What Is Autism?

March 1, 2014

How many websites are there that have a page called something like “What Is Autism?” or “About Autism”? How often do organizations, professionals, scholars, and others need to include a few paragraphs of basic introductory “What Is Autism?” text in a website, brochure, presentation, or academic paper?

I’ve seen so many versions of that obligatory “What Is Autism” or “About Autism” text. And they’re almost all terrible. For starters, almost all of them – even the versions written by people who claim to be in favor of “autism acceptance” or to support the neurodiversity paradigm – use the language of the pathology paradigm, which intrinsically contributes to the oppression of Autistics.

On top of that, most of these descriptions of autism – even many of the descriptions written by Autistics – propagate inaccurate information and false stereotypes. Some are so bad that they actually quote the DSM.

Of course, there are also a few really good pieces of “What Is Autism” text out there. But for the most part, they’re rather personal pieces, about the authors’ own unique experiences of autism, rather than general introductory definitions.

What is needed is some good basic introductory “What Is Autism” text that is:
1.) consistent with current evidence;
2.) not based in the pathology paradigm;
3.) concise, simple, and accessible; 
4.) formal enough for professional and academic use.

Since I couldn’t find such a piece of text elsewhere, I wrote one. And here it is.

I hereby give everyone permission to reprint the text below, in whole or in part, whenever you need a piece of basic “What Is Autism” or “About Autism” text. Please do credit me for writing it (and of course, a proper citation is a must in academic writing). But really, as long as credit is given, anyone can go ahead and use this text for free. 


WHAT IS AUTISM?

Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.

Autism is a developmental phenomenon, meaning that it begins in utero and has a pervasive influence on development, on multiple levels, throughout the lifespan. Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that autistic individuals have a different neurological “operating system” than non-autistic individuals.

According to current estimates, somewhere between one percent and two percent of the world’s population is autistic. While the number of individuals diagnosed as autistic has increased continually over the past few decades, evidence suggests that this increase in diagnosis is the result of increased public and professional awareness, rather than an actual increase in the prevalence of autism.

Despite underlying neurological commonalities, autistic individuals are vastly different from one another. Some autistic individuals exhibit exceptional cognitive talents. However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled to some degree – sometimes quite obviously, and sometimes more subtly.

The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are just by-products of the intense and chaotic nature of autistic sensory and cognitive experience.

Autism is still widely regarded as a “disorder,” but this view has been challenged in recent years by proponents of the neurodiversity model, which holds that autism and other neurocognitive variants are simply part of the natural spectrum of human biodiversity, like variations in ethnicity or sexual orientation (which have also been pathologized in the past). Ultimately, to describe autism as a disorder represents a value judgment rather than a scientific fact.

 

NeuroFly

{ 52 comments… read them below or add one }

Trishinspace March 1, 2014 at 9:54 pm

Bravo!!! Many thanks to you, Nick! Will be passing this along anytime someone asks “about autism”. The world is moving on and our written and official definitions of ourselves need to evolve as well. :)

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Vanessa Truett March 1, 2014 at 11:21 pm

Nick,
This is excellent. Thank you for writing this. I will share far and wide, and with immense gratitude.
Best wishes,
Vanessa

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Sabdha March 2, 2014 at 12:13 am

This is fantastic and extremely good timing for me. Thank you!

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Sian March 2, 2014 at 1:07 am

Fantastic

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Charlotte Mallinson March 2, 2014 at 2:19 am

This is fantastic reading! Very many thanks.

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Gill Bridges March 2, 2014 at 3:24 am

Thank you very concise and summative information.

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nariman Elwakkad March 2, 2014 at 4:16 am

Enjoyed reading this information and found it quite interesting, informative, and helpful. Thank You

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Petra March 2, 2014 at 5:29 am

Definitely the best description of autism I have ever read. Judgmentally neutral, but still giving attention to how and why it’s a disability in our society.
Thank you!

