Autism is not “difference;” why this matters from a parent’s perspective

Ever since I became aware of autism politics, I have been bombarded with the slogan that autism is not disability, it is difference; that disability is (primarily) a social construct, and that autism wouldn’t be considered or treated like a disability if we were just thought of it more like a difference instead. That there is nothing “wrong” with autism per se, it’s simply a different way of being.

The claim that autism is best thought of as difference, has to have this sort of strong meaning behind it to be meaningful at all. If all people meant was that we should call autism difference because autistic people are in some senses different, then the statement is trite and not in any way combating existing paradigms or attitudes (of course autism is a “difference,” no one would deny such a claim). No, for the statement to have any power or purpose, it has to be juxtaposed with the notion that there is otherwise something essentially negative or intrinsically disabling about autism; that it is a difference instead of being seen as *insert current attitude that you want to challenge and change* (ie, disability).

As someone who loves an autistic person (someone who is my very own flesh and blood), I am sympathetic to the aim of making autism appear more friendly, familiar, less frightening or alarming. I want people to see my son as just another fascinating and fantastic individual. But I do not like the rhetoric of simply recasting autism as a difference in the way I keep encountering that claim. The same part of me that wants my son to be accepted (the parenting part), also needs people to continue to think of it as a disability and not more-so a difference, and I feel that I need to say why, because I don’t think the reasons are well understood or often thought about by those who want the rhetoric to change. All the reasons I am going to go through come from the experience of parenting an autistic child (or, if you prefer, from parenting my autistic child, I do not presume to speak for any other parent).

I’m only going to go through three reasons for why I feel uncomfortable and dissatisfied with the “difference” rhetoric, the reasons that I think go underappreciated the most. There are plenty of other reasons that most people will already be familiar with and hardly need recapping (such as the harsh reality of the worst autism has to offer).

Reason number one: Autism is real. As a parent with an autistic child, I could not possibly enumerate the number the times I have had to confront and argue against the notion that autism is not a real condition. The arguments take these common forms: autism is simply an excuse for rudeness; or a made-up condition for overly paranoid and anxious parents; or a parent’s excuse for a badly behaved undisciplined child; or a parent’s way to throw people off the fact that their child’s problems are a pure product of abuse. So here’s the thing then: If you tell the already-doubting public that autism is just “difference,” you play into existing perceptions that it’s not a real or a serious condition; you reinforce for these people the idea that there is nothing unusual or particular about autism, it’s just the normal and predictable outcome of bad parenting, parental abuse, or a rude person’s decision to act like that (etc).

Oh sure, if you had a spare ten minutes of their uninterrupted attention, you might be able to make yourself better understood about how you do think it’s real, it’s just not as “bad” as people think it is. But the fact is the message is predominantly thrown around like a happy-clappy slogan, and to people who already think the worst of what autism “really” is, you’re not helping them to confront their ignorance or prejudices, you are more likely to be reinforcing them.

Reason one doesn’t matter to you, because you think the message won’t be misinterpreted or you for some reason don’t think that part of the public is worth targeting with the message of difference, OK. How about reason two then, which is closely related to reason one: The people who do think autism is a real condition, but only when it is severe enough to be obvious to anyone who meets the child for even ten minutes, and believe the rest of the growing number of autistics is mass misdiagnosis serving the desires of parents who want to jump on the trendy autism diagnosis wagon.

I wish these people were the joke they sound like, but they’re not. Their numbers are even higher than those who think autism isn’t a real condition at all (and those numbers are frightening enough). These are the people who conspiratorially whisper to me how clearly my own son has autism, but so many of the children they meet with the diagnosis don’t have it. Some of them don’t bother whispering; they shout it in blog form or vomit it all over any half-related comment discussion. Just a few days ago I read a blog post by parents lamenting the fact that so many parents these days seek out an autism diagnosis just because their child is different. That’s right, because their child is different, as in, talks a bit slower than other kids, is a bit eccentric, or plays with toys in an unusal manner. The particular blog post I’m referring to – which was not a stand-alone view by any means – proudly and loudly voiced the view that parents should just be more accepting of the differences among children, instead of rushing to label them with “autism.”

Let’s ignore the ignorance here; let’s ignore how hard it is to get an autism diagnosis, let’s ignore the strongly evidenced under-diagnosis going on, and let’s ignore the number of parents who refuse to seek or get a diagnosis confirmed even when those in the know plead with them to do it for the child’s own good. Let’s ignore all that, because my point is this: When you tell these people that hey they’re right, autism really is just difference, they too are reinforced in their hurtful views that parents of (comparatively mild) autistic kids just need to be more accepting of their children and stop labeling them with the latest trendy DSM output.

