The COVID-19 pandemic of the last four years has had a devastating impact in exposing health disparities among people with Autism and other neurodiverse populations. As the pandemic has progressed, we have learned a great deal about how COVID-19 impacts high-risk populations in the disability community. For instance, over the last three years it has become apparent—based on research and personal experience—that people with Autism, people with intellectual disability and other neurodiverse populations are at the highest risk of long COVID complications.
Some of the things that put us at high risk of long/post-COVID complications are the following:
- Having an elevated stress response
- High rates of anxiety, depression, mental health challenges. The fight/flight response may already be elevated in both neurotypicals and people with Autism and ADHD.
- Gut issues create an imbalanced microbiome, which also applies to the rest of the world in areas of long COVID risk. One study showed gut health greatly impacts how ill one can get from COVID-19. Worse gut health was linked to more severe COVID-related issues than those with a healthy gut. In short, people with a healthy gut bounce back quicker.
- Vitamin D, Vitamin B12 and iron deficiency, either caused by medications or by food intolerances like dairy, gluten or wheat
- Immune dysregulation
- High rates of autoimmune disease. Many scientists think long COVID is an autoimmune issue. Many with Autism have higher rates of autoimmunity that often isn’t triggered until a trauma like the virus of COVID-19. It is also a myth that Autism solely affects the brain.
People with Autism and other neurodiverse populations are more likely to have health issues that are set apart by central sensation. The greater a person’s autistic traits, the more likely they are to get long COVID (defined as symptoms lasting more than 12 weeks) according to research studies. Long COVID is also linked to chronic fatigue syndrome that is often triggered by infectious disease like flu or COVID-19.
Diagnosis & Management of Neuropsychiatric Issues in Neurodiverse Populations
Many people with Autism have preexisting mental health issues that can make it hard to figure out if a symptom is due to the person’s disability or a complication of COVID-19, given that long COVID can look a lot like plain old worsening Autism, ADHD or anxiety symptoms. Based on my personal experience, it is not uncommon for doctors in Western medicine to blame symptoms or medical complaints on one’s autism or anxiety.
One study, completed in October of 2022, showed that people who had higher autistic traits were more likely to experience PTSD following COVID-19. This applies especially to women with Autism who have high autistic traits. Another important thing to note is that one can still get long COVID without ever testing positive, especially given that asymptomatic initial infections may not show up on standard COVID-19 test.
Plus many people like me can not administer at-home COVID-19 tests. It also often takes multiple tests for an accurate reading, especially for those of who are consistently double-masked up. In addition, COVID-19 may not always display as the most obvious symptoms in this population. I say this because, in August/September 2021 when the Delta variant was spreading, I tested negative for COVID-19 and never had pink eye, shortness of breath, sore throat, nasal congestion or even a cough during the initial stage.
My primary symptoms at the time included anxiety-related panic attacks, tremors, bleeding gums, red rash, TMJ, gut issues, food allergy reactions, and intense and painful muscle tension. In fact, the pain was so intense I ended up in the emergency room two times. One of those times I was given Benadryl, which gave me a reaction that caused more nervous system dysregulation.
Every doctor visit during this period came and went with no answers other than worsening B12, D, iron deficiency, high IBD markers, two elevated markers on an autoimmunity panel – but no answers. Months later, when I looked back at my elevated blood test results and searched for COVID-19 research, I read that my symptoms were consistent with moderate COVID infection, despite three PCR, RAT tests coming back negative.
Fast forward to the end of October 2023. Despite being the most masked up at the ONE HSRI conference in Cambridge, Massachusetts, I ended up getting COVID again. This time, symptoms consisted of fatigue, intense crying spells, and insomnia.
One thing that has become clear is that gut health has a major impact on long COVID risk, severity, and how fast one can recover. Gut dysbiosis and Candida overgrowth are markers for severe disease and long COVID. Many people with Autism have gastrointestinal issues like bloating, diarrhea, constipation and bloating due to stress imbalanced gut microbiome.
One of the things that triggers this among people with Autism is that many of us do not eat a wide variety of foods, and some may refuse to eat cooked veggies. COVID-19 can make this problem worse. I say this as someone who never ate cooked veggies prior to the pandemic. It’s cliché, but I’ve found it to be true that all disease begins and ends in the gut. As such, rebalancing and sealing a leaky gut can help reduce long COVID symptoms.
Solutions to Explore in Combating Long/Post-COVID Issues in Neurodiverse Populations
As we progress into the fifth year of living with COVID, we must advocate for more resources and funding to cover the economic, mental and physical fallout of long COVID and its complications. One thing people can do to make the economic cost of long COVID easier to deal with is deduct all out-of-pocket expenses on your taxes, and/or submit receipts to Social Security for those on SSI/SSDI.
We also need federal policy changes to require Medicare and Medicaid private insurances cover the cost of functional medicine. One of the great things about functional medicine is that it is focused on treating the root cause of a complication, rather than putting a band-aid on it by just using drugs to reduce symptoms.
Another policy change that is needed is the elimination of work disincentives, asset limits, and the all-or-nothing cash cliff in the SSDI and other federal benefit programs. COVID-19 has shown us that being disabled is expensive, and it’s often not something we can budget for long-term. Additionally, we must also expand paid leave and sick days for all workers. As scientists begin to conduct research into the cause of long COVID, it is essential that we advocate for studies to be focused on people with autism, developmental disabilities and other neurodiverse populations.
The lack of Medicaid/Medicare providers is a big barrier to dealing with the mental health impact of COVID-19. In the area of mental health, we must expand access to trauma-based therapies and require that more therapists and mental health providers take Medicare and/or Medicaid. We must also expand the number of neurodivergent medical providers who understand the unique challenges and needs of people with Autism, I/DD and other neurodiverse populations.
This is why we are so adamant about Nothing About us Without Us! We are not disposable. It is vital that everyone dealing with complications from COVID-19 know they aren’t alone. We are all in this together. There is HOPE!
Nicole LeBlanc is a self-advocate and disability rights advocate.