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


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.

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.

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 understand 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) and the survey from a few months ago shows we’re all rooting for each other’s autistic relatives too- 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 ABA, for example. Because one parent may see ABA doing wonders for their child, then come across another parent whose child responded negatively to it. 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 “ABA worked/didn’t work for my child, therefore it’s good/bad for all autistic children”.

 

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.

Incidentally, we had a discussion about ABA on Autistic Not Weird ***here***. Note the hugely differing perspectives but complete lack of arguments. I can’t take any credit for having respectful followers, obviously, but they deserve a shout-out and a thank you.

Incidentally, we had a discussion about ABA on Autistic Not Weird here. Note the hugely differing perspectives but complete lack of arguments. I can’t take any credit for having respectful followers, obviously, but they deserve a shout-out and a thank you.

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 at my end 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, a girl with autism. 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 a character with autism, 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 don’t have ‘severe’ autism (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 people with autism, you’d think that there’d be better things to argue about than the ordering of your words. There are much more productive ways to advocate for autistic people.

(And yes, I used ‘people with autism’ and ‘autistic people’ in the same paragraph. That was deliberate. I’m the guy on the spectrum, so I get to decide how I describe myself- and I choose whichever one comes to my head first. Unless, of course, I’m talking to someone who does have a personal preference, in which case I’ll use that one out of respect for them.)

 

But believe it or not, 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.

The thing is, as many people point out, concentrating on specific vocabulary is a huge distraction from the actual 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 our help, not our 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 boy who had severe autism 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?”

And if that had been my focus, I wouldn’t have been fit to be in the job.

 

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.

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 Andrew Wakefield were actually right, vaccines 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. Then 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’ve experienced 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. That’s basically ableism in reverse.

 

To those who are pro-ABA, anti-ABA, pro-medicine, anti-medicine, 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

 

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 is an 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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Picture credits:

Cover photo: http://www.vbctulsa.com/embraced-ignorance/

One person with autism picture: aspecialsparkle.com

Lining up toys picture: Nancy at myria.com. Yep, it’s Quinn again.

Julia picture: http://www.today.com/parents/sesame-street-introduces-first-character-autism-meet-julia-t51491

Edited Julia pic: unknown.

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49 Comments

  1. Absolutely fantastic post – if people really followed your advice, we could stop military wars as well – so many people thinking it’s their way or the highway, arguing but never listening, quite well enough, to both sides.

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  2. Very well said! Congrats on the excellent post Chris. I agree 100%

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  3. Very well articulated yet again. Many thanks for your insights and balanced argument. Let’s share this post so educate more about the meaningless arguments that arise!

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  4. I had no idea that there was so much conflict on other sites this is the only one I have spent much time on……. Thinking I may just keep it that way! 😉

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  5. If Autism Daddy had been influential over Julia, she would have appeared like the second picture of Julia in your post. He REALLY hates autism.

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  6. Of all the names I’ve been called over the years, variations on Aspie/Autie theme don’t really count.

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  7. I’m a teacher of middle school children with severe disabilities including autism and a grandmother of a 6 year old with autism. I’ve had students that range from non-verbal to what some call Aspergers. They are all precious in their own way. They am learn in their way and I have learned from all of them. I try to help almost of the parents by being the teacher and pushing each child to be as independent as they can be. I do the same for my grandson. He can already make his own breakfast. Just love the child and they will bloom!

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  8. Your discussion of the contentious vaccine issue was generally handled well and with sensitivity toward concerns on both sides. However, it is not true that “thousands of children died” in developed countries after the reduction in uptake of the MMR vaccine following publication of the infamous Lancet article by Andrew Wakefield. In both the US and the UK the number of deaths from measles over the decade largely in question here can be measured in single digits. And while it’s fair to argue that even one death is one too many, it’s not fair to hyperbolize things so extremely, or to use general measles mortality figures from less developed nations to illustrate the specific autism-related vaccine debate you’re referencing above.

    Sorry to seem nitpicky, because overall I do think this whole article is excellent and certainly that one misleading factoid doesn’t take away from your general premise about the importance of acceptance and civil disagreement.

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    • Looks like I’ve been misinformed then- thanks a lot for letting me know!
      I’ve changed that part of the article to “far too many children”, in the absence of a definite figure (unless you know a reliable source for one?).

