My son doesn’t know he’s autistic – and I am afraid to tell him
MY sociable, loving, sensitive seveny e a r- o l d son does not know he’s autistic. He doesn’t know because my husband and I haven’t found a way to tell him, even though we have known about his condition since he was a baby.
He is old enough to understand. He even knows what autism is because there is another boy at his Saturday drama class who has learning disabilities and possibly attention deficit hyperactivity disorder (ADHD).
This boy is impulsive – he’ll grab someone else’s lines and rip them up. His behaviour is quite unlike that of my son, who hates getting into trouble and worries about being told off.
So how do I explain to him that he has, on paper at least, a similar condition when he is so different?
I’m not sure how to convey to him what I have learned through writing a book on the subject: that there is the same huge variety of autistic people as non-autistic. I understood the concept of the spectrum, but not how vast it is. The many chatty, self-aware, empathetic and funny autistic adults I interviewed for my book, Autism: How To Raise A Happy Autistic Child, gave me a new appreciation.
Published last week, it is the kind of book – gathering views from world- leading experts and from autistic adults – that I wish I’d been handed when my son was first diagnosed. Like so much in the autism world, there is no medical consensus on how parents should navigate these things.
So I put the question to many of the experts and autistic people I interviewed for the book: when should you tell a child they are autistic? Every one of them agreed it was important that I did tell him.
Many said the best time is when the child starts asking questions – that is, when it naturally comes up in conversation. A few suggested using the word ‘autism’ as soon as the child gets the diagnosis, and not making it a big deal.
One autistic woman, an academic who used to work in a school, said: ‘Children have a sense they are different anyway. At the age of seven or eight, I attributed my social awkwardness to my physical appearance, which tied in with what other people were saying about me. I couldn’t fit in because of my size, my hair, my rosy complexion. If I had known about autism, I could have created a different narrative for how I was feeling.’
But I suppose I still feel nervous of denting my lovely, sensitive son’s self-esteem, which is already fragile. Indeed, he knows I’ve written a book about autism, just not that it was inspired by my journey as a parent trying to understand how I can best support him.
My son was diagnosed aged two after a year of assessments – my mother-in-law is a retired educational psychologist and spotted that something was different. And to be honest, despite friends trying to reassure me otherwise, I had a gut feeling about it. He didn’t make a lot of direct eye contact. He didn’t point for a long time and his words were slow to arrive. He found noisy situations, such as music classes, difficult to deal with and he seemed an anxious baby who wasn’t at ease with the world, and I didn’t know how to soothe him.
Now that I know he’s autistic, I realise what he needed as a baby was routine (which I was never very good at), predictability and to be in environments that weren’t overwhelmingly noisy for him.
We’ve learned to make life as predictable as possible. For example, over the school holidays he goes to the same tennis and cooking camp every time. For people who know only about stereotypes, my son is the type of autistic person you won’t be aware exists. He doesn’t have learning disabilities and is academically able. He’s sociable and very caring. If anything he’s hyper-empathetic: at school it upsets him greatly if a classmate is told off. I believe my son has known for some time on an intuitive level that there is a difference between him and most of his peers: he has started asking why he leaves school early on Thursdays to go to his social-skills classes. He has these private lessons once a week, with the wonderful Dr Debora Elijah, which can be useful for children who need support socially. My big worry, I suppose, is that he’ll react badly and see his difference in a negative way.
As one mother of a nine-year-old autistic girl told me: ‘My daughter doesn’t believe in her diagnosis, and she doesn’t want it to be true. She doesn’t want people to know – she’s embarrassed and has that sense that she’s different.’
When she tried to talk to her daughter about it, ‘she just threw the duvet over her head and said everyone was stupid and she wanted to slap them all’.
They are making small steps of progress. Her daughter has agreed to tell two of her friends. But there is still a long way to go. Some parents of autistic children are open about it, telling everyone; others haven’t told a soul. We are somewhere in the middle. We tell family, friends, the parents of our son’s school friends. Inevitably, at some point, someone begins talking about autism in front of my son. It feels excruciating, because we’re trying to control the process of him learning about it. In the past we’ve had well-meaning friends say in front of him ‘he seems normal’.
It’s not what we want him to hear, but by not telling him, we’re not taking control of the conversation. My plan is to continue our discussions about difference – how it doesn’t mean lesser or worse – and then find a way to talk about the spectrum. I’m planning on reading some passages from my book with him, to see if it sparks a conversation.
I hate that I feel nervous about it: being told you are autistic should not be a terrible bombshell. It should be a way to help them understand themselves better.
Wish me luck.
How To Raise A Happy Autistic Child, by Jessie Hewitson, is published by Orion Spring, £14.99.
I JUST FEEL SO NERVOUS ABOUT DENTING HIS SELF-ESTEEM