An autistic woman’s perspective on why there is much to be done to improve medical intervention for people on the spectrum.
My neck and arm had begun to throb, joining the sharp pain in my back, and I shifted in the chair to try to alleviate it, temporarily losing the thread of the conversation.
“I don’t understand why you would have that kind of anxiety with that medication,” the doctor was saying, smiling patronizingly. “I would put you on the same thing your last doctor did.”
He was referring to the prescription from the provider before him, which, after three weeks of being unable to work or sleep, I’d stopped taking. He was the second pain doctor I’d seen in my search for one who understood autism, and the visit wasn’t going well.
“How is it for your other patients with autism?” I asked.
“None of my other patients have had this trouble,” he answered, still with the patronizing smile.
“How many of your patients have had autism?”
“I’ve had all kinds of patients with all kinds of issues.”
I took a breath. I was close to tears from the stress of masking and being in pain, but I knew crying would make things worse. I tried one last time. “How many autistic patients have you had?”
“I’ve had all different types of patients.”
This doctor did not take me seriously, but I persisted, trying to explain how bad the anxiety and insomnia were. He interrupted me: “Your insomnia is not my problem. I’m a pain doctor, not a psychiatrist.” Demoralized and exhausted, I left shortly thereafter without a prescription.
This experience is not unique. Only a handful of studies exist on pain processing in autistic individuals, and of these, nearly all focus on short-term events in those with severe autism.
Limitations of the medical field in understanding autism
There are a few reports on pain in high-functioning autistic children, but none on pain in high-functioning adults. There also isn’t a single study on how autistics of any age, anywhere on the spectrum, respond to the medications prescribed for pain. I go to doctor’s appointments with no scientific underpinning to support how I differ from non-autistic pain patients.
I tell doctors I am autistic, but in many cases, such as with this last doctor, it works against me. They decide I am untrustworthy (since I’m clearly not autistic) and dismiss me altogether.
Studies have shown that autistics who mask their autism are more successful when it comes to developing relationships, working outside the home, and managing their daily affairs. This masking is a mentally exhausting task, though, and it takes a psychological toll.
Always hiding oneself from others increases feelings of loneliness, depression, and self-doubt. Despite this, autistics labeled as “high-functioning” are often praised for their ability to mask. They are considered autism “success” stories, and the effort it takes and the price they pay go unnoticed.
Because of autistic stereotypes, few outside the autism community understand that most autistics don’t look like Rainman or the Good Doctor. Because of this, autistics who don’t hide their autism are seen as rude, selfish, and even mean. But when they mask, they aren’t believed when they say they are autistic, and their autism-related issues aren’t taken seriously.
Lack of Medicaid for people on the spectrum
I’d recently been forced to go on Medicaid, and my pain doctor, who was sympathetic to my autism, did not accept it. Thus began my search to find a provider that accepted both Medicaid and autism, a search marked by disbelief, patronization, and dismissal.
After that debacle, I called three more practices; none accepted Medicaid. By this point, I’d been living with severe pain and side effects for nearly two months, and I just didn’t have it in me to keep pushing back. I reached out to my old pain doctor and made an appointment. It was only then that I was prescribed the right medication once more. I had to pay out of pocket, but fortunately, Medicaid covered the cost of the medications themselves.
This experience has taught me that I have to bring support with me when I need to see a doctor, including an advocate who can video-conference into my appointments and a formal letter from my psychologist explaining that treatments that interfere with the management of my autism are not viable options.
In the absence of looking and acting stereotypically autistic, telling a provider that our child (or we ourselves) is autistic is not enough. We might be disbelieved or suspected of ulterior motives, and even among providers who do believe us, few understand what autism actually is and don’t know how to account for it when prescribing treatment.
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Steps to take when seeking medical care
I recommend that parents of children with autism and autistic individuals themselves take these steps when seeking medical care:
- Bring a letter of support
- A formal letter can make a big difference, either from a therapist or caseworker. It will reaffirm that you are not doctor-shopping and that your search is focused on finding a doctor who can incorporate autism into their treatment protocol. Bring it with you to every appointment and make sure the provider reads it, even if it has to be right in front of you during the exam
- Bring an advocate
- Parents should insist that they be in the exam room with their child, even if the child is an adolescent or adult. Similarly, adults on the autism spectrum should arrange to bring a relative or friend with them, via Zoom or in person. Having someone else there lessens the stress on the autistic person and keeps doctors accountable for how they treat their patients
- Be willing to go somewhere else
- If the doctor doesn’t believe you or doesn’t think that autism requires specialized care, take your business elsewhere. There is no point in trying to convert these practitioners; it’s better to keep looking until you find someone who understands.
As parents of children on the spectrum and as autistic individuals, our lives are defined by the fight to be believed and understood, and unfortunately, the doctor’s office is no exception. It is frustrating that in this day and age, we still run up against medical providers who do not know or care about autism, but only we can change this, even if it must be one interaction at a time.
Having an autistic child and being autistic in the present is unfathomably difficult. But the work we do now can help ensure that in the future, it doesn’t have to be.
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This article was featured in Issue 123 – Autism In Girls