Friday, March 7, 2014

Guest Post from Nick Walker: What Is Autism?

The following post was written by Autistic activist Nick Walker. You can find more of his work on his blog Neurocosmopolitanism, on Facebook, on Twitter, and on his website. Nick has been particularly helpful in my understanding of Autism, which is demonstrated in my own writing here. I have included some related personal thoughts directly after his essay.


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.



My Thoughts: What was that catalyst that changed my fear to acceptance? Very simply; my children began to defy the definition of Autism that I had been told. This set me seeking.  I sought, and I seek, truth.

I am fortunate to be parenting in a time where Autistic culture is blossoming and I can learn like those parents before me never could. My children are fortunate because, right now, their elders are making huge gains in diminishing the commonly held and false perceptions of Autism and in defining themselves as a people.

The above declaration of what Autism is, written by an actual Autistic person, is remarkable. It strikes me to be that truth I am always seeking. It resonates with many other Autistic people. It defies what we the majority have been told, what we have been telling ourselves about Autism, just like my children defied my ignorance.

I imagine beyond too. I picture those parents of Autistic children that will come after me. What I have had to seek to learn, what Autistics have been fighting to tell, I know it will be commonly held as truth. I envision my children being free to be Autistic, accepted, and appreciated. I predict we will finally understand that no one should attempt to define another.

My humble thanks to Nick Walker and all the Autistic adults defying and defining.
 

3 comments:

  1. Thank you for sharing Nick's definition and your words, Heather. Both resonate with my experiences.

    "I am fortunate to be parenting in a time where Autistic culture is blossoming and I can learn like those parents before me never could." This is so true, and you are astute and generous to mention it. 13 years ago, I first heard the word autism in this context. My daughter's preschool teacher stopped me after class to say my daughter was not interacting like other children and she thought it might be autism. The teacher was kind. She did not diagnose. She suggested observation by a professional. 13 years ago, I searched "autism" on a much smaller than it is today internet. ALL I saw was disease model definitions. And I have a friend whose daughter is 10 years older than mine, and they had no access to such resources.

    I am grateful that my children, like yours, led me to seek more and discover that their way of being is not a disease, disorder, or deficiency, but their own way of being. I am thrilled that the world is changing.

    I've reposted Nick's definition on my blog, crediting and linking him and you. Thank you!

    ReplyDelete
  2. As you already know (:)), I've done a recommendation post for this guest post. It definitely resonates with me. I'm also planning to pass this link along to some other people who may not read my blog often, so that they can check it out themselves. Not to mention save a copy on my hard drive! :)

    ;) tagAught

    ReplyDelete

  3. Many thanks for the amazing essay I really gained a lot of info. That I was searching for

    ReplyDelete