Self-diagnoses are not official diagnoses. You should always work with a clinician to determine something like an autism diagnosis. What if the individual actually has a social anxiety disorder and not an ASD? What if the individual has mild depression? There are so many "what-ifs" that I must always recommend a professional evaluation.
Teachers even come to me and say, "I believe I have students with Asperger's in my class." In general, these teachers end up describing what we might call "geeks" or "nerds." Sometimes, they also describe the shy, quiet bookworm like my wife. My wife is simply an introvert, but people ask me, "Is your wife on the spectrum?"
My wife, and many of the people I know, are introverts who appreciate quiet time to read and explore knowledge. There is no need to find hidden pathologies. My wife isn't shy, and doesn't have social anxiety. She simply wants to be left alone.
The first column in the NYT with which I found myself agreeing, at least to some extent, was this one:
January 31, 2012
Asperger's History of Overdiagnosis
By PAUL STEINBERG
Asperger syndrome and Aspies — the affectionate name that people diagnosed with Asperger syndrome call themselves — seem to be everywhere.
Considered to be at the high-functioning end of the autism spectrum, Asperger syndrome has become more loosely defined in the past 20 years, by both the mental health profession and by lay people, and in many instances is now synonymous with social and interpersonal disabilities. But people with social disabilities are not necessarily autistic, and giving them diagnoses on the autism spectrum often does a real disservice.
The key point in the opening is that some people with social "disabilities" (and I believe even people who have no disability, only introversion) are being diagnosed with Asperger's Syndrome. I know that's not popular to state within the autistic community, but it is true. Maybe it is only a fraction of the diagnoses, but it is happening.
Isn't every "official" diagnosis based on the Diagnostic and Statistical Manual of the APA? No. Even with a revision, broader autism criteria will remain enshrined in state and federal regulations for years to come.
The DSM criteria are not the only guides to assigning the autism labels, but the DSM-IV and upcoming DSM-V do set the standards.
I've had school psychologists tell me they have "diagnosed dozens" of students. In some states, schools can classify children without independent evaluations; laws vary state to state. In California, you can be officially diagnosed by a neuro-psychiatrist and not qualify for supports unless and until the state decides your impairment affects daily life substantially. And the state can also label you "autistic" without an official diagnosis.
What happens when someone is misdiagnosed? That person fails to receive appropriate supports. And when we diagnose someone without a "disability" we are misdirecting resources.
[Children] and adults with significant interpersonal deficits are being lumped together with children and adults with language acquisition problems. Currently, with the loosening of the diagnosis of Asperger, children and adults who are shy and timid, who have quirky interests like train schedules and baseball statistics, and who have trouble relating to their peers — but who have no language-acquisition problems — are placed on the autism spectrum.
I've stated repeatedly that I know the new DSM-V won't change my life. I am disabled and that isn't going to change, with the "autism" being the least of my personal concerns. My physical injuries dating back to birth place far more restrictions on me than my inability to deal with social situations. Still, I'm unlikely to "fall out" of autism, too. I'm not merely socially "different" — I rock, I tap, I'm sensitive to stimuli, I'm repetitive, and so on.
One of the odder trends is to "retroactively" diagnose famous people so we can all "take pride in autism" for some reason. I don't take pride in being unable to deal with people. I don't take pride in my flapping arms and stuttering speech. And I don't need "role models" to make me feel better. I'm not going to be Einstein or Bill Gates.
Labeling people without a real diagnosis is just plain reckless. What if those people had other issues? And, why do we care? I want to celebrate someone's accomplishments, regardless of his or her challenges.
In recent years speculation has abounded that Albert Einstein must have had Asperger syndrome. Christopher Hitchens speculated that his intellectual hero George Orwell must have had Asperger. Indeed, Orwell had major problems fitting in at British preparatory schools — not surprisingly, he hated the totalitarian tenor of teachers and school administrators — but someone on the autism spectrum could probably never have become a police officer in Lower Burma, as Orwell did. Similarly, writers like Charles Morris have noted that Warren Buffett is thought to have a condition on the autism spectrum, presumably Asperger syndrome.
