When and how to tell him he’s autistic?

There was a time that I thought I’d never have to deal with the question, of when and how to tell my son he is autistic, since his autism was so severe that it got in the way of meaningful communication. But his language and comprehension have advanced to the point that the question is inevitable, and I find myself thinking it over on almost a daily basis.

Every adult in his life – and a few children too I suspect – know that he is autistic. So I cannot control whether and when he hears the word, not for lack of trying though. I’m so mindful of him potentially asking about it that I’ve personally stopped using the words “autism” and “autistic” around him; he listens closely to those who talk around him and frequently interrupts with questions. I haven’t stopped using it because I think it is a bad word, or because I don’t want him to know he is autistic. Rather, I want to make sure that when he asks and when I answer, that both him and I are capable of making that conversation go well.

I’ve been slowly preparing him for the conversation by simple consequence of answering his questions about people in wheelchairs and blind people, diabetics, asthmatics, etc. Even when we talk about the fact that I wear glasses. Those conversations always take the track of me saying that some people are born with these challenges (or “problems” being the term he uses and understands), and some have accidents, and some get them as they age. That most people have “problems” of some sort, but that’s OK, because we’re all different anyway. That even twins are actually different, even though they look almost the same.

So it won’t be long before he asks if he “has a problem” too, and what it is.

But I’m not sure yet how I’m going to explain it to him, though I have a general idea. I’d remind him that everyone has special challenges they face – like mummy’s eyesight and great grandma’s knees – and that his challenge is called autism. That autism makes it harder for him to do things like talk and makes him do different things like hum and flap when he’s happy, but that it also has given him a great memory and has made him very good with details.

Already though I have a problem with that explanation, because I am worried he will think having autism means he has an excuse for not trying hard to improve his speech, or to modify his behaviour (for example, we’ve been working hard to get him to stop humming so loudly when others are trying to watch TV, and we’ve been trying to stop him doing a weird and annoying thing he purposefully does with his speech sometimes that he thinks is hilarious but is really irritating for others). He’s smart enough to see and use autism in this way. I need to find a way to convey that autism is an explanation not an excuse in this manner, and I’m still trying to figure out how to convey that subtle but important difference to a young boy.

It would be easier to do it when he’s older. So if it was more under my control – if I could have him not ask until he is older – what is the right age? I’ve read that you should have the conversation before puberty, since the child goes through a lot of personal changes mentally and physically at that point, and they need answers to why they are so different than their peers. But I think the driving force needs to be the individual child’s developmental stage; are they individually ready to understand what autism means (and doesn’t mean) in their life. Surely this won’t simply be “the age of puberty” for every autistic child.. or will it?

I don’t see not telling him as an option, because someone will tell him sooner or later, or he’ll figure it out, and I want to make sure the “revelation” is delivered in a kind and accurate way. I also don’t want him thinking that I held something back from him that he should have been told years before.

The fact that he attends a special needs school is helpful in some ways. He is surrounded by difference – by children with various challenges – making it easier to explain strengths and weaknesses and the normality (as such) of those differences in the world around him. In some ways being in a special class will, I think, hold the question of autism off for a while, since his difference from “everyone else” (a normal classroom full of NT children) is obviously less pronounced. However my son has figured out that he appears to attend two schools (the consequence of attending a satellite class) and that there’s something a bit different about his classroom compared to the other classrooms, which might also speed up the eventual more general question as to why his schooling is so different.

I don’t want my son to think of himself as significantly different, but I need him to eventually understand that he is; it will be important for his interactions with and expectations of others, and his understanding of himself. I want him to grow up unencumbered with these questions; I just want him to live a happy life with little in the way of limitations of what he can aspire to do with his life. The fact is that there are limitations, but I think him knowing that too soon or thinking about it in the wrong way, will hold him back from what he might have otherwise achieved and become.

And so these issues go round and round in my mind. I don’t know the answers, but I know I need to find them if they exist. Maybe there are no “rules” here; it’s just what works best for my own child whenever he’s ready to find out. But if you have answers or insights, or just some reassuring words, do share them. Maybe they will help me be ready at the same time as him.