Y. is a little boy full of energy. We often assume that children with autism are absent, living somehow within their own bubble. But, apart from a few moments of absence, as if he were lost in himself, Y. is alert and pays attention to everything that happens around him.

He seemed to follow a normal development until he was 18 months. He was pointing, making eye contact, and expressing himself verbally at the level of his age. Then he started to change. Verbal communication stalled and then regressed. Eye contact became more and more difficult to make. He was diagnosed with autism when he was around 2yo.

At present, his verbal communication is limited to repeating some words or replying to questions with yes or no. As many other kids with limited verbal communication, he makes himself understood by drawing the attention of the parent to whatever he wants with gestures or by placing himself close to his center of interest.

He loves to be out in nature. The forest is a few minutes’ drive from his place and his parents take him there a lot. He plays with the fallen leaves, gathering and throwing them in the air like confetti. He also likes swimming and being underwater. While I am talking with his parents in the living room, he moves constantly, goes up to his room and comes back.

Y. loves to eat and asks for snacks all the time. He is not a picky eater. Sometimes he tries to eat non-edible stuff. It’s an eating disorder called Pica.

Y. accepts without hesitation the small learning tasks that his mom proposes. He sits at his little table and completes the puzzle, writes following a model, and matches images with the corresponding words. However, his mom says, he must be prompted to work on this. It’s never his initiative.

When we all go upstairs so he can spend time in his multi-sensory room, complete with laser lights and relaxing background music, he comes alive. He runs from his parents to me and back. He is simply happy.

Holding it together

Parents of kids with autism are often torn between doing too little or too much for their kid. It’s a fine line to walk, and one that many parents walk in regret or shame. “I should have known better. I should have done that. Now it’s too late.”

Y.’s parents are in a continuous fight mode. Their time, energy and finances are geared towards making sure that their son gets the right support and can make progress. Sometimes, this involves quite a bit of experimentation. Certain interventions seem to work for a while and then stop producing any visible result. Other interventions are well accepted by the kid but progress is so slow that it can seem like there’s actually no progress. There is a serious mental burden in having to continuously contemplate when to stop an intervention, when to start an entirely new one, when to add one on top of everything else.

Moreover, adapted support for children with autism is hard to find. In many cases, parents do not have a real choice of saying no to whatever is available in their region, or whatever is reimbursed by health insurance.

Besides having to struggle with their own doubts and fight their way through a maze of procedures in order to get support, parents are also sometimes confronted with people who have already labelled their child as irremediably dysfunctional or lifelong dependent. When doing the tests for a formal diagnostic, Y.’s parents have been told by one medical professional that he will stay like this (nonverbal and with high support needs) for the rest of his life. One of his school instructors has also told them that he will never leave her class because he does not have the required level to advance to another learning setting.

Despite all this, what I get from Y.’s parents after hours of discussion is not pessimism or discouragement. People usually misjudge their limits and resources. It’s only when they are pushed over their perceived limits that they discover the territory that lies beyond. A territory that’s not comfortable to explore, for sure. But it can be explored and it leads somewhere. One can live in that space.

“We do what we can,” tells me Y.’s mom. “As I always tell other parents that I meet: according to our strengths and weaknesses. According to our financial capacity and to our physical and mental possibilities. And if something doesn’t work now, maybe that in one month it will be easier to try something else.”