Yesterday I was given a prompt by a question posed on our site by Suz about ‘What Would You Say To a Parent of Newly Diagnosed Child?’
This is a question we ask a fair bit around here. Kate asked it at the end of her last post. But who and how do you tell once the diagnosis is in? There are many factors to consider. Where on the spectrum your child is, whether they will be in mainstream school or not, whether sharing the information with particular people or having the entire subject open for discussion would be most suitable for your family.
I’ll tell you what we ended up deciding and why.
As our son’s ASD presented as the milder of his conditions, when he was diagnosed, the whole autism world was an enormous learning curve for us. We had started primary school almost half a year before we received our official word. In the meantime we tried to settle in as best we could. One of the things the counsellor at our CAMHS service told us stuck with me. She said she doesn’t like to give advice as all parents will decide what’s best, but please consider who and when and whether we’d like to share it, because once it’s out there, you can’t take it back. Let it sink in and decide accordingly. It was great advice. I had read on forums of people who’d regretted being so open about it in the beginning- some information in ignorant hands can backfire on you.
Naturally we told close family and only a few friends, the school was of course already involved in the process. We started off on that foot, keeping the labels unspoken while we worked out what it all meant.
As time went on, because we were in mainstream school and because he already stood out due to attention and disruptive issues I didn’t want to add Aspergers to the public domain. The more he progressed and settled in his first huge year in school, I began to feel it was our private issue. When he was calm, he fitted right into the group, which was our school goal. On one hand I know it didn’t help the public service of educating those around us, but frankly I didn’t know enough myself, nothing compared with what I know now, or what is freely available on the internet. Perhaps part of me did hope it would melt away.
However what actually happened was that I became fiercely protective of his privacy and opportunity to find himself, grow and become part of the classroom- which with management and medical support, for the most part he did. As he grew up with his cohort, he was just him, a boy with a name and a colourful personality. The school kids are often better at seeing him and being more accepting than their parents. I was sensitive to the fact that it was not other people’s huddle fodder. Coffee conversation. Because if they weren’t on his team, it was absolutely none of their business.
I don’t know how the years fly but they do. I’m sure some of the school Mums assumed I was in complete denial that my boy’s behaviour or medical status was visible, because they knew it was off limits for discussion. It was not that at all. I wasn’t blind. I was protective. And my son was getting to the age where he was noticing the differences within his peer group for himself. He had questions.
At around the age of 10, it felt as though he truly deserved the space and freedom to explore what being him in this world meant and felt like. I became fiercely protective of his freedom of choice by this time. I didn’t want anyone else’s ideas intruding. Yes, we always discussed feelings, and traits, and he knew why he was seeing different healthcare professionals. But until such time as he understood the labels, and his own self image- I was going to leave it up to him to decide.
Becoming part of this wonderful site and community co-incided brilliantly timewise for us. Mr12 says he has nothing to hide, that I can write and say whatever it is I want or need to. I tell him we are not hiding but everyone has private issues in their lives. He can discuss them with whoever he feels he needs to and trusts. I will always share with those who are either sensitive to us or are in the same situation.
I’m glad now I handled it like I did. It’s worked well for us.
Are you happy with your approach? What did you decide or are you yet to decide?