An autistic woman’s perspective on why much needs 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 relieve it, temporarily losing track of the conversation.
“I don’t understand why you would have this kind of anxiety with this medicine,” the doctor was saying, smiling condescendingly. “I would put you on the same thing your last doctor did.”
He was referring to the prescription from the supplier before him, which, after three weeks of incapacity for work or sleep, I had stopped taking. This was the second pain doctor I had seen in my search for an autism specialist, and the visit did not go well.
“How is it going for your other autistic patients? ” I asked.
“None of my other patients had this problem,” he replied, still with a condescending smile.
“How many of your patients have had autism? »
“I’ve had all kinds of patients with all kinds of problems.”
I caught my breath. I was on the verge of tears from the stress of the mask and the 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 didn’t 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 soon after without a prescription.
This experience is not unique. Only a handful of studies exist on the treatment of pain in people with autism, and of these, almost all focus on short-term events in people with severe autism.
The limits of the medical field in understanding autism
There are a few reports of pain in high-functioning children with autism, but none of pain in high-functioning adults. Nor is there a single study of how autistic people of any age, anywhere on the spectrum, respond to prescribed pain medications. I go to doctor’s appointments without any scientific basis to show how I differ from non-autistic pain patients.
I tell doctors I have autism, but in many cases, like with this last doctor, it works against me. They decide I’m not trustworthy (since I’m clearly not autistic) and reject me altogether.
Studies have shown that people with autism who mask their autism do better when it comes to developing relationships, working outside the home, and managing day-to-day affairs. This masking is a mentally draining task, however, and it has a psychological impact.
Always hiding 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 themselves. They are considered autism “success” stories, and the effort it takes and the price they pay go unnoticed.
Due to autistic stereotypes, few people outside of the autistic community understand that most autistic people don’t look like Rainman or the Good Doctor. For this reason, autistics who do not hide their autism are seen as rude, selfish, and even mean. But when they mask themselves, they aren’t believed when they say they have autism, and their autism issues aren’t taken seriously.
Lack of Medicaid for people on the spectrum
I had recently been put on Medicaid and my pain doctor, who was sensitive to my autism, did not accept it. So began my search to find a provider that accepted both Medicaid and autism, a search marked by disbelief, condescension, and dismissal.
After this debacle, I called three more practices; none accepted Medicaid. At this point, I had been living with severe pain and side effects for almost two months, and I just didn’t have the strength to keep pushing back. I contacted my old pain doctor and made an appointment. It was only then that I was again prescribed the correct medication. I had to pay out of pocket, but luckily Medicaid covered the cost of the drugs themselves.
This experience has taught me that I need to bring support with me when I need to see a doctor, including a lawyer who can join my appointments via videoconference and an official letter from my psychologist explaining that the treatments that interfere with the management of my autism are not viable options.
In the absence of stereotypical autistic appearance and action, telling a provider that our child (or we) has autism is not enough. We can be in disbelief or suspected of ulterior motives, and even among the providers who believe us, few understand what autism really is and how to take it into account when prescribing treatment.
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Steps to Take When Seeking Medical Care
I recommend that parents of autistic children and individuals with autism take these steps themselves when seeking medical attention:
- Bring a letter of support
- An official letter can make a big difference, whether it comes from a therapist or a social worker. It will reaffirm that you are not a doctor-buyer 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 needs to be right in front of you during the exam
- Bring a lawyer
- Parents should insist that they be in the exam room with their child, even if the child is a teenager or an adult. Likewise, adults with autism should arrange to bring a relative or friend with them, either via Zoom or in person. Having someone else there reduces stress for the autistic person and holds doctors accountable for how they treat their patients
- Be prepared to go elsewhere
- If the doctor doesn’t believe you or think autism requires specialized care, look 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 people with autism, our lives are defined by the fight to be believed and understood, and sadly, the doctor’s office is no exception. It’s frustrating that in our day and age we still come up against medical providers who don’t know or care about autism, but only we can change that, even if it has to. take action one interaction at a time.
Having an autistic child and being autistic in the present is incredibly difficult. But the work we are doing now can help ensure that this is not the case in the future.
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This article was featured in Issue 123 – Autism in Girls