New Study Shows Cost to Body in Autism
We all suffer from information overload. It’s only natural that when we encounter yet another article, video, or resource, we naturally wonder, “What’s in this for me?” Let me spell that out.
This article focuses on key findings in autism research. If you’re not autistic and don’t know someone who is, you might be thinking that this doesn’t have implications for you.
Yet many adults now suspect that they have autism, ADHD, or AuDHD, a combination of the two. Many have loved ones with or without these diagnoses, or who suspect them. And more of us than ever teach, work, or interact with people in the neurodivergent space, which also includes bipolar disorder, OCD, and schizophrenia.
Amid all that, today’s piece likely applies to you or someone you know and care for.
The Backdrop to The Study
Autism is a genetically-rooted, human neuro-developmental variation. It begins in gestation and has a pervasive influence on development throughout the lifespan. It produces atypical ways of thinking, moving, cognitive and sensory processing, and social interaction.
The research and advocacy communities have known for over 15 years that autistic individuals have a significantly higher risk of mortality and of co-occurring mental health and physical conditions.
Epidemiological studies on the health gap for between autistic and non-autistic individuals have focused primarily on male adolescents and young adults. (This reminds me so much of the research on ADHD.)
But a study published in September of 2023 sheds light on this health gap, and I’d like to highlight that study this week.
This paper included the largest sample to date of autistic individuals across the lifespan. It involved large numbers of middle-aged and older adults as well as females, who continue to be underserved in autism research.
The study explored co-occurring physical health conditions in autism. It examined a greater specificity and breadth of physical conditions than any previous study. It offers a more nuanced look at the physical health burden carried by people with autism.
On to the results.
Organ Systems Bear The Burden in Autism
The researchers surveyed 3,657 people in the United Kingdom aged 16 years or older with or without a diagnosis of autism.
They found that autistic people had significantly elevated incidence of non-communicable conditions across all organ systems, including gastrointestinal, endocrine, visual, ear/nose/throat, skin, liver and kidney, and hematological conditions.
Let’s break it down a little further.
Autistic people were two to three times more likely to have gastrointestinal issues. Most common among these were irritable bowel syndrome (IBS), gastric reflux, GI tract hernias, ulcerative colitis, ulcers, and diverticulosis. (This supports the results of earlier studies that suggested elevated rates of gastrointestinal distress, feeding issues, and gut disorders in children and adults.)
The study also found a strong correlation between autism and celiac disease. (This adds weight to a growing body of research on gluten allergies and celiac disease in autism.)
Results showed that autistic people had elevated rates of rheumatological conditions. These include rheumatoid arthritis, osteoarthritis, and carpal tunnel syndrome.
Strikingly, Ehlers-Danlos Syndrome (EDS) was frequently reported in females, even though it was not provided as an explicit option in the survey, which required respondents to write it in a free text response box. (Multiple studies have pointed to a link between EDS and autism, due in part to co-occurring genes.)
Conditions which involve sensitization of the central nervous system, called central sensitivity syndromes (CSS), were also elevated in autistic individuals. Among these conditions are: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), TMJ Syndrome, and Fibromyalgia. This corroborates a recent study of 973 people in the Netherlands, which found that 60 percent of adults diagnosed with autism had sufficient symptoms to warrant a central sensitivity syndrome diagnosis.
The researchers also found higher incidences of visual issues such as astigmatism and blurred vision, as well as neurological conditions that included migraines, seizures (in females), and tinnitus, plus kidney and liver issues.
Importantly, the researchers performed an additional statistical analysis, which showed higher levels of disease burden across nearly all organ systems among both younger and older autistic people.
Although they not comment further on this, here’s my take: This additional analysis suggests that the increase in co-morbid conditions in middle-aged and older adults is not associated with aging itself, but with a mechanism uniquely associated with autism.