      Thanks again- good job you pointed this out! 🙂

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  9. Such a great read! You handled each perspective diplomatically. Thank you for being respectful to all. God bless 🙂

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  10. Brilliant. Thank you so much for writing this!

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  11. I really have enjoyed this post so much but to do my response justice, I better declare a few facts:
    I am a parent of a autie of 22 who was not verbal until age 4 and still have an intellectual disability (IQ~70). However he is happy and works full time at a cafe as a Kitchen Hand and loves his work. He enjoys sports and has a naive but happy demeanor in his everyday living.

    As for the different arguments raised, my opinion is that as parents we all ‘want’ the best for our children but best is based on our limited views of life. As allistic parents, we see the world in our non-autistic eyes and perception and depending whether we are optimistic or pessimistic, we react accordingly – hence the variety of responses you tend to receive on each of the contentious topics. Also add to this is the goals missed by the parents projected onto their children viz a viz parents pushing their children into extreme tennis camps. As parents there is no doubt we try to make up for our kids what we miss out on (as kids) and given that we now have less children per household we developed the ‘helicopter parent’ syndrome to mould, protect and direct (instead of guide) and prevent pain/failures/disappointment of any kind to our kids. This I believe is not helpful (my opinion only.) i strongly believe we learn more from mistakes and so where possible I use that philosophy to raise my son.

    Having brought up my autistic son in Australia where we had early intervention and autistic speciality school until age 18 and then college (or we call trade school) thereafter. I am pleased to say that he has learnt enough of ‘our world’ to function normally most of the time. I have seen first hand the responses you have received and the extent of the difficulties faced by parents as I was also a volunteer on school council (parents-teachers committee) for a number of years. In summary I find lots of misinformation and heaps of ignorant people plus when the internet was still young (1990s and early 2000s), a lot of information was not validated or discussed (note that readers rarely had access to feedback on articles then). I recall when my son was diagnosed we were told it was a 1 in 10,000 occurrence and there were less than 10 doctors/pediatricians in Melbourne who could diagnose autism. This I am happy to add is no longer the case.

    Finally it is very refreshing to read articles and blogs from people on the spectrum as I still struggle to get feedback from my son and through these blogs I hope to understand him better. Keep up the great work and thanks a million

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  12. This is exactly how I feel and I just wish people would stop this and support each other instead. Things are hard enough already. Thanks for a great read. From- Mum of two kids with ASD.

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  13. I have touched on these things in my own blog because, like you, it bothers me that some autistic people presume they speak for the masses and are quite aggressive with it. Since having my son diagnosed, I have reason to believe I am on the spectrum and would have no problem in using the word ‘autistic person’ in reference to myself. Life is hard enough without people bickering over words. We are challenged on a daily basis by people who can’t be bothered to understand so we can well do without it from people who know better. My only concern of how autism is portrayed in film and television is that too many people watch one film and presume it represents autism as a whole. It’s a point I keep trying to get through to my readers and I urge them to do their research in order to see how diverse it really is. I love your conclusion because I happen to think the autistic mind is a beautiful mind. My son is one of the happiest children I’ve ever known and he loves his life.
    Excellent post!

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  14. Wow! This blog post is brilliant. I think most people who engage with autism community on-line come across very angry social justice warrior types who just seem to be itching for a fight. Despite what they claim I do not consider these people to be genuine autism advocates, they are more interested in working out how they can be offended and then using that offense as an excuse to berate their “opponent”. I have had this done to me and been called all names under the sun. I have seen parents and autistic people themselves labeled as bigots and as evil just because they had a different opinion on something as trivial as person/disability first naming. Its utterly pathetic and very destructive to the cause of autism rights.

    We all know damned well that there are huge changes that need to happen to enable autistic people to reach their potential. We know that education needs to change, we know that the public needs to be educated about autism, we know that employers need to understand autism, we know that support services for autistic adults are woefully under resources to the point of being almost non existent. We know all these things and none of them are easy to fix and yet people waste their time bickering about the trivial in an attempt to “out PC” each other and attain some kind of faux moral high ground.

    I totally agree with the author. Just stop it already! There is much work to do for autism rights and none of this petty in fighting is helping, in fact it actually harms the cause.

