M. carries around a piece of string that seems to have become almost an extension of him. Sometimes he shakes it as he manifests his joy, agitation or anxiety. The string is a lightning rod carrying all this tension that cannot express itself otherwise. Some other times, he gently leaves the string move across objects. He is non-verbal.

M. usually makes himself understood by moving around or taking somebody’s hand and bringing them to the place or the object he is interested in. Him mom tries to anticipate his needs as much as possible. M. does not use pictograms to express himself. The only exception is the pictogram for thirst, which he brings to his parents from time to time.

For my third visit, I’ve brought some printed photos from our previous meetings. M. looks at them, goes back to his room, and comes back to look again. He looks appeased and smiles from time to time. But the patch of missing hair on the right side of his head is there as a reminder of less peaceful days. When he is very anxious he can hurt himself by hitting himself or pulling out hairs.

M. likes physical activities: walking outside, jumping, climbing, running, swimming. If he walks then he does it fast – if you accompany him then better keep up the pace! He has energy to burn and he burns it by moving around and making noise.

The activities organized with his family need to be prepared in advance and executed on time. A small delay in leaving the house can enrage him.

While M. is not particularly interested to connect with others, he seems to like company. He likes being part of a loose group that leaves him the freedom to be on his own while discreetly sharing the group’s energy.

M. is paying attention to what happens around him even though he may not seem to. He knows what time it is and signals to his parents when the time has come to go out or do something else he is interested in. He pays attention to details.

Grieving the perfect child

After the diagnosis, M.’s mom tried for a while to keep up with everything: her job, the lack of sleep, her kid’s anxiety and crises, the constant fight to find the right support. In the end, she had to quit her job. Everything changed: the way the family organized their live together, their holidays, their social relations.

M. has an older sister who spends time with him and takes care of him. He seems to be quite fond of her. As they sit side by side at the big table in the living room, I ask her what kind of relationship they have. She pauses for a moment. “It’s like having a 4-5 yo brother. I always have this impression. It’s not particularly unpleasant but it does not change. He keeps on growing but he remains a little brother.”

What happens to you when your child is diagnosed with autism? How do you come to terms with the prospect of a child who will always be different?

We assume that love is bound to bring acceptance. And who doesn’t love their child? But acceptance can be a long winding road. It may not be a precise moment but a series of moments, a dance with a changing reality.

M.’s mom took at least one year to come to terms with her son’s autism. His dad, a doctor, took a more pragmatic stance and started right away to accommodate to the new situation. For her, it was more of a back and forth. A struggle. Until one day when her husband said, “Ok, that’s enough. This is not going to change. There’s no turning back.” And that was like an electric shock for her. An opening. A moment of realization. And starting from there, she had the impression that M. was getting better too.