5 thoughts on “She’s Got Asperger’s? The Underdiagnosis of Girls With AS

  • April 20, 2017 at 5:22 pm

    Thank you for post, and every one doing research like this, advocacy, and other ways of supporting the diverse ASD minority community.
    Hopefully more girls and women on the Autism spectrum will get assistance and acceptance in the future.
    The key words here are “the personality and behavioral traits associated with AS”, underlining the shallow criteria for diagnosing, also revealing a narrow mind-set that have been accepted by the testers, failing to include the personal experiences of their “test subjects” (in my opinion a horrific, dehumanizing way to refer to human persons), and focusing on superficial behavior instead of personal experiences.

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    • April 21, 2017 at 10:02 am

      I agree; my point is that the diagnostic criteria are inadequate. In the case of social reciprocity, there is a tendency to look for stereotypes and to reject women who appear reciprocal. If one really looks at their relationships or talks to the women, it is clear that there are limits on the extent to which this is true. I understand your point about the experience of the “test subject.” The problem is that there have to be “objective” criteria for including someone, and it’s hard to do that with a conversation. One solution is to use self-descriptive checklists that are quantifiable (i.e., there are cut off scores for qualifying). Those are obviously limited; some people might object to the checklist and therefore not qualify when they should. Any ideas you have about ways to include individual experience that meet the objectivity requirements of research would be terrific. I’m not a researcher, but it would be a great topic for a blog that I do publish for research groups on Linked In.

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  • April 24, 2017 at 9:08 am

    This seems to be part of the larger problem that autism spectrum disorder is so often missed by mental health professionals, unless the behaviors are stereotypical or there is severe impairment. I have seen psychologists who are not specialists in autism, never mind specialists in the diagnosis of high-functioning autism in older children and adults, rule it out in these cases, or indicate that it is “unlikely.” (To that i have to ask–If the clinician is unable to either make or rule-out a diagnosis, how are they able to determine it to be “unlikely” if there is an identified concern? In other words, they are not doing a screening, they are being asked to make the determination and if they cannot they should say so IMO. But i am not a psychologist, Would love to hear from one on this issue!) From what I have seen, if the parent seeks a second opinion, the next psychologist asks for prior records. Unless highly specialized, the new evaluation is unlikely to contradict the previous, and a self-reinforcing process is created. I suspect that eliminating Asperger’s syndrome in DSM5 may exacerbate the issue, a concern expressed by many prior to the change. Even if practitioners know that the new autism spectrum disorder category is meant to include most or all individuals previously diagnosed with Asperger’s, since the word has been retired, there is no longer support for a mental image of the prototypical member of that group. This image is essential for making mental health diagnoses, as well as the diagnosis of many physical conditions. If this is correct, one would expect this to have an increasing effect of time, although perhaps countered by reeducation and a change in the mental image for ASD, but being so broad in scope the image may be quite fuzzy. It seems to me that practitioners seem to have held onto the “Asperger’s” terminology in informal communication, even though they have changed their clinical documentation. I have not observed this to be the norm with changes in the DSM. Of course this is speculative and based on anecdotal observation. If there is any research on the issue I would be interested to learn about it. I am not an autism specialist myself and have only minimal familiarity with current research in the area.

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    • April 24, 2017 at 9:34 am

      I agree that many miss the autism diagnosis, especially with high functioning autism and Aspergers. The use of tools such as the ADOS can result in ruling out more verbal and older children. The ICD 10 still has the Aspergers diagnosis, and actually we are supposed to use the ICD 10 for insurance diagnostic codes. (I understand that Aspergers may be eliminated in ICD 11.)
      There is strong disagreement about the elimination of Aspergers in the psychiatric community. I would go so far as to suggest that many who are primarily clinicians and not researchers still use Aspergers. (I anticipate disagreement here.)
      Supporting your point, I find that when I give talks on Aspergers for mental health professionals in clinics that don’t deal primarily with this group and for school professionals, there often is surprise and a recognition of many warranting the diagnosis; patients are labeled “borderline ” and resistant, and students are labeled anxious and ODD.

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  • February 5, 2019 at 4:57 am

    Thanks, Marcia. I strongly believe my younger daughter is Aspergers. She’s now 18 and I only started suspecting this when she was about 16 – despite many clues. My eldest son and I are diagnosed (10+ years ago), so you’d think I’d be more attuned. And now that I am tuned in, it looks really obvious. However, I saw all the things she did that didn’t fit the Aspie picture… e.g. Being involved in team sports; having a large friend group; having multiple long term friends; being involved in school council; being involved in local youth council; being a quick thinker; being very social and more.

    Then when she was about 16, she told me she considered she was an introvert. And that she preferred being alone. Suddenly I started reconsidering things, considering other behaviours, obsessive and intense behaviours… e.g. I nicknamed her “Touch” when she was young because she had to touch everything, she was fascinated by the feel of everything; I remember reading to her as a toddler (her, not me) and I’d replace characters with her name and she’d get mad at me and say “Read it right, Dad!”; she’s still very pedantic about doing things the right way; has many OC behaviours; has gone thru periods where certain sounds almost cause a meltdown; suffers anxiety and meltdowns; very, very talkative ; has had intense special interests – in her early teens, could identify cars on the road better than anyone I’d known; and leaps at the opportunity to be home or away alone.

    When I think about why I missed the signs, I think the fact she spent her first 7 weeks in hospital, has had multiple surgeries, regular checkups with specialists has made her used to and comfortable dealing with strangers, and formed a socially capable person, albeit, one who still has meltdowns where she’d rather be alone for a day or two.

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