Anne Delery McWhorter
Anne Delery McWhorter. RileyRoo Photography

Emerging research suggests that Long COVID may exacerbate neurological symptoms in individuals with pre-existing Autism Spectrum Disorder (ASD). This connection that intertwines immune dysfunction, neurological symptoms, and genetic predispositions has profound implications for how treatment, access, and advocacy are addressed. Anne Delery McWhorter is one of the few sounding the alarm.

As the founder of Quiet Calm, LLC, a company dedicated to developing sensory solutions for individuals with invisible disabilities, McWhorter has always been an advocate for neurodivergent individuals with understanding the constantly evolving genetic links between high intelligence, rare genetic mutations, and how these formerly known as "rare genetic conditions" are disproportionately linked to those battling the life-altering consequences of Long COVID. A former software engineer, geophysicist and sedimentologist, physics lecturer, technical writer, and lobbyist, she brings a multidimensional perspective.

McWhorter was nominated for the congressionally mandated presidentially appointed steering committee by the United States Department of Health and Human Services to direct policy and resources on Long COVID. Her resume includes high-level contributions to disaster relief efforts and public health initiatives, notably through her work with the American Red Cross and FEMA. Through her work, she has supported 1.7 million families living with Autism globally and 90,000 families living or surviving domestic violence in the United States. McWhorter's efforts to deliver and educate communities on the use of sensory therapy interventions during natural disasters set a precedent for how neurodivergent needs can and must be integrated into crisis response models.

It's worth noting that McWhorter's professional and personal journeys are interwoven with the issues she champions. Self-identifying as neurodivergent and formally diagnosed with autism through genetic testing, she's open about having an IQ score in the top 0.1% of the population. Her early academic trajectory and later professional achievements reflect this.

By age 20, while pursuing her undergraduate degree, McWhorter led the Louisiana State University physics tutorial lab, participated in what would later become a Nobel prize-winning particle collider project, and transitioned seamlessly from academia into high-stakes roles in energy, advocacy, and healthcare systems. During this time, she was also the student head of an international geology project under the world-renowned geologist, Dr. Arnold H. Bouma. All of this unfolded while navigating a rare genetic immune deficiency. Because the deficiency was not diagnosed, she was unaware that she had children, and her son was born with the same condition. This incurable condition requires them to undergo monthly antibody infusions derived from tens of thousands of plasma donors, simply to maintain a functioning immune system. Her path, then, isn't just one of advocacy. It's survival.

It's hardly surprising that COVID-19 changed McWhorter's health forever. "After contracting the virus, I experienced brain lesions, temporary loss of speech, novel blood clots, loss of swallowing, and debilitating neurological symptoms," McWhorter shares. "They're so severe that creating a grocery list was impossible for me."

Eventually, her own pursuit of experimental treatments helped restore higher-level cognitive functions. However, her infection continued to come at a cost. McWhorter's body's thermoregulation failed, a side effect linked to the hypothalamus, meaning that even mild overheating can now trigger a full-blown crisis.

"I still have to constantly self-regulate my environment to stay alive and functional," McWhorter states. She had to do whatever was needed to push forward with research, speaking engagements, and policy work. This lived experience makes her one of the most important figures speaking on the overlap between Long COVID and neurodivergence. Previously, very rare genetic conditions are no longer considered rare, and are forever linked to neurodivergence and Long COVID. "Very rare diseases," such as Mast Cell Activation Syndrome (MCAS) and Ehlers-Danlos Syndrome, are now so well known that they commonly appear on social media. Knowing these implications are staggering for the long-term response and dedication of resources, nationally and internationally, she aims to share her insights regarding the matter.

Emerging studies now confirm what McWhorter began observing years ago. People with autism and those with other neurodivergent conditions like ADHD are disproportionately affected by Long COVID. The symptoms in neurodivergent individuals tend to be more severe, more persistent, and more difficult to treat. Researchers suggest this may be due to shared factors such as immune dysregulation, baseline inflammation, and complex neurological and developmental profiles, which are traits already prevalent among individuals with autism.

McWhorter also points to the correlation between higher IQ and increased likelihood of autistic traits. "These same genetic and neurological profiles that drive exceptional intelligence increase vulnerability to Long COVID," she states. "If we lose this segment of the population, we're decimating our future inventors, scientists, engineers, artists, the people who solve problems others can't. And I'm not exaggerating. It's economics."

McWhorter is a systems thinker who has learned from years of legislative work that ethical arguments, while valid, rarely move policy on their own. What moves policy is return on investment. "Failing to treat and accommodate neurodivergent individuals with Long COVID is both immoral and economically disastrous for all of humanity," she adds.

The conversation becomes even more urgent. Recent proposals to cut insurance reimbursements for certain medical treatments that represent some of the most promising interventions for both Long COVID and autism could have catastrophic ripple effects. "I've done the math. Of the 17 services listed in the proposed national cuts, at least five are currently among the best available treatments for a variety of different conditions that disproportionately affect neurodivergent individuals and Long COVID," McWhorter states.

McWhorter stresses how devastating this is. "We're not talking about discomfort," she says. "We're talking about whether someone can swallow food, regulate pain, or even remain conscious throughout the day." She goes further to argue that cuts to these treatments could set back public health by decades and lead to long-term economic stagnation. "A society that fails to support its most vulnerable is a society that fails everyone," she remarks.

Currently, the average waiting list to see a specialist is about 2-3 years, and an average Long COVID patient needs to see 8-9 separate specialists, and then even then, the interventions between patients are still within the same 5-7 protocols. In this case, what's the solution? McWhorter proposes fast-tracking training programs designed specifically to treat Long COVID. "I'm not suggesting a full medical school overhaul," she clarifies. "I'm talking about targeted certification programs that can rapidly produce specialists who understand how to treat these complex cases."

These programs would be autism-informed, neurodiversity-competent, and medically rigorous. McWhorter argues that funding for such programs would pay for itself within 6 months to a year by reducing disability rates, restoring people to the workforce, and enabling the very innovation the world depends on.

McWhorter shares a message of warning and hope: "We have the opportunity right now to lead the world in treating Long COVID. If we act fast, we can save lives and build a healthier, more resilient population. If we don't, we risk losing an entire generation and the brilliance that comes with it."

Within this lost generation, the potential to affect another generation is there as Anne will continue to fight not just for herself, but for her genius-level, academically brilliant, immunodeficient, neurodivergent son. "All that I do, all that I have done, is for my son."