First Steps: Understanding Autism

Introduction

As the parent of three children with autism, I am often seen as a de facto expert. Like most parents, my education in autism has been a trial by fire. I’ve learned about autism because I had to learn about autism. And I usually had to learn the hard way.

My first child was diagnosed with autism over a decade ago. I’ve read many of the books that have been published on autism and I’ve scanned many others. Many of them have value. The problem with most of these books, however, is that they provide too much information while simultaneously providing too little.

Some books are written by experts and describe, in great detail, what it means to raise an autistic child. Others are written as memoirs, either by parents or by adults with autism. Still others provide technical details about a single treatment regimen. None of them, however, provide the clear, concise foundational understanding of autism you’ll find in this guidebook.

People who are just coming into the topic of autism have to read several books just to get up to speed. The alternative is to read hundreds of blog posts and interact with the many experts that are out there via social media. In doing so, they will discover that much of the information they have found conflicts. It takes a lot of time and a lot of confusion to sort through it all.

This starter’s guide will help to change that. It’s designed for anyone who has an interest in autism. It isn’t restricted to parents, to grandparents, to adults with autism, to the bosses of adults with autism, or to any other segment of the population. This guide is for anyone who wants to wrap their head around autism quickly and clearly.

This guide is not intended to be comprehensive. Most readers won’t learn everything they will ever need to know about autism. Most readers will learn just enough to understand as much as they need to know right now. This is the guide I wish I had when my first child was diagnosed with autism, because this is the guide that presents the big picture panorama of the greater autism community.

Chapter 1

What Is Autism?

Believe it or not, this is a really, really complicated question. The answers you get when you ask this question will vary depending on the disability model, the belief system, and the personal perspective of the people you ask. The answers you give will often pigeon-hole you in the minds of people within the greater autism community. Like most people who live with autism, I have formed strong opinions about how this question should be answered. But I’m not writing this to sell you on a position. I am trying to arm you with enough information to make your own, informed decisions.

Two Disability Models

The dominant disability model is the Medical Model of Disability. According to the medical model of disability, autism is a disorder that is often diagnosed by psychologists or psychiatrists based on observed behaviors. While I will cover this a bit later, you can learn about the precise diagnostic criteria of autism right now by searching Autism Spectrum Disorder and DSM-V. This model asserts that autism is treatable and that it is potentially curable. There is not, however, a known, scientifically-validated cure to autism. (Please note that if a treatment cannot be scientifically-validated, then it is NOT a medical treatment and cannot accurately be described as a cure.)

The revolutionary disability model is the Social Model of Disability. According to the social model of disability, autism is a disability that is understood and shaped by how society impacts autistic people. The point here is not that autism is not a disability, nor is it that the diagnostic criteria are inappropriate (though, there are people who make both claims). The point here is that treating autism effectively has more to do with changing society than changing the individual with autism. Please note that the word disorder is not used in this model, because the social model of disability acknowledges that people with disabilities are part of the normal, natural variety of human beings. Instead, they use difference, as in autism is a neurological difference. As people can and do vary in their skin color, gender, and other observable attributes, people also can and do vary in their abilities. The social model of disability recognizes that calling these variations disorders and medicalizing the treatment of these variations is a form of social oppression.

While we are on the subject of language, you may have noticed by now that I am alternating between people with autism and autistic people or autists. Some people who discuss the subject of autism adamantly use people-first language, thus people with autism. Some people who discuss the subject of autism, most notably autistic self-advocates, adamantly use identity-specific language, thus autistic or autist. In the latter case, autism is more than a disorder or a difference; autism is part of the person’s sense of identity and represents their membership in a (un)recognized subculture of autistic people. Both sides have valid reasons for their opinions regarding appropriate language, therefore I use both forms.

Belief Systems

If two conflicting, but overlapping, models of disability were not complicated enough, several belief systems operate under each