Autism, Chronic Health Conditions, and the Need for Community

Article, Adult, Professional, Wellness / Health

Publish Date: January 8, 2026

Sonia Janks, Contributing Editor, with Allyson Linehan

Allyson Linehan is a Consultation & Coaching Specialist and a LifeMAP Coach at AANE. Allyson has worked over 30 years in the human service field and has a Masters in Pastoral Counseling from Boston University. She enjoys helping clients achieve their goals and dreams.

Note: The information shared here about chronic health conditions is based on personal experience and should not be considered medical advice or a substitute for professional medical diagnosis or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition.

Navigating the world of chronic health conditions is often a complex, emotional, and isolating journey. For Autistic individuals, misunderstood symptoms, long diagnostic delays, and compounded communication barriers can create a frustrating maze with few clear pathways.

Allyson Linehan is an AANE staff member, LifeMAP coach, and support group facilitator with firsthand experience managing chronic health conditions. Diagnosed with Ehlers-Danlos Syndrome (EDS) herself 20 years ago and supporting Autistic clients for decades, she will facilitate a new AANE support group designed specifically for Autistic adults living with chronic health conditions. The group aims to offer community, validation, and share strategies for coping in an environment that understands how autism and chronic illness can overlap in ways few systems are prepared to address.

Discovering the Autism–Chronic Illness Connection

Allyson’s interest in this topic traces back to her own experience with EDS, which is a connective tissue disorder that can cause widespread joint instability, chronic pain, and a host of related issues. It took her years to obtain a clear diagnosis. Allyson recalls the day when she saw a new physician. “She asked me, ‘Where are you in pain and how long has it been?’ And I said, ‘Everywhere and all my life.’” That was the first time a medical professional suggested she see a geneticist who ultimately gave her the correct diagnosis.

Diagnostic delay is not uncommon. “The average time it takes to get an Ehlers-Danlos diagnosis is over 10 years from when the person first starts looking until they get the diagnosis,” Allyson explains. For Autistic people, who frequently experience sensory or interoceptive differences (awareness and understanding of signals in the body) and may encounter communication barriers, the process can take even longer.

Moreover, there is a documented high correlation between autism and many long-term physical health conditions, such as EDS, autoimmune disorders, and gastrointestinal disorders. Many of these conditions can take months or years to diagnose. “I eventually found a support group,” Allyson recalls. “And within the support group, people were talking about the connection between autism and a lot of connective tissue disorders. That’s how I first became aware of it.” She began to see confirmation of this as she worked with Autistic clients.

Why Diagnoses Take So Long

Allyson points to several barriers in the medical system, which makes the diagnostic process so difficult. “In western medicine, we don’t necessarily put things together,” she explains. “If you hurt your ankle, they look at your ankle. They don’t look at, ‘Oh, what is the physiology of how your whole body is moving?’” This compartmentalized approach means conditions rooted in connective tissue—or other whole-body systems—often go overlooked.

Beyond structure, there is a knowledge gap. Many doctors simply don’t know much about EDS or similar disorders that do not have a clear-cut diagnostic test. “It might be a 10-minute lecture in the whole of their training,” Allyson says. It also highlights how often chronic pain is minimized or dismissed, particularly for women and Autistic individuals. “A lot of medical professionals seem to think people are making things up,” Allyson says. “They think you want medication or attention, or that it’s in your head and not in your body.”

Allyson also explains that the typical tools clinicians use—like the “1-10” pain scales—are not a good fit for many conditions and can be nearly meaningless. “That is a very useless scale,” she says. “Sometimes they’ll give you a picture of a body and say ‘mark the pain.’ I just make a circle around the whole body.”

The Overlap of Autism, Communication Differences, and Chronic Pain

One of the most significant barriers for Autistic people seeking medical support is communication. Many Autistic individuals have alexithymia, an atypical sense of internal bodily awareness that can make describing symptoms extremely difficult.

“Sometimes it’s hard to differentiate where the bad feeling is in your body,” Allyson explains. “So then you’re trying to convey that to the doctor and you say something and they’re like, ‘Well, no, you said it was over there before.’ They just want to dismiss you so quickly.”