    I blogged about my own experiences on this matter a while ago, specifically about my run ins with social justice types. linked below.

    https://autisticbean.wordpress.com/2015/06/18/the-cruelty-of-strangers/

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    • Let’s be clear: you think these things don’t matter. As an autistic person (diagnosed by a neuropsych before you start accusing me of not actually being autistic because I disagree with you as I saw in your blog post you’re prone to doing) language matters to me. Are you familiar with the term “defining the narrative”? Do you ever think about the implications and effects of language and how disability and autism are portrayed? Or are you only concerned with the fact that you felt attacked?

      Your whole blog post is absolutely the thing I fear most from parents of autistic people. It is rife with arrogance, disrespect for autistic self advocates, attempts at undermining our right to define our experiences, negativity towards autistic people who say something you don’t like. It takes a lot of courage for autistic people to speak up in a society where we are not valued and are considered voiceless. Your absolute disrespect of the advocacy of others disgusts me. Good for you that you are in a position of privilege that these very real issues which perpetuate autistic people being seen as less than non-autistic people aren’t a factor for you.

      I find it peculiar you characterize autistic self advocates as attempting to gain some “faux moral high ground” when you have clearly placed yourself on a pedestal above those of us who would deign to speak up for ourselves and point out when language is hurtful or negatively affects us. It’s a real shame that you care so little for the thoughts and experiences of autistic people.

      You are a parent of an autistic individual, correct? If one day your child disagrees with you, tells you that they are hurt by your attitude towards autism and autistic people, how will you respond? Hopefully not by completely disregarding their views and opinions, as you have done here. That’s a rhetorical question, by the way.

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      • no, not correct. Chris IS autistic, not ‘the parent of an autistic individual’ as you say.

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        • My comment was in response to “Bean’s Daddy”, not Chris. Thank you for attempting to clarify.

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      • I think you will find that Chris is not the parent of an autistic child – Chris is autistic and cares a lot about the experiences of autistic people including his own. It does take a lot of courage for autistic people to speak up; Chris has and look at the response you gave him.

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        • Sorry Ultimate – bit of confunsion there.

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      • I did not characterise autism self advocates in the way you describe. Please re read my article and you will see that I am drawing a distinction between genuine advocates for, whom I have the up most respect for, and the false advocates who are angry and seem to just want to argue about trivial things. The former are they most important group in autism advocacy and are the voices that I listen to the most. Indeed the article was written with input from several self advocates. The later are destructive to the cause and just end up driving people away to ghastly places like autism speaks.

        If language matters to you then OK that’s fine. But changing language will do bugger all to help my son. Sorry it just won’t. It won’t do anything to improve employment rates, the education system or adult services. It might make you personally feel better if we use the language you happen to prefer but I guarantee you the very same language may make another autistic person feel uncomfortable. Someone will ALWAYS be offended by language choices because its a subjective preference. Unless you can objectively demonstrate that one language choice has an effect over and above making you personally feel better then it remains, to my mind, a triviality. That being said I’ll happily use the language preferences of any autistic person when speaking to them just out of politeness. But to even consider language choice to be a pressing issue is simply erroneous.

        As for your comment about disregarding the views of autistic people. Nothing could be further from the truth as I said that article was written with input from several autistic people and after a continual dialogue about how destructive SJW’s are to the cause of autism rights. The term “faux advocate” was actually coined by an on-line autistic buddy of mine when we were chatting about a particularly odious face book group comments section. I’d invite you to read the article I linked below for just how autistic self advocates have educated me and help me become a better autism dad. Conversations with autistic adults have been the single best thing I have done for my son. They have taught me so much.

        Look I am on the side of autistic people and will always listen to their opinion. This includes yours. But this does not mean every autistic person is infallible, even about autism, and sometimes even self advocates get things drastically wrong. The infighting described in Chris’s post is one of those strategic blunders that is self harming and so need to be called out. I think you are making this error. I think you are wrong about this. Moreover I think if you focus on things like language you are not being an effective advocate. You might be addressing a issue that you personally find upsetting (i.e. the use of language) but this is simply about you and your feelings rather than implementing any more pragmatic changes in society.

