Through consultation with a steering group of autistic adults
I updated “Wanted: psychologists, psychiatrists, neuropsychiatrists, and neurologists who…” with selections from “SQUIDALICIOUS: My Comments to the September 2018 IACC on Autism and Health Care Issues”.
Both formal research, and autistic people’s own reports, clearly show that autistic health concerns-including mental health issues-are too often dismissed or misunderstood, and that autistic people are also more likely than the general population to have co-occurring health conditions.
It is only through participatory autism research that we have become aware of matters like the crisis-level rates of suicide and suicidal ideation in autistic people, while studies of commonly self-reported but poorly studied and understood co-occurring conditions like hypermobility or Ehlers-Danlos syndrome are only now emerging. If we are going to properly support autistic people of all abilities to achieve best possible health outcomes, our health care initiatives need autistic guidance.
I would like to see more of this autistic-informed policy integrated into autism education for medical professionals, for matters like accommodations during patient-professional interactions. We need more medical personnel to understand why autistic people-even those technically capable of holding a conversation-can have a debilitating fear of needles, may have difficulty with sensory-intensive procedures like MRIs or EEGs, may have trouble answering questions or self-reporting accurately due to processing, alexithymia, or interception issues, and may have meltdowns when overwhelmed. We must develop strategies for ensuring those autistic individuals are accommodated, so they can receive the care they deserve without being written off as “difficult.”
I would like to see more medical professional awareness about the sensory needs of autistic people both in general, and in medical environments. When my son was recently in the ER at Stanford University, he was given access to a lovely sensory “Imagination Station,” and in addition the flickering fluorescent lights in his room were turned off. Many autistic adults who heard about my son’s experience reported that they too would like access to these kinds of sensory accommodations, but such options, even when available, are usually reserved for children.
I would like to see more outreach to medical schools and other training programs about the need for more neurologists, behavioral psychiatrists, developmental pediatricians, and registered dietitians both in general, and who understand autism specifically. These scarcity of these specialists makes accessing health care even more difficult for autistic kids and adults.
I would like to see investment in “health passports,” like those developed by the UK’s National Autistic Society, to improve autistic people’s hospital and medical experiences. I would like to see encouragement to adopt and support models like the autism and healthcare toolkits and resources developed byAASPIREandUCSF’s Office of Developmental Primary Care, in delineating compassionate, respectful, and useful best practices for patients with developmental disabilities.
I would like to see all autistic people, including those with intellectual disabilities, treated with more respect by medical professionals. Autistic people must to be able to trust the professionals taking care of them if they are to tolerate anxiety-provoking medical environments-yet too often autistic people are not even addressed during in-person conversations about their own health, or they are spoken in a manner more appropriate for speaking to A Very Good Dog (as happened to my son while getting his flu shot just this week). In worst-case scenarios, dismissive attitudes can lead to tragedy, as with the recent death of 18-year-old Oliver McGowan. These attitudes must change, because my son’s life and those of his autistic community members are valuable, and should be treated that way.
Finally, I would like to see recognition that health care access gaps are even more pronounced for autistic kids and adults who aren’t male, autistic people of low socioeconomic status, and autistic people of color, due to well-documented barriers including accessing formal diagnosis, and thus receiving proper care and accommodations. We need investment in easy-read and multilingual autism and health care information. Ideally, we also need investment in “community ambassadors” who can translate and/or advocate for people who may have multiple barriers to resources, and thus to effective self- or family advocacy.