Autism Rarely Travels Alone: A Late-Diagnosed Woman’s Perspective

Publish Date: January 8, 2026

Amanda Sue Jasper

About the Author

Amanda Sue Jasper (She/Her) is a late-diagnosed Autistic who is Chronically ill and Disabled. She has a BA in History from UNM. She spends her time playing the violin/fiddle, walking her Chiweenie Gus, and participating in the Democratic Party of Santa Fe County. Some special Interests include the Grand Canyon, Ken Burns documentaries, and the Denver Broncos.

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.

I knew I was chronically ill before I knew I was Autistic. My body failed me before my mask did.

While I am not a medical doctor, I am an Autistic, Disabled, and Chronically Ill human. At that intersection is a compassionate and empathetic person who wants to be an advocate for those with similar genetic predispositions. Co-occurring conditions are common and frequent within neurodiversity. My first-hand knowledge and a growing body of research dictate that I believe in a genetic correlation between my mental and physical afflictions and my neurotype.

In 2009, at the age of 29, I received my first life-altering medical diagnosis. I was diagnosed with Rheumatoid Arthritis (RA). It is an autoimmune condition that leaves me immunocompromised. Little did I know that it would open a floodgate of medical diagnoses. RA affects my hands and feet greatly, and my entire body subtly. Elevated inflammation system-wide causes numerous issues; RA attacks the synovial lining of my small joints. Arthritis causes severe pain in my hands and feet, specifically, but truly in my entire body. I have RA Nodules in my feet, causing imbalance and pain all the time, but especially while walking. I’ve had several of them surgically removed; however, they are notorious for returning, making permanent long-term relief near impossible. In the article “Immune Dysregulation in Autism Spectrum Disorder: What Do We Know about It?” the authors Robinson-Agramonte et al. deduce that “the current challenge in ASD lies in understanding the connection between immunological abnormalities, either as a risk factor for neurodevelopmental disorders or to devise a more effective strategy for management.”¹ The connection between Autism and immunology is only now being examined.

There is a genetic connection between Autism and the connective tissue disorder, Ehlers-Danlos Syndrome. I was diagnosed with the hypermobile type of EDS in the summer of 2014. Ehlers-Danlos Syndrome, hypermobility type (hEDS), makes my joints lax; I sublux and dislocate joints often. I have translucent skin, I bruise easily, and I am extraordinarily flexible. There is no blood test for hEDS, but there are genetic tests for other Ehlers-Danlos subtypes. In-clinic presentation, family history, and the Beighton scale are currently used, mostly by rheumatologists, to diagnose hEDS. My rheumatologist confirmed it after a series of maneuvers called the Beighton scale test. I scored 7/9.

I learned of the connection hEDS has to Autism while researching Autism to determine if I should be assessed. I was dumbfounded! I couldn’t believe it. I had hEDS, and with the studies on its correlation to Autism, it strongly solidified my suspicions of my own undiagnosed Autism. In “The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders,” Casanova et al. state, “these two conditions share considerable phenotypic overlap at various levels. Genetic data indicate similarities at the molecular, cellular, and tissue levels, as illustrated by numerous genetic syndromes with comorbid autism and hypermobility.”² Syndromic Autism is associated with broader genetic and medical issues, and I am what Syndromic Autism looks like. I was so shocked!

POTS is an acronym for Postural Orthostatic Tachycardia Syndrome, and it is also comorbid with Autism. I also have POTS. POTS is a form of autonomic dysfunction, or Dysautonomia, that affects blood pressure and heart rate. My POTS came on immediately after my first COVID-19 infection in October 2022. Racing heart palpitations after standing upright from sitting or lying down is a classic symptom. The tilt table test has been used to test for POTS, and sometimes still is. My Cardiologist performed an in-clinic test; she recorded my heart rate at rest lying down, then sitting upright, and then standing up. A POTS diagnosis is given if the heart rate increases by 30 beats per minute (BPM) or more within 10 minutes of standing upright. Mine shot up from 85 BPM to 140 BPM within 30 seconds of standing upright. Ownes et al. conclude in “Autonomic Dysfunction in Autism Spectrum Disorder,” that “Intermittent neuro-cardiovascular autonomic dysfunction affecting heart rate and blood pressure was over-represented in ASD. There is a strong association with hE-DS. Autonomic dysfunction may further impair quality of life in ASD, particularly in those unable to adequately express their experience of autonomic symptoms.”³ I am fortunate that I consider my POTS to be rather well managed, for now, through hydration, salt intake, and propranolol.

Autism often coincides with gastrointestinal issues. I’ve been diagnosed with Hiatal hernia, Small Intestinal Bacteria Overgrowth (SIBO), Microscopic colitis, Fructose Intolerance, Redundant colon, and don’t forget Gastroesophageal Reflux Disease (GERD). My GI issues started long before I was aware of them. I have not been diagnosed with Crohn’s or IBS (irritable bowel syndrome); however, those are also comorbid with Autism. I was tested for Gastroparesis, but I currently do not have that. In “Gastrointestinal issues and Autism Spectrum Disorder,” the authors Madra et al. asserted in the summary that “It has become increasingly clear that GI problems are common in the ASD population and also morbidity causing. It is thus critical that clinicians understand the different presentations of GI distress in this population so efficient treatment and/or referral to a gastroenterologist can be implemented.”⁴ The prevalence of GI issues and Autism makes the autistic person’s experience so difficult.

