2: Communication Challenges In the Quest for Medical Care

In theory the process of the medical encounter is a simple one:  the patient has a message for the doctor, who has a key (medical knowledge) to understand what the patient’s message means, then treatment can proceed if or as needed.  Yet on ASD forums, AS women regularly report struggles to be heard and taken seriously, mostly in emergency department situations, but also in general practice.  A common and very concerning theme of those reports is that the process of discounting started very soon after the AS patients arrived, before any comprehensive assessment had even begun.  I have had the same experience in ED situations, and welcome input on your experiences.  Lynne Soraya’s account of medical discounting particularly resonates very much with me, and you can access it at:

As the actor playing Alan Turing observed, everyday conversation comes with built in “codes”, which are intuitively decipherable to neurotypicals.  AS people have to inject many additional steps into every conversation with a neurotypical person in order to meet NT expectations (and avoid stigmatising or dismissive reactions).  As AS women, we know from experience that this is a very energy intensive process which requires intense concentration; the facial appearance which accompanies the intense concentration can be misleading.  In the context of medical encounters, the intense concentration factor may be automatically misconstrued by medical personnel as anxiety.  If you are labelled as an anxious patient from the start, even when you are not, everything that follows will be distorted in some way by that initial misinterpretation.

Think about that last point for a moment, because it is relative to the important, common and mistaken assumption that AS “communication defects”, as a built-in fault in the neurology of the AS person, are  the only explanatory factor for AS/NT communication failures.   I think that is simplistic and sometimes, dangerous.  

Communication is a two way, interactive and complex process, influenced by many factors. To state the obvious, AS people prefer to communicate in AS ways and neurotypicals prefer to communicate in NT ways. It’s taken as a given (sadly) that in AS/NT communication, all attempts to accommodate/resolve the crossed messages arising from intrinsic code differences are the sole responsibility of the AS person.  This is so taken for granted that almost nothing is said or written about it, even on AS forums.  What, actually might be involved for the AS person continually forced to make those accommodations is neither considered nor studied in the NT world.  This is not surprising, because in all sections of the NT world, almost every situation of AS disadvantage/discrimination is simplistically construed as AS disability, not difference;  it is also true that many in the AS population have internalised the distortion, often in a form of self blame and self shaming (which is all too often seen on AS forums).

The Turing excerpt led me to consider that AS people have to work very much harder than NTs in the conversational process, because decoding and recoding seem to require at least five additional steps to be performed by the AS person, and performed multiple times, during the back and forth process of any NT/AS conversation:

1     Translating Input: AS person must decipher and translate NT message code into AS message code

2     Understanding and Extracting Meaning of the verbal message, excluding most non-verbal signals

3     Constructing a Response that is relevant and appropriate at first in AS message code, then

4     Translating that response into NT code, then

5     Verbalising the response while simultaneously trying to block out any triggering sensory inputs (such as the NT listener maintaining continuous eye contact, background noise).

These steps must occur under time pressure, because we know from experience that delayed responses (especially when  coupled with the very common AS avoidance of eye contact) are often viewed as suspicious and inauthentic by neurotypical doctors.  Echoes of trauma from past experiences of being disbelieved may also disrupt our responses.

Whether these theorised steps are accurate is debatable, though what is clear to me is that AS people do have to perform conversational acrobatics at rapid speed to sustain conversational credibility.   In the far more complex situation of time constraints, rapid questioning and assumptions which typify medical conversations, the ability of AS people to perform these steps fast enough and “normatively” enough can be severely compromised, and when that happens, NT doctors are often prone to apply erroneous meanings which discredit the AS patient’s basic credibility.   If a failed medical encounter reaches this stage, the distressed AS patient may shutdown, meltdown, or leave abruptly, with needs unrecognised and unmet.

I’ve been that AS patient, finding myself suddenly experiencing a distinct and sudden loss of energy in response to invalidation, which immediately compromises my ability to verbalise any further kind of meaningful response, even in AS code;  I temporarily lose the ability to focus if met with abrupt and mistaken assumptions.  Many AS women have been that patient, and will be again.  I wonder if some AS women develop a state of  “learned helplessness” after multiple experiences of invalidation;  possibly some give up on seeking medical care temporarily or permanently.   To be not believed is perhaps more painful for AS women, given that we tend to value honesty so highly.  Discounting invalidations not only endanger our health, they also wound us in a deeply personal way.  Further damage is done if we default to blaming ourselves for these particular communication failures.

I suspect that the huge energy demands that it takes to sustain “code deciphering” day after day is a strong contributing factor to the “autistic burnout” which so many AS people seem to experience in midlife, sometimes accompanied by a mysterious fatigue that doctors can find no obvious cause for in laboratory blood tests.  No blood test will provide external evidence of AS burnout, and the assumption that AS burnout is exactly the same phenomenon as burnout experienced by neurotypical patients seems to be entrenched in current medical thinking and practice.  Stress is a factor for both, though the huge energy demands of performing the code deciphering process for decades may relate far more acutely to the descent into midlife burnout for AS women.

Heuristics – the rule of thumb type thinking which helps medical practitioners make quick decisions – are similarly assumed to work with the same validity for different populations, but I doubt this.  Until and unless we make our voices heard and our experiences understood, the one-size-fits-all assumptions will complicate each of our medical encounters in some kind of way.

I know there are some more enlightened doctors who strive to accommodate AS patients, but they are a very rare breed in my experience.   It would be interesting and enlightening to hear their impressions of the factors that complicate our medical journeys.  I hope this will happen on the blog in future.

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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