Yep, uncomfortable title. But sadly, these are subjects that I feel we have a responsibility to talk about.
Today, I’m going to share some habits that I’ve seen in a wide variety of contexts: some of them in my career in education (mainstream and special), some of them from people dealing with me as a man with Asperger Syndrome, some of them I’ve seen in the form of internet comments, and so on. Although often done unknowingly- hence the article title- these habits have the potential to do harm.
This is a tricky subject, I know, but these are five mistakes that need discussing. You’d be surprised how easy it is to make them.
Rather importantly, this is not specifically a guide for parents. (Not being a parent myself, I don’t claim to have any insight specific to parenting.) It is a guide for anyone who has any contact with a young and/or vulnerable autistic person, whether they are parents, teachers, teaching assistants, family friends, and so on.
Five ways to damage an autistic child without even knowing:
Ok, deep breath.
1) Talk about them like they’re not in the room.
It really is surprising how many people I’ve seen doing this. The assumption is made, often without the speaker realising, that since the autistic person is looking away in silence, they must not be listening.
Which, of course, is quite a harsh assumption to make about people who simply communicate differently. Partly because it would be disrespectful to talk about any non-autistic person as if they weren’t in the room (and therefore, why on Earth would it be different for autistic people?), and partly because of the things that can end up being said if you think they’re not listening.
I’ll let this badly-drawn picture do the talking.
When I worked in special education, on principle I always talked to the nonverbal students. I never expected any kind of communication in response, because that wasn’t the point. The point was to give them the experience of social communication.
For example, one lunchtime I was sat outside with a twelve-year-old lad who I’m going to pretend was called James. I was talking to him, mainly about how much the weather sucked (being an Aspie I’d much rather talk about dinosaurs or Sonic the Hedgehog than endure small talk, but I’m British so the weather is our typical go-to conversation.). I was also quite sad that day for reasons I won’t go into, but I carried on talking to him despite not being in a talking mood. After all, his needs took priority over mine.
As I talked, he said nothing, did not look at me, and gave me no indication that he was listening. Nonetheless, at one point I simply said,
“I like you, James. You’re a nice lad.”
I didn’t expect him to go from staring-into-space mode to suddenly looking me straight in the eyes, grabbing my shoulder and laughing really really loud, but that’s what he did. Because guess what? He was listening!
Everyone communicates, some just in their own way. And listening is part of communication too.
2) Assume that most of their identity is down to autism rather than personality choices.
The phrase “yeah, that’s his autism” is one I have heard far too many times. Even in professional circles.
Yes, our autism influences us. Yes, it often gives us particular habits or interests unique to us. But to say it’s “just his/her autism” is implying that we don’t get any say in the matter.
I remember when I was running a chess tournament in a special school (it was amazing- the students got more from that one tournament than in any of the sixteen I’d run in mainstream). One crucial match was scheduled for a day when the school was doing a special event. Throughout the day there was only one opportunity for this game to be played… and ten minutes before the start, one of the students got a migraine and had to go home.
This stressed me out because I was relying on that match’s result so I could drive straight to the trophy centre after work and have the prizes engraved (and therefore get them handed out before the end of term). And I’m fairly transparent, so people could tell I was bothered by something.
When I told one of my colleagues I was feeling stressed, she immediately asked me “oh dear- is it because today’s been a break from routine?”
No, it wasn’t. (And speaking as a former primary school teacher, you should only be in the classroom if you can adapt reasonably well to unexpected change.)
Some other examples:
- I’m good at maths because I put the effort into learning. It’s not “just my autism”.
- I dislike small talk because there are more useful, funny, important or heartfelt things to talk about. It’s not “just my autism”.
- I’m honest with people because it’s the right way to be. It’s not “just my autism”.
- I love chess because… well, there’s a whole article about it here (opens in new window). It’s not “just my autism”.
- And you know what, even my anxiety isn’t autism-related. That was done to me.
That said, there is a balance. Like I said, autism does have an impact on us. I used to watch Independence Day on video over and over and over and over again when I was twelve, and you could validly say that this habit was influenced by my Asperger’s. But the main reason it happened was because Independence Day was an awesome movie! (At least, to me at twelve it was.)