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Sonnolenta March 2, 2014 at 6:03 am

This is amazing! Made my heart sing! I will be putting it on my site with credit of course to you here. Thank you so much for writing this most excellent and relatable definition for autism. FANTASTIC!

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Kiah March 2, 2014 at 6:18 am

Finally! A piece that recognises the equality and validity of my son’s neurology. Thank you.

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Jess March 2, 2014 at 6:42 am

This is brilliant. Far and away the best explanation I have read.

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Susan Titterington March 2, 2014 at 7:47 am

Thank you for this. I hope it helps more people understand.

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Lori March 2, 2014 at 8:01 am

I love this, and I want to share it everywhere. I am going to share this with my children’s teachers. Please add images to your blog to make it easier to share with special needs parents on Pinterest and Facebook.

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Nick March 2, 2014 at 11:00 am

Thanks for the suggestion, Lori! I’m outrageously busy, but will look into adding images sometime in the near future.

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Aurora March 2, 2014 at 8:17 am

Thanks, Nick.

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Vinny March 2, 2014 at 8:23 am

Well Done! Thank You.

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Kath March 2, 2014 at 9:16 am

Brilliant! Best description I’ve seen, particularly that the social aspects are a byproduct of the sensory aspects. Completely agree.

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Katharine Kroeber March 2, 2014 at 10:35 am

Can I print this out and give to various school personnel? We’ve been fortunate with good people, but they still have struggles, and I think this might really help.

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Nick March 2, 2014 at 11:01 am

Yes, Katherine! Everyone is welcome to share this, online or printed out, wherever it might be of help. Thanks for asking!

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Mosaicofminds March 2, 2014 at 12:03 pm

Nick, thank you so much. I’ve been looking everywhere for something like this. As a researcher, I’m frustrated with all the biases and untested assumptions the DSM includes and would like to use something that is equally precise, but that an autistic person would agree with. So this is amazing and I’ll definitely be sharing with the researchers I know!

I loved how you centered sensory processing and your framing of social disabilities. But I was surprised you didn’t talk about language or motor characteristics, or stimming or intense interests. People desperately need a perspective like yours on these traits because they’re obvious to all, and easily misunderstood and pathologized. Any particular reason you didn’t talk about these characteristics? Do you plan to write anything further about them?

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Nick March 2, 2014 at 10:51 pm

“Any particular reason you didn’t talk about these characteristics?”

Actually, I did talk about those characteristics – I was just quite brief about it. In the second paragraph, I wrote, “Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing.” Which encompasses all of the characteristics you mentioned.

The reason I didn’t go into greater detail about any of those characteristics is that my intention was to write a general introductory definition that was concise enough that people could use the whole thing on a simple and quickly readable “About Autism” website page, or fit it on a single page of a brochure.

I could (and eventually will) write an entire book on autism. I could (and eventually will) go into detail about any one of those autistic characteristics, expanding any of them into a full paragraph, a full blog post, or a full book chapter. In this case, doing so wasn’t in line with my goal of being extremely concise, nor with the time I had available to write this, nor with the needs of the particular consulting client for whom I originally set out to write this.

The only aspect of autism to which I chose to devote a full paragraph of explanation this time was the social development aspect. I felt that that particular aspect was worth a full paragraph because this explanation of autism is specifically intended to counter or replace all of those explanations that mistakenly identify “social and communication deficits” as being the core of autism.

So, yes, I do indeed plan to eventually write further about language, motor characteristics, stimming, and intense interests in autism. I’ll say for now that I believe that ALL of these characteristics, as they manifest in autistics, can be traced to the high levels of synaptic connectivity and responsiveness that this description highlights as the central distinguishing feature of autistic neurology.

And thank you for asking. It’s helpful to know what topics my readers are interested in hearing more about.

