Why we’re not all on the autism spectum

48:365 World Autism Awareness Day

Image by mattbeckwith via Flickr

I just read a post under the irritating title of “Why we’re all on the Autism Spectrum.” I went in expecting something a lot worse than what I found: I thought I was going to encounter someone trying to claim we’re all actually on the autism spectrum to some extent. The post came close to such a claim, but just managed to swerve away from such an extreme view, by rewriting the spectrum to apply to all of humanity – that all people are on a spectrum just like other spectrums (their example being sexuality). In making the claim in this manner, the poster makes a break from the actual meaning of the autism spectrum, allowing her to then make the otherwise factually incorrect claim that we’re all really on the spectrum. But that subtle shift, and the title of the post, are still going to mislead and confuse a lot of people. (Indeed, it wasn’t clear that the author understood the subtle but important shift she made.)

The reason this confusion, and the claim we’re all on the spectrum, matters, is because of the existing immense confusions and misinformation that abounds about autism.

There are still many people who claim autism is just made up; that it’s just extreme naughtiness or extreme personalities, and nothing special or noteworthy. Basically that parents need to be stricter and adults need to learn to control themselves, and both groups of people need to stop looking to blame their problems and shortfalls on some mythical disorder. You find the same rhetoric about ODD and ADHD. This thinking shifts autism away from being an identifiable disorder, and places it instead on the completely “normal” continuum of humanity: “Nothing wrong here, just a bunch of misfits disowning their own decisions and not facing up to their problems.”

The vast majority of the public does not understand what is meant by the autism spectrum. They usually know of autism, and Aspergers, and that’s it. Many do not realise that Aspergers is considered to be part of the autism spectrum (I certainly didn’t three years ago). They’ve never heard of PDD-NOS or Retts or CDD. Educating the public about the existence and meaning of the autism spectrum is quite a challenge. There are clinical facts involved here: Some conditions are part of the autism spectrum, some are not. Some people are on the autism spectrum, some are not. If we rewrite “autism spectrum” so that it no longer matches or reflects the clinical definitions, we create further confusions and doubts about its very existence.

The arguments that the spectrum isn’t accurate enough or needs rewriting, needs to be had openly and clearly; in the way that is currently happening surrounding the DSM-5. There is nothing wrong with that discussion, and indeed in order to even have that discussion, we must first acknowledge and use the existing definitions (else what would you be arguing to change).

I do appreciate what people are trying to achieve when they rewrite and loosen the edges of the spectrum; they’re trying to let everyone know that autism isn’t so scary, they’re just like everyone else. They’re often trying to get people to think of autism as less like a disability, and more like difference. Perhaps also trying to grow the community and sense of inclusion. Increase acceptance. Even simply trying to raise awareness (though rewriting what one should be “aware of” in the process).

I don’t want to paint an overly negative picture of the people – like that well-meaning and clearly quite lovely poster – who genuinely think they’re doing the right thing for the future of autistic people. I know they’re not evil (though I also know of some people who would consider what was written, to be evil because of its efforts to change attitudes towards autism). I just think it’s incredibly important to not add further confusion to a condition that so many people already misunderstand and even deny. I think there is much more harm than good done, in the suggestion that autism is something we all have to differing extents.

We are only all on the autism spectrum, if you completely redefine what is meant by the autism spectrum.

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20 Responses to Why we’re not all on the autism spectum

  1. Sharon says:

    This a good post. Both my hubby and I score highly on the BAP, and there’s no doubt we both have some issues but there’s no way either of us are disabled by our traits. Even if they do impede our social skills. I look at my son (pdd-nos) and it is quite clear his brain works differently. His language development, his social interations, his need to control his environment, anxiety are intrinsic aspects of his ASD, they are beyond quirks. For me this is the line between those who are and those who are not on the spectrum, whether or not the characteristics are disabling in any way, even if the individual learns coping strategies to get by, or pass for ‘normal’ enough.
    I suppose then we enter the murky terrritory of disability defintions….

    • Indeed. These aren’t easy questions with easy answers (though the way you’re approaching the question does make sense, and does match the direction the newer definition of autism appears to be heading in). It is because these are tricky questions that it’s all the more important to be clear about the usage of terms with existing clinical meaning and application, otherwise we’re all just cross-talking and make no head-way.

  2. mamafog says:

    I personally think that we all do have traits or qualities that could be considered on the spectrum. That is different than everyone has autism.

    I don’t see how it harms me and my family if a blogger decides she has autism based on an online test or otherwise. I don’t know her personally, it is not my place to judge that she is widening the spectrum by including herself on it. I would guess that some parents of children with autism would qualify for an actual diagnosis, but most would not. I don’t get your use of the word evil, but I feel that word should be reserved for religion and Mike Myers movies.

    I’m sure I don’t need to remind you that autism is a collection of symptoms. I don’t think acknowledging this in any way negates or confuses actual autism. I think it is these qualities that can help some us to understand our kids, and also that leads to the animosity and disagreement in the autism community.

