EDS and autism
hi everyone,
i’ve been in this sub for a few years as my mom and i have strongly suspected that i have EDS for several years now. i’ve been diagnosed with dysautonomia, chronic joint pain, and hypermobility, but have yet to find any providers who do anything other than ask me to stand up and touch my toes or touch my thumb to my wrist. i used to be able to do so, but have so much muscle tension and stiffness these days.
i had my wisdom teeth removed in June 2025, and during the procedure, they over extended my jaw and dislocated one of my jaw discs. my mouth has had limited range ever since, and i’ve been stuck on a diet of soft foods. i already struggle with digestive issues like severe pain from bloating and diarrhea/constipation cycles anyway, so my increased food struggles have led me to lose weight and drop from almost underweight to underweight.
i’ve recently been diagnosed with autism, and have had an ADHD diagnosis since i was a kid. i’m going through autistic burnout and have had a really really hard time feeling isolated and like i have no one to talk to.
i went to high school with a girl who now has a private instagram account documenting her health journey with EDS and MCAS, something else i think i might have. she lives in the area and follows me on her main instagram account. last week i sent her a message that if she was comfortable sharing, i would really appreciate some recommendations for any doctors in our area that might be able to help me, because i’ve been struggling. she read the message and never replied, and i was hoping she was just having an off day and would get back to me, but she never replied.
struggling with being newly diagnosed with autism and experiencing autistic burnout has really affected my ability to socialize and just generally feel like a human being in a conversation, so i’m just mortified that i’ve offended her somehow when i’m just really desperate for any help at all. i understand health is personal, but she has that instagram account sharing her health journey, and i guess i thought the worst that would happen was i’d get a “sorry but no, i don’t have any good recommendations.”
anyways, i haven’t found much information on if many people have both autism and EDS, so i was wondering if anyone on here has found any resources? or maybe could just share their experiences? just feeling very confused and lonely. thank you❤️