A plea to the autism community, from one of your own

IMPORTANT NOTE- I wrote this article way back in 2016. Some of my opinions and perspectives have changed immeasurably since then, including the language I use and the graphics that often use them. Whereas there is a bunch of stuff in this article that’s still relevant, I’m currently wondering whether to edit it enormously or bin it altogether. For now it’s still here, as a sign of how much ANW and my advocacy style have changed since their earlier days. -Chris

Please approach this article honestly, because it’s something we all need to do. Regardless of how difficult it is.

Please stop arguing.

I’m serious. Please stop. It’s embarrassing to watch. More to the point, it damages the people we love.

Not long ago, I uploaded the picture below to Autistic Not Weird’s Facebook page [links always open in new windows], partly to vent a little frustration. The reaction from the community was quite interesting.

I had multiple autism page owners thanking me for this picture, since some claimed they’d be “crucified” if they (as non-autistic parents) had made it themselves.
For the record, there are phrases here (mainly functioning labels) that I wouldn’t use anyway. The point of this picture was to highlight the issues of not being able to use ANY phrases at all.

Over 175 comments later, I saw many people agreeing that offence is taken far too easily, and some gentle discussion about what words people liked and did not like (without a single argument). One particular comment stuck out:

This is why I love this page so much. It’s all about care, support and discussion, not bullying people into adhering to a social justice framework. I’ve had awful experiences at other autism pages on Facebook. Pages where they give you a list of what kind of language you are and aren’t allowed to use, and if you try and discuss this with them, you’re called “scum”. It really put me off trying to get involved with the autism community at all. Thank God for you.

I felt quite flattered, but also saddened. People shouldn’t have to thank individuals for hosting peaceful coves within the community. The community itself should be peaceful. After all, loads of us need that peace.

But she was right. When I venture out into the online autism community, dark places exist. Places filled with vitriolic, bile-spewing arguments (ironically, contested by people who are probably really nice in real life). And that comment she left was simply about word choices- I haven’t even mentioned cures, marijuana or vaccines yet!

It’s so sad. There are angry blogs and pages out there that seem to think that if you shout at the world aggressively enough, the world will suddenly appreciate autism. Or if you scream enough about how miserable life is with an autistic child, the world will accept them for the wonderful people they are.

So why does the autism community argue so much?

I’ve been asking myself this for a while. If we’re all rooting for our autistic loved ones (including ourselves), why do we waste so much energy picking fights?

Partly because the internet’s a great place to argue. You can’t see the face of the person you’re insulting, so it’s easy to pretend they don’t have feelings. You also don’t know your opponent personally, so you don’t know which sensitive topics need avoiding.

Also, less consequences than yelling at someone face to face.

But that’s the internet as a whole. What is it about us- the autism community- that can’t step back from it all despite sharing such a strong common link?

In my experience, it’s simply because Hell hath no fury like a parent who believes they’re standing up for their child. Nor hath it any fury like an autistic person speaking up for downtrodden autistic people.

That’s why you see fierce arguments about different types of therapy, for example. Because one parent may see therapy doing wonders for their child, then come across another parent whose child responded negatively. Both might believe their experiences were objectively correct, because that was their own family’s real-life experience. And from their own perspectives, each of them are absolutely right.

But, especially if their autism community’s not a close-knit one, an argument starts.

Because all the while, both sides forget that autistic people are different to each other for the same reason that non-autistic people are. So it’s irrational to think “this therapy worked/didn’t work for my child, therefore it’s good/bad for all autistic children”.

[Important 2018 edit- originally this section was specifically about ABA, suggesting that it “works for some children but not others”. In the nearly three years since I wrote this, my understanding of ABA has evolved. I can no longer defend ABA in any form that relates to its original principles of changing autistic children’s behaviours to make them appear “normal”, given the reported 46% PTSD rate among children who have been exposed to it.

To complicate matters, there are “ABA” therapists (note the speech marks) who genuinely do help children to communicate, express their needs, develop coping strategies and keep themselves safe. But these are not ABA principles, and in many cases the therapy is only called ABA so that it falls under American health insurance plans. To those reading this paragraph and wondering whether your child’s practitioner is helping or harming, this is an excellent guide to read.]

We use this phrase all the time in front of people who are learning about autism. Some of us need to remember it for ourselves too.

What are our biggest argument triggers?

I’m only going to cover a few. The arguments over subjective topics like medication, homeschooling and so on have the same causes as described above. Some people have personally seen them work, others have personally seen them not work, and arguments come when they forget that not everyone on the spectrum shares the same personality.

Besides those, there are three that I’ll cover.

Different types of autism

I’m going to start this section with a quote from Stuart Duncan’s dead-on article: This is why no autism story or program will ever be perfect.

