What is "Autism" Beyond a Word?

"Autism" is a word with clinical, research, and legal meanings. It also has social meanings and personal meanings to the individuals and families touched by autism.

Defining "autism" makes discussions of "white" appear simplistic. I can explain white to students in a single lecture and then we will agree on the term "white" for the remainder of the semester. I cannot define autism to the satisfaction of anyone, not even myself.

In video production, "pure white" has three precise meanings: 5000, 6500, or 9300 degrees Kelvin. The lower value is slightly "yellow" and the higher is slightly bluish, by wavelength produced. When I ask for "white" I have to be precise and give the Kelvin value to any editor for color matching. You would notice if different editors working on a film or television show used various "white" standards. (I could go on for pages on graphic design issues and color matching.)

The history of "autism" has been traced to 1911 or 1912. It was first used by Dr. Eugene Bleuler, a Swiss psychiatrist. He did not mean "aut-ism" as in "self-obsessed" but instead suggested the observed patients were "self-constricted." They were "trapped" in a world of the self, unable to relate to others or external experiences. Leo Kanner also did not intend to imply patients were selfish, though he did describe them as disconnected and self-oriented.

At first, I thought of "autism" as an instrumental term. No, that's not a music thing. It means a term that itself refers back to defined measurement. White might have different meanings, but they are precise and can be measured by an agreed upon scale using scientific instruments. Rhetoricians and grammarians refer to this sort of language in different ways, but hopefully you get the concept.

If autism is instrumental, we can define it by measurements taken via agreed upon instruments. We classify intelligence this way: test with an instrument, measure, apply an agreed upon term to a set range of scores. (Yes, it is more complex than that, with many debates about I.Q., but play along for now.)
The problem with autism? There's no precision at all. None.

The current "official" criteria for "autism" in the United States is the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition with Text Revisions. Thankfully, we call it the DSM-IV-TR, or simply the DSM-IV. The "text revisions" were important, correcting several errors -- including an error in the criteria for autism. I have posted a discussion of the DSM and criteria for autism diagnoses as a set of permanent pages for this blog.

Here are some of the challenges with autism:

• Autism describes characteristics of an individual, not a specific underlying medical condition. The reasons for "autistic" traits might be numerous, with dozens of sources. Autism is likely not one medical condition, and those conditions might not be related in any way beyond their expression as "autism."
• The DSM-IV criteria are themselves subjective. What constitutes a "marked impairment" versus a mild impairment? No instrument or measurement is specified within the DSM, so it is up to the clinician making a diagnosis.
• Not every clinician adheres to the DSM-IV-TR standard. Some use the DSM code for insurance purposes, but they diagnose autism using a variety of standards. Asperger's syndrome is often diagnosed using such extra-conventional standards.
• Clinicians and researchers are influenced by the traditions of mental health care, which go beyond any one text. Many of the diagnostic labels associated with autism are traditional, not codified standards.

Diagnosing someone with autism is really an act of labeling him or her based on observable characteristics. What causes a person to be "autistic" doesn't affect the diagnosis, generally. In fact, if a medical cause for the "autism" is identified, the individual's diagnosis might be changed. I've met people with brain traumas who were refused an "autism" diagnosis because the cause of their observable behaviors was known. By this logic, you are "autistic" only if we do not know why you have autistic traits.

I am officially "autistic" with a subcategory of "high-functioning" — but that diagnosis was one of several throughout my lifetime. They are all simply labels, which changed based on how organizations (and various clinicians) defined terms. If brain trauma is exclusive, I don't have "autism," and if you cannot have certain I.Q. scores, I also am disqualified. From experience, I know any label we are assigned might be temporary.

What about those parents, individuals, and professionals with an attachment to the traditional subcategories of autism? As part of the proposed revisions to the DSM for 2013, the various subcategories are discouraged. What happens when Asperger's and PDD-NOS are grouped with all variations of autism?

The official diagnosis of autism makes a child or adult eligible for some supports in our society. In this respect, the diagnosis is not only helpful but often essential to the well-being of an individual. Autism becomes not only a medical term, but a legal term. Simplification for the purposes of everything from insurance billing to special education tracking might help individuals receive extra supports. But, it also removes something.

I'm not sure how I feel about the removal of subcategories. The DSM-V calls on clinicians and researchers to describe autism individually, which is good. However, I suspect practicing mental health professionals will revert to the familiar subcategories.

There are people who have defined themselves as "Aspies" or "Auties" and view their subcategories as communities. I don't consider myself an "Aspie" and don't embrace the label "Autie" or anything similar. But, for many people these communities are important contributors to pride, self-identity, and a sense of understanding. Having only one category for "autism" has been seen as an effort to delegitimize Aspies and their self-advocacy movements.

Again, I'm ambivalent. As a researcher, I like precision. As an educator, I've seen how students rely on differently communities to develop a sense of self. Aspie or not, I respect how the self-advocacy movement has helped a lot of people in the last few years.

This is the latest proposed revision to the DSM-V criteria for autism:

Autism Spectrum Disorder
Must meet criteria 1, 2, and 3:

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

1. Marked deficits in nonverbal and verbal communication used for social interaction:
2. Lack of social reciprocity;
3. Failure to develop and maintain peer relationships appropriate to developmental level

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

1. Stereotyped motor or verbal behaviors, or unusual sensory behaviors
2. Excessive adherence to routines and ritualized patterns of behavior
3. Restricted, fixated interests

3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

Retrieved from:
http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=94#

The APA explains their rationale as follows:

New name for category, autism spectrum disorder, which includes autistic disorder (autism), Asperger's disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified.

• Differentiation of autism spectrum disorder from typical development and other "nonspectrum" disorders is done reliably and with validity; while distinctions among disorders have been found to be inconsistent over time, variable across sites and often associated with severity, language level or intelligence rather than features of the disorder.
• Because autism is defined by a common set of behaviors, it is best represented as a single diagnostic category that is adapted to the individual's clinical presentation by inclusion of clinical specifiers (e.g., severity, verbal abilities and others) and associated features (e.g., known genetic disorders, epilepsy, intellectual disability and others.) A single spectrum disorder is a better reflection of the state of knowledge about pathology and clinical presentation; previously, the criteria were equivalent to trying to "cleave meatloaf at the joints".