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Diagnosis
Diagnoses are often expensive, sometimes inaccurate, and bring with them a wave of realizations that both relieve and sadden the AS individual. Many people with AS were not diagnosed and even their own parents and doctors did not realize they had it. They may have been thought of as shy or eccentric; geeky or strange. If a doctor did try to put a name on it, they were often misdiagnosed as a myriad of other things, such as ADHD, schizophrenic, depressed or dyslexic and everything else in between. Many parents of AS children were severely stressed, left wondering if they were bad parents or if their child was just difficult. The seeming contradictions between the positive traits of AS and the challenging ones can cause frustration and confusion among doctors and loved ones, to say the least. Although more and more health professionals are becoming aware of AS, not all are and there is still misdiagnosing going on today.
“My mother would haul me off to psychiatrists as a child because she knew something was “wrong” with me, but since it wasn’t in the U.S. diagnostic manual, it didn’t exist.” – Lewis
The Diagnostic and Statistical Manual of Mental Disorders (DSM) is published by the American Psychiatric Association and used by mental health professionals in the US and to some extent, abroad. Here are the diagnostic criteria for Aspergers Syndrome from the current edition, the DSM-IV-TR:
Diagnostic Criteria for 299.80 Asperger's Disorder
1. Qualitative impairment in social interaction, as manifested by at least two of the following:
1. marked impairment in the use of multiple nonverbal behaviors such as eye-to eye gaze, facial expression, body postures, and gestures to regulate social interaction
2. failure to develop peer relationships appropriate to developmental level
3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
4. lack of social or emotional reciprocity
2. Restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity of focus
2. apparently inflexible adherence to specific, nonfunctional routines or rituals
3. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
4. persistent preoccupation with parts of objects
3. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
4. 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).
5. 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.
6. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia. [RS1]
Although diagnosis is available, the cost (in the United States) may be prohibitive – from $800 and up to $2000. Even if one has health insurance—and one out of every two Americans with AS interviewed for “Working with Aspergers” did not—many insurance policies will not cover it.
Even if one can afford it, or if their insurance policy covers it, there may not be a qualified professional in their area who is able to accurately diagnose adult AS. By the time a person with AS grows up, they may have repressed a lot of the physical symptoms/traits so evident in a child. They may have learned coping skills and aversion techniques to deal with social interactions and environmental issues. Many with AS can seem ‘normal’ or shall we say ‘NT’ for short periods of time, and it is sometimes only through prolonged contact that you begin to notice something is different about them.
Even if diagnosis is procured, part of the diagnosis is based on testimony from at least one parent or family member. This too is problematic. Parents and siblings who find out that their loved one is suspected or diagnosed with AS may refuse to believe it, whether from guilt, or because they just assumed that was the child’s distinct although unusual personality. Often they have no idea how lonely and painful it was for the AS child. If the parents are or were neglectful, oblivious, extremely busy, were absent, had substance abuse issues or are in denial, it would be hard to rely on their testimony. They may just not have good enough memories to recall what their now 46-yr. old son or daughter was like thirty five years ago. An AS person may be estranged from their family or parents of adults with AS may not be alive. But some professionals insist on this being part of the diagnostic process.
Diagnosis is subjective even in the most capable hands and therefore must be conducted by someone who specializes in adult Aspergers. Even though AS was listed in the DSM-IV in 1994, professionals often still are not automatically looking to make that diagnosis or connection. [RS2] (Kirby). A doctor of psychology that I spoke with admitted she knew “next to nothing about Asperger syndrome” and she “would first try to find out if there was a personality disorder before looking into the possibility of AS.” Every local psychologist or neuropsychologist in my area who diagnosed children with AS, said virtually the same thing—either that they do not diagnose adults or that they would try but were unfamiliar with AS in adults.
There are cases of people receiving more than one diagnosis, and each diagnosis came to a different conclusion. In places where there are no free diagnoses, one would likely have to accept the results of the first, whether or not one had faith in the outcome.
