Thread by @shannonrosa

Let’s talk about autism and health care, shall we? (Yes, this is going to be a thread.)

First of all, we all need to acknowledge that autistic people as a community and a population are badly served by the current state of health care and supports.
#Neurodiversity
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Both formal research & autistic people's own reports 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. 2/

It is unconscionable for our autistic & disabled community members to receive improper and insufficient health care. @HonTonyCoelho wrote about Patients Harmed by 'Cost-Effectiveness' Measures in 2017: realclearhealth.com/articles/2018/… 3/

@HonTonyCoelho We also know that currently, as @public_rep noted just two days ago, "Medical rationing policies have disproportionately impacted Black people with disabilities, who have higher rates of #COVID19 infection and hospitalization.”

centerforpublicrep.org/news/resolutio… 4/

@HonTonyCoelho @public_rep Thing is, most approaches to autistic health care are are financially irresponsible, as the proactive & appropriate health care autistic & disabled people currently AREN'T getting is demonstrably more cost-effective than the reactive or emergency care they tend to get instead. 5/

@HonTonyCoelho @public_rep How can we improve health care matters for autistic people?

I would like to see more autistic-informed health care policy. the participatory health care research in the journal Autism in Adulthood journal is a good place to start:

liebertpub.com/doi/10.1089/au… 6/

@HonTonyCoelho @public_rep Only through participatory research have we become aware of the crisis-level rates of autistic suicide/suicidal ideation, while studies of commonly self-reported but poorly studied & understood co-occurring conditions like hypermobility or Ehlers-Danlos are only now emerging. 7/

@HonTonyCoelho @public_rep 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. 8/

@HonTonyCoelho @public_rep 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. 9/

@HonTonyCoelho @public_rep 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…

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@HonTonyCoelho @public_rep And we need more medical personnel to understand why autistic patients may have trouble answering questions or self-reporting accurately due to processing, alexithymia, or interception issues, and may have meltdowns when overwhelmed. 11/

@HonTonyCoelho @public_rep We must develop strategies for ensuring those autistic individuals are accommodated during medical appointments and procedures, so they can receive the care they deserve without being written off as "difficult.” 12/

@HonTonyCoelho @public_rep I would like to see more medical professional awareness about the sensory needs of autistic people in medical environments. When my son was in the pediatric ER, he was given access to a sensory “station,” and the flickering fluorescent lights in his room were turned off… 13/

@HonTonyCoelho @public_rep …Many autistic adults who heard about my son's good ER 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. 14/

@HonTonyCoelho @public_rep 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. 15/

@HonTonyCoelho @public_rep The scarcity of autistic-informed medical specialists makes accessing health care even more difficult for autistic kids and adults. 16/

@HonTonyCoelho @public_rep 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. 16/

I would like to see more efforts like the autism and healthcare toolkits & resources developed by @aaspireproject & UCSF’s Office of Developmental Primary Care, in delineating compassionate, respectful, & useful best practices for patients with DDs:

autismandhealth.org 17/

I would like to see all autistic people, including those with intellectual disabilities, treated with more respect by medical professionals. 18/

Autistic people must to be able to trust professionals taking care of them if they are to tolerate anxiety-provoking medical environments—yet too often autistic people aren't even addressed during in-person conversations about their own health, or are spoken to patronizingly. 19/

In worst-case scenarios, dismissive attitudes can lead to tragedy—as with the death of 18-year-old Oliver McGowan. These attitudes must change, because my son's life & those of his autistic community members are valuable, & should be treated that way.

autism.org.uk/get-involved/m… 20/

I would like to see more awareness in medical professionals (and documentation in research) about autistic people's increased likelihood of atypical or paradoxical reactions to medication. 21/

Not one medical professional who has prescribed medications to my son has ever ever mentioned such reactions to me, not unless I bring the topic up—and even then, many were not aware that atypical or paradoxical medication reactions are "a thing" for autistic people. 22/

I would like to see more outreach from medical professionals to autistic individuals and families about the side effects and unpredictable outcomes of routinely prescribed FDA-approved antipsychotic medications like Risperdal… 23/

…Risperdal can cause liver damage, diabetes, and unavoidable weight gain—but there are also lifestyle changes people can make that, in many, at least partially offset those effects. These discussions need specific emphasis. 24/

I would like to see outreach campaigns about the ongoing (and illegal) use of medications as chemical restraints for autistic people with behavioral difficulties. 25/

Medical professionals should be helping families understand how health, sensory, processing, & communication difficulties may be underlying “unmanageable” autistic aggression, & that in many cases accommodations & health care, not (or in addition to) meds, are what is needed. 26/

I would really like to see more emphasis on why co-occurring health conditions like GI troubles or epilepsy are not caused by autism, and why treating those conditions is not the same as “treating” autism. 27/

I would like to see firmer stances against pseudoscience approaches to autism, as these approaches dupe autistic people and their families into pursing expensive, bogus "cures," diverting both funds & focus from legitimate approaches to optimal autistic health and wellness. 28/

I would like recognition that health care access gaps are even more pronounced for autistic people who aren't male, autistic people of low SES, & autistic BIPOC, due to well-documented barriers—including accessing formal diagnosis, & thus receiving proper care/accommodations. 29/

We need investment in easy-read & multilingual autism & health care information. 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. 30/

While this list of health care needs for autistic people may seem excessive to some, it is in actuality neither comprehensive nor sufficient. However, tackling these issues would be a welcome start to helping more autistic ppl lead the happiest & healthiest lives possible. 31/31