Our reasoning is simple. We have come too far in embracing Aspergers as not just a diagnostic label but as an identity for many children, teens, and adults who feel that this label is more appropriate than an all encompassing Autism Spectrum Disorder. Nowadays most people have heard of Aspergers and generally understand what it means. In fact, it is my opinion that Asperger's Syndrome may be better defined than autism. Yet there is much controversy and debate about whether Asperger's Syndrome is "real" and if it is a separate disorder than autism or is it simply another name for High Functioning Autism.
Donna Williams, author, blogger, and adult with a diagnosis of autism has a very intriguing conversation on her blog with people discussing the pros and cons of seeking an official diagnosis of Aspergers. Williams brings up a very important point of whether or not people should seek this diagnosis for medical reasons (services and treatment for a disability) vs. finding identity. It is an important distinction to be made and gets into the root of why we have these labels in the first place.
Bryna Siegal, a child psychiatrist at the University of California, is one autism expert who believes that a diagnosis should accurately identify disability. Siegal is one of many mental health professionals who think that Asperger's Syndrome has been extremely over-diagnosed. She has been quoted as saying that she “undiagnoses” Asperger’s far more frequently than she diagnoses it. For every 10 children who come to see her with a diagnosis of Asperger’s, she “undiagnoses” nine. Her other often quoted response on the proposed over-diagnosis of Aspergers is this:
"I ended up telling my intake coordinator, 'If they leave you the number of their secretary to call back, do not call them back,'” she says. “If they have a secretary, they do not have Asperger’s syndrome.”
In some ways I agree with Bryna Siegal. I feel that the incidence of Asperger's Syndrome as well as autism, ADHD, Bipolar Disorder, and other neurological conditions have been grossly over reported. There are many individuals who do not meet the criteria for having these disorders yet have been given such a label. Part of the problem may be that our culture tends to romanticize such disorders. Asperger's Syndrome has especially been romanticized by the media as the better diagnosis to get as opposed to autism or oppositional defiant disorder. Characterized as "quirky geniuses," individuals who have Aspergers may not be perceived as having major life hurdles to overcome.
Small yet important tangent: I do want to point out that just because someone has autism or Asperger's Syndrome doesn't mean that they couldn't have a secretary. I have a friend, Thomas McKean, who has a diagnosis of autism who has written books and poetry, speaks at conferences, travels by plane across the country, drives a car, etc. (Might I point out that I am supposed to be neurotypical but I am terrified of public speaking and plane travel and I don't drive a car). Just because an individual has autism or Asperger's does not mean that they are totally impaired in every aspect of their life and cannot do "normal" stuff. And just because someone with autism or Asperger's doesn't fit the stereotype of extreme impairment and succeeds in some areas (goes to college, gets a job, etc) doesn't mean that they are not struggling in other areas or aspects of their life (self-care, money management, making and keeping friends, etc.) Make sense?
And now back to our regularly scheduled program...
The romanticizing of Asperger's as well as the zealous over-diagnosis of this disorder has hurt the population of people who most require assistance to overcome the difficulties associated with their Asperger's. Just as every kid with autism is not a budding "Rainman," not all people with Asperger's are like Einstein or Bill Gates (both of these famous people have been "diagnosed" by some of the general public as having Asperger's). Poor Einstein's mama. Her son has been diagnosed after his death with everything from Asperger's to Obsessive Compulsive Disorder.
But I digress...
Part of this confusion about the Asperger's diagnosis has been perpetuated by popular media. For example, one of the most popular posts from Wired Magazine on-line was an Autism-Spectrum Quotient or AQ Quiz to tell the general populace if they might have autism or Aspeger's. While this quiz was not intended to diagnose anybody, people did just that. They not only diagnosed themselves but their friends and family members. All of a sudden everyone is on the spectrum. I don't think so. It was yet another disservice to the many people who actually do have autism or Asperger's.
It is my opinion that doing away with the Asperger's diagnosis is much akin to throwing the baby out with the bath water. Yes this disorder may be over diagnosed but that doesn't mean that the diagnostic criteria is meaningless. In doing away with this label, it is essentially guaranteed that many children, teens and adults will not receive the services they need.
One can argue whether Asperger's is an identity, a disability, both of these things, or neither. But I do think many would agree that Aspergers is similar to autism but different enough to warrant a separate diagnosis. My Max is semi-verbal, wasn't fully toilet trained until 7 or 8 years of age, and is quite content to engage in activities by himself. He is not seeking out friends nor is he aware that societal norms dictate that he should care about such things. Max also needs assistance to do everything from washing his hair to crossing the street. Compare Max to a teen who is hyper-verbal but doesn't read facial expressions easily, is in a mainstream high school classroom, and has great difficulty making friends but desires them very much. This teenager is very aware of his lack of friendships and it causes him great distress and low self-esteem. This teen is also preparing for SATs and is planning to go to college. Can we really say that Max (who has straight up autism) and a teen his age who has Asperger's Syndrome share same disability? Do they both require the same services? I certainly don't think so. They both may require assistance but for vastly different life issues. It is my opinion that lumping Aspergers into this huge umbrella of autism does a disservice to children and adults on either end of the spectrum. We need some boundaries and distinctions to make sense of these labels.
As far as I am concerned Asperger's Syndrome has an important function as a diagnosis and should not be eliminated. We will see what happens in 2013 when the DSM-V comes out.
For those who are curious about the original diagnostic criteria for Asperger's Syndrome here is the DSM-IV list of symptoms:
(I) Qualitative impairment in social interaction, as manifested by at least two of the following:
-
(A) marked impairments in the use of multiple nonverbal
behaviors such as eye-to-eye gaze, facial expression,
body posture, and gestures to regulate social
interaction
(B) failure to develop peer relationships appropriate to developmental level
(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(D) lack of social or emotional reciprocity
-
(A) encompassing preoccupation with one or more
stereotyped and restricted patterns of interest that
is abnormal either in intensity or focus
(B) apparently inflexible adherence to specific, nonfunctional routines or rituals
(C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(D) persistent preoccupation with parts of objects
(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.
(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)
(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.
(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia."
We are going to be talking a lot more about Asperger's Syndrome on this blog. In the meantime here are some resources to get you started on your journey to learn more about this disorder:
- Asperger Syndrome and High Functioning Autism Association
- Asperger Syndrome Education Network
- Wrong Planet
- Tony Attwood: Author of The Complete Guide to Asperger's Syndrome
In addition NotYourTypicalMom has discovered these resources for more information about Asperger's. If you have a link to share just shoot us an email.
Resources for learning more about Asperger's Syndrome
- “Manners for the Real World” by Coulter Videos to teach social manners, rules and cues.
- “The Transporters” by Simon Baron-Cohen ….also “Mind Reading” is a computer program they developed.
- GRASP President Michael John Carley – book “Asperger’s from the Inside Out”
- Brenda Smith Myles’ book and calendar series titled “The Hidden Curriculum”.
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