Moral of the story? Regardless of how strongly autism influences the child in question, don’t forget that they have a personality too.
3) Assume their perspectives are skewed and unreliable.
This is Morgan. Brilliant lad, and I promise I’m not just saying that because his brain’s so similar to mine. You may know him from the Facebook page Planet Morgan Aspie Superhero.
Morgan’s Asperger Syndrome is, in my opinion, not a significant problem for him. In fact (although I may be biased here), I think his Asperger’s actually just makes him awesome.
Sadly, it’s his severe anxiety that presents him with his biggest challenge. He no longer attends school because the word alone makes him afraid. And, in a story all too familiar to parents of autistic children, the source of this anxiety was a devastating amount of bullying throughout life at one of his previous schools.
Unfortunately, this bullying was allegedly not addressed effectively. (And yes, I used the word “allegedly”. This is no indication of my personal beliefs, but simply mindful of the fact that- having a website as well-read as Autistic Not Weird [yes, if you’re not reading this article on autisticnotweird.com, it’s been stolen from there. Don’t worry, it happens.]- I have a duty to write responsibly.)
According to those closest to him, the bullying continued because each incident was seen as Morgan having a skewed perspective. After all, he had an autistic spectrum disorder and didn’t see social situations like the rest of the children. Therefore, the attitude was allegedly taken that if all the other children in the class were ok and Morgan was not, it was likely to be his ‘faulty’ perspective at play.
Let’s leave aside the little fact that children with special needs are significantly more likely to suffer from bullying by their peers. (And that combining this with repeated disbelief has caused untold damage in the past- damage that makes even Morgan’s experiences seem tame.)
And you know what, let’s pretend for a moment that people are correct in saying that autistic people are less reliable. (Spoiler alert: they’re not. When a crime happens, you want a witness with an Aspie memory close by! But let’s just pretend otherwise.)
Even then, the autistic person’s anxieties are still real, and they still need to be addressed.
Oh, and if bullying or abuse is reported by a distressed child- autistic or not- it must be taken seriously.
Britain is still dealing with the fallout of a whole generation of abused children who grew up being ignored: literally thousands of victims who had to wait until the twenty-first century to be believed. Things are a lot better now than they used to be, but disbelieving a child simply because of their neurological differences is not only damaging to their self-esteem: it’s putting them at very serious risk.
(Morgan is safe now, by the way, and he has been for a while. In fact, given time to grow up and the right opportunities to learn, he’ll be the perfect person to help and guide vulnerable people- and I’ve made sure to tell him so.)
4) Allow the world to teach them that autism is A Bad Thing.
Right from the moment we hear about it, we’re instructed to believe that autism is A Bad Thing. That’s why people like me get so many messages from worried parents, asking what they’re supposed to do post-diagnosis because they don’t know anything about autism.
But their worries reveal that they do know one thing about it: it’s supposed to be bad.
Speaking as an autistic man, my opinions differ somewhat. But I understand their panic completely. The unknown can be very scary if you feel something’s bad but you don’t know why. (For example, everyone feels a chill in their spine when their boss asks “can I have a word with you?”)
Now, non-autistic people seeing only the negatives is counterproductive enough. But imagine the damage that gets done when autistic people themselves are led to believe that their autism makes them deficient.
Heck, combine this point with #1 and talk about how terrible autism is right in front of them, and watch what happens to their self-esteem!
I’ll give two examples that struck me greatly. First of all, there’s Cadence.
For those who aren’t aware, Cadence’s family has their own Facebook page– and this picture below went sort-of-viral not long ago.
You may have already spotted the most tragic sentence (in my opinion), but I’ll quote it anyway:
Grownups always say its hard being mum or dad if your kid is autism.
Looking at their page, it becomes obvious that Mum and Dad are doing a sterling job as parents. But other people- the TV, and perhaps even society itself- have led Cadence to believe that a large part of her personality is A Bad Thing. Which is absolutely not fair.
