After putting it off for far too long, we finally got round to telling our eldest son that his brother is autistic. The plan was to tell him at some point during the summer holiday, so that he had time to get used to the idea and get used to the fact that his brother will need extra help in September. Mostly though, he would see it didn’t change a thing. They would have a great six weeks together and the ‘a’ word wouldn’t matter or change who he was.
I would happily have left it a couple more weeks but an opportunity arose that made telling him quite timely. We had plucked up the courage to go to a local playgroup for autistic children and their siblings. It may seem odd to use the phrase ‘plucked up the courage’, but that is how it felt. Since diagnosis we have shyed away from getting involved with other people in the autistic community. I don’t know why this is really. I suppose we were just not ready, although I’m not even sure what that means. Perhaps a little part of us felt that we were not really part of that world, or more truthfully, not ready to be part of that world.
I had tentatively dipped my toe into the wider autistic community. I attended my area’s local support group meeting on two occasions. The first time was the day after diagnosis. This was a mistake. I was pretty shell shocked and in no mood to embrace the enormity of the situation. I didn’t know what the diagnosis meant for my son or what the future might hold for us. Diving straight in was a bold move and probably set me back some way. The meeting itself was packed with people, which was an important step for me in realising how under-the-radar, but widespread, the condition is. Unfortunately, the main agenda item involved telling a visitor the extend of the poor provision and drawbacks in support in our area. I listened to several horror stories about inadequate help, duplicitous local authorities, reluctant schools and so on. It was harrowing. I sat there thinking, ‘I don’t belong here.’ At the end of the meeting I bumped into someone I’d been to school with. She chatted to me along with a couple of other parents and that was much better. Their positivity and strength was very comforting. Still, I left feeling pretty despondent and uncomfortable with the notion of going again.
I did go again. It was quite different the second time, but no less uncomfortable. This time there were about five people there, including me. At least the first time I could just blend into the background. This time it was me, the organisers and a visitor doing a Makaton presentation. There was nowhere to hide this time! Despite the awkwardness, I got some good advice on the stage I was at in getting support for B. It’s important to point out that the work done by these support organisations is fantastic. I am in no way criticising them here. It’s just that, for me, it has taken time to be able to access or accept that support.
This was a while ago, and since the involvement of Autism Outreach we have started to feel more brave. Hence the decision to go to the playgroup. I was anxious about a number of things. It seems daft now, but I was worried I would be ‘spotted’ by a child from the school I work in. That could have led to some awkward questions the following week in class. Does this mean I am ashamed of my son’s condition? Do I feel it is something I should hide? Actually, no. I’m not ashamed and have no problem openly discussing it with people I know. But I do value my privacy, particularly when it comes to my involvement with the kids I teach. Anyway, there were no kids there who knew me so it was wasted energy after all.
The biggest concern, and the link to telling my oldest son, was what he would think about the children there who were ‘different’. We saw this as an opportunity, or a necessity, to introduce the term ‘autism’ into his life. By explaining the condition that some children there had, it would offer a way into talking about his brother’s condition. Or at least, that was the plan.
What I hadn’t counted on was the complete open-mindedness and accepting nature of my son. At no point did he question the behaviour, appearance, sounds or anything else about the children around him. I love him so much for this. Never has he ever questioned differences in others. He is colour blind too, in a way adults are not. Having said that, the mixture of children on and not on the spectrum meant that it was not particularly noticeable that some children had disabilities. As adults it was easier to identify asd children but if you weren’t looking for it, I can see how you wouldn’t see it. My son just thought that it was a fantastic place with excellent toys and facilities (bouncy castles! a room with bubble tubes! tons of Lego!). In the end, we made no link between autism and the playgroup. To him, it is his new club that he will go to each week with his brother, and he is very excited about the prospect.
So the premise for telling him about his brother was gone, but by this point we had prepared ourselves to tell him, so we did. We used the ‘My brother is different’ book and I later showed him a PowerPoint AO had given me. We took a deep breath, sat him down and carefully explained the situation.
After all the build up, his reaction was almost an anti-climax. He took on board what we had said, read the book, said “okay”, and that was that. He understands that the most important thing is to love his brother but beyond that, as far as he is concerned, nothing has changed. Of course, he’s completely right. For adults, the word ‘autism’ is so loaded with meaning that we are flooded with all sorts of thoughts, fears and horrors. Not so my son. His brother was his brother. Nothing’s changed. It’s just a label. A six year old has taught me that.