Off the Spectrum

Graphic describing a better metaphor than the Autism Spectrum: The Autistic Landscape

The use of the term “Autism Spectrum” is misleading. It gives the impression that there is a single scale by which you can classify every Autistic person. This scale is used for diagnosis. In fact in the latest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) all of Autism is placed in this spectrum to ease the diagnostic task.

Diagnosis, in many cases, has value. I myself have benefited from it. But there is a danger in using this oversimplification, especially when it spreads beyond the bounds of diagnosis. It leaves the impression that every Autistic person can be characterized by where they stand — a single position — on this spectrum. It makes Autism a single thing. It allows for the question, “How Autistic are you?”

There are so many dimensions to Autistic people that a single spectrum cannot contain them. There are people who are left-handed and Autistic. There are musicians, swimmers, chess-players, politicians, mountain climbers, CEOs, stockbrokers, cowboys, programmers, fashion models, polar explorers and so much more. There are also Autistic people confronting fierce challenges to make it through each day. No one of these people is higher or lower than the other, measured on a single scale. Each is different. There are common traits, and each Autistic person expresses them to different degrees, if at all, along with an amalgam of other attributes.

I am not throwing the baby out with the bathwater. There are diagnostic criteria that can be used to make sure that every person has access to all the support they need. Categories are indispensable for many human activities (see Boundary Issues). But it is a mistake to take one measure invented for this purpose and extrapolate it to represent the reality of a universe filled with Autistic individuals. I urge you to appreciate the complexity that is Autism. Explore the Autistic Landscape.

Feel free to share this infographic image or the PDF file it links to.

16 Responses to Off the Spectrum

  1. Jim
    Jim August 13, 2016 at 4:41 pm #

    When I originally posted this infographic page a week ago I forgot to enable comments, so the first few thousand people who viewed it didn’t have the chance to leave comments. For me, that is an opportunity permanently lost. I regret it. I also apologize to anyone who wished to leave a comment. Of course, I would be fortunate if more than a handful of those thousands ever see this apology, given that 93% of visitors here are first-timers.

  2. Jim
    Jim August 13, 2016 at 4:47 pm #

    On the plus side, I was grateful to see the infographic used and referenced on the Anonymously Autistic blog.

    I especially related to one statement there:
    “People say I am high functioning because I have well developed coping mechanisms which basically means I keep all my suffering to myself to make Neurotypical people feel comfortable. Because I can pass for ‘normal’ blend in and be one of ‘them’ I must be high functioning.”

    Incidentally, it took me more than half a century to figure out how to smile for a photograph. Why do I mention that? Read the blog post on Anonymously Autistic!

  3. Anonymous August 15, 2016 at 5:03 pm #

    My son and I am both on the spectrum. We are two different people living with the same disorder which effects us differently. I would have never known what was wrong with me if my son wasnt born with autism. I believe I have spent my life mentally ill because of the challenges autism brings. I think sensory issues effects me the most. This is true for my son as well. The difference is how we cope when over stimulated. He avoids,shuts down. I become frazzled,pyschotic so to speak. I guess this is called having a melt down.Either way it causes problems in every area of my life. We both have a fantastic memory of past situations,but when it comes to following directions to complete a task we fail miserably. It doesnt matter how many times I have made mac n cheese I still have to look at the box three or four times while making it to get it made. I can tell you who was in my fourth grade class and where everybody sat but I cant tell you how to make mac n cheese. I was called the manequin in high school because I didnt talk and never smiled.But I talked and talked to my grampa after school. My son does the samr thing he talks so much to me that I can become over stimulated really quick. My son has endured more than he should in the educational setting simply because staff refuse to see him as having autism. I think they would see it if he had a normal mother because when they look at me all they see is some single white trash mentally ill drug addict(even though Im in recovery) I go to the meetings I take him to doctors I am very active in advocating for my son and his needs but alaways it comes down to they are the professionals they have the title. I just have a label attached to me. My son was diagnoised at 18months,he recieved ABA therapy.occupational and speech therapy he went early special education he was 23months old. My son recieved all these services and that is why its hard for others to see the autism. But it is there and it limits his ability in some areas and autism does not go away. This year a judge sent my son away for truancy. Even though the school knew extreme anxiety and extreme depression was the cause. The judge asked my son if he had anything to say and of course my child sat with his head down wouldnt look at judge. The judge got angry and placed him in a group home 50 miles away. The pedetrician and psychatrist wrote the judge the very same day asking him to reconsider explaining autism and the damaging effects this would cause. There was no response from the judge. I did get my child back two weeks later,but my child is trumatized by the whole thing. In 2010 my son had a rare auto immune desiese H.S.P The hospital staff did not believe he had autism and after 2months of being in and out of hospital I was blamed. I was accused of munchysy by proxi. Thank God when I took him to the Mayo clinic thoes doctors cleared me of any wrong doing and my child got better. My point is no one can see my autism and my child pays the price.