My mistake, you didn’t mean for those people to receive and misunderstand the “autism is difference” message either. Of course you didn’t. So let’s ignore them too, and go to reason number three.

Number three is services. As parents of autistic kids, we spend ridiculous sums of money and time pursuing a small pool of government funds and specialists, so our children have the best shot at an independent future. We fight to access what is supposedly ours by right. But accessing this pool of funds requires our children’s challenges to be seen as something negative and serious. If it’s just “difference,” then why bother pumping limited resources into helping them to “change;” parents should just accept their child, right? These children don’t need speech therapists, occupational therapists, physiotherapists, they just need acceptance and love. Hey, I was all accepting and loving of my non-toilet-trained, violent, self-harming young son, guess what, it didn’t improve his life. My acceptance and love of him was a constant, but what made the difference was all the therapists we were only able to access because his problems were seen as serious and negative. The very fact that I can sit around and read and debate about attitudes towards autism, is because my son “got better,” his autistic symptoms got so much better through therapies and interventions that I have the luxury to now wax lyrical about how it’s really just difference…

And there’s the rub. Because you know I do believe autism is best thought of as difference. I want the world and my friends and family to understand that my son is just another human being who operates a bit differently in the world than they are used to. But as long as I keep coming against so many people who (1) think autism is a fake condition, (2) that parents who get an autism diagnosis for non-severe kids are just non-accepting of their children, and (3) that autistic children (and adults) need a change in attitude rather than professional help to make their own lives easier (and believe me far too many people in government ministries that control these sorts of resources do not understand the condition or its challenges), then I’m not going to go around shouting slogans about how autism is just difference. (Um, except that time I did it on Facebook on Autism Awareness Day, but even I make errors of judgment sometimes, I know, shocker.)

Those who have damaging, dangerous and hateful views of autistics, worry me a heck of a lot more, than gently shaping the minds and attitudes of those who already understand the intricacies of the autism debates. In this messy political autism world of ours we can debate terminology and argue about “privilege” and whether to use the phrase “special needs,” and “normal,” and “inspiration porn,” and whether the kid hitting his head into the concrete ground “is autistic” or “has autism.” The facts are my son has a disability called autism, he is not “just different,” he is the most amazing person I have ever had the pleasure of knowing (he would shock you with his brilliance and insights, this kid is incredible), but he has a disability, a real good-to-god disability, and if that statement offends or upsets you, you should check your own attitudes towards the disabled, because in my books disability doesn’t make him any less of a human being. It’s fact, not a judgment; check your own prejudices before you tell me that you don’t like my words.

Or whatever.

My point? I don’t like the “autism is just difference” message, and I want to help people understand why. Keep using it if you like, but understand why I and others might not jump on that band-wagon, and try to think about our reasons for not doing so before you attack us for being closed-minded. If I have failed to help you to understand such reasons, at least I did it in spectacular fashion 🙂

The post is finished, you can stop reading now, unless you wish to comment. Here’s the thing dear readers, recently I have had four autism blogging friends tell me or the world that they are afraid to speak their minds because autism politics have become so hateful and personal. The point and value of dialogue and reaching mutual understanding has been sacrificed to a loud obnoxious vitriolic personal bashing of anyone who dares to use the wrong words or to speak what they have experienced (their truths).

I too have been censoring myself, because to speak honestly these days is to offer your sanity and spare hours to strangers who would sooner launch personal attacks than deal with the arguments at hand.

So know this; my blog is not your platform to attack your mythical category of “neurotypical” parents (I am nowhere near “neurotypical” mind you, but that will be a blog post in the near future). And if you cannot understand what I have said, you do not have license to pretend I said something completely different and then attack me for that. To save me from such time-sucking counter-ramblings, only moderated comments will be let through on this post. That means you get to disagree with me, if you do it politely and on topic. If you can’t manage that, this is not the blog for you, go hate me elsewhere.

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12 Responses to Autism is not “difference;” why this matters from a parent’s perspective

  1. Matty Angel says:

    Thank you for sharing. Its to much for me to read in one go, but I think its important to share.

  2. Tsara says:

    Thank-you so much for this! I’ve spent plenty of time chatting with my youngest brother about why he had an honest-to-goodness huge struggle, much harder than his peers, when it came to learning to speak, keeping his lips off heaters, seeing round shaped cars without screaming, keeping a job, paying bills and doing math, if autism was just a difference and not a disability. He is more comfortable with autism being a disability.

    My autistic brothers were very challenged. They were also fantastic and hard working and eye opening and exhausting and helpful and adorable! They are valuable people who deserve to be seen as such!

