Still true: "My high-support adult autistic son’s many medical appointments have become routine. Even so, I broke into sobs during a recent session. Despite years of consults and procedures, no one seems to know how to treat his debilitating headaches." www.thetransmitter.org/spectrum/cli... 1/ - ThreadSky

shannonrosa.bsky.social • 7 days ago

Still true: "My high-support adult autistic son’s many medical appointments have become routine. Even so, I broke into sobs during a recent session. Despite years of consults and procedures, no one seems to know how to treat his debilitating headaches."

https://www.thetransmitter.org/spectrum/clinicians-must-put-more-effort-into-autism-specific-medical-care/ 1/

Comments

ssmariana.bsky.social•4 days ago

The one thing that I'd like the medical field to study is insomnia and sleep disorders in autism. When the autistic cannot sleep, nobody in the family can sleep. We've been sleep deprived for more than a decade at home and it's taking its toll for autistics and non-autistic family members alike.

ssmariana.bsky.social•4 days ago

And please, don't suggest melatonin, weighted blankets, music, background white noise, or this or that other thing. We've tried it all and some things work today and not tomorrow and again next week. So no, this goes way beyond that. We need thorough studies and solutions.

ssmariana.bsky.social•4 days ago

We had to go the non-traditional route at home for constant headaches and chiropractic care was the only thing that helped. If sensory is not an issue, have you guys given that a try?

frozenpypes.bsky.social•6 days ago

Sorry to be so presumptuous, but there been some success recently using Botox to combat headaches

larreau.bsky.social•6 days ago

Adding here in case anyone finds this relevant:

Australia has recently banned Botox for all under 18s. (This is ableist in my opinion.)

However for headaches and bruxism etc (both common in Autistics) neurologists are still allowed to deliver Botox to under 18s.

poliscimonica.bsky.social•7 days ago

YES! This x 1000. My son had a sleep study last night. Needless to say, it didn’t go well with all the blinking lights. Seriously?! There has to be a better way.

helenangel.bsky.social•7 days ago

See if they can do an at-home sleep study. Unfortunately the equipment itself can still cause some sensory issues but it’s significantly better overall in a familiar environment. I’m autistic & have narcolepsy so I’ve had multiple sleep studies done.

poliscimonica.bsky.social•7 days ago

I think that’s the next step …. But we all need to recover from this one first 😭 (my autistic son was also born w Down syndrome so that makes it a little more complicated)

shannonrosa.bsky.social•7 days ago

Not because potentially effective chronic headache treatments don’t exist — they do — but because none are accessible to an autistic person with my son's significant sensory and developmental traits. 2/

shannonrosa.bsky.social•7 days ago

I am begging the autism research and clinical community: Please put more efforts into autism-specific medical accommodations and training so that people like my son can get the medical care they need. 3/

shannonrosa.bsky.social•7 days ago

 The pain from my autistic son’s headaches significantly disrupts his life. It limits his ability to participate in daily activities and compromises his coping threshold. The headaches are chronic and sometimes occur several times each day. 4/

shannonrosa.bsky.social•7 days ago

It is, ruefully, possible that my autistic son has always had these headaches, but that when he was younger and we were interpreting his autism through an applied behavior analysis lens, we considered his pain episodes “autistic behaviors” rather than distress. #BetterWaysThanABA 5/

shannonrosa.bsky.social•7 days ago

As we began learning more about autism through autistic sources and also — though my autistic son is still minimally speaking — as his ability to communicate improved, it became clear that our otherwise cheerful and affectionate teenager was in agony, not “acting out” because of autism. 6/

shannonrosa.bsky.social•7 days ago

My autistic son has since seen an armada of specialists for his headaches, from ENTs to neurologists to dental surgeons and beyond. And most of those specialists — thoughtful and caring professionals all — have thrown up their hands and declared defeat or passed him on via yet another referral. 7/

bpsabelhaus.bsky.social•4 days ago

My own selective mutism prevented diagnosis until I was stuck in another burnout. The amount of academic papers, the language I've learned, the communication barriers due to outdated policies and failures to accommodate policies due to ignorance of our needs has blown my mind.

silvaro1969.bsky.social•6 days ago

Hi Shannon, I will take a wild guess and say that you are clearly autistic yourself. Did you already know?

shannonrosa.bsky.social•5 days ago

I hang out with a lot of autistic people with a lot of different personalities and profiles and have observed how they experience the world, and while I may have some traits, I do not share the same intensity or combination of traits that would qualify me for a diagnosis.

silvaro1969.bsky.social•5 days ago

You write with the same thought and detail and vocabulary and style as a healthy atypical - it is who atypicals are - healthy and well. And if it is the case that you do not hear that innuendo and allegory is the art at the heart of every conversation, you have an autistic heart.

silvaro1969.bsky.social•6 days ago

I am sorry to hear that your son is autistic with disabilities - it is all too common for autistic's autistic children to have disabilities, which is largely because autism is called a disorder, so no one is looking for why perfectly healthy autistic fetuses/babies are developing disabilities❤️

silvaro1969.bsky.social•6 days ago

The most difficult thing for healthy autistics to cope with is society's complete refusal to explicitly teach innuendo and allegory, so many adult autistics do not even know that tit is sin every conversation.

silvaro1969.bsky.social•6 days ago

If this was something you did not know, I am happy to talk - no neurotypical will because of an instinct to keep innuendo quiet, which I think legitimately could be called a deficit or a disability.

jcontraire.bsky.social•4 days ago

One more thing to try:

I had headaches and migraines for years. Nothing doctors tried helped.
At some point I started having slightly elevated blood pressure, and I was put on a blood pressure med. My headaches are mostly gone now, but if I forget my med, the headache is brutal.

maaikeverbruggen.bsky.social•4 days ago

Great article, and i wish you and Noah proper treatment and reliëf

emilyrose.bsky.social•3 days ago

Bookmarked this for later cause a committee I chair is currently working on healthcare accessibility for IDD ppl as one of our priority focus areas, and I want to share it with that group.

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