    • Jim
      Jim August 15, 2016 at 7:06 pm #

      That’s quite a story. It is clear you both have struggled so much and continue to do so. I hope that, besides the services and support that might be available to you locally — I wish I knew enough to help you there — you can connect to other people on the landscape. There are so many here and other places online. Many people I have met have been so helpful to me. It isn’t always direct help, but just hearing the experience of others has helped my understanding, has helped me cope. I know it is feeble, but I do wish the best possible for you.

      • Anonymous February 19, 2018 at 12:36 pm #

        you are writing my story. if it wasn’t for my son I would have never know I was autistic. I always wonder why I was different.

    • Anonymous August 16, 2016 at 10:55 am #

      I really appreciate your post I have struggled like you and I also didn’t learn I was autistic until my autistic son was in his late twenties. I the more we talk about it the more we learn.

      • Anonymous August 17, 2016 at 2:17 pm #

        I wish others could see my autism. If there was an image to show autistic brains compared to others without autism then I could prove it to myself and others. If pictures could show how heightened my senses are,so heightened I become over stimulated quick. This over stimulation would explain why I may behave oddly or mentally ill or on drugs.I moved in with my granparents when I was eight and I remember when any one asked mr Why do you live with them I would say Because its quiet.Memories always begins with an aroma I see the picture of the past and it comes to life as soon as the aroma fills my brain.If I could prove to myself I have autism then I wouldnt fill like such a failure and I wouldnt blame myself for all the times I tried but failed. If I knew 100 percent I have autism then my life would be a success;because nobody has ever heard of an autistic person living in the world I lived in and the fact that I got out of that world would be a victory for me if infact I am autistic.I live in a small town and have found that even bigger cities dont like assessing adults for autism. I have taken tests and my scores falls with in autism range;but it isnt enough for me I want to know 100 percent

    • Ty Becker September 3, 2016 at 6:05 pm #

      You should share you history on you tube or somewhere. You are an inspiration for many parents needing some light

      • Jim
        Jim September 3, 2016 at 7:36 pm #

        Thank you, Ty. I have video recordings of a number of talks that I have given to various groups, where I discuss my history. It would take some production work to make it presentable, but I may do as you suggest.

    • Daniela Hemoto September 3, 2016 at 6:12 pm #

      Hi my name is Daniela, I have only one thing to say:
      Please share your experience with the world, you will help people throught everything, could be a chanel on YouTube either a book.
      The world need to know.

      • Jim
        Jim September 3, 2016 at 7:38 pm #

        Hi Daniela. You are very kind. With encouragement such as yours, who knows? I might just end up doing something like that.

  4. Anonymous September 8, 2016 at 7:57 am #

    I think you make very good points and you make them very well – about attempts to ‘measure’ and classify human beings place individuals along a horizontal linear scale. There is some rationale for doing this where treatment, support and benefits are assessed by large organisations. But this approach does expand the general consciousness.
    I have forwarded your article to someone who is writing about gender as I feel your thoughts are relevant to this area also.

    • Jim
      Jim September 8, 2016 at 12:47 pm #

      Classification and separation between groups is a messy thing we do, fraught with errors (see my piece “Boundary Issues“). One hopes that the benefit outweighs the inevitable imprecision. I would love to see these large organisations make that case before accepting the method they use. I’m not proposing that people shouldn’t be classified for various reasons, just that the technique is supportable and maps to real attributes.

  5. Kelley Rico September 15, 2016 at 5:32 pm #

    I recently saw a billboard about autism (and on some level that is quite strange): it bothered me and really made me think about this very issue. It said something about how sensory stimulation sensitivity was a big part of autism, and it was written in a kind of cyrillic/psychedelic script. As if to say, if you can read this you’re autistic. And therefore, strange. I mean, a SPECTRUM of strangeness is what it seemed to indicate.
    I find diagnosis of ANYTHING to be really problematic these days. So often it is used as a tool to punish someone , stigmatize, etc. Also, once you’ve “got” a “diagnosis”, you can be ignored to a certain degree, you’re “defined”. I think you are doing a tremendous service with this blog. Congratulations on your good work!

    • Jim
      Jim September 15, 2016 at 6:58 pm #

      Kelley, I’m not sure that I get the message in that billboard at all. Not only that, I can’t recall ever seeing a billboard about autism. It’s certainly a message writ large. I wonder who was responsible for it.

      I know that there has been a landscape of experience with diagnosis. Mine has been mildly positive, but I know the attempt, overall experience and aftereffects vary.

      I’m glad you find what I write to be valuable. That’s very encouraging to me.

  6. Chris November 13, 2016 at 6:01 pm #

    Technically you may be right. But the word ‘Spectrum’ seems to have been chosen over ‘Continuum’. the original term coined by Lorna Wing, precisely because most people associate the word ‘spectrum’ with a wide array of colors. Technically these are in a specific order. But i don’t think that was the idea behind choosing the word. I think many people, even on first encounter, do interpret the ‘Autistic Spectrum’ as a more-dimensional classification. Which it is supposed to be. So (i hope you don’t mind a little irony) let’s not be too ‘autistic’ about it. That being said, some explication and clarification is always good. Thank you for that!

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