Autism in Women: Why Speaking to a Medical Doctor can be Hard

You dread going to the doctor’s office, fearing they will not understand what you are trying to say.

You know your physical ailments have been minimized in the past, what can you do to make this time different? As a woman, you feel invalidated in the doctor’s office, and as an autistic woman, even more so. Are there any providers who can help you get support with the physical ailments you are dealing with while accounting for autism in women?

As a therapist, my specialty is not in physical ailments. But, I have found some helpful supports you can build in before your next doctor’s appointment. They can help you be heard and validated by your medical provider. Going to an appointment with a game plan makes a huge difference. Especially vs forcing yourself to go and then shutting down halfway through the conversation.

Autistic Women Commonly Have Other Medical Conditions

When you have autism as well as a physical or mental health condition, it’s called a “co-morbidity.” This sounds depressing, but it only means you have two conditions presenting at the same time. For example, did you know people with autism are 1.8 times more likely to have asthma and food allergies than neurotypical people? Based on my professional experience, it seems that autistic women tend to have the rare side effects of medications, rare diseases, complex medical profiles, and autoimmune disorders that are incredibly difficult to diagnose. Doctors tend to be quite uneducated about autism and neurodiversity. Most doctors know even less about autism and co-morbid medical conditions. This can lead to a lot of pain from having your symptoms dismissed or misheard.

Not feeling heard or listened to hurts.

It hurts a lot when your symptoms are dismissed or passed on as being something minor. Especially when you know there is something more going on with your body.

You may have felt invalidated, dismissed, or gaslit at previous appointments. I hear this often from the autistic women I work with in my therapy groups. Honestly, it feels like virtually all the autistic women I work with have experienced severe invalidation, often to the point of trauma, at the hands of their medical providers.

You might wonder why autistic women are dismissed and invalidated by their medical providers. I think there are several reasons, including:

Doctors are not aware of autism and common co-occurring medical conditions, so they miss the red flags.
Autistic women seem to be at greater risk of rare medical conditions compared to the average population. Doctors are quick to dismiss the possibility that they might have a rare condition.
Autistic women often can experience extreme pain, but do not overtly show it through facial expressions or other body language. So the doctor thinks their symptoms can’t be all that bad.
Autistic women have learned how to mask their true self in order to survive and navigate the social world. In a medical appointment, they actually might mask or not fully disclose how they are doing, so the provider thinks they are doing better than they are.
It’s common for autistic women to learn to become people-pleasers in order to fit in. Because of this habit, they may go along with what the doctor is saying even if they disagree.
It is super common that at the first sign of invalidation by their doctor, autistic women freeze up, their brain goes blank, and they may dissociate or feel numb. This is a protective mechanism to keep them from experiencing further pain. Meaning that they go into survival mode and then try to flee. They leave the appointment as soon as they can. In doing this they are trying to stop the hurt that got stirred up by their dismissive or arrogant medical provider.

Trust Yourself

As an autistic or neurodiverse woman, you know when there is something that is not quite right with your body. Trust yourself! You know your body better than anybody else and you CAN advocate for yourself and for autism in women. Even in the intimidating space of a doctor’s office. It helps to have strategies.

Strategies

Here are a few strategies I have found to help clients when they feel overwhelmed in the doctor’s office.

Write it all down!

I find one thing which helps my clients a massive amount is to write down everything they want to say ahead of time. This way, they don’t lose track of everything in the moment. Check off each point as you discuss it with your medical provider. I have also seen clients send their notes to their doctor ahead of time. By doing so, they don’t have to worry about misplacing the notes they wrote. Plus, this way the doctor has a chance to review them before you see them. You can get them out of your head and into a safe space.

You can also bring this list to your therapist or a group session. Here, you can talk through your concerns and practice saying what you need to say and advocating for yourself. Your therapist is part of your medical team. They are there to help you learn how to negotiate these situations we don’t usually get taught how to maneuver.

Bring a Loved One

If you have a history of not feeling heard, consider bringing a family member or friend with you. With their support, you can feel more comfortable advocating for yourself. Sometimes having someone else in the room with you can have a huge impact on your ability to advocate for yourself.

