Nick Walker says that
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.
I’m glad to see this, because it’s something that I (and many other autistics) have struggled with; how to get away from the misconception that autism is a “defect” or a “disorder” and move to a more accepting paradigm. Autism is definitely a disability, and as enshrined in federal law (IDEA and the DD Act),
Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society.
I’ve known about my own autism for less than 10 years, and in that time, I’ve pondered what it means to be autistic. I know or meet people, or even read about some, who I know to be autistic, but how do I know that? What is it that defines our common experience? It’s really difficult to pin down. Autism is certainly not defined by the silly words in the DSM. That only describes how autism looks to an outside observer. It doesn’t describe the autistic experience.
Autistic people are speaking out now in ever larger numbers about what it is like to be autistic. The neurodiversity movement is picking up steam, and I believe will eventually expand to include many labels now seen as “disorders.” So here is a step along that path, and a wonderful contribution from a fellow autistic.
Here is Nick’s definition:
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.