“Personally, I’m attacked every single time I talk about how great a person with autism can be, because I’m not talking about how disabling autism can be. Then I write about how disabling autism can be and I’m attacked because I’m not making autism sound like the best gift ever.”

I’m not even sure I need to add anything to that. Because autism is so wide-ranging and far-reaching, and because it’s a spectrum that has university professors and people with severe intellectual disabilities (many of whom share similar-sounding diagnoses), it’s unreasonable to expect people’s experiences or insights to line up as neatly as our toys do.

Yep, I just cracked a joke about a common behaviour related to autism- in fact, a rather fun activity in which I also used to partake. Please leave your offended comments at the end of the article.
Yep, I just cracked a joke about a common behaviour related to autism- in fact, a rather fun activity in which I also used to partake. Please leave your offended comments at the end of the article.

This massive breadth of differing experience has led to countless disagreements by people who think (usually without consciously realising) that their personal experience of autism is the most accurate one out there.

The two most hurtful examples I can think of are:

1) The occasional parent of a severely autistic child who claims that people like me “don’t suffer from autism because you’re not like my child. You’re not disabled by autism, so you don’t understand it”.

2) The occasional person in my region of the spectrum, who responds with “well I’m autistic and you’re not. So I’m the person who understands autism, you just look at it from the sidelines.”

(Believe me- however offended you are by whichever one offended you, I promise the other one is equally hurtful to the opposite side. Equally.)

It is true that people across the autism spectrum have vastly different life experiences. But then again, so do non-autistic people. I don’t assume that non-autistic Mavis down the road has had similar life experiences to non-autistic Chief Sitting Bull, so why would I assume people like me have similar life experiences to anyone else on the autism spectrum?

So yes- in a contest to understand a severely autistic child, between a non-autistic person and someone at my end of the autism spectrum, I’m not going to declare a winner.

(Maybe get to know the actual child. You’ll learn more about them that way.)

In terms of autism advocacy, one stellar example of counter-productivity came when Sesame Street introduced Julia.

Fun fact: coincidentally or not, Sesame Street has ***Autism Daddy*** working for them! I do wonder whether he had some influence over this.
Fun fact: coincidentally or not, Sesame Street has Autism Daddy working for them! I do wonder whether he had some influence over this.

We’ve all heard the story. Sesame Street invented Julia, an autistic puppet. In doing so they planned to teach their audience about autism before they even reached school, so they’d understand more about their autistic classmates from day one. The autism community went wild. It was amazing news!

Except… not everyone was happy.

I’m not denying that this area of the spectrum needs urgent awareness bringing to it. But let’s not steal publicity from other needy children in doing so.
I’m not denying that this area of the spectrum needs urgent awareness bringing to it. But let’s not steal publicity from other needy children in doing so.

Yep- Sesame Street literally invented an autistic character, and some parents of autistic children actually moaned about it.

My honest opinion? I do wonder whether those who complained are interested in autism awareness in general. I suspect they’re just interested in awareness of their own child.

Can’t blame them for that as parents, of course. Their struggles are very real. But I can blame them for trying to drag down awareness of other autistic children in order to raise awareness of their own. That’s foul play.

I’m not what people call “severely autistic” (obviously), but I smile whenever children learn from their “severely autistic” classmates. Sure, they’re not learning anything about my autism, but others on the spectrum will have an easier time anyway.

And that’s enough. I can raise awareness of myself another day.

So this is my plea- to those associated with all areas of the autism spectrum- please remember that your experiences and others’ will differ. And that is fine. It’s not something to get into arguments about.

Oh, and when children or adults anywhere on the spectrum are helped by increased awareness, that’s a good thing. Whether or not it has a direct impact on you.

Language choices

I’m not going to go into detail about why vocabulary is seen as an issue. The picture at the top says the basics, and this article I wrote about ‘labels’ says everything else.

With all the issues faced by autistic people, you’d think that there’d be better things to argue about than the ordering of your words. Surely there are much more productive ways to advocate for autistic people? My philosophy (again, a 2018 edit) is to simply call the person what they want to be called. If they want to be called a “person with autism”, I call them that. If they want to be called an “autistic person” (and my recent survey showed that this is the preference of a massive majority of autistic people), I call them that.

But some people are very emotive about particular words. I’ve had comments to the tune of “I was going to show your insightful and helpful article to my struggling 13-year-old, but I saw the word ‘mild’ in the title so I’m not going to.

Well, there’s some ‘insightful and helpful advice’ your struggling 13-year-old may grow up never hearing. Nice job. But at least you didn’t offend him very slightly.

Oh, and my friend Tom from Autistic Genius recently had a message from a random person who was offended by his use of the word “genius” in relation to autism.