        None of this means I am disregarding your opinion or the views of autistic people in general. It simply means I think you are wrong. You can argue back and if you present a good case I promise you I will change my mind. But please refrain from the insults and negative assumptions about my motives.

        My story of how autism self advocates helped me change my opinions on autism is linked below.

        https://autisticbean.wordpress.com/2015/04/29/getting-on-the-right-path/

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        • I think I confused your views towards “self diagnosed” advocates with autistic people who were actually diagnosed. The language in your blog post was a bit confusing, and it come across as overwhelmingly questioning of the “autisticness” of those who disagreed with you, especially if you felt they were “SJWs”, which you are clearly very much against.

          Language strongly affects societal and cultural views. You say that language, which I am using that in the broad sense of all language pertaining to autism regarding autism as a burden, as solely negative, as a disease, as something that should be “cured”, does not affect employment. When I talk about language, I’m not just talking about whether you say autistic person or person with autism, although I do find it problematic from a subconscious perspective that “person with autism” attempts to separate autism from the person, which is something that I’m not sure anyone can actually do. I am actually autistic and I can’t tell you where I end and my autism begins because I was born autistic, I grew up as an autistic person, I experienced life as an autistic person. It is inherently a part of me. It is not something I carry around. I understand that many parents wish they could, to remove their child’s autism, but it’s not realistic.

          But, to reiterate my earlier point, language (in the broad sense) surrounding a marginalized group defines the experience of the people in that group. The fact that autistic people statistically struggle to find employment has a lot to do with how autism is viewed. The societal view sees autistic people as a burden because the majority of media presents the autism narrative as focused on the struggles and difficulties of raising an autistic person. This is only the first problematic factor in the narrative. The push in the last ten years to raise awareness of the seriousness of autism has simultaneously flooded the narrative with stories which elevate the negative and basically ignore any positives. It’s only recently that autistic self advocates and autistic advocates have started to fight this because it reinforces stigma. Non-autistic people see this but they don’t always seem to recognize how they are reinforcing it.

          Views toward autism are underwritten by how we discuss autism, how we present it, how we define the narrative. Don’t you think the commonly held view that most or all autistic people are “in their own world” and unaware of people around them, uncaring and disconnected affects the likelihood of autistic children receiving a good education? Don’t you see how it affects every part of autistic people’s lives and experiences, from education and jobs to self esteem and relationships with others.

          Try to keep in mind that when you see a self advocate passionately arguing to improve autistic experience, even if we do so in a somewhat abrasive manner, that we do so because it means everything to us. Because I want to see the next generation of autistic people and the generations after that be treated more like human beings, and less like a burden to humanity which needs to be cured.

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        • Also, just to be clear, language is only one of many things I talk about in my self advocacy. I have a Youtube series on everything from echolalia to anxiety disorders, sensory processing issues, replacing the puzzle piece metaphor with Pointillism, theory of mind, diet, misconceptions, and other subjects related to autism and my experiences with being diagnosed in my adulthood with A.S.D. .

          I’m also very involved on Twitter in connecting with and interacting with other autistic self advocates, non-autistic advocates, disability advocates, and work every day to dispel misinformation, stereotypes, stigma, and negativity. This is very important to me, not only because of my experiences, but because of how often I see other autistic people having similar negative experiences interacting with society. Every autistic person deserves better than how things are now, so I think it’s necessary that we have these conversations, even if they may be uncomfortable.

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  15. WONDERFUL, WONDERFUL POST! Totally agree.
    This is something I’ve thought about a great deal as one of my closest friends used to e one of the top autistic bloggers on earth and stopped because of all this sort of bickering…The main thing I’ve thought is that it comes out of pain…but can we not cause MORE pain where we have a chance to feel safe??
    Thanks and love,

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  16. I haven’t read entire article ( I have scanned through it will read fully when I have enough time) I am neither really anti or pro vaccine. I am pro giving parents the choice of combined mmr or single vaccines. My personal belief is that the combined vaccine affects certain susseptible children.

