Autism: trusting yourself in the face of diagnostic doubts.

It's often said that it takes a village to raise a child, that you have to be receptive to advice, but you also have to trust yourself. It's a difficult balance to strike, especially when it comes to our children's health. My third child is autistic. It took 8 years to get a diagnosis, partly because of this mental yo-yo between "they must be right, it's normal", and "I know there's something going on". Our story is just one of many, but it illustrates how this yo-yo can delay care.

Smiling mother and child sitting on the kitchen floor

Until my son was 2 (the last of 3 rather close boys), we called him "the ultimate baby". He quickly slept through the night, grew as he should, kept himself busy, didn't try to climb everywhere, was smiling, adored his daytime mom even though he hated day nursery. (Yes, there are at least 3 things in that sentence alone that should have tipped us off, but hey). Shortly after he turned 2, we moved to New Zealand (the next person who asks me if I followed my husband, I'll gut him, I'm the one who got a job!).

That's when things changed. He refused any change. He didn't want the new house, the new car, to go to a new nursery, and he began to have 5 to 7 fits a day lasting up to 1h30 (only with us, otherwise it's no fun). He refused to speak in public and developed, among other things, obsessions with clothes and food. I thought it might be autism (there is some in my husband's family), but when I confided in those close to me, they reassured me. It's normal, there are a lot of changes in his life, he can't express himself properly yet, it's the "terrible twos", learning 2 languages is hard, you're less available, etc., etc., etc.

With each new difficulty came its share of explanations and reassurances. And as we struggled, we used these soothing words to reassure ourselves that he was fine, that the problem was his environment, or that this was just another phase that would eventually pass.

But the phases didn't pass and my husband and I felt that "the truth was elsewhere" (if you have the reference, don't try to hide your age any more, I've spotted you). Our son speaks well, has no difficulties at school, is sociable, smiles and looks people in the eye when he speaks (something we taught him). Because of all this, I had to insist heavily that his doctor refer him to a care organization, as he didn't see the point, despite my explanations. The specialist's visit was limited to an hour's observation at school. Verdict: he's an anxious child, but he raises his hand in class and looks people in the eye when he speaks. I cried a lot that evening, and my husband and I felt helpless.

In August 2021, after 7 years in New Zealand and just as much unaccompanied care, we arrived in Switzerland. In February 2022, we were given the diagnosis that he was autistic. Liberation. He wasn't crazy or weird like he thought. I'd come to believe that I was inventing problems for him. Since then, we've been getting to know HIS autism, and we finally have support and a "roadmap" to navigate the next few years.

My message is not not to trust the relatives who want to reassure us or the medical profession who know 1000 times more than we do, but it is to trust ourselves. In 2015, I told a colleague "one day I'll read something somewhere and I'll recognize my son, there's something". If you recognize yourself in my testimony, don't give up. The explanation will come and your doubts will eventually be answered, but don't give up. It's worth it.

Hélène Girard
Mom of three boys aged 10, 12 and 14
www.famille-o.com
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helene@famille-o.com

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