You might even have your loved before the medical appointment practice coping strategies to help you stay calm and present. Maybe they can squeeze your hand in a soothing and slow rhythm to help you regulate your breathing and heart rate, and reduce tension. This can help you stay more present and reduce your fight or flight response.

Slow down, Doc!

It’s ok to ask the doctor to slow down! Or, to advocate for yourself and ask for a minute of quiet so you can process. Doctor’s can have a tendency to rush, so you might need to ask for them to slow down or pause even more than once during the appointment. That’s absolutely ok! Give yourself permission before the appointment to ask the doctor to slow down or pause.

As an autistic women, feeling pressured by your doctor to immediately respond can trigger your fight, flight or freeze response. (Usually freeze then flight). Practice asking others, such as loved ones or co-workers, to slow down or give you some time to process. This will help you when you have to advocate for yourself in the doctor’s office. Learning how to advocate for yourself in the moment goes a LONG way in many realms of life. Not only when tending to your physical health.

There is SO much to process!

Honor Your Processing Style and Sensory Sensitivities

For many women who are neurodiverse adults, trying to process facial info/expressions, tone of voice, and complex medical jargon can be overwhelming. Especially while processing your own medical information. It is totally ok to look down or focus on a set space in the room, or even stim if it helps you focus and process. Bring a fidget or comfort item with you to help you stay attuned to what the doctor is saying. Doing so can help give you the strength you need to advocate for yourself.

Consider if you have any sensory sensitivities that might get triggered at your medical appointment. Try to accommodate yourself. If the fluorescent lighting in the medical office will bother you, wear a hat or sunglasses. You can always let your doctor know about this sensitivity so they can better understand and accommodate you. If the humming or high-pitched sounds of medical equipment trigger your anxiety, wear earplugs or noise cancellation wireless earbuds. If crowded spaces bother you, ask for an appointment time when there tends to be fewer patients in the waiting room.

Walkthrough your last medical appointment in your mind. Try to remember the different moments when you felt uncomfortable. Then think about the cause and how you might accommodate yourself better next time. If you can’t think about a way to accommodate yourself, discuss it with someone you trust, like a family member, therapist, or doctor. You can brainstorm together!

Breathe and Reconnect with your Self

Do some breathing, system regulation…soften those activated parts of yourself and call forth Self-energy. It is important to stay stable in your identity when someone is pushing against it. Use self-talk and self-support in whatever ways work best for you. Take a few deep breaths, ground yourself by feeling the weight of your body in the chair or your shoes. I like to feel the texture of my socks when I am overwhelmed and need to ground myself. Wiggling your toes in your shoes can have a huge impact on how aware you are of what is going on around you.

Second Opinions are OK!

If, after practicing all these tips, your doctor is still invalidating you or not listening, it might be time to find a second opinion. I know this is scary. Finding a neurodivergent-friendly doctor is not easy. But, it is well worth the time and energy to find someone who understands autism in women. They can understand and can support you physically.

Consider Online Group Therapy in Palo Alto, CA

Having a safe space to process with a small group of other autistic adults can also help a great amount. If there isn’t a group local, there might be an online group for people with autism and the condition you are managing. Finding support for co-occurring diagnoses is difficult when you’re neurotypical. When you are neurodiverse, there is an extra layer added to it. We offer group therapy in our Palo Alto, CA office or online in California and Illinois. To start your therapy journey, please follow these steps:

Reach out to our autism therapy practice to schedule a free phone consultation
Meet with us for a 1-hour online intake meeting with an autism specialist. This will help us decide which services will be the best fit for you.
Begin receiving the support you deserve!

Other Services Offered at Open Doors Therapy

Our online autism therapy clinic offers a variety of support for neurodiverse individuals in California and Illinois. We are happy to support individuals who identify as having Asperger’s, high functioning autism, undiagnosed autism traits, and more. Please visit our Autism Resources page for info and helpful resources. We also offer individual therapy, parent counseling, and group therapy. We also offer social skills groups. These are for college students with autistic traits, young adults with autism, neurodiverse adults, women who identify as neurodiverse, a mother’s group, and an online parent support group. Learn more about our services by reaching out or visiting our blog today!

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