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  17. This has been an interesting read indeed. My G.P. agreed that I may be autistic, and display some at least of the characteristics. The G.P. acknowledged that they were not a mental health specialist though. The doctor pointed out that since I was past my teen years (by about forty five years) and am unemployed due to a knackered back, there was very little chance of being diagnosed one way or another. Whatever the real situation is, I have to agree, I’m definitely not weird. Even though ordinary (whatever that is) people seem to think I am.
    I would like to know what the situation is. Perhaps then I could find better ways to get on with others. I’m heartily sick and tired of being single, but I just can’t figure out what the game is. Sometimes I find myself being grateful I’m not one of those human beings. They are just too complicated.

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  18. I think a major problem between autistic people and parents with high support kids is a lot of the parents refuse to see anything good about their child’s autism. Those parents will dismiss the advice of autistic people and even shame autistic people for being happy to be autistic.

    Also, autistic people get sick of being dismissed or talked down to or told autism is no gift and don’t ever celebrate it. If you back a cat into a corner too much it’ll start to hiss and use its claws any time it sees people come close and there are autistic people who are the same way about being dismissed or told they’re broken.

    You’re right though. Both sides need to CHILL.

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  19. Yes – to all of it. Thank you for writing it!

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  20. As a fortysomething man with Aspergers, I have to say, this is a great article.

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  21. Thank you for this!!! My 10-year-old daughter was just diagnosed with autism and I can tell I’m going to love and appreciate your writing and perspective!

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  22. Why not just call autistic people/people with autism “special”? It is true, and it might convince the people who think vaccines cause autism to vaccinate their kids because they might think that autism is a good thing, which it is.

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    • Is this a good idea?

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      • Hi Pieter, sorry for the delayed reply!

        It’s a tricky one. Over here, the word “special” has been used so often to describe those with difficulties (e.g. “special needs”, “special education” etc, that I’m not sure it would have much of an impact.

        Calling us “awesome” would be great though. 😉

        Your name sounds very Dutch- do you love in Holland, by any chance? (If you do, your English is brilliant, by the way!)

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        • Ok. So just drop the words “autism” and “asperger syndrome” and replace them with “awesome” and “awesomeness syndrome”? Maybe this will FINALLY put an end to the vaccine debate. Also, no, I do not live in Holland, but I am partly Irish. I live in Michigan. Thank you for replying! I would also appreciate if you could reply to this. You don’t have to, though.

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          • Hi Pieter,
            Sadly I think it’ll take more than changing words to end the vaccine ‘debate’. Some people are committed to seeing autism as a bad thing, whichever words you use to describe it.
            What we need, in my opinion, is more education, more acceptance, and more of a focus on the strengths that being on the autism can give you. (Because let’s face it- despite the challenges we feel, being an Aspie is awesome too. 😉 )

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            • Do you think that changing the name might at least lessen the vaccine debate?

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              • Honestly I don’t think so. Some people are just too set in their ways, and to them it’s about “disease” or whatever, not words. :\ (Sorry for the late reply!)

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  23. Thank you for this site, it’s at least the most open thing I’ve read so far.

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    • Aww, thank you! 😀

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  24. Totally love this post and agree with everything you’ve written in it. I’ve alluded to this in my reviews of The A Word programme lately – lots moaning and saying it’s not realistic and doesn’t represent their lives – but then if it was closer to their stories, it would probably be less like ours… so what’s fair about that?! At least it’s giving some account of autism out there in mainstream media, better than nothing at all? But of course easier for me to say as bits of it have seemed similar to our experiences… anyhow, I agree with your post, am all for trying to accept everyone’s point of view and not be offended by anything.

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  25. Tricky subject. I’m on the “autistic” side, in term of wording, but i don’t mind if an autistic person, like me, uses “with autism”. Hey, their choice, they do what they want. I’ll explain why i use “autistic” (basically because i don’t see my autism as something separated from me, like a bag i could toss and abandon at every corner), but i won’t push the use on them. However, i won’t accept that a NT might try to force me to change my formulation with condescending sentences like “Oh, sweetie, you have to say “person with autism”, you know ? Silly you…”. I hate being belittled.

    On the Vaccines subject, it’s another matter. Refusing to vaccinate our children is dangerous, not only for them, but for other children. It’s a matter of life or death. I can’t understand how a parent might refuse to vaccinate his or her children because “oh, he might catch autism”. Worst of all, i don’t see how you can prefer your child to be dead than autistic. It’s… It’s so cruel that i don’t have the right words to describe how i feel about it. If you willingly say this sentence “It would be better if my child were dead than autistic”, then i don’t think you earn the right to be a parent. Worst, it’s the kind of thing that legitimate the murder of poor autistic kids.