The researchers also did a network analysis, a statistical procedure that enables researchers to probe the relationships between the chronic health conditions. They found that the way medical conditions impact one another (co-morbidity) in autistic people differs from non-autistic people. To me, this points directly to a need to understand the way different systems—such as the gut or enteric nervous system, immune system, autonomic nervous system, pain pathways, and central nervous system communicate and overlap in autism.
Relational Interactions with Healthcare Practitioners
I’d like to point to a social factor that the researchers mentioned briefly in a sentence or two but did not further explore, and which rang like a gong in my mind.
Autistic people consistently report a poor quality of interaction with healthcare professionals in all roles. Individuals with autism, their families, and often their physicians point out that physicians can lack the specialized knowledge required to screen, diagnose, and refer people. Patients and their families also say that physicians need to better understand how to communicate with autistic people and accommodate sensory challenges.
According to a 2022 study, a whopping 80 percent of autistic adults reported difficulty visiting a general practitioner, compared with 37 percent of non-autistic adults. The highest barriers mentioned included:
deciding whether symptoms warranted a GP visit (72 percent)
difficulty making appointments by phone (62 percent)
not feeling understood (56 percent)
difficulty communicating with their doctor (53 percent)
the waiting room environment (51 percent)
Autistic adults reported a preference for online or text-centered appointment booking, the ability to email the impetus for the appointment in advance, the earliest or latest appointment of the day, and a quiet (read: not overstimulating) place to wait.
The Double Empathy Problem
Outdated ideas hold that autistic people have impaired theory of mind, which refers to the ability to sense the thoughts, intentions, and emotions of others. This gives the autistic person primary responsibility for the communication problem.
The “double empathy problem” is a term coined by Damian Milton, an autistic autism researcher, in 2012. It refers to the fact that communication breakdowns between autistic and non-autistic people are not due to the “social deficits” of the autistic person alone, but are a two-way issue. This echoes the neurodiversity paradigm, which holds that autistic people have a different but not inferior way of communicating.
Studies show that autistic people’s social and communication issues disappear when they interact with other people who have autism.
An innovative study headed by autistic autism researchers has made this connection more explicit. They examined the transfer of information within three groups: autistic adults, mixed pairs of autistic and neurotypical adults, and among neurotypical adults.
Notably, they found a significant decline in the retention of key details in mixed autistic-with-non-autistic groups, and a reduction in rapport.
There was no difference in the information transfer in either the autistic only or non-autistic only communication chains. These results support the fact that autistic people effectively share information with each other. It challenges the notion that autistic people lack the skills to interact successfully.
Two conclusions immediately jump out in relation to today’s focus.
The first: Just as our global community would want in the context of trauma, having more autistic researchers and medical professionals and staff would greatly improve rapport and reduce barriers to seeking and receiving care.
The second: Just as we would expect in relation to trauma-informed medical care, we can ask that medical professionals receive training in autism and other forms of neurodivergence, in order to provide better and more thorough care.
This is not too much to ask considering the marked reduction in lifespan for autistic people.
Limitations of This Study
This study remedied some of the gaps in earlier studies by including an older age range and including females. However, it was biased toward white, highly educated people and U.K. residents. Only.5 percent—half of a percent—of respondents were Black, while 6.7 percent of identified as multiracial. A full 88 percent were white, Nearly 60% had a university education or beyond.
The study addressed the gaps in research on females and older individuals, but overlooks the tremendous, long-standing gap in research on autism in people of color.
In 1989, legal scholar and civil rights advocate Kimberle Crenshaw coined the term intersectionality to highlight the way race, class, gender, and other individual characteristics and social locations “intersect” and overlap, often magnifying oppression.
Intersectionality applies to issues like trauma and neurodivergence. It happens also in autism.
There is a dearth of Black autistic people doing research in autism. Much of the research focuses on white people with higher socioeconomic status and access to healthcare. There exists a gap for people of color, both for receiving a diagnosis (this is true also for ADHD) and services.
We should care very much about these inequities. A society that centers neurotypical people and the erroneous ideal of “normal” is not a healthy one. It hurts all of us, and our loved ones.