Sometimes on the internet, you seriously just can’t even.

Yep, I made this for the labels article. Reposting because it's relevant.
Yep, I made this for the labels article. Reposting because it’s relevant.

As much as words matter (and many consider the “autistic”/”with autism” debate as a discussion on the right to self-identity- and the way autism is viewed by society- rather than just a debate on the ordering of words), sometimes concentrating on specific vocabulary is a huge distraction from other important issues.

Picture it this way- imagine you see this sentence on your screen, uncensored.

I hate being f***ing autistic.

I believe you can split the reactions of the autism community into three groups.

1) Those who see the F word and think “you could have phrased it better than that.”

2) Those who read it and think “hey- it’s far less offensive to say “I hate having f***ing autism”!”

3) Those who’ll read the sentence, look past the phrasing, and recognise that it’s written by someone who clearly needs help and guidance, so who cares which words they used?

(I don’t normally portray my beliefs as facts. But if you’re not approaching it like #3, you’re wrong. That person needs help, not judgement.)

To finish, I’d like to tell you a story that sums up my beliefs fairly well.

On my last day working with a 12-year-old autistic boy who had profound learning difficulties and epilepsy, we took him to a restaurant. (For those interested, he was the nonverbal boy from point #1 in ‘Five ways to damage autistic children without even knowing’.) I knew I was really going to miss him after that day.

So when he had a full-on seizure at the restaurant and we had to call an ambulance, the mood suffered a bit. And whereas I did exactly what I was trained to do, and I stayed perfectly calm throughout the whole event, there was a level of personal concern. I deeply cared about this kid.

And you know what? When the ambulance arrived and the paramedics came running in, the absolute last thing on my mind was “should I tell them ‘he’s autistic’ or ‘he has autism’? Which one’s less offensive?”

I’ll concede that “autistic person” has the better arguments going for it (and, since it’s preferred by the majority of those on the spectrum, that alone should end the argument). But we should always take opportunities to help and guide before taking opportunities to correct people’s language.

Vaccines

Yep, the V word. Perhaps the most emotive source of debate among the autism community (although it may be the runner-up to people who say they want a “cure”). Online and offline, this subject has brought unparalleled hatred and division among those who love people with autism.

Now, despite repeated stories of children falling ill just hours after being vaccinated (and let’s be honest, there’s enough of those stories to warrant serious investigation), there has never been a confirmed, scientifically valid, peer-reviewed study linking vaccines to autism. Scientifically, there is no debate. The ‘debate’ only exists among non-scientists like us.

(Although even if there were a proven link, I’d still advocate vaccines because I’d rather put a child at risk of autism than at risk of death. And I dare anyone to object.)

But regardless of whether the “anti-vaxxers” are right or wrong, I honestly don’t think they’ll ever get the majority on their side without the help of literal scientific proof.

Why? Because all too often, the debates look like this.

Click to open full size in a new window. This argument was so frustrating to have. Not least because she spent hours literally implying that I’m diseased- and (even more damagingly) that her own children are too.
Click to open full-size in a new window. This argument was so frustrating to have. Not least because she spent hours literally implying that I’m diseased- and (even more damagingly) that her own children are too.

I once heard a quote in church that went something like: “more people have been drawn to Christ by the love of other Christians than all theological reasoning combined; and more have been driven away from Christ by hatred within the church than any atheistic argument.”

I wonder if there are parallels with the vaccination debate. If the people making the most noise were famously reasonable about it, the rest of us might be more open to listening and coming to a common understanding.

I... just... argh.
I… just… argh.

One extra problem is that the anti-vaccination argument has every opportunity to say “vaccines can cause injury- let’s campaign to make them safer”, but instead the overwhelming cry is “vaccines can cause injury- let’s campaign to make people stop vaccinating at all”.

Honestly though, I think the arguments mainly happen because:

  • The anti-vaccine side is angered that the majority seem ignorant to the apparent dangers of vaccines;
  • The pro-vaccine side is angered that they’re being told their beautiful children have been ‘damaged’ or ‘injured’.

That, and far too many children died after the MMR scare because panicked parents didn’t vaccinate their kids. So yes, it’s an emotive subject before the first word is even spoken.

A few specific pleas to each side of each debate

Most of us (including me) will fall into one camp or the other for some of these, and please don’t take these personally. We all need to consider not where we stand, but how we choose to stand with regards to sensitive issues. Attitudes can damage people severely whether or not you’ve met them.

To those who are PRO-vaccine…

I share your frustrations with those who imply that autism is a disease. I’m also acutely aware that when people say “I saw it happen to my child” in lieu of something scientific, it’s tricky to win them over with certified research.