    The “autism cure” is also a tricky subject. I don’t want one because i learned to accept myself as i am, with my meltdowns, my self-injury behavior, my stims and my “quirky” spirit, but i can get why autistic people would want it. Sometimes, it’s just too hard. But what’s hard, exactly ? What’s wrong ? Not us. The way society is shaped. Society is exclusive. Society is oppressive. I think Society needs a cure, not us. We need accommodations. But it’s easier to want a perfect NT child than to meet the needs of an autistic child, i guess…

    About the case of Julia, i didn’t came across any parent who might not appreciate her, so i was quite surprised. I think Julia is wonderful, but that her story would be better if it was written from her POV. Like this, it’s a good way to raise acceptance towards autism, among NTs. But for actually autistic kids, the lack of ressources is quite sad…

    Finally, it’s not that i don’t understand that “autism parents” might struggle. But damn, they don’t have the right to humiliate their children in public ! To post videos of their meltdown, of their anger issues, of their stims and finally turn the camera to themselves and say things like “You see how hard it is ?”… One day, i came across an article on Facebook and a mother have posted a picture of her daughter, covered in her own feces, painting herself as a brave angel doing everything for her broken child. It’s not right. It’s absolutely not right.

    Those parents are the same that invade our personal spaces (notably the “actuallyautistic” tag) and just deny our experiences because we only “have it mildly”. But boy, do they realize ? I mean… Maybe i didn’t know the same struggles as their child. But maybe i did. I’m a grownup woman. I learned coping techniques. My autistic side was beaten from me by humiliation and bad treatment by my classmates. I learned to fit in, but i sacrified my happiness in the process. Eh, i still don’t quite fit in. People notice that i’m “odd”. But my point is that i know what it’s like to be an autistic kid and i’m still willing to provide advices. Eh, i always answer with diplomacy to this kind of words. I love to educate NTs about autism, especially parents and young parents. But i hate to be dismissed solely on the fact that i have a job, that i can drive or stuff like that. I still have meltdowns. I still beat myself when i’m not okay. I know what it’s like to struggle as an autistic. Geez, it would be so easier if parents and autistic could associate themselves… Like, we teach them about autism, they give us clues and help us distinguish people who want good or bad for us…

    Long story short, i don’t agree with everything you have written, but i think it’s a good article and it was interesting to read.

    Ah, i almost forgot : Have you seen the A Word’s ending ? I’ve heard about it and it seems quite awful… If i’m not wrong, the parents say frankly that their son is dead in their eyes because he’s autistic. Urgh…

    (NB : Sorry if i made some mistakes, i’m french and my english is far from perfect)

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    • I could manage without my meltdowns, depression and self harm.
      Your English is far far better than my French

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    • Hi, thanks for the message (and sorry for the late reply!). Your English is so good that I never suspected you were French until the final sentence! 🙂

      I certainly didn’t get that impression from the ending of The A Word. At the end of the first episode, yes- it seemed kind of dehumanising in how they thought Joe’s autism was something to be mourned and ashamed of. It hurt a little to watch, but I had faith that the series would be about the journey. And for many parents, the journey DOES start with pessimism.
      The ending seems to be neither a good nor a bad ending. It’s a decent storyline, but the last episode is “Joe goes missing, later on he’s found.” They’re not quite at the “autism makes my child awesome” stage, but Joe is far better off because of the events of the series because at least he’s closer to being understood.

      Thanks again for sharing your insight. 🙂 I can empathise with a lot of it (especially the part where you say “I don’t see how you can prefer your child to be dead than autistic”. I often use that line myself!)
      Chris

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  1. Hey, autism community, can't we all just get along? - Stories About Autism - […] The author of the page, Chris,  also wrote an amazing article about this topic, which I highly recommend you…
  2. Autism Awareness Day At Sesame Place 2016 - Baby Magazine - […] A plea to the autism community, from one of your own […]
  3. Autistic person, or person with autism? | DART - […] for a person-first attitude which transcends choice of language.   And another influence is this heartfelt plea by Autistic Not…
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