In 2024, I underwent an elimination diet, shamefully under-supervised medically, without much guidance besides a 30-minute Zoom call with a nutritionist who did not help me understand the nuances of this dietary protocol; thus, my Autistic nature took over, filling in the gaps with extreme, unnecessary levels of restriction. I took the elimination diet to a LITERAL level and eliminated calories, carbs, gluten, sugar, lactose, and artificial sweeteners ALL AT ONCE. And it was only supposed to be for 4-5 weeks, but I could not stop, so this went on for 3.5 months. I became malnourished, causing me to have brittle teeth- my front 2 top teeth both cracked vertically. I had to readjust my POTS medication because the lack of nutrition put me into a POTS flare-up. I learned the hard way that carbs affect hormones, and Perimenopause reminded me that I am in a biological transition. The lack of medical guidance and supervision tailored to my specific autistic needs was grossly responsible for a cascade of more health issues. The impediments I face due to communication issues are abundant.

As a chronically ill, late-diagnosed Autistic female, I’ve collected a host of diagnoses. A combination of both psychiatric and physical ailments, I have kept an ongoing list of my diagnoses since 2009. My spreadsheet includes the name of the disease or disorder, the diagnosing doctor, and the date of diagnosis. That helps me remember everything and helps future new providers. I also use the spreadsheet as a quasi-tangible thing to fend off gaslighting myself. Internalized ableism is a form of self-discrimination rooted in shame that I often struggle with. In addition to the spreadsheet, I take well-organized, typed, and printed notes for each appointment. That helps me stay on track as well as helps me remember all the things I came to that doctor to address. I take a copy for myself, but also print a copy for the doctor to keep. Sometimes they are attentive to the notes I give them, and sometimes not.

This overabundance of medical conditions affects my life in so many known ways, and I’m certain in so many unknown ways, too. Living with multiple medical conditions has quietly reshaped every part of my life, often in ways others don’t see. My daily routine revolves around managing symptoms, appointments, medications, and fatigue- leaving little energy for work, relationships, or personal goals. The constant physical discomfort is compounded by emotional strain- stress, anxiety, or grief for the life I once envisioned for myself, all while financial pressures and reduced independence add further heft. Over time, these overlapping challenges limit my opportunities, strain my connections, and make even ordinary moments feel sisyphean.

I’ve been misdiagnosed; my mask, so good and so involuntary, made pinpointing what was causing a certain set of symptoms impossible. I’ve been misunderstood; my communication style was dismissed when an ER doctor suggested I “speak normally,” when I already was. I’ve been marginalized; my lived experience has been minimized, my worth scrutinized, and my inclusion unimportant.

Navigating the medical system after learning that I am Autistic has been different, in that I now know why I think and behave in certain ways, allowing me to have grace and compassion for myself in instances where my traits get in the way of socio-normative expectations. However, learning that I am Autistic has not brought about a different or better way of routing this huge, daunting institution that is our current medical system, as the system didn’t change when it found out I’m Autistic.

Like hEDS and POTS, numerous other conditions have a high co-occurrence with Autism, including ADHD, MCAS (Mast Cell Activation Syndrome), Epilepsy, OCD (Obsessive Compulsive Disorder), Fragile-X Syndrome, and sleeping disorders, but there are too many to list. My hope for all Autistic individuals with chronic health conditions is that they are believed, that they are supported without moral judgment, and that they can find hope without toxic positivity. Honor your energy, it’s a limited commodity!

References

¹Robinson-Agramonte MLA, Noris García E, Fraga Guerra J, Vega Hurtado Y, Antonucci N, Semprún-Hernández N, Schultz S, Siniscalco D. Immune Dysregulation in Autism Spectrum Disorder: What Do We Know about It? Int J Mol Sci. 2022 Mar 11;23(6):3033. doi: 10.3390/ijms23063033. PMID: 35328471; PMCID: PMC8955336. https://pmc.ncbi.nlm.nih.gov/articles/PMC8955336/#sec1-ijms-23-03033

²Casanova EL, Baeza-Velasco C, Buchanan CB, Casanova MF. The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders. J Pers Med. 2020 Dec 1;10(4):260. doi: 10.3390/jpm10040260. PMID: 33271870; PMCID: PMC7711487. https://pmc.ncbi.nlm.nih.gov/articles/PMC7711487/#abstract1

³Owens AP, Mathias CJ, Iodice V. Autonomic Dysfunction in Autism Spectrum Disorder. Front Integr Neurosci. 2021 Dec 30;15:787037. doi: 10.3389/fnint.2021.787037. PMID: 35035353; PMCID: PMC8756818. https://pmc.ncbi.nlm.nih.gov/articles/PMC8756818/

⁴Madra M, Ringel R, Margolis KG. Gastrointestinal Issues and Autism Spectrum Disorder. Child Adolesc Psychiatr Clin N Am. 2020 Jul;29(3):501-513. doi: 10.1016/j.chc.2020.02.005. Epub 2020 Apr 2. PMID: 32471598; PMCID: PMC8608248. https://pmc.ncbi.nlm.nih.gov/articles/PMC860824Sisyphean8/#S1