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Mosaicofminds March 19, 2014 at 2:25 pm

OK, that makes sense. I wasn’t aware of the length you were aiming for. You did an amazing job getting across the essential ideas concisely. I’m looking forward to reading more, eventually.

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Krista R March 2, 2014 at 12:49 pm

This is great, thanks! I am both the parent of a child on the spectrum and a psychology professor, and it kills me to see how bad some of the autism descriptions are. I actually switched books in one class based solely on the autism description and found one that is much better, much more based on the neurology, and quite aware of the vast diversity in the community. We are a family that much appreciates the neurodiversity in our own family. In fact, my husband and I have neurodiversity bumper stickers that our aspie son loves! I will be sharing this with my students when we discuss autism next semester!

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Steph March 2, 2014 at 4:21 pm

This is a truly refreshing perspective. I am so tired of the prevalent canned, academic definition of autism. Humans have so many differences, and we constantly struggle to coexist. I do hope your contribution to the discussion of autism will help improve our struggle with the concept of neurodiversity.

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Ann Power Smith March 2, 2014 at 5:43 pm

Nick, thanks for this. You’ve represented important and under-appreciated facets of autism…especially for kids like my 7 yo daughter (i.e. normal/high IQ, highly creative, excelling academically with exquisite attention to detail; but socially non-confident and immature for age, and hypersensitivity to sounds, smells). Moreover, I recognize less intense versions of several of her “autistic” traits in myself, though I would certainly not be diagnosed as autistic, confirming very strongly for me the genetic basis of these traits and the muddy distinction between neurotypical and autistic.

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Lynn March 2, 2014 at 9:22 pm

Hello there. I do appreciate this so very much. Thank you for taking the time to write this. I do have one point, however, that I think needs elaboration here. Language processing is another aspect, separate from sensory and cognitive. This description seems to not address that and therefore, not address those who process language differently and communicate in ways that are not verbal or even based on words. May I ask why that is not mentioned?

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Nick March 2, 2014 at 11:17 pm

“Language processing is another aspect, separate from sensory and cognitive.”

No it isn’t. Language processing is a cognitive function.

While I don’t specifically mention the word “language” in this description of autism, language was certainly one of the things I had in mind when I wrote, in the second paragraph of this piece, that “Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing.”

I regard the many variations and peculiarities of autistic language processing and communication (verbal and otherwise) as being ultimately traceable to the high levels of synaptic connectivity and responsiveness that this description highlights as the central distinguishing feature of autistic neurology.

For more explanation of why I didn’t elaborate further on this specific aspect of autism in this particular piece, see my reply to Mosaicofminds’ comment, somewhere above.

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Lisa March 2, 2014 at 9:44 pm

Thank you for sharing this, Nick. It succinctly describes Autism which is very difficult to do.

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Lydia Brown March 3, 2014 at 4:29 am

I like this definition very much, but I don’t think it’s very cognitively accessible. I understand it perfectly fine, but I have a lot of educational and linguistic privilege. I think many of our colleagues who have language impairments or don’t have access to the same educational privilege wouldn’t be able to understand this. (I’m especially thinking of a. some folks with ID and other language-related disabilities, b. folks who haven’t or can’t access conventional education, and c. folks whose first language isn’t English.) Is there any possibility of also producing a more cognitively/linguistically accessible version of this explanation?

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Nick March 3, 2014 at 11:55 am

You’re right about the cognitive accessibility, Lydia. Thanks for bringing this up.

I originally wrote this piece for one of my consulting clients, for use on a website about a research study; the general tone of that site is pretty clinical and academic. Most of the truly awful “About Autism” text I’ve seen appears in academic or professional contexts, or in materials put out by nonprofit or governmental organizations. For this particular piece, I wanted something that would fit with the general tone and style used in such contexts.

More cognitively accessible versions are indeed needed, as are versions in other languages, and an audio-recorded version. I encourage others to produce translations and recordings of my writing, and if such things are produced and brought to my attention, I’ll post links to them (I recently heard from someone who’s translating my “Throw Away the Master’s Tools” piece into Russian).