But never forget that underneath every story of alleged vaccine injury, there’s a parent who is honestly hurting for their child. Show them the science if you want, encourage them not to think of their children as damaged or ‘robbed of their future’, but remember the personal experiences of the person you’re talking to and be sensitive.

…and to those who are ANTI-vaccine:

I’m not going to try telling you you’re wrong. Nor will I belittle your personal experiences with vaccines. I’ve talked to enough parents to know their arguments come from genuine emotional hurt.

But it would help both you and your child if you see them as the awesome child they are, rather than mourn who you think they might have been. Positive outlooks are everything, especially to children who are made to believe they’re ‘not what they should have been’.

Also please respect that, even if vaccines were to cause autism, they would simply not be around if it were healthier to leave kids unvaccinated. This is why those on the other side of the debate continue vaccinating. They don’t want to risk their children’s lives, which is understandable.

(Unless you would rather put a child at risk of death than at risk of autism. If that’s you, we have nothing to discuss.)

To those who WOULD want an autism cure…

I honestly don’t think you want a cure for ‘autism’ itself. I think you want a cure for the suffering that comes with it. Most parents I’ve heard arguing for a cure would quite happily keep their child’s personality intact whilst removing their struggles.

If you’re one of those parents, then please don’t refer to your wishes as a ‘cure for autism’ when you really mean an ‘end to his/her difficulties’. To people like me, it’s extremely hurtful when we’re seen as ‘wrong’ or ‘faulty’. And even if that’s not what you mean, it’s the impression you give when you use those words.

…and to those who would NOT want an autism cure:

Personally I’m with you, but there’s no denying our side argues hurtfully too. If you could stop telling suffering parents that they ‘hate their child’ for wanting a cure, that’d be great. Like I wrote in the above paragraph, almost 100% of the time these parents simply want a cure for the difficulties, not for the person.

To parents who say high-functioning people are “not autistic enough to understand my child’s suffering”…

Parenting a child with special needs is tough. Absolutely. But please don’t make the mistake of thinking there’s a link between severity and suffering. The severely autistic 12-year-old I mentioned was literally the happiest child I’ve ever worked with. Meanwhile, I’ve known far too many people with “high-functioning” Asperger’s who have attempted suicide.

Your child may not be toilet-trained, but please be grateful they don’t know how to cut their wrists (like far too many autistic people I’ve known). Those with “mild” autism are capable of suffering too.

…and to high-functioning people who claim non-autistic parents “don’t understand autism because they’re not autistic”:

I know, having your genuine issues belittled or dismissed by others is absolutely awful. I experience it myself.

But until you’ve been kicked enough times, changed enough nappies/diapers and replaced enough broken doors to know what autism looks like with severe learning difficulties, don’t insult hardworking exhausted parents for not sharing your neurology.

To those who are pro-medication, anti-medication, pro-homeschooling, anti-homeschooling and all etcs:

I’m glad you have found the option which suits your child, and whichever stance you take I hope they benefit loads from it. But please respect that your child is different to the child of that guy you’re arguing with over the internet. His/her needs may be different.

Finally, to those without autism who like to dictate which words I should and shouldn’t use to describe myself:

Please stop getting offended on my behalf. I’m a big boy now, and I can get offended all by myself if I choose to.

(And yes- if I choose to. A lot of the time, being offended is a choice.)

offended

(Again, I do believe “autistic person” has the better arguments. By default, this is what I use when talking to others on the spectrum. The above picture is about my personal choice, which I have a right to have.)

To conclude

You know, when you wipe the arguments to one side, there is so much beauty to be seen in the autism world.

I mean, wow- look at the previous article, where over 100 kids on the spectrum shared what they love most about life. It’s perhaps the most beautiful thing on this website, and I’m envious that it was written by those kids rather than me!

Take a moment now, and think of the five funniest moments you and/or your autistic relative have experienced despite (or maybe because of) autism. Heck, it doesn’t need to be your top five- just think of a bunch of them.

Now think of that last guy you spent an hour arguing with over the internet, when neither of you left the argument richer, or more fulfilled, or having changed the other person’s mind at all.

Discuss all the issues above, by all means. They’re extremely important. But if it turns from discussion to argument, both sides will probably stop learning.

Thank you for reading (and if the comments sections explodes, I won’t be surprised!).

In the spirit of this article, discussion is welcomed but arguments are not.

Chris Bonnello / Captain Quirk

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Are you tired of characters with special needs being tokenised and based on stereotypes, or being the victims rather than the heroes? This novel series may interest you!

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Book one can be found here:

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Chris Bonnello is a national and international autism speaker, available to lead talks and training sessions from the perspective of an autistic former teacher. For further information please click here (opens in new window).
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