In this episode of The Autistic Culture Podcast:
Matt and Angela get real, discussing the discrimination and marginalization Autistics face when seeking medical care. They share about the increased likelihood of dealing with sleep apnea, gastrointestinal problems, autoimmune disorders, Ehlers-Danlos Syndrome, POTS, mast cell activation syndrome, fibromyalgia, allergies, asthma, eczema, psoriasis, PCOS, Hashimotos, Lupus, and headaches…but a much reduced likelihood of getting the care that’s needed.
The podcasts hosts emphasize that Autistic people often suffer from medical gaslighting and discrimination when seeking treatment. Doctors frequently dismiss or downplay their symptoms. Autistics may struggle to get medical providers to listen to them and understand them due to differences in communication styles. They advise bringing an ally to appointments when possible.
Matt: Because again, if you don't refer to the doctor as yes, yes, sir, yes, ma'am, doctor, this, this, then they're going to treat us poorly because they're going to dislike us and give us second tier treatment. And that sucks. That is discrimination.
Angela: Right.
Matt: And that discrimination leads to the poor diagnoses, leads to not listening to us, leads to dehumanizing us, because if we don't treat them like an authority, they won't treat us like a person. And of course they blame us for it.
Building accepting, informed medical practices and facilities run by and for Autistic people is a critical need which is why Matt is working to establish an culturally competent Autistic health center in his home-state of Kentucky.
They recommend Autistic adults self-educate on conditions affecting the community and learn how to self-advocate. Support groups to validate experiences and build resilience are also important for avoiding Autistic burnout.
The hosts aim to raise awareness of disproportionate health struggles faced by Autistics while affirming disability justice, neurodiversity, and Autistic pride. Accurate diagnosis and treatment are vital for quality of life. Fully including the perspectives of Autistic individuals is key to addressing systemic medical barriers and building acceptance.
This episode is a special tribute to an Autistic friend of the show who recently passed away, in part because of the difficulties Autistic people face in traditional medical institutions.
What’s your experience as an Autistic person in an allistic-centric healthcare system? Tell us about it in the comments!
Show notes and resources:
What is EDS?
What is MCAS?
POTS
The POTS Facebook Group
Listen to related episodes:
Want some basics on Autistic Culture? Listen to Episode 23: Dimensions of Autistic Culture
Or try: Episode 36: Bad Autism Diagnosis and Episode 14: Autistic Medical Needs
Check us out on Instagram
Find us on Apple podcasts and Spotify
Learn more about Matt at Matt Lowry, LPP
Matt’s social media: Autistic Connections Facebook Group
Learn more about Angela at AngelaLauria.com and Difference Press
Angela’s social media: Twitter and TikTok
TACP’s Autism-affirming TeePublic merch shop
*Note: Transcription technology is still new on this platform. We are aware of the gaps and errors in the transcript and are dedicated to editing it for accuracy as soon as the new technology allows. We appreciate your patience as we work to expand accessibility as quickly as we are able.
**TACP recognizes that ABA for autism is harmful to Autistic mental health. We reject the use of ABA therapy and pathologizing language like Autism Spectrum Disorder (ASD) and associated functioning labels. To learn more, please listen to: Episode 20: Sesame Street is Autistic and Episode 24: The Trouble with Temple Grandin.
Episode 14: Autistic Medical Needs