Chronic Pain Partners introduced the topic of neurodivergence and Hypermobility Spectrum Disorders (HSD) and Ehlers-Danlos Syndrome (EDS) in our first newsletter this year (January 2025), but autism has been shown to co-occur with EDS for many years, with an early published case dating back as far as 1993 and another in 2011. Neurodivergence comprises a whole host of conditions including, for example, Tourettes, Obsessive-Compulsive Disorder (OCD), Attention Deficit Hyperactivity Disorder (ADHD), dyslexia, dyspraxia and autism. This article focuses on the co-occurrence of autism and EDS/HSD, one of the more prominent forms of neurodivergence in the community.
The Facts: EDS & Autism in Numbers
A 2016 study from Sweden found that people with EDS were 7.4 times more likely to be autistic than controls. Another 2020 study of the link between Joint Hypermobility, Dysautonomia and Pain by Csecs, Iodice, Rae et al. found that 51% of the neurodivergent group was hypermobile, compared to just 20% of the general population and 17.5% in the comparison group, which is more than double the comparison group. And the neurodivergent group was 4.51 times more likely to be hypermobile than the general population, with greater odds in females than in males.
What is autism?
Autism, formally called autism spectrum disorder in medical literature, is a neurodevelopmental disorder with a widely varying presentation across the three levels currently described in the DSM-V. Levels I, II and III are intended to represent the least to the most amount of support needed. Today, most cases of autism can be recognized by age two. However, some people categorized as Level I may get missed until later in life. The rise of the internet and social media has helped to increase awareness of all the types and presentations, helping some who were missed in youth to get diagnosed later. Whereas some people never receive a diagnosis.
The terms “autism” and “autistic” are thought to have been first used in 1911 by Eugen Bleuler to describe children who seemed out of touch with reality, maybe even schizophrenic, and later came to mean the opposite: totally self-centered or focused, and not “lost in imaginary thought”. Leo Kanner is widely credited for popularizing the term in 1943 after publishing the first systematic study of “infantile autism” in the US although he and others conveniently omitted Grunya Sukhareva’s seminal work on autism from the 1920’s. Hans Asperger ultimately described a subset of verbal children who lacked mainly in social skills but could speak and write just fine in most cases. But this was still called autism until Lorna Wing’s work emerged calling it Asperger’s Syndrome in the 1980s. She adopted Asperger’s observations and the diagnosis of Asperger’s syndrome was published in the DSM III in the 1990s. This was removed later and folded into Level I Autism since the DSM-V was published in 2013. Asperger’s Syndrome was no longer offered as a diagnosis after 2015, but many with the diagnosis retain it to this day.
How does autism present?
Autism is characterized by atypical sensory profiles (either hyper-sensitive in one or more areas, or hypo-sensitive, and any combination thereof), along with a proclivity to keeping routines and order whenever possible, and difficulty with social interactions and reciprocity.
Autism comes with a lot of co-occurring conditions – both mental and physical, which all lend to the widely varying presentations seen across “the spectrum”. This can include things like dyspraxia (issues with motor control, gross or fine), apraxia of speech (trouble speaking, but not necessarily understanding language), dyslexia, synesthesia, OCD, Tourettes, ADHD, and more.
And more can include Hypermobility Spectrum Disorders and EDS. One of EDS’s comorbid conditions, mast cell activation syndrome (MCAS) has been noted by Theoharis Theoharides, MD, Ph.D. as co-occuring in autistic children, and he even developed a nutritional supplement containing the bioflavanoid quercetin benefiting the autistic community by acting as a mast cell stabilizer, thus lowering inflammation levels.
How broad is the spectrum?
Autistic people vary widely, in support needs and levels as well as in sensory profiles. This may lead to opposing needs even within the same family. For instance, one member may have extreme sound sensitivity from misophonia, while another is sensory seeking and may like to chew crunchy foods, or one likes it hot, but another needs it cooler. Autistic people also have as widely varying views, beliefs and politics as everyone else.
