4: When A Diagnosis Is Missed For Decades


How many volumes the pictures and captions in the link speak… I’ve been that patient, as many AS women have. And when the diagnosis that the above patient was needing all the time was finally made, it wasn’t a rare nor obscure condition, but one well known and easily tested for. Three members of my family had undiagnosed coeliac disease for decades, and each presented for decades with an array of characteristic symptoms. One underwent intrusive abdominal surgery because of the missed diagnosis of coeliac and misdiagnosis of other conditions, and when those investigations were negative, she was regarded as “the problem” rather than her ongoing symptoms. Finally a doctor “got it” – and did a test for coeliac which was positive. But this was after years of having her experiences of her own body and her perceptions invalidated, discounted, trivialised or ignored. What does that do to a patient?

There is some suggestion in the research on co-morbid conditions that thyroid, coeliac and immune conditions are more common in the AS population. Some researchers know this, and some of us know it. We are waiting for medical practice and the awareness of medical practitioners to catch up, but sadly it has been my experience that 1) doctors are uninterested in the particular medical needs of AS population and 2) hold a common attitude founded on a belief that physically, we are just the same as neurotypical patients. That misconception has held back the research shift to looking at the potential whole body impacts of AS for decades, and the researchers who have gone ahead of the herd and publish research evidence are routinely ignored by medical practitioners and medical schools.

Whether this is ignorance, or the ongoing dominance of myths, or a lack of interest in or understanding of AS by medical practitioners is not clear; there is a terrific need for research to establish the status quo, to investigate what belief systems dominate at the service delivery end of medicine, and how this impedes or impacts on AS people as patients. Personally, I think the ignorance is an example of what others have termed “the tyranny of normal” where everything is tailored to meet the needs of the normative population. Those with different needs are an inconvenience, a nuisance, and if given recognition at all it is generally delivered in a negative frame.

Although the girl in the link doesn’t present as AS, (I don’t know her) the parallels seemed very stark to me, and I have heard that story a lot from other AS women. The sadness I felt for her is acute. To have your illness missed and misdiagnosed is harmful; but to have your self and your perceptions cut to some Procrustian size to fit a false, sexist and ageist heuristic/stereotype is devastating in a different way, one that is much harder to heal from. Only support, understanding, validation and time can do that.

Wishing you wellness and understanding in all medical encounters


Author: health matters for aspergers syndrome women

Based in New Zealand. As a senior woman now aged 69, I grew up in an era when professional and public ignorance of Asperger's Syndrome was total, and people on the ASD spectrum were often misdiagnosed and badly treated because doctors did not understand the ASD is a neurological condition, a neurodiverse difference, not a psychological illness. I am interested in the lived experience of AS people. ASD is not a set of tickboxes in some diagnostic manual of dubious validity which change every few years. ASD is as fundamental a part of people on the spectrum as neurotypicality is to neurotypicals. I live in the hope of better outcomes for all people on the spectrum, while speaking from the Asperger's Syndrome part of it.

One thought on “4: When A Diagnosis Is Missed For Decades”

  1. Anna, your blog will soon be added to our Actually Autistic Blogs List (anautismobserver.wordpress.com). Please click on the “How do you want your blog listed?” link at the top of that site to customize your blog’s description.
    Thank you.
    Judy (An Autism Observer)


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