Disclosure (to tell or not to tell)

As I was getting my hair cut this week, the conversation turned to B (we all get our hair cut at the same place). Apparently he was a rascal last time he went in. The hairdresser commented on how children all go through a phase of hating getting their haircut, then described one particularly difficult customer, and ended with, “it turned out he was autistic, so that explains it.” At this moment I had a dilemma. Should I tell her B is autistic?

This coincides with my wife deciding this week to start telling work colleagues, family members and friends. It has been very difficult for her to take this step, for all sorts of reasons, but she has done it and, I think, feels relieved. She has received lots of love and kind messages of support (everyone has a story about an autistic person they know who is ‘doing brilliantly’ it seems!). I’m glad she has taken this step and, if you’re reading, I think you are very brave and I love you.

Telling people less closely connected to our lives is more problematic. I certainly don’t want to be saying, “he’s autistic” every time he kicks off in a supermarket or can’t answer a question a stranger has asked him. This is not about hiding anything, I simply don’t want him to become defined by a condition that is just a part of who he is. Besides, it might stop people judging (“look at that naughty boy”, “why don’t they tell him off”) but it doesn’t make any difference to his life or help him in any way. Today in the supermarket I noticed the woman at the checkout watching him kick off. It was written all over her face- “why aren’t they telling him off?”. Eventually she said, “No shouting, now.” I let it go and said nothing. When you’re in that situation, you might appear calm on the surface, but underneath it’s very stressful. Not the right time to react. I would have regretted telling her to mind her own business; she meant well.

My grandmother is another tricky one. Eventually we will have to tell her. At family gatherings it will be unfair to expect other family members to keep secrets and it would be worse to be told by someone other than us. My reluctance to tell her so far is for a number of reasons. Firstly, everything’s just fine as it is. She knows he’s a handful, but beyond that sees no problems with him at all, and like the other kids in her family, she thinks the world of him. This wouldn’t change if we told her, but it would feel like we were giving her answers to problems she’s not really aware of. Ignorance is bliss. Secondly, I know for a fact she will reach for her 1950′s Reader’s Digest Book of Health and Medical Conditions (or something like that) to find answers that are not there. Then she will either worry herself silly or go down the ‘there’s nowt wrong with him’ route. She will collect clippings from ‘Woman’ magazine and spend long periods reaching inaccurate conclusions, which she will share with us. Perhaps I’m being unfair. I’m certainly being a coward. If she knew he’d been for a brain scan last week and we hadn’t told her, she’d be very upset. It’s something I must face up to soon.

I think the people who need to know will, and in all other cases it will not be something we make an issue of or raise unless necessary.

And in case you were wondering: no, I didn’t mention it to the hairdresser!

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3 Responses to Disclosure (to tell or not to tell)

  1. Darcy says:

    I worry about telling causing more misconceptions than would be worthwhile, too, and the situation with your grandmother sounds like sitcom-worthy drama! Bless you!

  2. Tessa says:

    Well, I hate to tell you, but even when people “know,” they still pronounce judgement because knowing isn’t the same as understanding. However, I was relieved to be able to explain to my family about my oldest son. Several of them told me they’d been concerned about him for a while, but they just didn’t know how to tell me.

    By they way, thanks for visiting me today!

  3. It’s a shame we have to tell anyone anything and that people have to pass comment or frown on anyone.. My friend has cards that she had made up that briefly explain about austism and she hands them out to anyone that tuts or comments if her child is being less than perfect….I think this is a great idea in my eyes it educates people and sticks 2 fingers up at the same time to the ‘more critical’ people….

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