Until the last ten years or so, most people only understood autism to be what was portrayed in popular films such as the 1988 hit Rain Man starring Dustin Hoffman about an autistic savant and his brother. Unfortunately, media representation of autism up to this day is often misleading and inaccurate. For instance, the majority of autistic people do not have savant syndrome like the main character in Rain Man. Some have average or poor memories with no other intellectual disability, others are intellectually disabled, and others may not exhibit any stereotypical or noticeable stimming movements in public. Some have high support needs, requiring a carer to attend to them at all times while achieving high academic marks. Others can navigate the world on their own, but may need help with schoolwork, cooking, cleaning or bathing. And others may be hyperverbal most of the time – speaking a lot and even quickly – but can still lose access to words and speech when overly stressed. Stereotypes lend to limited views about how autism can present. And support needs and behaviors can change with time and environment.
Autism was primarily studied in boys and young men early on. As a consequence, girls and a lot of people with lower support needs and less stereotypical behaviors or other genders may not have been diagnosed at all, or not until much later in life as awareness has spread.
The prevalence of autism
The prevalence of autism was first thought to be rather rare, at only 4.5 in 10,000 per Victor Lotter in 1966, and “Boys were more common than girls in a ratio of 2.6 to 1”, but it is now seen to be increasingly common, at 1 in 36 children per the CDC since 2023, with girls quickly catching up. It is not clear what all accounts for this vast increase, but the advent of the internet and social media have certainly helped in spreading awareness in later years. As well as the broadening of the diagnostic criteria to include better masking and passing autistics (deemed Level I), such that more people can be diagnosed than before.
Girls and women are recognized to be higher masking, that is, more likely to blend in and not stand out as much as autistic boys and men. ADHD is a fairly common co-occurring condition as well, and may account for some late diagnoses also, if someone presents more strongly as ADHD than autistic. The two conditions do rather balance each other out to some extent, with the autistic side craving routine and order, and the ADHD side seeking novelty and adventure. One may not present strongly in either camp, but somewhere in the middle of this blend lending to the confusion and missing diagnoses.
Managing EDS & Autism
Having EDS/HSD alone is a lot to handle, with joint instability, pain, random subluxations, tears, sprains, and more. Our loose joints may lend to clumsiness and poor proprioception as well. Add in being autistic with or without ADHD, and we have our hands full just managing our wonky bodies and sensitive neurology. Further, some autistic people are hyper-sensitive to pain while others may be hypo-senstive to pain. And we may not all express pain in the same way or as expected. Or we may lack the interoception or words to describe what we are feeling fully and properly.
All of the above can cause extra medical confusion when trying to sort out what is wrong in the clinic. But, once sorted, and proper therapy and support provided, we can often participate in school and work life quite well.
Accommodations for autistic people
Someone with higher support needs may need 24-hour supervision to keep them safe, and help them conduct activities of daily living, for instance, with bathing, grooming, eating, and sleeping. Some autistic people need Augmentative and Alternative Communication devices (AAC) such as letter boards, iPads, tablets, pointing sticks, speech-to-text devices, and more. Others may need extra reminders of transitions, well in advance to stay on schedule. Pictures or visual cues may work better than verbal or text reminders for some, but not all.
Some autistics will benefit from speech and language therapy or occupational therapy that helps to find workarounds for various tasks and tools tailored to individual needs. People with ADHD may benefit from time-tracking and task-management apps on phones and tablets. As well as colored visual calendars, and setting things like clothes and food out the night before, so they don’t have to make many decisions in the morning. Additional reminders to both stay on task, and to take periodic breaks if prone to hyper-focusing for too long may be helpful. Getting and enforcing Individualized Education Plans (IEPs) and 504 plans with schools can make a world of difference for autistic students. Especially if they also have EDS or HSD. However, this can be a lot of work for busy parents. So finding support groups of other parents who’ve “been there and done that” can really help mom and dad, too.
Caregivers should not forget to get some respite care for themselves whenever possible, especially if they are a 24-hour caregiver. We know that’s not always possible, but they should lean on their community for help with basic chores, transportation, breaks, cleaning, or shopping. Churches can provide some support for those who attend them. And school PTAs, and neighborhood groups might also help, depending on the location. Caregivers need support too.
We hope this increasing awareness of the occurrence of autism serves to better inform both educators, clinicians and parents about the challenges our children may be facing. Thanks for coming with us on this journey of discovery.