I do intend to write a much more cognitively accessible introduction to autism at some point. Perhaps even a short book someday, intended to be accessible to ID folks, those without formal education, and kids. A much more cognitively accessible version of this explanation would be a good place to start.

Unfortunately, I’m so busy and such a slow writer, and my to-do list is so long, that it might be a long time before I can produce such a thing. I’ll aim to get to it eventually, but if anyone else wants to tackle the task first, I’d welcome it, and would gladly give my input on a draft of such a thing. And of course, if someone does write a good one, I’ll post a link here.

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Lori March 3, 2014 at 7:11 am

Great article Nick! Nice job of making it impersonal and explaining the interconnectedness of sensory processing, social interaction, and the society that someone is living in. That giant concept seems to be regularly glanced over in descriptions of autism as a list of symptoms or deficits.

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Mary March 3, 2014 at 7:58 am

Nick, thank you for your great report. After struggling for years trying to explain to others what is involved with my grandson, this gives me a strong basis to describe his “condition” as others have called it. I plan on keeping copies of this to help others understand what is involved in his thought process, and no matter what they think, he does not have a “condition”, and I love him the same as my other grandchildren, not because he is “special”. I hate these catch words that others use to dismiss our boy. I look forward to your book, and thank you for your wonderful sensitivity.

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Brooks March 3, 2014 at 9:36 am

Fabulous article, Mr. Walker—comprehensible, to the point, tangible. While I do think Lori made a good point in her previous comment about adding images for sharing on Pinterst et al, I’m glad this is not the case here, for I think it’s important to let your words be the star. Many thanks for writing the piece, and sharing it for the world to see!

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nikki March 3, 2014 at 6:18 pm

very good! covers everything..bookmarking and sharing!
i like the point where you are between formal and accessible but i wonder if someone (who is a native speaker) would be able to cover exactly all this in more common language.. not dumb it down, but let’s say ‘more accessible’ .. for family members etc..?

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Nick March 3, 2014 at 7:25 pm

A “more accessible” version would definitely be of value, and I’ll do one eventually. See my reply to Lydia Brown’s comment, somewhere above.

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Tanya Wegner March 6, 2014 at 7:34 am

Well written!
It is succinct. It speaks directly to the issue at hand. It speaks in a fashion which maintains a positive image; psychologically, emotionally & physically regarding those whom it is describing. Thank you!

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Lisa Brikowski March 19, 2014 at 6:30 pm

Thanks, Nick. I am your newest fan.

I shared this as “Best ‘What is Autism’ piece ever” with:
WrongPlanet.net
autismfriendsnetwork.biz (a spin-off of the former AFF)
My FaceBook buddies
and will continue to share it with anyone I think will benefit.

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Andrew Pulrang March 22, 2014 at 11:20 am

This is great, and much needed, at least from my point of view. It does answer a lot of the questions and honest confusion non-autistic people … myself included … have about autism. It also acknowledges the more clinical interpretations of autism, while neither approving of them, nor judging them too harshly. In short, you present a coherent theory of autism that is strong enough to compete with more traditional theories.

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Jennifer March 29, 2014 at 7:50 pm

I’m giving a presentation on autism on April 9 and I’m going to use this in my presentation. Thanks you for writing it Nick. This is wonderful.

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Teresa March 30, 2014 at 3:04 pm

Totally au-some-ly written. Thank you so much for it, it’s brilliant.

:)

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Emma April 3, 2014 at 6:39 am

Thanks for this, Nick. I think I will simply airlift it directly into my dissertation (with citations, of course :-).

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ShesAlwaysWrite April 8, 2014 at 6:21 am

Enormous thanks for this fantastic piece. As a professional technical writer with a medical background and autism parent I’ve been in search of the perfect synopsis to share with my son’s teachers, because no matter how I say these things they don’t accept it coming from someone they perceive as “just a mom.” I can’t wait to share this – and of course, credit your work! – far and wide.

