Chronic illness and co-occurring health conditions are a common part of Autistic experience. In this article, author Luella Wheeler shares major health challenges and explains how identifying underlying health and wellbeing needs led to a significant improvement in quality of life.

In 2020 I was in the depths of chronic illness. At times I was unable to walk or speak and was having regular severe migraines. I had chronic pain, extreme chronic fatigue, tinnitus, blurred vision, dizziness, intense brain fog, and was barely able to eat. I struggled with basic daily tasks like dressing myself and my life was very small and limited. In the years preceding I had experienced a variety of other health challenges, several of which led me to the emergency department.

Now, in 2025, I am energetic, well, and living a full and busy life.

There are many things that took me from one state to another. Recovery is part of some aspects of my health journey, and I would like to acknowledge that stories of recovery can bring discomfort for those living with chronic illness. I invite readers to take from my story what feels useful, validating, and supportive and leave what is not.

Some health professionals have described my experience as a journey “to hell and back”.

When unwell, I suffered due to a variety of symptoms, but what made it worse was the experience of attempting to seek insight and support and often being badly let down. There were many reasons for this, including the limits of diagnostic testing and a mixture of empathy and invalidation from various health professionals. I received well-intentioned but unhelpful advice from some people and judgement-disguised- as-advice from others. I also struggled with my own internalised ableism and feelings of shame. I know that many of these experiences will be familiar to those who have experienced similar health challenges. There are depths of loss, grief, trauma, and disconnection that are often not understood by those who haven’t lived through chronic illness, who often fail to imagine the extent of the impacts. I didn’t understand the extent of loss myself until I was on the other side looking back and safe enough to be able to see just how bad it had been. Even now, four years later, there are still things I’m rebuilding and reclaiming. I still have a path ahead of me.

There are a lot of things I didn’t know about myself in 2020 that I know now. The long version of the story is complex and involved years of making sense of what I was experiencing and why, trial and error, progress and set-backs. One of the most fundamental discoveries relevant to my wellbeing was finally recognising that I am Autistic. After I realised my Autistic identity and started to connect with other Autistic adults and learn our stories, I learned my lifetime of health challenges was a shared pattern through our communities. There is a devastatingly long list of health conditions that we experience at higher rates than the general population (Al-Beltagi et al, 2021; Davies et al., 2023). Healthcare systems are full of accessibility  barriers for us as Autistic people. Additionally, as patients we are often not believed or our presentation is misinterpreted. It is, sadly, no wonder we frequently have poor outcomes.

Autistic burnout is a widely shared experience but awareness of it is often limited.

“Autistic burnout is a syndrome conceptualized as resulting from chronic life stress and a mismatch of expectations and abilities without adequate supports. It is characterized by pervasive, long-term (typically 3+ months) exhaustion, loss of function, and reduced tolerance to stimulus.” (Raymaker et al., 2020, Defining autistic burnout section).

Looking back, I now see that I had cycled in and out of burnout over the course of my life in ways that had cumulatively impacted both my mental and physical wellbeing. Autistic burnout is highly interlinked with the chronic health challenges I’ve experienced. Repeated and prolonged periods of Autistic burnout took a toll on my wellbeing and created risk for developing health problems. For me, burnout included significant fatigue and more disconnection from perception of my physical self, which interfered with me being able to do things that supported my long- term wellbeing. Experiencing chronic health conditions and the ways they create stress fed into more Autistic burnout. I spent years caught up in this damaging feedback cycle, but at the time was unable to name it for what it was.

It was only last year I finally recognised that hypermobility is also a factor for me, as it is for a lot of neurodivergent people (Glans et al., 2022). Knowing I am hypermobile has given me the opportunity to adjust how I manage my physical needs and to get more appropriate advice from physiotherapists, osteopaths, and those with insight about hypermobility. I’ve had much better outcomes in the months since.

At my lowest point I concluded I may need to try to accept that pain and fatigue were going to dominate the rest of my life. But I found I couldn’t reach that acceptance without first trying everything I could feasibly do to regain some health.

I was not hopeful, but I was determined. That anger fuelled my determination.