This mismatch between how Autistic individuals experience and express pain and how the medical system expects them to communicate creates a serious disconnect. People may downplay symptoms, struggle to express urgency, or accept medical invalidation as inevitable. “It’s like one more layer of trying to convey your truth,” she says. “You’re not believed by the gatekeeper that could possibly help.”

The Emotional and Physical Toll of Navigating Complex Systems

Beyond the physical realities of chronic illness, Allyson emphasizes the emotional exhaustion of navigating medical systems—paperwork, scheduling, insurance, specialist referrals, follow-ups, and constant self-advocacy.

“That is just a logistical nightmare for any human,” she says. “Then add executive functioning issues, or not really loving talking to people on the phone. It’s easy to feel defeated.”

The worst feeling, she says, is when people internalize the belief that nothing can improve. “Not that you can’t have a bad day,” Allyson says, “but to have that feeling like there’s nothing I can do to make it better—that’s just horrible.”

This experience directly shaped her desire to create a support group. “Not necessarily to have all the answers,” she clarifies. “Just to be able to say, ‘Yeah, that happens to me too.’ To know you’re not being ridiculous, because sometimes the system makes you feel really ridiculous.”

Tips for Navigating Chronic Health Conditions

Through her years of dealing with her own condition and working with Autistic individuals in similar situations, Allyson points to the following keys to managing chronic conditions:

Find Providers Who Listen: Allyson describes an invaluable former orthopedic specialist who took her seriously from the start. When he retired, she asked him to recommend someone new. “He said, ‘I don’t know anybody who has a lot of experience with EDS.’ I said, ‘I don’t care about that. I care about: will they listen to me and be patient?’ The education piece we can do together.”

Leaving a provider can be hard, she acknowledges, especially when insurance and logistics complicate the process, but it is essential if the medical professional is not prepared to listen. “If I can’t get the person to believe me, then I don’t even want to go.”
Document and Express Symptoms in a Meaningful Way: Allyson encourages people to pay attention to their bodies in their own way and develop personal metrics that feel meaningful. If conventional metrics like pain scales are unhelpful, functional descriptions typically convey more clarity to medical providers.

“Have your own scale that means something to you,” she suggests. “Not ‘Is the pain an eight?,’ but ‘Is the pain such that you’re not able to sleep at night?’ or ‘Is your knee so painful you can’t walk more than twenty steps?’ Things connected to your daily life make a lot more sense.”

Concrete, real-world examples help bridge communication gaps. “If you can say, ‘It hurts when I try to lift a gallon of milk,’ or exactly where and when something happens, doctors understand that much better.”
Learning to Manage Conditions Effectively: When it comes to conditions like EDS, treatment is less about eliminating symptoms and more about managing them. Allyson learned that small changes—rubber bands on doorknobs, grips on keys, carrying grocery bags on the arm instead of the fingers—can dramatically reduce strain. Learning these types of methods to alleviate symptoms can be life-altering.

Creating a Support Group That Feels Safe, Flexible, and Validating

AANE’s new support group for Autistic adults with chronic conditions does not require participants to have an official diagnosis and is designed to be accessible and participant-driven. Her facilitation philosophy centers on empowerment and safety. “My style is I try to lay the framework, and hopefully the majority of the talking is done by the people in the group,” she says. “I want people to know they will be listened to and they will be believed—even if other people have not believed them.”

She hopes group members will share with each other, forming a collective knowledge base. “It is not a group that is going to have answers for every person. I’m not a doctor and it’s not a medical advice group,” Allyson clarifies. “It’s [sharing] personal things that may or may not be helpful.”

Through listening, validating, and facilitating community, Allyson hopes the group becomes a place where Autistic people with chronic health conditions can find the support they rarely receive within medical systems. She wants people to reclaim their experiences, trust their bodies, and build strategies together by providing a haven where people are believed, heard, and understood.

As Allyson reflects, “Sometimes being able to say, ‘Yeah, that happens to me too’ makes all the difference.”