were all at zero. At most skills he had the level of a six month old, even though he was just over one and a half.

After a month and a half of ABA he started to learn. We found a few rewards that he would work for and he started to understand the concept of doing something quickly for us, and then getting the reward for it. Those first few programs were heartbreakingly simple. He had to learn things like looking up for a loud noise, to press a button and to bang a drum. All of these things had to be fully prompted for a long time.

After a month and a half of ABA he started to learn. We found a few rewards that he would work for and he started to understand the concept of doing something quickly for us, and then getting the reward for it.

But then he started to get it. Amazingly, my ‘unreachable’ child started to learn . He stopped crying, started getting rewards, and being aware that I was a person, and that the words I said had meaning. Another therapist started to work with him and I could hear way more giggling coming from the room than crying.

And once he got it, he started to learn so quickly! He started understanding commands, improving in fine and gross motor skills. Michael needed support in every facet of development and he got it. There were programs targeting communication, programs teaching him to understand pictures, others for imitation and play skills.

Don’t get me wrong, there were still bad days. Especially as a therapist. I would put a jigsaw puzzle in front of him and only take one piece out, and he couldn’t put it back in. Just slide it behind him. A four piece jigsaw puzzle aimed at a one year old, and here he was as a two year old totally unable to grasp what I was even trying to get him to do. I would have to prompt him over and over.

It took us six months of prompting to teach him to point or wave or do a ring stacker by himself. Thousands of trials. When I say he started to learn quickly, this is a relative term. Many kids go through whole categories of flash cards in the time it took Michael to learn one single picture. But it was a world away from where we were, and that’s all that mattered to us.

He can now do an eight piece jigsaw puzzle, then do the ring stacker, and then get a reward. He can point or wave or gesture. After only six months of ABA therapy, his cognitive skills had improved from those of a six month old to those of an eighteen month old. Of course, he was 28 months old at the time. But it was so much better I didn’t care!

And while he still cries and throws tantrums like any normal teenager, he only does it once or twice a day. He can even work for tokens, which I never thought I would see.

I know he can communicate his needs, I know he will be able to make friends, and I know he is learning new life skills every day. And for all that I am profoundly grateful.

Even on bad days I look at his summary sheet and it reminds me that today he did something by himself for the first time. Or that he got 100% in imitation.

I know that Michael is likely to require support for the rest of his life. And predictably he will be nothing like either of the boys in that video. As I get to know him better, with his improved communication skills and increasing levels of cheekiness, I want less and less to see him become someone else. Many things I have grown to accept as part of the package. He is not a little me. He is little Michael. Whatever he is, he is an amazingly special and affectionate little boy who is my biggest treasure.

I don’t know yet if he will ever be able to go to a mainstream school or how much of a ‘conversation’ we will be able to have. But I do know that he is making the maximum amount of progress towards a happy and independent life that it is possible for him to make. I know he can communicate his needs, I know he will be able to make friends, and I know he is learning new life skills every day. And for all that I am profoundly grateful.

To learn more about Julia and her son Michael, visit her blog at www.michaelsmum.com