I have been surprised, and very grateful, by how much recovery I have experienced. I recognise that I have some things in my favour, including supportive and safe whānau and a spouse by my side whose income meant we could live without me working. My background in science meant I could wade through information of mixed quality and accuracy to find what was evidence-based, low risk, and could help. I also live in an urban centre with access to medical care and options. If any one of these factors had been missing, I could be in a different position today. While I had many negative experiences with health professionals, I also had some very good ones. I have had a whole team of people providing support and care along the way and some people I’ll always be grateful to.

The things I recovered from include:

• Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) – I had this severely for two years following an infection and stressful event, and like other people with ME/CFS I had a period of chronic fatigue following Epstein Barr Virus infection earlier in my life. In my conversations with professionals and researchers about my recovery we have speculated that my community-sourced management strategy, including careful pacing within energy limits, good nutrition, and use of supplements, allowed my body to recover. More research is needed to understand the role of neutraceuticals and pacing (Maksound et al., 2021; Nilihan et al., 2023).
• Functional neurological disorder (FND) – this is a widely misunderstood diagnosis, particularly within chronic illness communities, and understandably so because it’s too often misunderstood and misrepresented by clinicians. It is a real illness and can be positively diagnosed by skilled clinicians (Richardson, 2024). I was fortunate that there is an excellent rehabilitation team in my city and I had full recovery of symptoms that had included loss of vision and loss of the ability to walk and speak.
• Migraines – I had regular, severe migraines for years and while things like sensory exposure and hormone changes could trigger them, I discovered that the underlying cause was neck misalignment and tension in my neck and jaw muscles related to hypermobility. I worked with a skilled physiotherapist and I’ve never had a migraine since. It may be that this adjustment of anatomical structure also led to improvements in other symptoms via reduced compression of cranial nerves and blood flow. The role of the neck and cranial nerves in ME/ CFS was studied by Matsui et al. (2021).

Things that are part of my life today:

• Being Autistic – I am happily and proudly Autistic and actively support my sensory needs and executive function challenges. I receive support, and live life in a way that works for me. When seeking healthcare I’m now aware of the accessibility barriers I have to navigate.
• Hypermobility – I have yet to receive a formal diagnosis but I have a team who accept hypermobility is a factor and modify their approach to take it into account. I use support garments when necessary, and I put a lot of work into doing exercise to improve joint stability. I have learned better ways to approach stretching and the release of muscle tension that don’t destabilise my joints. The Muldowney exercise protocol has been particularly helpful (Muldowney & Muldowney, 2015).
• Scoliosis as part of hypermobility – I am working to improve core strength and symmetry to reduce pain and muscle tension.
• Asthma – I have a good asthma plan that I built with a community asthma nurse and I have worked on my breathing pattern with a respiratory physiotherapist.
• Sleep apnoea – I sleep with a CPAP (continuous positive air pressure) machine.
• Perimenopause – managed with menopausal hormone therapy. I was fortunate to be at a good baseline of wellbeing when I started to notice symptoms because it’s possible I wouldn’t have attributed them correctly had I still been experiencing chronic illness.

Te Whare Tapa Whā

Wellbeing for me does include a lot of managing and looking after myself via a medical approach, but in reality my wellbeing is experienced by and drawn from my entire self. Connecting with both my Māoritanga and takatāpuitanga has also been essential to having an ongoing sense of wellbeing. I find Sir Mason Durie’s Te Whare Tapa Whā model very useful for thinking about my whole self within my context.

Taha tinana

• pace and rest that is right for my way of being Appropriate approaches for hypermobility Management plans for chronic conditions (asthma, sleep apnoea)
• nourishing kai
• rebuilding a safe connection and trust between self and body, becoming a good kaitiaki of my tinana

Taha hinengaro

• knowing and affirming my identity Trauma healing via various modalities Self-compassion and pragmatism

Taha whānau

• authenticity in relationships
• being safe to be myself with whānau and friends Connecting with other Autistic people Connecting with all my communities
• having wonderful and kind people in my life

Taha wairua

• being at home within my takiwātanga, takatāpuitanga, and Māoritanga
• connection with reo and mātauranga Māori Connection with te taiao
• acknowledging wairua and mauri

