(Continued from Part One)
Sesame Street happened.
They were doing a lovely segment about the variations between families, which lead to a discussion between my son and I about his own family and extended family, and how we differ from other family combinations. Then he asked if anyone was the same, or everyone was different in the world. I told him everyone is different, even twins; no one has the exact same body and brain. And I realised a perfect moment had presented itself. I asked whether he wanted to see a new book about how everyone is different, and about his own special difference. This received an enthused “yes”.
We went upstairs to sit on his bed to read his new book. My heart was pounding; I really felt the gravity of the moment. This was something I’d been thinking about and worrying about for so long, and here it was, happening.
He asked me to read it so I did. He had questions about various words (“what does ‘example’ mean?”), and wanted to tell me some things about the photos in his book, and then the magic word appeared in the text. “Autism.” He didn’t stop to ask me what it meant, just let me keep reading. We got to the end of his book. He said he wanted to read it himself this time.
I’d aimed the reading level at where he currently is, so he coped quite well with most of the text. And then he reached the word “autism” and paused just a while, before reading it as “awesome.” Which I thought was just so sweet and perfect. I corrected him, he kept going, but this time he stopped to ask lots of questions about what the book was telling him.
He was soaking in the messages of the book to such an extent that he started showing me how he was everything the book said he was. (This reinforced for me that I made the right decision to avoid the books which gave off the wrong information or tone about autism, as it affects my son.) For example, the book told him he has a wonderful memory and great eye for detail, so he started commenting extensively about details in the photos and what he remembered about what was happening at those times. The book told him that in some ways his brain works better than other people who don’t have autism, so he asked me if his brain is better than mine. I told him it was in some ways; this pleased him mightily. He’s been talking a lot lately about how he will be taller and stronger than me when he’s a man, and he was quite happy to add “better brain in some ways” to that list of superiorities.
In fact, he took that so much to heart, that after he’d read the book he took it upon himself to actively teach me how to draw a clock. He showed me, then told me to practice it too. This made him very happy. There was even a rather condescending tone to his voice as he talked me through it! At that point it did cross my mind that maybe I pushed the “you’re great” bit too much of autism. But the book did gently explain the extra difficulties he faces, and he did spend time also talking about those challenges mentioned in the book (his difficulty with language and tendency towards repetition in particular), so I think it was even-handed and realistic. And if he walks away with a focus on his strengths and a more positive self-identity, then that is even better that I’d hoped for.
I think it’s fair to call the whole discussion and book, a success.
After that the day continued as normal, as I’d so hoped it would. He was particularly well-behaved the rest of the day, and otherwise his usual awesome self. Just more self-aware now I guess, which is a wonderful thought. I gave him the words and some of the answers to questions that were going unsaid, but clearly surfacing in his mind and in various discussions. Sometimes you know there’s something you need to know, but don’t know how to ask about it; that’s the point I believe my son had reached. Finding the right words is even harder for someone with autism, so he needed me to help him along that path.
Autism was part of him yesterday, and will be tomorrow, from the day he was born to the day he dies. Knowing there’s a word for it doesn’t change who he is; it just aides better understanding for him, of himself and of others.
Now that that first conversation about autism is out-of-the-way, I am better equipped for dealing with future discussions, which can now arise more naturally. If something happens in his life related to his autism (as it will), we can address it without having to start from scratch; the words and ideas are already there to build on.
I particularly like that I controlled the way in which he first meaningfully encountered the word; that he didn’t hear it used as a slur or an attack on him by some bully in a playground or a thoughtless adult, and then have to ask me to explain it. Autism is a large part of who he is and what he does and how he thinks; it would have been quite horrible if someone else had originally shaped it as something to be ashamed of, that I’d then had to counter or undo if I could. I know there will be times when people will try to hurt him via his diagnosis, but he will have a positive and honest foundation from which to stand tall.
This whole experience has solidified for me the difference between how we as parents needs-must approach and respond to autism, compared to how our autistic children need to be able to see it. As parents, we must be prepared to see and work with the very worst that comes with autism, we can’t let ourselves be complacent about our children’s abilities and well-being. We challenge them, help them, guide them, as all parents must. But our children are going to have a harder time of meeting those challenges if they see themselves as doomed or lesser beings; it is also our duty to make sure they grow up loving and accepting themselves. That doesn’t mean lying to them or not extending them, it means being honest but also reassuring; letting them know there’s a lot of work ahead of them but that it can be done and they won’t have to do it alone.
So yes, my son has autism, a truth that he needed to be told. He also has awesome, a truth that he lives and that he needs to know I see in him too.