Believe the autistic person when he tells you how he is experiencing sensory input. However improbable, however vastly different from anything you might perceive this may be, it is absolutely clear that many autistic people process senses very different from the PNT.
The privilege of being oneself is a gift many take for granted, but for the autistic person, being allowed to be oneself is the greatest and rarest gift of all.
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.
I did another pass on this piece about neurodiversity in SpEd classrooms, tempering the tone, and making collaborative gestures. There are many folks wanting to do better with not enough of anything, particularly here in Texas.
Packing conflicting sensory needs into a room is a guarantee of feedback cycles and meltdowns. Zone thinkers need peaceful places where they can get in their heads and maintain high memory states. They also, sometimes, need more social campfires and watering holes where they connect ideas and find collaborators with complementary strengths.
Caves, campfires, and watering holes. I wouldn’t and couldn’t work at a place that didn’t provide these zones-both online and in meatspace. I couldn’t work at a place that didn’t have chill rooms for sensory and social management. I don’t even bother with conferences that don’t provide these.
How are kids—less practiced at coping, passing, and masking, during the most stressful and shame-sensitive periods of life—supposed to put in a full working week without even the basics expected by many office workers? Kids, like adult creatives, are human with human needs.
We leave so many minds out. We have forgotten much about children, learning, and being human.
People all over the world know these things about children and learning, and interestingly, they are as workable for learning how to design software or conduct a scientific experiment or write an elegant essay as they are for learning to hunt caribou or identify medicinal plants in a rainforest.
But we don’t know them any more.
Source: A Thousand Rivers — Carol Black
I added a selection from “Ann’s Autism Blog: Safeguarding and Church – An Informal Guide” to “Eye Contact and Neurodiversity”.
Autistic people may not give eye contact. They can either hear, or look, but not both. It is not a sign of guilt or unwillingness to engage.