Taha whenua

• deepening connections with whenua
• knowing the stories of my iwi, hapū and tīpuna Strengthening a sense of belonging
• time in te taiao
• Hi 5 wellness plan
  A Hi-5 wellness plan is a guide in Easy Read format to help you think about your health and well-being. It focuses on five important parts of wellness, based on Te Whare Tapa Whā
  In a book written for clinicians who work with Autistic women Sarah Hendrickx (2015, p.199) writes: “I have never yet met an [Autistic woman] whom I believe to be fabricating their health concerns or making an unnecessary fuss. If anything, the opposite is true: these women are often just getting on with life in considerable discomfort and pain, without seeking medical help.” What I have observed of myself, and among my Autistic peers, is a tendency to endure and tolerate things far beyond what many people would. When we do seek help it is often desperately needed.
  Navigating life as an Autistic person is not always easy and we so often do it while managing other challenges. This can mean we carry a heavy load. I long for a world where Autistic health needs are well understood, where none of us end up so unwell, where we don’t have to fight so hard to be believed, where support is available and easy to access, and where understanding and compassion flow to us freely.

Kotahi karihi nāna ko te wao tapu nui a Tāne.

The creation of the forests of Tāne comes from one kernel.

Start small and grow from there.

References:

Al-Beltagi, M. (2021). Autism medical comorbidities. World Journal of Clinical Pediatrics, 10(3), 15-28. https://doi.org/10.5409/wjcp.v10.i3.15

Davies, C., Moosa, M., McKenna, K., Mittal, J., Memis, I., Mittal, R., & Eshraghi, A. A. (2023). Quality of life, neurosensory disorders and co-occurring medical conditions in individuals on the spectrum, with a special focus on females diagnosed with autism: A systematic review. Journal of Clinical Medicine, 12(3), Article 927. https://doi.org/10.3390/jcm12030927

Glans, M. R., Thelin, N., Humble, M. B., Elwin, M., & Bejerot, S. (2022). The relationship between generalised joint hypermobility and autism spectrum disorder in adults: A large, cross-sectional, case control comparison. Frontiers in Psychiatry, 12, Article 803334. https://doi.org/10.3389/fpsyt.2021.803334

Hendrickx, S. (2015). Women and girls with autism spectrum disorder: Understanding life experiences from early childhood to old age. Jessica Kingsley Publishers.

Maksoud, R., Balinas, C., Holden, S., Calbanas, H., Staines, D., & Marshall-Gradisnik,

S. (2021). A systematic review of nutraceutical interventions for mitochondrial dysfunctions in myalgic encephalomyelitis/chronic fatigue syndrome. Journal of Translational Medicine, 19, Article 81. https://doi.org/10.1186/s12967-021-02742-4

Matsui, T., Hara, K., Iwata, M., Hojo, S., Shitara, N., Endo, Y., Fukuoka, H., Matsui, M., & Kawaguchi, H. (2021). Possible involvement of the autonomic nervous system

in cervical muscles of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). BMC Musculoskeletal Disorders, 22, Article 419. https://doi.org/10.1186/s12891-021-04293-7

Muldowney, K., & Muldowney, K. (2015). Living life to the fullest with Ehlers-Danlos syndrome: Guide to living a better quality of life while having EDS. Outskirts Press.

Burley, J., & Harris, J. (Eds.). (2002). A companion to genetics. Blackwell.

Sanal-Hayes, N. E. M., Mclaughlin, M., Hayes, L. D., Mair, J. L., Ormerod, J., Carless, D., Hilliard, N., Meach, R., Ingram, J., & Sculthorpe, N. F. (2023). A scoping review of ‘pacing’ for management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): Lessons learned for the long COVID pandemic. Journal of Translational Medicine, 21, Article 720. https://doi.org/10.1186/s12967-023-04587-5

Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., Kapp, S. K., Hunter, M., Joyce, A., & Nicolaidis, C. (2020). “Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: Defining autistic burnout. Autism in Adulthood, 2(2), 132–143. https://doi.org/10.1089/aut.2019.0079

Richardson, M. (2024). Nocebo hypothesis cognitive behavioural therapy (NH-CBT) for the treatment of functional neurological symptom disorder (Record identifier 9926503776701891) [Doctoral dissertation, University of Otago]. Otago University Research Archive. https://ourarchive.otago.ac.nz/esploro/outputs/doctoral/ Nocebo-Hypothesis-Cognitive-Behavioural-Therapy-NH-CBT/9926503776701891

Luella Wheeler is a late-identified Autistic adult who has lived through severe chronic illness and is currently living well, actively managing health conditions, and passionate about better health outcomes for all Autistic people in Aotearoa.