Failure to "fit in" with society is not a neurological disorder. It is a social impairment, but not a disability. Being different is not always a sign of anything except being… different.
Many people, now inappropriately labeled as Aspies, make the world a richer, more interesting place. Their quirky absorptions in, say, physics, baseball stats or investment strategies add enormously to human advancement. […] Their seriousness and singularity of focus fit more compatibly with the interests of older adults rather than the interests of their childhood or young adult peers.
Some autistics make the world a better place, yes, and so do some people who are different. Most people, disabled or not, simply exist. Few individuals have a lasting affect on humanity. Sorry, but that's just how it is. I might affect a few lives, I might not. Autism might influence what I contribute (it probably does) or it might not.
For better or worse, though, Asperger syndrome has become a part of our cultural landscape. Comments about a person's having "a touch of Asperger's" seem to be part of everyday conversations. Even an episode of "South Park" last year was devoted to Asperger syndrome. We can only hope that better physiological markers distinguishing between the autism-spectrum disorders and pure social disabilities can stem this tide of ever more pathologizing.
I do agree we need to stop with the pathologies. Being different is not a disorder.
And then there was this column:
January 31, 2012
I Had Asperger Syndrome. Briefly.
By BENJAMIN NUGENT
FOR a brief, heady period in the history of autism spectrum diagnosis, in the late '90s, I had Asperger syndrome.
There's an educational video from that time, called "Understanding Asperger's," in which I appear. I am the affected 20-year-old in the wannabe-hipster vintage polo shirt talking about how keen his understanding of literature is and how misunderstood he was in fifth grade. The film was a research project directed by my mother, a psychology professor and Asperger specialist, and another expert in her department. It presents me as a young man living a full, meaningful life, despite his mental abnormality.
"Understanding Asperger's" was no act of fraud. Both my mother and her colleague believed I met the diagnostic criteria laid out in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. The manual, still the authoritative text for American therapists, hospitals and insurers, listed the symptoms exhibited by people with Asperger disorder, and, when I was 17, I was judged to fit the bill.
A psychology professor diagnosed her son with Asperger's. How could we not trust such a qualified individual? And yet, this professor later admits to her son that the diagnosis was incorrect. How did this happen? Because we have associated "awkward" and "geek" with "autism" for several years.
As I came into my adult personality, it became clear to me and my mother that I didn't have Asperger syndrome, and she apologized profusely for putting me in the video. For a long time, I sulked in her presence. I yelled at her sometimes, I am ashamed to report. And then I forgave her, after about seven years. Because my mother's intentions were always noble. She wanted to educate parents and counselors about the disorder. She wanted to erase its stigma.
The idea that the psychology professor had "noble intentions" doesn't persuade me to forgive the trend of over diagnosis. What happens to a child or adult misdiagnosed because of a quirky personality?
I wonder: If I had been born five years later and given the diagnosis at the more impressionable age of 12, what would have happened? I might never have tried to write about social interaction, having been told that I was hard-wired to find social interaction baffling.
This is one of the questions I have about myself. I write. But, I also struggle with issues of character motivation. Creating unique characters isn't easy, but it isn't easy for any author. That's why I do like most other authors and base characters on bits and pieces of people I've met in real life or read about in the media.
The column ends with a call to clarify what Asperger's Syndrome, and by extension what the autism spectrum, is.
But my experience can't be unique. Under the rules in place today, any nerd, any withdrawn, bookish kid, can have Asperger syndrome.
The definition should be narrowed. I don't want a kid with mild autism to go untreated. But I don't want a school psychologist to give a clumsy, lonely teenager a description of his mind that isn't true.
Benjamin Nugent, the director of creative writing at Southern New Hampshire University, is the author of American Nerd: The Story of My People.
A narrower definition might help avoid misdiagnoses. However, I believe it is already too late to reign in the popular definition.
I realize that some people embrace the label of "autistic" and "Aspie" while I don't get that passionate about the words. But, what if some of the people embracing the words should be embracing "social difference" and not autism?