As Black, gay, autistic scholar and multi-hyphenate Joris Lechene speaks directly and eloquently to the importance of decolonizing autism research and treatment, not just for autistic people, but for society as a whole.” “An enlightened and healthy society,” Joris says, “includes non-dominant phenotypes.”
So we would do well to ensure better healthcare, support, and resources for them.
If you’d like to learn more, we have a Masterclass on the Science, Psychology, Social Context, and Practical Tools for Neurodivergence, with 3 CEs for yoga therapists and yoga teachers:
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Sources:
Results also corroborated an earlier study which suggested that autistic: Davignon, M. N., Qian, Y., Massolo, M., & Croen, L. A. (2018). Psychiatric and Medical Conditions in Transition-Aged Individuals With ASD. Pediatrics, 141(Suppl 4), S335–S345. https://doi.org/10.1542/peds.2016-4300K
This corroborates results of earlier correlational studies that suggest elevated rates of gastrointestinal distress: Madra, M., Ringel, R., & Margolis, K. G. (2020). Gastrointestinal Issues and Autism Spectrum Disorder. Child and adolescent psychiatric clinics of North America, 29(3), 501–513. https://doi.org/10.1016/j.chc.2020.02.005. See also: Quan, J., Panaccione, N., Jeong, J., Underwood, F. E., Coward, S., Windsor, J. W., Ronksley, P. E., Gidrewicz, D., deBruyn, J., Turner, J. M., Lebwohl, B., Kaplan, G. G., & King, J. A. (2021). Association Between Celiac Disease and Autism Spectrum Disorder: A Systematic Review. Journal of pediatric gastroenterology and nutrition, 72(5), 704–711. https://doi.org/10.1097/MPG.0000000000003051. See also: Croall, I. D., Hoggard, N., & Hadjivassiliou, M. (2021). Gluten and Autism Spectrum Disorder. Nutrients, 13(2), 572. https://doi.org/10.3390/nu13020572
The correlation supports a growing body of research that explores gluten allergies and celiac disease: Croall, I. D., Hoggard, N., & Hadjivassiliou, M. (2021). Gluten and Autism Spectrum Disorder. Nutrients, 13(2), 572. https://doi.org/10.3390/nu13020572
Multiple studies have pointed to a link between EDS and autism: Casanova, E. L., Baeza-Velasco, C., Buchanan, C. B., & Casanova, M. F. (2020). The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders. Journal of personalized medicine, 10(4), 260. https://doi.org/10.3390/jpm10040260
This corroborates a recent study of 973 people in the Netherlands:
Grant, S., Norton, S., Weiland, R. F., Scheeren, A. M., Begeer, S., & Hoekstra, R. A. (2022). Autism and chronic ill health: an observational study of symptoms and diagnoses of central sensitivity syndromes in autistic adults. Molecular autism, 13(1), 7. https://doi.org/10.1186/s13229-022-00486-6
According to a 2022 study, a whopping 80 percent of autistic adults reported difficulty visiting a general practitioner: Doherty, M., Neilson, S., O'Sullivan, J., Carravallah, L., Johnson, M., Cullen, W., & Shaw, S. C. K. (2022). Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study. BMJ open, 12(2), e056904. https://doi.org/10.1136/bmjopen-2021-056904
Autistic people consistently report a poor quality of interaction with healthcare professionals: Malik-Soni, N., Shaker, A., Luck, H., Mullin, A. E., Wiley, R. E., Lewis, M. E. S., Fuentes, J., & Frazier, T. W. (2022). Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood. Pediatric research, 91(5), 1028–1035. https://doi.org/10.1038/s41390-021-01465-y
An innovative study headed also by autistic autism researchers has helped make this connection: Crompton, C. J., Ropar, D., Evans-Williams, C. V., Flynn, E. G., & Fletcher-Watson, S. (2020). Autistic peer-to-peer information transfer is highly effective. Autism : the international journal of research and practice, 24(7), 1704–1712. https://doi.org/10.1177/1362361320919286