Even if you do get a much-needed, long awaited positive diagnosis of Aspergers, realizing you have AS can be a very painful thing, and it can take months or years for people to come to grips with it. Although it may bring a sense of relief on the one hand, on the other it is not a pleasant thing to find out you have a neurological disorder that in many ways has sabotaged your whole life—your friendships, your romantic relationships, your jobs, and your education. It can be very painful:
“I had come a long way and I thought I was working my way to this “normal place” to be like everyone else, that I was gonna be free. I was kind of in the process of making it to being the ‘butterfly’ I was seeking to be; to getting out of the cocoon and being reborn and redefined and healthier. Then came these two words: ‘Asperger Syndrome’ and a lot of pain.” – AJ Mahari [RS3]
For many it does bring a sense of relief; they can at last put a name to, and acquire a set of tools to work with, what they have always had:
“For me, I am very glad that I do know of my "condition". It helps me realize that I have to watch for "aspie attributes" and stay aware so that I can keep my mouth shut when needed and blend in better with the world. In general, people with Asperger’s can be a little over-opinionated and/or even a little self-centered. We may not realize that people see things different than we do, and that's okay.” – Brian
“I am very glad I figured out that I had AS. A few years ago I felt completely alone, and I couldn't seem to figure out why I had so much trouble communicating and keeping friends. When I first found out about it, I felt some relief. I could no longer blame myself. I had a shift from fixing myself to accepting and coping with AS. At least I can salvage the next 30 years of my life, rather than wasting it searching for a cure for my social issues. I no longer blame society or people for some of the things that have happened to me. I know that on occasion, I must downright perplex people and cause (unwillingly) their reactions.” – Walter
For most it is a mixed blessing:
“I've always known I was different, so the diagnosis didn't tell me anything new on that score. As a child I was treated like a ghost (often I still am) but I was convinced that it was my fault. At first it was a relief to realize that my way of being was considered worthy of study and it helped lessen that feeling of being immaterial. As I've lived with it awhile I've come to see the AS diagnosis itself is a cultural artifact of neurotypical perception; the bias still shows. It's like a window into majority thinking. Therefore, I read it and still feel misunderstood but...it proves there are other people like me who are also misunderstood in similar ways. I'm not a mistake and my problems make sense.” – Allison
Even with diagnosis, the existence and exact nature of Asperger’s—i.e. whether or not it really is a form of autism, is controversial:
“I was diagnosed only a couple of years ago. Unfortunately, I’m 51 now. My psychiatrist does not believe Asperger’s is a “real” syndrome and sees symptoms as comorbid problems. I also gathered he doesn’t think the labeling is helpful.”
Asperger’s syndrome is on the higher-functioning end of the autism spectrum and there is some controversy over the need to label AS as such. The terms High-functioning Autism (HFA) and AS are nearly interchangeable, but it is currently generally accepted that:
· Both people with HFA and AS are affected by the triad of impairments common to all people with autism.
* Both groups are likely to be of average or above average intelligence.
* The debate as to whether we need two diagnostic terms is ongoing.
* However, there may be features such as age of onset and motor skill deficits which differentiate the two conditions.
– The National Autistic Society, UK [RS4]
To sum up:
· diagnosis is expensive
· it is often not paid for even when insurance is present (in the US)
· licensed professionals may not be qualified to give diagnosis if Asperger syndrome is not their specialty
· diagnosis is therefore subjective due to that and further, due to the subjective nature of diagnostic methods used
· more than one attempt at diagnosis may result in different diagnoses being obtained
· a positive diagnosis is a mixed blessing.
What you can do if you think you have AS: Get an official diagnosis from a qualified professional who has made adult Aspergers their specialty.
[RS1]2000 American Psyhiatric Association 4th edition pg. 80
[RS2](http://www.udel.edu/bkirby/asperger/aswhatisit.html Barbara Kirby accessed 7/12/08)
[RS3]http://aspergeradults.ca/ajmahariaspergervideopodcast.html accessed on 2/1/09 (“Finding Out I have Asperger’s syndrome”)
[RS4]http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1049&a=3337 accessed 2/11/09 |
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