The problem with looking 'normal'
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I was on a flight last week with my husband and daughter, and sitting immediately behind us was another family with an autistic child.
They were strangers, and the child looked and seemed completely normal, until he talked, loudly. Then I noticed that his eye contact was unusual.
As the child behind was loudly vocalising, our daughter was quietly quoting the Bear Grylls safety video word for word and assuming the brace position.
I sat there wondering what the odds were of two kids in a row having autism.
I was dying to ask if the boy was autistic, or had another special need, and have a conversation with the parents. With this sort of thing in common there's a lot to talk about: schools, holidays, care, therapies, diet, etc. We might have been of some use to them as we are much further down the track - our daughter is 13 and their son was probably only about 5.
But of course I couldn't ask. I could be completely wrong. Or I could be right and they haven't had a diagnosis. Or I could be right but they don't need a reminder that strangers are possibly wondering about them. In any case, it would be really rude.
It made me question how many people wonder the same things about our daughter, about us, and don't ask.
When our daughter was first diagnosed the paediatrician explained what a double-edged sword it would be for us that she looks 'normal'. At the time I could not imagine how it could possibly be bad to look normal, but understand all too well now that at times it is.
Making it worse for her is the fact that she is tall and looks more mature than her years. She is essentially a 9-year-old in a 16-year-old's body. People have expectations of a level of language, maturity and behaviour that she is simply not capable of, or interested in faking.
There are times and places where learning to fake it is essential. Travel is one of them, and as my husband and I enjoy travel, we have spent a lot of effort on teaching our gorgeous girl to 'suck it up'. This means being serious, still and quiet, and answering questions from immigration and MAF officials.
She has essentially learned how to fake it, but it takes her an enormous effort.
Sometimes the system fails though.
Yesterday on the spur of the moment I took my daughter for a much overdue haircut. I've been making a concerted effort of late to not lead with a 'she is autistic' introduction, as after 10 years of therapy she can often muddle through a short meeting without people noticing too many differences. So I didn't brief the hairdresser on her condition.
In retrospect I would do it differently, but in my defence I didn't want to scare the hairdresser, and I didn't think it would matter.
It was a high stress situation for my daughter, and her ability to fake it was impaired.
Five minutes into the haircut she began repeating quotes from her favourite movies (stimming for those in the know), thus providing herself with a level of comfort.
Out of context, and with no relevance to what was going on and the questions being asked, it was very odd behaviour. Fortunately we were the only people there, so it didn't really matter.
The haircut is lovely, due to the skills and compassionate nature of the hairdresser, who could clearly tell that something was amiss, but just carried on as if it was situation normal.
That's was exactly the right approach to take.
Like me on the plane, she couldn't assume or ask. She was probably dying to know, but she sucked it up.
I'm glad that I sucked it up on the plane too.
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