4: When A Diagnosis Is Missed For Decades

https://thenib.com/medicine-s-women-problem

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
Anna

Advertisements

3: At the Doctors: A List of Suggestions for Medical Practitioners

For autistic adults, the barriers to accessing health care can be substantial. Not only are autistic adults more likely to live in poverty and less likely to have access to quality medical care, they may face practical barriers such as lack of transportation to appointments and difficulty in navigating a healthcare system that relies heavily on verbal communication.

Those of us who do have access to health care often discover that our health care providers, including those in the mental health field, are unfamiliar with the needs and challenges specific to autistic patients. While each autistic adult has a unique set of needs, there are some accommodations that could address common challenges faced by many adults on the spectrum.

The suggestions that follow are divided into two categories: improving access to care and improving the quality of care. The access section focuses on reducing communication barriers between health care providers and their autistic patients while creating richer sources of information for both parties. The quality section focuses on practices that providers can use to accommodate differences in communication and sensory processing that autistic patients experience.

Improving Access to Care

Provide text-based communication options. Many autistic people have difficulty using the telephone. Some of us have Central Auditory Processing Disorder, a condition that makes it difficult to process speech, especially over the phone. Some of us are nonspeaking or have difficulties with speaking fluently to strangers. And some of us just find the telephone to be a challenging means of communicating. Text-based options for making appointments, asking follow-up questions and obtaining test results can increase accessibility and improve the quality of interactions with health care providers.

Provide longer appointment slots. Many autistic adults need additional processing time, particularly when communicating with people they don’t know well. Some experience difficulties with speech when they feel rushed or pressured. Others use AAC, typing to communicate, which can be a slower process than spoken communication. By setting aside longer appointment blocks for those autistic adults who need a slower-paced visit, providers can improve communication and ensure that their autistic patient’s needs are being addressed.

Create databases and directories of autistic-friendly providers. Within the medical system, there is still a great deal of stigma and misinformation about autism and autistic adults. Some health care professionals are willing to work with autistic adults to make care more accessible while others are less accommodating to neurodivergent patients. Identifying providers across all specialties who provide accessible and sensory-considerate care and creating a clearinghouse of this information via autistic-run nonprofits could reduce the number of negative experiences that autistic adults have with accessing appropriate treatment. The Autism Women’s Network has an initiative to identify sensory-considerate women’s health providers that could serve as a model for grassroots, crowdsourced directories of other types of providers.

Use personalized accommodations reports. AASPIRE is developing an interactive online tool that creates a detailed, personalized list of accommodations applicable to health care situations. When the interactive tool goes live this fall, Autistic adults will be able to complete the interactive questionnaire, compiling information about their sensory sensitivities, communication preferences and other key topics, and then receive a personalized report to share with their doctors. The AASPIRE website also has a wealth of healthcare-related information and resources for autistic adults and providers who work with autistic individuals.

Improving the Quality of Care

Use visual aids as well as verbal explanations. Many of us are visual thinkers or prefer to have visuals to support verbal communication. By using visual aids such as models, photos, drawings, videos or other graphics, health care providers can ensure that their autistic patients have a more complete understanding of procedures, tests and other medical information.

Always speak to the autistic person directly. If an autistic patient attends an appointment with a caregiver, loved one or support person, this does not necessarily mean that the autistic patient is unable to communicate their needs or make decisions about their health care. Providers should presume competence by speaking directly to autistic patients and allowing them to decide what role their support person will play. Similarly, if an autistic person communicates by typing, health care providers should address them directly and wait for them to reply using their AAC device. Because a person is nonspeaking does not mean that they do not understand speech.

Ask specific, concrete questions. Open-ended or vague questions can be challenging for autistic individuals. Concrete questions such as “When did your pain begin?” and  “Is your pain constant or does it feel more or less painful at certain times of the day or night?” are more cognitively accessible than open-ended prompts like “Tell me about your pain.”

Recognize that autistic people have atypical sensory processing. Many autistic individuals perceive pain and other interoceptive (internal) sensations in atypical ways. This may lead to an autistic patient not feeling an expected degree of pain for a condition, feeling a great deal more pain than is typical, or not being able to accurately describe the type or amount of pain they are experiencing. Autistic people may also have difficulty with sensing other typical physical sensations such as elevated heart rate or abnormal body temperature. This can create an apparent lack of certain key symptoms, potentially resulting in misdiagnosis.

Communicate in advance before touching a patient. Tactile sensitivity is common in autistic individuals and can be a significant source of stress and discomfort. Health care providers can lessen the stress of patients with tactile sensitivities by explaining where and how they will touch a patient and working with patients to minimize the impact of procedures that might trigger tactile sensitivities. For example, firm touching is usually less likely to trigger a negative reaction than light touching. In some cases, a patient may be able to mitigate the impact of touch by stimming or assuming a comforting position on the exam table (such as curling up tightly in the fetal position). However, most autistic adults will only use coping strategies like this if they have a high level of trust with their health care provider and are actively invited to do so.

Be aware that some medications can affect autistic individuals in atypical ways. Anecdotally, many autistic adults report experiencing unusual side effects of medications–including the side effects listed as “less common” or “rare”. This lived experience is backed up by research on the effects of psychotropic drugs in autistic children (Santosh and Biard, 2001). It has also been observed by some clinicians that autistic people respond differently to drugs than typical people do or that autistic individuals may require lower than usual dosages to obtain the expected results. By communicating with patients regarding the expected effects of a new prescription and following up to identify any unexpected outcomes, doctors can optimize the effectiveness of medications for autistic individuals.

Provide sensory-considerate care. Sensory sensitivities can make medical visits uncomfortable or even unbearable. This discomfort can be lessened by asking autistic patients about sensory sensitivities that may be affected during their examination, procedures or tests. A cold speculum may be uncomfortable for a typical patient but feel unbearably painful to an autistic patient with a sensitivity to cold. The scent of a cream or medication may be inoffensive to most people but make an autistic patient nauseous or dizzy. Sensory sensitivities can be managed but they aren’t something that an autistic patient simply “get over” or ignore. It is important for health care providers to take sensitivities seriously and work with patients to minimize or mitigate any sensory challenges that may arise during their appointment.Implementing accommodations that make health care more accessible to autistic patients can create a win-win situation by improving the effectiveness of care and enhancing quality of life for adults on the spectrum.

 

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

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