    I thank you Linda for doing such an excellent job of explaining that it is not bad to see our loved ones disabilities, nor is it hurtful to say so. The hurt comes in judging disabilities themselves as something bad or pitiful, something to be afraid of saying comfortably.

    There is prejudice in being unwilling to say that someone has a disability.

    And, admittedly, I also want the world to see my autistic loved ones (and I have many!) as different, not less. And I want them to see themselves that way. I also want them to know that their labels or challenges don’t define them, which is easier to teach to when we are willing to talk about the disability comfortably.

    I want everyone to see themselves as different, not less. I want everyone to be accepted and to be seen as valuable. I want it badly, but am also not willing to jump on the different, not less bandwagon.

    Though I do believe it in my own way, which is different, not less.
    Hugs!!

  3. Sharon says:

    Hell yes, to all the above. Same applies to the trite “we are all on the spectrum”. No we are not.

  4. Wife of Jack says:

    Our son is “different” all right. Different in ways that present real challenges to himself, his parents and his teachers. He can’t sit still on the mat. At all. 12 of his peers can perfectly. He is still in nappies at age five. Just different? Well tell that to us, the school and hospital that has to allocate resources and time to that particular problem. His teachers have to manage his classroom behavior in unique and creative ways above and beyond what the other children require. Developmentally he is operating at least 12 months behind in many areas, in others he is just fine. A patchwork quilt of functioning and social abilities.

    His amazing growth and progress continues but the work that has gone on to make that happen has only occurred because of the recognition of his DISABILITY. Enough differences to equal a disability.

    All of us are different. More than your average helping of different = Disability.
    My goal for his adult years is for him to achieve “just different” That would be awesome. Quirky but functional. Happy days if that were the case. For now I hope there is enough normality to enable friendships that last beyond school hours.

    Fluffy feel good slogans help no one, they do more harm than good. (I suspect they have all been written by well meaning teenagers to be honest.) A bit of stomach and reality is needed in presentation. It’s a real condition requiring real expertise and real allocations of resources.
    Autism is messy, a trite sound bite does nothing but reinforce what the viewer already believes.

    I hope one day an in depth New Zealand documentary will be made featuring many different aspects of the spectrum and how it impacts on a good cross section of families and individuals.

  5. Hilary Stace says:

    I prefer to see autism as an inclusive space with room for everyone. Dana Lee Baker (2011) talks about the four agendas of disability policy (including autism): cause, care, cure and celebration. Thomas Insel of the IAAC and the Director of the US NIMH recently blogged about the Four Kingdoms of autism: illness, identity, injury and insight http://www.nimh.nih.gov/about/director/2013/the-four-kingdoms-of-autism.shtml. However, you define them, people are likely to travel between these areas over time.

  6. quintorpian says:

    Thank you for yet another well articulated blog post on this complex topic. They are always good to read and think about. I’m sad to think there are those out there in web-land who would judge you or criticise you harshly. They are all very valid points you make. I’m glad you can moderate your blog.

    I think i understand why it might make sense to reject the framing of autism as purely ‘difference’ and stick to ‘disability’. For me though, these differences are basically semantical, ie they are different words used to refer to the same things, and in any given situation the words chosen can make a big difference to how we will be understood. So they need to be used strategically to suit the context.

    Thus i use the word ‘disabiity’ with people who react emotively to that word and from whom i need something (eg government agencies), and with also people who are reasonably sophisticated in their thinking to see the concept of disability is not just about the impaired individual but also about society and how it views and defines difference. And i use ‘difference’ when i see the potential for other people tripping up on the disability word and going off into a host of unuseful directions like pity or hostility. If someone wants to judge me about my parenting skills when they see my son acting up, i am happy to debate it using either term. I prefer to explain my understanding of the specific reason for his behaviour eg sensory sensitivity etc rather than just use the word ‘autistic’ because to me that helps educate people a bit more about why people behave the way they do. Even non-autistic people sometimes do strange things for similar reasons.

    Despite the arguments for autism being ‘real’, a definitive definition of what it is, as well as the boundaries of who is and who is not on the autism spectrum remain unclear to this day. There are people with diagnoses that are disputed by others, there are people without a dx despite having clear characteristics of autism. There are people who fail to be diagnosed by one clinician and yet are diagnosed with no difficulty by another (this was the case with my son). Clinicians, parents, or autistics themselves make declarations about ‘what autism is’ and make statements about such things as ‘all autistic people lack empathy or need strict routines etc’ while this is clearly not the case. Plus there is undoubtedly substance to the argument for the social underpinnings of disability (ie made by society not resting purely in individual).

