The Autistic Conundrum
A couple of years ago I decided to tell a new psychiatrist that I was recently diagnosed autistic. I was in her office to refill a prescription for a beta blocker, and given the fact that she was a medical professional, I assumed that a detail like autism would be pertinent to my medical history. Telling her felt like the “right” thing to do: I felt comfortable with her and hoped that being forthcoming with my diagnosis would create a mutual understanding between us that would provide her with the context and information that she would need to create a higher-standard of care for me—isn’t that the point of getting a diagnosis in the first place? To have the vocabulary needed to advocate for a higher-standard of care?
She immediately perked up and asked, in an accusatory tone, why would you think that? I told her about my diagnosis and she proceeded to conduct an unsolicited, impromptu autism assessment of her own, which included invasive questions about myself and even brought into question the diagnosis of my 5-year-old autistic nephew. The psychiatrist did not care that I had an official diagnosis from a psychologist far more expert in the field of adult autism than she—nor did she care that I was confident in my diagnosis: it seemed like she wanted to size me up, to see what kind of unhinged person I was, and to put me in my place.
Weeks later, I underwent an MRI to investigate my newly onset tinnitus. Informed by my experience with the psychiatrist, I decided not to speak up about my autism diagnosis. I figured that withholding this information would spare me from skepticism, unnecessary questioning, or dismissal. Instead, I focused on following instructions and masking any signs of discomfort. This did not go well, by the time the scan was over, I was physically and emotionally drained, and frustrated that I hadn’t spoken up for myself. But then again, after the last experience, how could I?
These two equally disempowering experiences introduced me to what I now call the autistic conundrum: whether to keep my autism to myself in high-stakes situations or to intentionally disclose it. Each option has its benefits, but more importantly, both come with extreme risks.
The autistic conundrum can arise in a variety of situations: at school, on dates, with family, new friends, the list goes on. But few settings are quite as high-stakes as the medical office. It is there that health is supposed to be protected and illness is supposed to be prevented, assessed, addressed, and treated; it is in the medical office that decisions are made that will directly impact the patient’s quality and even length of life.
Medical offices are also where the autistic adults I recently surveyed reported feeling 'very uncomfortable' on average when walking into a new one. While my survey was very small, with only ten participants, the majority of issues brought up had a clear pattern: medical offices functioning under the assumption that all patients are neurotypical and have typical care needs.
This practice stems from, reinforces, and disguises medical offices’ lack of framework to accommodate their autistic adult patients. When there is no standardized system or moment set aside for adult patients (autistic or otherwise) to discuss their care and communication needs in a dignified and empowered way, the burden is successfully shifted from the practice to the patient, who will have to mask their needs and risk getting inadequate, unnecessary, or painful care. Otherwise, patients are expected to randomly–or at least it can feel like it–disclose their autism and risk catching their provider off-guard which can lead to being doubted, infantilized, or treated with condescension.
Virtually all of the participants in my small survey and autistic adults I spoke to indicated that they had delayed or avoided medical care due to discomfort or anxiety. Those who indicated that they did not disclose their autism in medical settings cited sensory overload, providers giving intense eye contact, preoccupation with masking their discomfort, trying to “people please” the provider, and presumption of competence. Those who did not or could not mask cited presumption of incompetence, being disbelieved, infantilized, or emotionally manipulated by healthcare professionals. All participants cited that they did not have enough time to process and synthesize information before the end of the appointment. The autistic conundrum almost always leads to unfruitful, stressful, and even harmful medical appointments.
Some participants had well-meaning providers, but systemic barriers—such as harsh lighting without dimming options, the inability to schedule appointments via text or email, insufficient time allocated to each patient, a lack of awareness regarding how autistic individuals may express pain differently—prevented meaningful exchange of information or accommodations from being implemented. These limitations illustrate how, despite growing awareness and increasing number of diagnosed autistic adults, the needs of autistic patients are not even an afterthought when setting up a practice.
As I write about my experience with the autistic conundrum, I can’t help but think about the reality that autistic individuals, on average, have a shorter life expectancy than their non-autistic counterparts (Hirvikoski et Al 2016). This mortality gap is often attributed to increased rates of co-occurring medical and mental health conditions, higher rates of suicide, and disparities in access to healthcare. But at its core, I think this disparity is fueled by the very issues I have described: the systemic failure of medical settings to account for the needs of autistic adults.
When providers are unprepared—or unwilling—to engage with autistic patients in a way that is affirming and accommodating, the result is often delayed diagnoses, mismanaged care, and a sense of resentment toward and avoidance of the medical system at large. The autistic conundrum is not an individual problem; it is a systemic one.
The burden of bridging the gap between autistic patients and their healthcare providers should not rest on autistic individuals, who must navigate each appointment with caution, trying to predict whether their disclosure (and to what extent) will help or harm them. Instead, medical providers, especially those with influence, must acknowledge this gap and work to close it by standardizing protocols for accommodating autistic patients and, at the very least, fostering an environment where self-advocacy is met with respect rather than skepticism.
References:
Hirvikoski, Tatja et al. “Premature mortality in autism spectrum disorder.” The British journal of psychiatry : the journal of mental science vol. 208,3 (2016): 232-8. doi:10.1192/bjp.bp.114.160192