Clinicians must put more effort into autism-specific medical care
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. Not because potentially effective treatments don’t exist — they do — but because none are accessible to an autistic person with his sensory and developmental traits.
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.
The pain from my 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. It is, ruefully, possible that he 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. As we began learning more about autism through autistic sources and also — though he 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.
He has since seen an armada of specialists, 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.
And this is specifically what I mean when I beg for better accommodations in medical care: Because of his disabilities, my son cannot comply with many of the testing or diagnostics they want to order, and he cannot tolerate standard solutions for his headaches, such as mouth guards or Botox injections. Instead, he must settle for over-the-counter painkillers, which are neither sufficient, nor a reasonable long-term solution. He deserves effective health care solutions, and so do his autistic peers with chronic untreated conditions.
I am not alone in my frustration over the lack of appropriate care for patients like my son. Yes, autistic people are more likely to need accommodations for routine care such as shots or blood draws, or specialty care such as sedation for dentistry. But they are also more likely to have atypical or paradoxical reactions to medication, such as getting sleepy from stimulants or amped up on decongestants. They are less likely to be able to communicate symptoms in ways non-autistic people will understand, because of challenges with interpreting their own sensory and emotional signals. All of these factors, when not accommodated for or understood, can compromise care.