Secondly there’s the story about a six-year-old Californian boy being comforted by Santa, after asking whether he’ll be on the naughty list because of his autism. Given Santa’s reaction, most people thought of this as a sweet story when they read this. But me personally- despite my reputed positivity about pretty much everything- I shuddered.
I dream of the day when six-year-old children won’t have to live with the baseless assumption that having autism is enough to land them on the naughty list.
(Actually, wait- that assumption isn’t baseless at all. It’s based on what they’re made to feel by non-autistic people.)
And finally… a point which may rub a couple of people the wrong way, but it has to be said.
5) Let them find out that you “love them but hate their autism”.
This point is a step up from #4, only far more personal.
And yes, I am well aware that lots of people feel this way, parents in particular. Some have even written articles and blog posts entitled “why I love my child but hate his/her autism”. And I get it- watching vulnerable children struggle is a dreadful experience, and even more so if they’re your own. Hating the condition that holds them back is quite a natural response.
But bloody hell, it can be damaging.
Why? Well, imagine that a child’s mother makes the mistake of saying the sentence “I love my child but hate their autism” in a place where the child can overhear her. The child will take one very significant message from that, and one which will definitely stick with them:
“Wow… a part of me is so dreadful that even my mother can’t love it.”
Everyone struggles with their personal demons. Everyone. And some people only cope with their demons based on how well other people let them cope.
When someone knows you hate their autism, you are bringing those demons to life. You are giving their demons a name, and you are giving those demons authority.
More than anything, you are saying that the child is right to be fearful and hateful towards a large part of themselves.
Again, I get it. I’ve watched so many struggling children that I’ve had to learn how to steamroll over the physical hurt I feel for them (not that it always works, of course). And if there’s a stand-out factor that is causing them harm or lost potential, of course I want to address it. But I refuse to hate part of a child.
If you’ve reached the end of this and still “love the child but hate their autism”, that’s your right to do so.
But please, for the child’s sake, please never let them find out.
So to summarise:
Instead of talking about them as if they’re not in the room:
- Remember that they can hear you, and always assume they are listening.
Instead of assuming a person’s autism defines their character:
- Remember that they get to make personality choices just like non-autistic people.
Instead of believing that their perspective makes them less reliable:
- Remember that you’re actually skewing your own perspective on autism by making this assumption.
Instead of allowing the world to teach them their autism is A Bad Thing:
- Tackle the problem head-on and remind them how awesome they are.
Instead of loving the child but hating their autism:
- Love the child.
Hope this helps some readers. Like I said, some of these mistakes are surprisingly easy to make- but then again, plenty of them are easy to avoid.
Chris / Captain Quirk
Footnote- people have offered other suggestions too, which are also good enough to share. I’ll list them below.
Additional ways to damage autistic children without even knowing:
6) Repress their special interests, since they often use these to communicate and cope with stress. (Stephanie Keyes)
7) Only focus on bad behaviour whilst ignoring good behaviour. (Stephanie Keyes)
8) Fighting all their battles for them, with the automatic assumption that they can’t do anything independently. (Adapted from a suggestion by Eric Van Gucht)
9) Leaving your child undiagnosed and refusing to get him the proper help he needs because of the stigma an autistic child will bring you. (Adapted from a suggestion by Kristin Pedigo)
10) Treat your child as if their autism-specific struggles are no different to what everyone else faces in life, which means that if they find their issues difficult it’s inferiority rather than difference. (Adapted from Audre C- more details in her comment below. Yes, autistic and non-autistic children have several struggles in common- more than we often think- but it’s so important to recognise when their issues need individualised help.)
11) Talk about a “cure” for it, implying that it needs to be cured, and because it needs to be cured, it is bad. (Pieter Dykhuis, age 14)
Chris Bonnello is available to lead talks and training sessions regarding autism issues. For further information please click here (opens in new window).
Copyright © Chris Bonnello 2016
Cover photo: http://vector.childrenshospital.org/2015/02/autism-like-behaviors-impaired-nerve-tracts-found-in-institutionalized-children/