1: Navigating The Minefield: Experiencing Medical Encounters As Asperger’s Syndrome Women

Hello, welcome and thank you for visiting Health Matters for Asperger’s Women.  I look forward hearing from other AS women as the blog progresses!  If you want to copy anything here to post elsewhere, feel welcome to do so, though please acknowledge it as sourced from here.  I sincerely hope you find something of value to your medical journey during your visits here.

All adult women, whether neurotypical or neurodiverse, seem to have experienced barriers to accessing good medical care at some time, because gender bias is a real and pervasive influence in medical decision making, which confounds the diagnostic process. The outstanding blog Heart Sisters, created by patient educator Carolyn Thomas, provides many compelling examples of missed and misdiagnosis experienced by women seeking help for cardiac issues.  It’s an exemplar of its kind.

Carolyn’s blog inspired me to create this blog, which aims to identify the dynamics, impacts and consequences of the miscommunication which contributes to poorer medical outcomes for AS women. I know that these communication difficulties and disasters also cause a great deal of unrecognised emotional pain and psychological stress for AS women, and the trauma of being trivialised, discounted, isolated and invalidated tends to be a cumulative process, making each subsequent encounter even harder to negotiate. The trauma is a disruptive force in emotionally and psychological well being; I hope in some way, small though it may be, one or more AS women will find validation here that contributes to their personal healing.  I know how repeated trauma can compromise our quality of life, self confidence, trust in others and in ourselves.

Barriers to good medical care come in both large and small varieties.  AS people often have a very strong aversion to communicating by telephone (especially calling a person they don’t know).   We prefer making appointments via the internet (thanks again, Alan Turing).  Written communication is an AS  strength, and a profound comfort zone to us.  This appears to be unknown to neurotypical people generally and the medical system we use may or may not offer user-friendly options for AS patients.  Some AS people have described long delays in seeking medical help because of the phone issue.  I think we have a reluctance to be seen “making a fuss” about something which seems to NT’s a total non-issue; we don’t tell them, because we don’t trust them to understand (guided by past experiences) that issues which seem so trivial to them, can be a source of considerable distress for us.  There are many theories about why so many AS people detest phonecalls; maybe they impair our ability to code/decode, translate, formulate and so on.   Miscommunication seems more likely to occur.  It’s a significant barrier for some AS people, only a minor annoyance for others, but almost never is phone use within the comfort zones occupied by AS women.

Many AS commentators in books, articles and blogs have written about the phenomenon of “passing”, the wilful distorting ourselves so that we present as neurotypicals.   This Procrustean feat generally begins at a young age and improves greatly over time (it never surprises me that AS people can succeed so well in acting careers, after so much practice).  For those of us who can pass, and choose to, the invisibility of our AS selves creates another barrier to appropriate care.  If we suddenly stop decide to stop passing and instead present as our authentic AS selves, we risk being labelled negatively, possibly misdiagnosed with psychiatric conditions we don’t have, and/or discounting of our AS status (the myth of autism as a male condition is still very prevalent).  If we hide behind the veneer of the passing, we risk compromised treatment and misinterpretations if we should suddenly become too exhausted or too ill to maintain its usual performance.

I hope my blog will always be a safe space for AS women to describe adverse past experiences which still affect them.  Personally, I felt isolated with this issue nearly all of my adult life. Reports from other women in a major internet forum confirm that these struggles are not unusual nor solely due to some singular personality factor of my own or theirs; barriers to good medical care are a real and systemic issue.

Carolyn Thomas’s blog illustrates that there are profound issues in the accessing care which affect NT women too; I recognise that, though I think our struggle is a harder and steeper one.   NT women as patients seek their care at least in a system designed by neurotypicals for neurotypicals.  Their struggles at some points overlap with ours, but are not the same, and our unique kinds of struggles are invisible to them.  We share the impacts of gender bias in medicine with NT women, but not much else that seems likely to be useful to us here.  So while I am sympathetic to the medical struggles of NT women, feedback and contributions from AS women are what I hope to receive here  Your personal accounts will help me as significant contributions to a greater understanding of how high the current barriers are.

We can articulate and document the issues of barriers to AS health care but to deconstruct them, I suspect that meaningful change means building alliances.  Nelson Mandela forecast (accurately) that overcoming the oppressions of apartheid would require the “building of bridges instead of walls”; so I also welcome constructive input from supportive members of the medical profession, if they are sympathetic to the aims here.   However please note that promoting a “cure for autism” is unacceptable here – Asperger’s Syndrome is not a disease in need of cure.   I highly recommend reading the outstanding book “Neurotribes” by Steve Silberman to anyone wanting more information about neurodiversity.

Wishing you great health outcomes in future! Please come again! Best wishes.

Anna

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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.

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