    When I saw the title of your post I thought you were going to be writing about Michael Stilman. He has written (I’m recalling from memory, don’t own the book) that someday in the future the entire population will have autism.

    • Hi mamafog,

      With respect, you have misunderstood my post (and apparently hers aswell).

      “I don’t see how it harms me and my family if a blogger decides she has autism based on an online test or otherwise. I don’t know her personally, it is not my place to judge that she is widening the spectrum by including herself on it.”

      That was not what she was talking about when she said we are all on the spectrum, nor was it what I was attacking.

      I don’t mind people taking online tests and thereby discovering they have things called “autistic traits” and similar, that fall short of actual autism. If the blogger had stopped there, there would have been little to complain about. The fact is she went further and claimed that we all are on some “spectrum” of autism, completely leaving behind the fact that the “autism spectrum” has an actual and functional meaning.

      Having autistic traits does not mean you are on the autism spectrum; that is not what is meant by the autism spectrum, it is a wider use of the word “spectrum” completely apart from the actual meaning of autism spectrum, and as I discussed in my post, creates a lot of problems for the existing confusions and negative attitudes towards autism. To argue this point further I’d just end up restating my entire post. I’m not sure how to get my point across any clearer. Basically I’m saying there is an actual meaning of “autism spectrum”, that is completely different from “we’re all a little autistic” (which is how the poster used it, and which I would add, is a separate claim that I would also attack as unhelpful and misleading, but not the one I attacked in this post).

      • mamafog says:

        I don’t think I misunderstood either of you, but I wasn’t clear so I’ll try again. Sometimes I can see both sides of an issue, I know it is kind of annoying. I don’t mean any disrespect. I appreciate the quality of discussion that your blog promotes.

        I think you are saying that you think that the term autism spectrum in any variation should only be used to refer to someone with an actual diagnosis of autism. I think you are also saying that phrases like “we are all on the spectrum” can confuse the general public about the actual definition of autism.

        The blogger you linked to did discuss specific traits of autism, and define them as so, but she also titles her post “we are all on the spectrum” and discussed why she thought so.

        I don’t agree with that statement, but it doesn’t bother me. A phrase like we’re all a little autistic is inaccurate in the strict definition of the term, but there is a grain of truth there. I can see how saying that could confuse people, but I could also see how it could add an element of humanity to someone’s understanding.

        I have not had anyone doubt my DD’s diagnosis, so maybe that colors my experience. From my perspective, it seemed like (especially in the beginning) to some people, even professionals, that my daughter and others like her were less than human. Maybe reading a sensationalist statement like “we are all on the autism spectrum” would help those people consider that we all have spectrum traits, and perhaps they might eventually find some understanding that autism, while a disability is still part of the human condition. I’m sure that wasn’t the intent, and I would not use the statement. It is just what your post and hers made me think.

      • Hi again mamafog,

        “I think you are saying that you think that the term autism spectrum in any variation should only be used to refer to someone with an actual diagnosis of autism. ”

        No, that’s not what I’m saying. I’m glad you came back and clarified what you think I’m saying so I have the chance to clarify:

        My point is that “autism spectrum” has an actual meaning. It is not some vague phrase that people can simply co-opt to whatever agenda or attitude they might be interested in promoting. “Autism spectrum” is the term for the rather wide range of autism disorders (PDD-NOS, AS, autism, CDD, Retts). There is already huge variation in that spectrum, and already a lot of vagueness about whether certain individuals fit within those headers.

        Taking the term “spectrum” and extending it to mean something else entirely (autistic traits, anxities, compulsions, etc, all the way down to tiny tendencies in every human being) is not what “autism spectrum” means, and pretending it is greatly confuses an already confused public, with negative consequences. If someone wants to talk about “autistic traits” then they should talk about “autistic traits” and argue in turn (if they believe it) that everyone has such traits. Fine, whatever. But to say that that is interchangable with “autism spectrum” is quite simply, incorrect, and misleading.

        And let me be very very clear: I do NOT think that for someone to actually be autistic, that they need a confirmed diagnosis. That was not even something I implied, I am unclear where you got that from. Of course – without any doubt – people are autistic even though they have not been and may never want to be diagnosed. To say otherwise, is quite ridiculous. BUT, autism is a defined thing; someone is not “autistic” totally independently of how the term is defined; someone can’t just make up a new definition for autism and then meaningfully claim they are autistic (that is equally as ridiculous). It has an actual meaning. A meaning with history, sure, but a meaning none the less. As I’ve said more than once, if people want to debate what autism should and should not include at the definitional level, that is absolutely fine, and is exactly what is going on currently because of the DSM-5. But that was not the discussion that person was even attempting to make.

        I hope that clarifies the points I was trying to make.

