As a parent of an autistic child, you get used to certain conversations repeating themselves when talking to parents of non-disabled children. Over time you lower your conversation-expectations and adopt pre-set responses, but it can still wear you down and make you feel like you’re a stranger in a strange land; where disability is not considered part of the parenting experience, and is not to be genuinely discussed.
Over the weekend I had a conversation with a woman while her son and mine played together as part of a team sport. She was eager to tell me many things about her life, and her own son, and particularly about her hardships, even though we’d never met before. Who I was and who my son was didn’t seem to interest her, but it was clear she desperately needed someone to listen and sympathise, so I politely listened with the appropriate expressions of “gosh that must be hard” and smiling or looking sad at all the right moments. What I really wanted to be doing was watching my son play the sport, so I could see where he was struggling and clap for him where he succeeded, but each time I tried to disengage the conversation she’s just start talking again, and I didn’t want to be expressly rude.
This mother was particularly worried about her son’s behaviours; she considered him to be rather restless, and worried about his sleep patterns. She wanted another child but didn’t want to risk having another “difficult” child. In order to show my understanding of her challenges with having a difficult child, I took the risk of telling her my own son had autism. With barely the beat of a breath, she responded with “but he looks so normal!”
I have so many potential replies to that statement, none of them are nice. So I just nodded and bit my tongue. Autism is an “invisible disability,” you can’t tell a child is autistic by looking at a photo of them. They often behave in certain ways that those who have experience with autism can pick up on very quickly, but if you don’t know what you’re looking for, then yes they’ll look “normal.” That doesn’t mean they don’t have autism. That doesn’t mean they’re not disabled. The way they look means nothing. Still, she clearly wasn’t familiar with these points, so why beat her over the head with it? I was only trying to show empathy, not wanting to engage in an autism or disability lecture. But she had more to say.
She wanted to know how I knew he was autistic. I tried to explain the early and very obvious signs. But each time I attempted to explain them, she compared my son to her (very obviously not-autistic) son: “oh yes, my son did that too.” Which is another pet hate of autism parents: Yes some children are speech delayed, some have coordination issues, some have their little stims, some have trouble making friends or like to be alone. None of that even comes close to what it is to have autism, and by saying “oh yeah, my son has that too” you are belittling the severity of the condition and sound like you’re challenging a specialist’s diagnosis or the very condition itself. It is actually quite a combative thing to say for many parents, and encourages comparisons where they are inappropriate and inaccurate.
But the last thing I wanted to do is get into a slinging match over autism versus normal developmental symptoms, so again, I bit my tongue and left all this unsaid.
Once she’d finished playing the comparison game about our children’s behaviours, she decided to show sympathy for me by saying it must be so hard, then leapt straight into “but every child has problems don’t they.” Another predictable statement that makes me want to pull my hair out: Yes, I know some kids have physical disabilities, and mental disabilities, but the truth is the huge majority of kids do not have any serious conditions that impact on their daily lives. This sort of statement – “well all our kids have issues” – again just belittles the frightening reality and incredible financial, physical and emotional hardships involved in raising a severely disabled child. The statement is not particularly insightful, it is just one of many platitudes people use to flat-line all our experiences, and again can be quite confrontational if said in a dismissive manner in this way.
She was surprised that I had “risked” having a second child, when the first one had so many issues. I told her what we’d been told: That there was at the worst, a 20% chance our second child would have autism, so an 80% chance of not going through all those challenges again seemed pretty good. She said she wouldn’t have taken those odds. What to even say to that? I could have told her I’d love any child I had, I could have told her even worse odds would have still driven me to try for a second child, I could have told her how insulting it was that she was commenting on my breeding decisions. But again, she was a stranger, I really didn’t want to have a confrontation with her.
She returned to talking about her life and her child, and the existence of my own son and his own issues were just a blip on her conversation radar. Which is fine because I’d quickly had enough of her squinting at my son trying to discern his non-normality. I continued my polite listening and nodding, and come the end of the session I was very happy to be on my way with my “apparently normal” son.
Later I shared part of the story with my autism parent friends, and they came up with numerous humourous (and harsher) responses to when someone tells you your child “looks normal.” As lovely as it is to have a supportive, understanding group of parents to talk to about these upsetting conversations after the fact, the simple truth is the poor woman I spoke to that day meant well. She probably didn’t really know what to say, stumbled her way through the uncharted territory, and clearly meant no out-right offense. The fact that I walked away from that conversation feeling a bit hit-over-the-head, and the fact that I’ve had these exact same conversations with so many different people, is something she’s no doubt oblivious to. Trying to correct all her misconceptions, and explaining why her words can hurt, would have taken more time and energy that I had to spare, not least of all because I kept trying to watch my own son playing his game.
What’s more, I am hyper aware now of people in this world who struggle with social interactions – since it is such a core and pervasive aspect of having autism – so I try to be gentle and assume the best of intentions, even when people so clearly screw up from my own perspective. I could choose to take offense all the time – god knows people are very good at causing it when it comes to autism and my son – but that’s not a pleasant way to be or to interact with others (and I do try to be pleasant!)
The alternative I more frequently adopt these days is not to mention my son’s diagnosis or his special school or his challenges at all. It tends to leave a big gaping hole in my conversations with other parents I interact with – to not mention something so central to my child and my own everyday life – but in my experience all these other parents really want to talk about is their own child anyway; they only ask about mine to maintain the minimum level of politeness. And why not, I guess, we’re all wrapped up in our own children, isn’t that natural? I just get tired of having to constantly choose between predictable hurtful conversations, and keeping quiet about something so central to my and my son’s life.
The sense of isolation you feel as a parent of an autistic child, is on multiple levels: It can be the inability to leave the house with your child, it’s the stares and judgments when you do, it’s the lack of understanding from family and old friends as your life veers off in another direction. And it’s in what you wish you could, but know you can’t say, to strangers who think “but he looks so normal” is both a compliment, and a denial of disability.