Are you seeking a doctor, therapist, or other healthcare provider who understands you as an autistic adult? If you’re having difficulty finding the right fit, you’re not alone.
A report from the Canadian Academy of Health Sciences showed autistic adults have various reasons for mistrusting the healthcare system. Indigenous parents and autistic people reported experiencing race-based discrimination, autistic women shared their struggles with communication differences, and trans autistic folks discussed being infantilized or disbelieved by healthcare professionals, to name a few.
In 2021, researchers found many autistic adults don’t have a family doctor or access to dental and mental healthcare services due to high costs and/or lack of availability. The same year, othersconcluded that “publicly funded, locally-available, and culturally-responsive diagnostic, supports and services for autistic adults are essentially non-existent in Canada.”
This is even though “autistic adults have higher odds of unmet physical, mental health, and prescription medication needs, as well as higher odds of emergency room use” compared to non-autistic adults, according to a journal article.
The situation isn’t ideal, but don’t lose hope! Asking your healthcare provider the right questions is the first step to ensuring they can provide you with neuroaffirming care. For autistic adults, access challenges, communication differences, and research gaps all make a difference and need to be acknowledged.
Remember there are very few doctors, therapists, and other service providers with autism expertise across the health sector, so if it’s taking a while to find someone who answers these questions well, it’s likely not your fault.
Neuroaffirming care respects neurodivergent people and acknowledges that being different doesn’t mean being deficient or wrong. Doctors and therapists who provide it recognize that each patient’s experience is unique, so they center their agency during their work together. These healthcare professionals are also more likely to understand the complexity of co-occurring conditions, which many autistic patients struggle with, based on their existing knowledge about autism. For neurodivergent people, that understanding might lead to better health outcomes.
Questions to ask a doctor or therapist
Here are some questions you can write down or print and bring with you to your appointment:
Do you have experience in treating autistic adults?
This question will help you gauge their familiarity with the challenges and needs of autistic adults.
What do you know about autism?
How a healthcare professional defines autism will tell you much about how they see it and how up-to-date their knowledge is.
What is your approach to providing neuroaffirming care?
Understanding their approach will give you insight into whether they prioritize accommodating your neurodivergent traits
How do you include autistic patients in their treatment planning?
A healthcare professional who respects your independence and includes you in decision-making will likely provide neuroaffirming care.
How do you take feedback from your patients?
Figuring out what to do if you need more support ahead of time can make it easier if you run into any issues with who you’re seeing.
How do you accommodate sensory sensitivities in your office?
If they don’t and you have sensory needs, you know it’s not the right fit.
Do you regularly attend autism-specific training or workshops?
Keeping up to date on the latest research about autism is vital to providing informed and effective care.
How do you communicate with patients outside of appointments?
Knowing your doctor or therapist’s communication style and availability can help for times when you have questions or concerns.
What is your approach to therapies?
Many conventional therapies, like ABA, are not being chosen by independent autistic adults today because they can be non-neuroaffirming. Knowing whether or not your healthcare professional is open to other care options is important to determine your compatibility with them as a patient.
Are you aware of common co-occurring conditions amongst autistic and neurodivergent people?
They can be physical or mental. Common examples are ADHD, hypermobility, and Ehlers-Danlos Syndrome.
Coping with unhelpful experiences
Feeling affirmed by a doctor or therapist can make it easier for autistic people to be proactive about their health. However, the medical community still has a long way to go regarding advocacy and support for neurodivergence.
At AutismBC, we regularly hear from autistic adults who have had negative experiences within the healthcare system — often due to stigma, a lack of knowledge, and/or burnout among healthcare workers.
If you feel your doctor or therapist is disrespectful or dismissive in response to you asking these questions, there are some steps you can take.
Reiterate the importance of your questions, ask them why they responded that way, and if there’s a way you can have a more productive conversation. If that’s not possible, you might want to consider starting the process of finding another doctor or therapist. You can either ask other staff from the medical office if there’s another practitioner or go to a different provider altogether. Tools like the one available on Psychology Today’s website can be helpful to your search.
Remember, your well-being comes first. Don’t hesitate to advocate for yourself or bring an advocate with you to find someone who treats you with kindness and compassion. If you’re feeling any shame, consider checking out this series on reframing shameful thoughts by an autistic adult and AutismBC community member.
A lifetime of working in journalism and advocacy prepared me for becoming a content creator with AutismBC. As an autistic person with OCD, anxiety, depression, and myotonic dystrophy, I understand firsthand what it’s like to live and think differently than most, and I’m passionate about advocating for and communicating with others in the community.
I’m also a non-binary lesbian in a happy relationship. Outside of writing, I love to make music, watch horror movies, and hang out with my partner and cat.