    At home, my 11-year old son is not keen in viewing himself as having a ‘disorder’ and so we talk about autism in mostly a neutral way, not specifically about difficulties and sometimes about the positive interesting aspects. But also about what disability is and how what someone might see as disability (eg dyslexia) can sometimes be viewed as just thinking in a different not worse way. It seems important that he can embrace himself with a neutral / positive frame first and foremost, and grow into the complexity of his own identity, including his very real difficulties, in a way that works best for him. If wants to think of himself as having a disability then i will back him all the way, but if he wants to resist that, then i will just help him overcome specific issues as they come up without getting too global about it.

    In the end I could say i find any argument that says ‘autism is this’ or ‘autism is that’ or ‘we should do this’ or ‘we should do that’ as too simple and confining and even excluding for those who do not feel well described in that moment. Autism, what it is and how to talk about it is SOOOO complex. Let’s celebrate that and enjoy teasing out all the complicated little threads.

  7. nostromo says:

    My six year old cannot speak and is still in nappies. His Autism is much more disability than difference to me, and Im fairly sure anyone else wiping his bottom feels the same way!

  8. David says:

    My three year-old daughter hasn’t gotten a formal diagnoses for autism but she’s done poorly on the tests and our doctor referred us to a autism center for further examination. I wish autism was a big fake, an example of a modern mass hysteria or that my kid was just stubborn and silly. I don’t get all the politics involved and all the code words that come with the dreaded “a” word. It reminds me how years ago people didn’t like to say the word “cancer” or that term “pregnant” couldn’t be uttered on TV. I couldn’t find any “political diseases” with an Internet search but I’m thinking rampant obesity and AIDS (20 years ago) may fit into that category. People with these diseases aren’t or weren’t accepted because they were thought to have a hand in their own plight. More importantly we’re talking about who pays to treat all these people with illnesses that others think is no big deal or they can be cured with greater willpower. My daughter can’t speak beyond some short, fragmented sentences or some memorized phrases so it’s hard to know what she’s going through. Her daycare teachers told her “Don’t be a zombie” and “You’re a disgusting girl”. She picks up some words so I do get a little feedback which is at least an honest assessment of how my kid is seen by others. I wish she was just different and not dragging an invisible ball and chain slowing her development beyond whatever the normal range is. Yeah, it can be tough to raising average kids but when others can’t see the problem your kid has and you can’t explain it yourself very well, it’s going to lead to misunderstandings. I can’t go around proclaiming how great my daughter is right now when I’m always dreading her future like she’s got some decades long fatal disease. We all eventually die but it’s the quality of life between the womb and the tomb that makes all the difference. What really hurts is already thinking about how limited her life may be years before she’s set foot in a standard classroom. Other parents muse about how their precious darlings could be anything their hearts desire while I’m wondering if my kid will just be somebody who can at least fit in somewhere in society. In the meantime we try to maintain short-term goals and treat any and every teachable moment like the golden 10 minutes of clarity the way emergency medical personnel treat patients during the first “golden hour” of their medical care. I apologize for this rant as I’m going through stages 2,3 and 4 of the stages of grief: anger, bargaining and depression.

    • Please don’t feel you need to apologise David, I completely understand what you’re going through and I am fully accepting of the reality and importance of the grieving process (even though that gets attacked in the autism world too). My son was severely autistic at the age of 3 too, largely non-verbal, violent to himself and others, it was a miserable and distressing time for us and him. Now, at 7, he has started at a mainstream school (he was in a special needs school for two years and that’s where we thought he’d always be), is verbal, quite social, and a lot happier, and no longer violent to anyone, but our path is a rare one, not everyone ends up where we are and I acknowledge and accept that too.

      Thank you for your honest and thoughtful comment, your thoughts on how diseases are politicised and comparisons to other conditions also blamed on the sufferers, was quite insightful. I know how hard it is to find the time to share thoughts and experiences when you have the care of a disabled child, so I always appreciate what it takes to make the time to comment. Wishing you all the best.

  9. ec says:

    Autism politics have been hateful for as long as I have known them (12 plus years) and undoubtedly long before that too. I don’t think they have got worse specifically recently. Also, I feel a lot of the shouting is done by the newly diagnosed, and parents of the newly diagnosed. Views moderate over time. I know mine did.

    I use the phrase ‘Autism is a disability AND a difference AND a gift’. Some things will fit more squarely into one of those categories- it’s OK to have things one struggles with. There’s no doubt that having autism can be extremely disabling. Not just for the autist either- it is hard for me to see smearing as anything other than bloody horrible, even though he hasn’t done it for years, for example!

  10. Lisa says:

    Thank you for your post. Lots to think about here for this parent of 2 autistic daughters who are still non-verbal and in diapers at 4-1/2. Thanks for braving the negative comments and putting out your thoughts, I know I need to read them.

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