By Casey-Lee Flood, RN, HWNC-BC, NC-BC
April is Autism Acceptance Month: a time to celebrate neurodiversity, challenge misconceptions, and promote meaningful support for Autistic individuals. This includes support for your health.
As an Autistic Registered Nurse (RN), I've seen firsthand how the healthcare system often overlooks or misunderstands the needs of Autistic people. While much of the conversation around autism spectrum disorder (ASD) focuses on social and communication differences, it's just as important to talk about the physical health challenges many of us face.
Many Autistic individuals experience co-occurring medical conditions that impact their daily lives. Unfortunately, healthcare providers often misdiagnose or dismiss people because these additional conditions are poorly understood. This can make it challenging for Autistic people to get the care they need.
Raising awareness and advocating for our medical support now can help others who come after us access more comprehensive care. While you continue reading this blog, know that Autistic voices count, including yours.
What Are Co-Occurring Conditions with Autism?
Many Autistic individuals process sensory input, pain, and bodily sensations differently, which can lead to delayed or inadequate treatment. Additionally, Autistic individuals may struggle with self-advocacy in medical settings due to communication differences, anxiety, or medical trauma.
Recognizing and addressing these challenges can lead to better, more inclusive healthcare.
It is crucial to address the physical health of an Autistic person, as it is for everyone. These conditions can negatively impact anyone's quality of life, and when you (or your Autistic loved one) are already trying to live in a world not made for you, it compounds any existing challenges.
Health concerns vary widely among Autistic individuals, but some patterns emerge more frequently within our community. Here are some key categories:
Gastrointestinal (GI) Conditions
Many of us deal with digestive challenges like chronic discomfort, irregular motility, and food sensitivities. A limited diet, a person's weight, or normalization of symptoms will make a provider not pursue any further treatment or referrals. When left unaddressed, GI symptoms can significantly impact well-being, autonomy, and self-worth.
Report any GI conditions or symptoms to your primary provider. Depending on the cause, your provider can write a referral to a nutritionist, GI specialist, psychologist, or pelvic physical therapist.
Connective Tissue & Joint Concerns
Connective tissue disorders have symptoms such as chronic pain, easy bruising, joint hyper-mobility, and fatigue. Autistic individuals often experience at least one, if not all, of these. If a provider is unfamiliar with connective tissue disorders, your symptoms are likely to be considered daily aches and pains, leaving you without any support or relief.
These issues may affect mobility, endurance, and the ability to perform daily care and physical activity. Recognizing these patterns can help Autistics seek accommodations, pain management strategies, and supportive interventions.
Immune & Autoimmune Considerations
Heightened immune responses, chronic inflammation, or frequent infections affect many in the Autistic community. Autoimmune conditions are sometimes difficult to diagnose, and the research into them is ever evolving. Some studies are suggesting further research into ASD actually being an autoimmune disorder, which could change treatments and ways to support Autistics.
If you are wondering what the research actually means for you, at this moment, it means that some of what you are experiencing could possibly be explained and supported.
Make an appointment to see your provider if you are experiencing severe fatigue, unexplained rashes, unexplained joint pain, changes in bowel habits, sensitivity to heat and/or cold, weight changes, and/or brain fog.
These are all common early signs of different autoimmune conditions, so it’s important not to dismiss them as being due to stress, working too hard, or your body just being a little off lately. Letting your provider know about your symptoms is how you help them help you.
Despite there not being any single treatments that cure most autoimmune conditions, there are still ways a provider can help you. They can focus on quality of life, any challenges you have, and on providing treatment to reduce the impact of those challenges on your daily life. Reducing the symptoms of an autoimmune condition can also significantly improve any person's quality of life.
Mental Health & Well-Being
Anxiety, depression, and other mental health concerns in the Autistic community are often due to external factors such as sensory overload, societal expectations, trauma, and lack of accommodations. These are different from some common causes in the allistic (non-autistic) community.
It can also be a sensitive subject for anyone, especially those in the Autistic community. Some have a history of incorrect diagnoses like bipolar disorder or panic attacks before being diagnosed as Autistic. It is important to remember that mental health conditions can be present in Autistic people of all ages.
If mental health is a challenge for you, please know there are individuals trained in “neurodiversity affirming” mental health care. Try searching online for such services in your area or telehealth providers. You could also ask a therapist that lists that they work with Autistic clients if they are neurodiversity affirming prior to scheduling a visit.
These individuals know how to support unique Autistic brains and help people navigate their challenges.
What Can You Do?
Most importantly, if you are experiencing abnormal symptoms or sensations in your body or mind, get help. Call your primary medical or mental health provider and schedule an appointment.
If the office says the first available appointment is far in the future, let them know you are concerned about your health and safety, if applicable. Providers sometimes have extra availability for urgent situations.
Second, take daily notes on how you are feeling. You can utilize a paper symptom journal like the one linked here. If you prefer a digital resource, try the free version of Guava. This app can help you prepare for doctor appointments by formulating questions, symptom summaries, and more into one PDF document you bring and/or send to the provider before your visit.
Having data to give your doctors helps them understand your experience and what happens between visits. Some doctors/providers will take you seriously, and some will dismiss you.
If you ever feel dismissed, kindly state your symptoms again and ask for treatment. If they continue not addressing them, insist your provider document the symptoms and that they are not treating them or ordering further testing. Then seek a second opinion or see a specialist.
Third, do one thing at a time. Remember to rest, hydrate, and nourish your body. It takes time to get a diagnosis and care. Do not overburden yourself with research every day.
Lastly, if self-advocacy is difficult, ask for help from a friend, caregiver, or family member. If you do not have support, you can look into independent living programs and any other organizations in your community that are available to assist Autistic adults. Some insurance carriers will also provide case managers for people with complex care needs free of charge.
A Note to Caregivers
For all the caregivers – spouses, friends, partners, family, whoever you are – I see you. I see your struggles and your endless fight to help your person get what they need. Just because I directed this blog mainly toward your awesome Autistic person doesn't mean this information is not for you or that I have forgotten you. You are priceless.
From Awareness to Action
As we celebrate Autism Acceptance Month, let's go beyond essential awareness and work toward tangible action. Autistic individuals deserve respectful, competent healthcare that recognizes our unique needs.
Autism acceptance means valuing the full spectrum of Autistic experiences, including the diverse health challenges many of us navigate. By increasing understanding and advocating for better care, we can help create a healthcare system that genuinely supports Autistic individuals in all aspects of life.
About the author:
Casey-Lee Flood is a Registered Nurse, Holistic Nurse Coach, patient advocate, and Autistic, ADHDer, and Disabled human. She loves to research and write about neurodiversity in ways that help her community and bridge the gap between the community and the medical providers who care for us. Casey-Lee also loves her three cats, her husband, and reading fantasy novels.
Recommended reading:
Autistic Mental Health: A Support Guide