Resources:
Our introductory article from January: https://www.chronicpainpartners.com/neurodivergence-and-hypermobility-understanding-the-eds-connection/
Early German Case study of Autism and EDS from 1993: Fehlow, P., Bernstein, K., Tennstedt, A. and Walther, F., 1993. Early infantile autism and excessive aerophagy with symptomatic megacolon and ileus in a case of Ehlers-Danlos syndrome. Padiatrie und Grenzgebiete, 31(4), pp.259-267.https://pubmed.ncbi.nlm.nih.gov/8259320/
A 2011 case study connecting autism and EDS: Takei, A., Mera, K., Sato, Y. and Haraoka, Y., 2011. High-functioning autistic disorder with Ehlers-Danlos syndrome. Psychiatry & Clinical Neurosciences, 65(6). https://onlinelibrary.wiley.com/doi/full/10.1111/j.1440-1819.2011.02262.x
The 2016 Swedish study: Cederlöf, M., Larsson, H., Lichtenstein, P., Almqvist, C., Serlachius, E. and Ludvigsson, J.F., 2016. Nationwide population-based cohort study of psychiatric disorders in individuals with Ehlers–Danlos syndrome or hypermobility syndrome and their siblings. Bmc Psychiatry, 16, pp.1-7.
https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-016-0922-6
2020 Study linking Joint Hypermobility with Neurodivergence, Dysautonomia and Pain: Csecs, J.L., Iodice, V., Rae, C.L., Brooke, A., Simmons, R., Quadt, L., Savage, G.K., Dowell, N.G., Prowse, F., Themelis, K. and Mathias, C.J., 2022. Joint hypermobility links neurodivergence to dysautonomia and pain. Frontiers in psychiatry, 12, p.786916.https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2021.786916/full
The DSM-V-Tr as of February 2025: https://www.psychiatry.org/psychiatrists/practice/dsm
2015 paper showing Sukhareva’s work preceded Kanner and Asperger’s: Manouilenko, I. and Bejerot, S., 2015. Sukhareva—prior to Asperger and Kanner. Nordic journal of psychiatry, 69(6), pp.1761-1764. https://www.tandfonline.com/doi/abs/10.3109/08039488.2015.1005022
Asperger’s syndrome: a clinical account – L Wing 1981: Wing, L., 1981. Asperger’s syndrome: a clinical account. Psychological medicine, 11(1), pp.115-129. https://pubmed.ncbi.nlm.nih.gov/7208735/
A Concise History of Asperger Syndrome: The Short Reign of a Troublesome Diagnosis 2016: Barahona-Corrêa, J.B. and Filipe, C.N., 2016. A concise history of Asperger syndrome: the short reign of a troublesome diagnosis. Frontiers in psychology, 6, p.2024. https://pmc.ncbi.nlm.nih.gov/articles/PMC4725185/
Mast Cell Master Dr. Theoharides: https://mastcellmaster.com/
Understanding undiagnosed autism in adult females https://www.uclahealth.org/news/article/understanding-undiagnosed-autism-adult-females
Misophonia: https://www.health.harvard.edu/blog/misophonia-sounds-really-make-crazy-2017042111534
Rain Man movie: https://www.imdb.com/title/tt0095953/
Savant Syndrome: Treffert, D.A., 2009. The savant syndrome: an extraordinary condition. A synopsis: past, present, future. Philosophical Transactions of the Royal Society B: Biological Sciences, 364(1522), pp.1351-1357. https://pmc.ncbi.nlm.nih.gov/articles/PMC2677584/
How Autism became Autism by Bonnie Evans 2013: Evans, B., 2013. How autism became autism: The radical transformation of a central concept of child development in Britain. History of the human sciences, 26(3), pp.3-31. https://pmc.ncbi.nlm.nih.gov/articles/PMC3757918/
Grunya Sukhareva Wikipedia entry Feb 2025: https://en.wikipedia.org/wiki/Grunya_Sukhareva
Victor Lotter epidemiology of autism in 1966: https://link.springer.com/article/10.1007/BF00584048
Why autistic girls and women are missed UCLA: https://www.uclahealth.org/news/article/understanding-undiagnosed-autism-adult-females
Chronic Pain Partners Patient Guide – EDS Back to School Special – Prep for K-12, College & Accommodations:
Jan Groh, author OhTWIST Blog and co-author of the EDS Toolkit for Doctors
February 15, 2025