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tagAught June 8, 2014 at 3:27 pm

Nick,

Found this post through an interesting trail: I wrote a poem for Emma of Emma’s Hope Book, proceeded to follow Ariane on Twitter, and she tweeted about Raising Rebel Souls posting this (complete, with your intro as well) on her blog. Went there, immediately recommended it on my blog. Then went looking for a printable version, because I wanted to save it on my hard drive, and potentially send PDF copies to other people (I’m planning to email this post’s URL to our local Autism Society). So I followed the link Raising Rebel Souls provided to your blog, and here we are! :)

I really appreciate your definition, and it resonates quite well with my own experience. (Yes, I subscribe to the Intense World Theory, at least to a certain extent.) Thank you for posting it so that others can read it and let other people know about it!

I might try writing a draft of more accessible language; if I do, I’ll certainly send it to you for approval! And I look forward to your (eventual) book on autism. Finding blogs of other autistic adults has helped me a great deal over the last year and a bit (which is why I started my own blog focused on autism), and I’m looking forward to reading through your other posts. (I’ve already read “April, Autism, and Allies”, and I wanted to cheer! That’s exactly what people need to be told. {Virtual Hugs!} for that!)

Thanks again for this post.

:) tagAught

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tagAught June 10, 2014 at 2:00 pm

Back again!

As I mentioned above, I sent out the link to this post (or, more specifically, the link to the recommendation post on my blog) to several people, including the Autism Society of Newfoundland and Labrador’s Outreach Coordinator, and my Social Thinking instructor (who also handles the Autistic Adults’ social group).

I got a reply today from my Social Thinking instructor, who mentioned that I must have been reading her mind; she’s working on Camp Hazelwood, the ASNL summer camp, and is going to be starting to train the counselors on Monday – and one of the things she needs to go over with them is some of the details of autism. She was trying desperately to figure out how to do that… and then I sent her to this post. :) She asked me if I could send her a PDF copy that she could print out and share (with your name included for credit, of course), and since I’d managed to get a clean PDF copy (of the entire post, plus comments), that’s exactly what I did. She’s very pleased, and happy to have it.

:) tagAught

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Nick June 10, 2014 at 2:08 pm

Cool. Thanks for letting me know. Always nice to hear that my work is being put to good use.

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Bernie Folan June 15, 2014 at 8:54 am

Thanks so much for this. I’d like to do some awareness work with time sensitive people.

Have you considered doing a slide set? Obviously the speaker will need to be familiar and understand the explanation but slides would be good. I will create some one day maybe but wanted to check.

Thanks again.

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Nick June 16, 2014 at 5:32 pm

There are a lot of things I consider doing, but a limit to how much I have time to do, considering how much I’m already doing. A slide set would be nice, but I doubt I’ll ever get around to it, given how many other projects I have lined up. I’m happy to have my words quoted in slide sets created by other people, as long as I’m given credit.

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Daniel Obejas June 28, 2014 at 6:33 pm

I’m going to quote this on my personal blog. Is there any credit I should mention other than your name and this website?

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Nick June 28, 2014 at 10:07 pm

My name and this website is all that you need to mention. Thanks!

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Mikey July 14, 2014 at 2:46 pm

Fantastic !

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Ben Edwards July 18, 2014 at 10:15 pm

Finally a definition that is scientifically-backed and respectful to autistic people. Now I can explain to my friends what I have without having to demean myself or confuse them. This definition I think should be adopted by current professionals, with credit to its author, and is a tremendous step towards autism acceptance.

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Sheogorath July 22, 2014 at 9:17 am

Thanks, Nick! You’ve managed to put into words what I’ve forever been struggling to say. I’ll be glad to accept your permission on behalf of Aspergernauts.

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