  3. Jennifer says:

    I have always wondered where my daughter falls. She is considered to have a pretty extreme version of sensory processing disorder but she could always speak very well and very early. Symptoms were extreme aversion to sound, touch, movement, changes in routine, lining things up, etc. She has always been highly verbal, began writing at three but couldn’t understand a joke and couldn’t tolerate misnomers… ex. if you called her jacket a coat, she would cry for up to half an hour. She has trouble maintaining eye contact. She is doing great now after 13 months of intensive OT and one session of AIT as well as my behavioral training techniques with her. I don’t know where the spectrum begins and ends, but my daughter is/was certainly different. You can read about her if you are interested at http://babyminding.com/2010/10/25/the-special-needs-child-jacquelyns-story/

    • Thanks for sharing your story Jennifer.

      There are definitely problems with figuring out the correct diagnosis of people who are not squarely in the existing PDD/spectrum categories. That is why I’m quite happy to see the suggested changes in the upcoming DSM-5 which aims to clarify “autism”, tidy up surrounding related categories, and even “invent” (not an ideal word here) new conditions to try to capture children like your daughter. It’s quite an exciting (and for some people, understandably very stressful) time to be involved in the world of autism.

      I am very glad that your daughter got the help she needed and has responded so well to it; regardless of labels, that is what will always matter the most.

      All the best.

  4. Aspergirl Maybe says:

    Great post. This makes me think of situations when you share what your child is doing or not doing and another person says something along the lines of how all kids do that, etc, etc.

    The point is not that everybody does these things – after all, we are all humans – but that the things a person with autism is doing (or not doing) are impairing their ability to function in the world around them. Someone once said to me that the most important word in the diagnostic criteria is “qualitative” and I tend to agree with that statement.

    The danger created by blog posts such as the one you are referencing is that going down that path means we won’t help people who need help because we don’t acknowledge the very real difficulties they are experiencing that need to be addressed, whether by accommodations or remediation. After all, how many parents have been told by their child’s pediatrician that there is nothing to worry about when the parent knows there is something different about their child that requires attention.

    I am speaking from the perspective of a parent rather than personally since I do not have an official diagnosis (yet, anyway), although I am realizing more and more how much confusion and anxiety I have lived with all of my life and how lucky I was to make it to where I am today.

  5. KWombles says:

    Interesting post and discussion. I’ve seen other bloggers/people argue that we are all on the autism spectrum, which can be infuriating. If one wants to talk that we all are diverse people with varying traits, that’s one thing. We all fall under a personality spectrum that’s relatively well identified with the NEO-PI-R, but we are not all on the autism spectrum. We may have varying levels of personality traits that may be associated at the extreme end with autism, but that does not make us on the autism spectrum.

    • Sharon says:

      This comment reminds me that I also posted a while back that we are all on a the spectrum to some degree (Surfing the Spectrum) after reading an article that I think was by Simon Baron Cohen. Hahaha I had completely forgotten, I might have to do a follow up post…

      • lol! I sometimes read back through my early posts and see something I wasn’t quite right about, or something I have since changed my mind about. I think we all have those bits and pieces hanging about. I think it’s a good idea to leave them as is – both because its part of a learning process and to document what we used to think and why – but yeah it does make sense to write new posts to clarify or update now and then. It’s part of why I try not to get too caught up in the “person X said XYZ two years ago”; people and views change. I’m more interested in knowing what they think now, and why. That’s part of the beauty of blogging 🙂

  6. Rachel says:

    I agree with you 100%.

    I wonder whether saying “We are all on the autism spectrum” was a way for the writer to defend against the stigmatizing effect of being on the spectrum. For people who grew up without a diagnosis and considered themselves regular folk, ending up a member of a misunderstood and stigmatized minority can be very difficult. It has been for me. So perhaps she just wanted to figuratively bring everyone in?

    I don’t think that’s the way to go. It’s pretty clear that lots of people are not on the spectrum, despite having traits in common with us. The difference is the number and intensity of the traits and the difficulties they pose. And learning to adapt to those difficulties and live full, meaningful lives does not in any way make us less autistic. It’s the internal experience that matters. I’ve adapted quite well, but it’s the need for my many adaptations that’s most telling. Most people do not need to brainstorm strategies to go to the grocery store or the post office and come home having enjoyed the experience.

    I’m all for defining the spectrum to encompass a wider variety of experiences; there is a great deal about autism theory that is just plain wrong and needs to be rewritten with a greater degree of complexity. But I’m not for defining the meaning of the autism spectrum out of existence altogether.

  7. Pingback: “I know of nobo… | ASB Class Blog: Autism and Education

  8. Reblogged this on Planet Autism Blog and commented:
    I find it unbearable when people say “We are all on the autistic spectrum” because it’s just not true. So I was glad to see your post.

  9. Thanks for a great article. I was told only yesterday, when I was explaining autism and Asperger’s, that we all fall on the spectrum. I corrected the person, and was basically told I was wrong. I’m trying to campaign for awareness and I am falling flat. I am exhausted with the ignorance and I don’t really know what else to do.

    • Hi Tammy, thanks for your comment. Please don’t give up on your efforts to raise awareness and understanding, it’s such an important task. If you’re feeling under-appreciated and overwhelmed, consider giving yourself a little mental break before you resume your valuable work, or surround yourself with a supportive community of people with your same passion to reinvigorate you and give you a sounding-board when things get you down. Keep up the good work 🙂

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