Predictable Conversations.

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.

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11 Responses to Predictable Conversations.

  1. jimreeve says:

    It’s tough for all parents like us I think. We too hear remarks like the ones you heard, and it can be hard not to lash out at them. But the truth is, it’s not their fault that their lives haven’t been affected by autism. And sometimes when I explain what it’s like being a parent of a child with asperger’s, it often puts their lives into perspective. Because until your child has autism, you have no idea how hard it is.

  2. Stimey says:

    It’s hard because they think they’re saying something nice. It is so much rarer now that someone says something deliberately hurtful about the autism in my family. Instead, we get slapped across the face with well-meaning, but completely off-base hurtful comments.

  3. Wife of Jack says:

    A recent one…”Has he had a professional diagnosis? He looks pretty good.” That was from a friend who I had not seen in person for a while. No I’m just making up really complicated and depressing stories about my child just for the fun of it. I’ve even got a whole team of professionals and his ECE providers to go along with the ruse as well. It was so ridiculous and strange all I could do was answer honestly; “Yes, yes he has…..more than two years ago.” I guess she was not thinking how hurtful it sounded when she said that but I’m sure it’s what people think all the time.

  4. Bec Oakley says:

    Thank you for talking about this. That’s a great point about how much it just adds to the sense of isolation. It’s really true that as a parent it’s exhausting, and painful, to have to constantly explain, rationalise and prove what autism is all about – so much so that most times the only option is just not to mention it at all. It’d be handy to come up with a default response for times like this so that it doesn’t take up your precious energy or stir up those feelings. As tiring as it is, it’s important to correct misconceptions because it’s not just kids who get this comment, it’s adults too. And I want for our kids to grow up into a world that understands autism, where they don’t have to spend their lives justifying how they can ‘pass for normal’.

    • You’re right (as usual) Bec. I’ll remind myself about the importance of taking the chance to educate them next time this arises (and there’s no doubt it will arise again); as you say, it can be exhausting, but it’s worth doing. Thanks for your comment.

  5. Hilary Stace says:

    That judgement by others never seems to cease. When the autistic children become adults it goes to a whole new level of well meaning but judgemental comments about what they and you should or should not be doing.

  6. xaraxia says:

    I definitely get this, a lot, and it’s painful. I’ve even had it from a mother of a more severely affected child who is non-verbal. When I said hi to her son (who was stimming in a shopping centre) she leapt to his defence telling me he was autistic. I smiled and said “I can tell, my son is too”. To which she replied “but he can talk!” It’s not only those with non-ASD kids who can have a narrow view of Autism!

    I wanted to post another side, though. It’s amazing what a difference an observant and supportive group of parents and kids can make. My son is in Prep in a mainstream school, and over the course of the year the parents who stick around and help out in the class have really come to appreciate his differences. I now get reports of his quirky behaviour (which really is quite funny), and they report on how well he is coping. They get excited with me that he’s wearing underpants instead of Pull-Ups and is full-time instead of dual-enrolled this term. They are so accepting of his difference and tolerant of the disruption it sometimes causes. I’m not sure that they would have been so understanding if I wasn’t up-front about his disability (though given what amazing people they are, I could be wrong there). I’m incredibly lucky, but I think that the fact that I have gone out of my way to explain his behaviour whilst not making it out as a big deal has helped. I try to portray my acceptance that this is the way he is, and he needs what he needs, and there are good reasons for it.

  7. blogginglily says:

    I think the most offensive thing anyone could say to a parent is that: based on child 1 he/she is surprised you’d “risk it” and go for child 2. The implications of that are very upsetting to me.

    I’m pretty happy go skippy, and I THINK it’s something that I could say (with someone to whom I was somewhat acquainted), “you realize how offensive that sounds. . . right?”

    Still, there are only so many conversations you can do that with before, as you suggested, you just stop talking about it and let them form their own conclusions.

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