For 20 years, a young woman was misdiagnosed with schizophrenia, rather than the chronic inflammation in her body and brain caused by a very treatable form of atypical lupus. The correct diagnosis led to appropriate treatment and a significant turnaround in her quality of life. For those 20 years she had been institutionalized and loaded with antipsychotics and mood stabilizers to “manage” her behaviors.
My own experience also reveals a disheartening lack of progress in practical solutions for autistics like me in the past 2.5 decades, since my diagnosis as a toddler. Autism, now recognized as the fastest growing neurodevelopmental disability, stands at 1 in 36 children according to the Centers for Disease Control and Prevention (CDC).
I’m autistic with significant support needs. My limited speaking ability and my extensive sensorimotor dysregulation issues are just the tip of the iceberg. My brand of autism includes other issues such as, but not limited to, obsessive-compulsive disorder (OCD), mood regulation, health issues and attention-deficit/hyperactivity disorder (ADHD), all of which impact both my physical and mental well-being.
Within the autism community, two seemingly opposing camps have emerged—adult self-advocates influenced by historic views strongly oppose anything related to the medical model and emphasize the strengths and capabilities of individuals. On the other hand, parent groups seem to focus on medical-based solutions that address the underlying physiological and medical challenges faced by their autistic children, many of whom grow into adults with significant long-term support and health needs.
What is troubling is that many believe that it must be an either-or scenario.
The historic view of disability as a purely medical condition had resulted in segregation, dehumanizing institutionalization (like the infamous Willowbrook State School, showcased in the 2020 documentary Crip Camp), and even eugenics to prevent “defective genes” being passed on. The deeply troubling and terrible injustices of the past have led to vilification of any medical associated intervention by the disability rights movement.
The social model on the other hand was the basis of the early disability rights movement, which fought for desegregation, deinstitutionalization, and accessibility. The social model promotes the idea that disability should be understood as a form of diversity rather than a defect or deficiency. The social model advocates for changes in attitudes, policies, and environments to create an inclusive society where the disabled can participate fully and equally.
However, autism already faces the problem of diagnostic overshadowing where anything and everything is attributed to the mysterious bucket of “it’s all part of autism so live with it, nothing more need be done,” by medical professionals. Ironically, the same underlying issues would get treated if the autism label were not attached to that person.
We must dispel the notion that any medical intervention is inherently harmful. Many autistic peers I know experience chronic sleep deprivation, multiple seizures, pain, autoimmune conditions, or have to spend the entire night on the toilet due to gut issues. Many of my autistic peers engage in intense self-injurious behaviors, aggressive behaviors, and frequent meltdowns, which leave them home-bound. Living in a state of chronic unwellness is not conducive for inclusion. The quality of life for such autistics is challenging, no matter what kind of societal supports (inadequate as they are currently), or opportunities are put in place for inclusion.
The solution for such autistics cannot be like the young woman above with the liberal use of the psychotropic medications, which are unreliable Band-Aids with long-term health effects. Many of my peers in special education slowly disappeared into the black hole of being sent away to the modern day equivalents of institutions as their behaviors were no longer “manageable” at home or in a community setting. Out of sight also means out of mind for society.
The heterogeneity of autism calls for a multifaceted approach that combines strengths-based opportunities and challenges-based solutions unique to each individual.
Strengths-based opportunities are what the disability rights movement has always advocated and include education, technology, communication support, and accommodations, which have empowered individuals like myself. Such an approach allowed me access to a college education at prestigious institutes like Berkeley and Vanderbilt.
Challenge-based solutions involve researching physiology, brain biology, gene-environment interactions, biomarkers, precision medicine, sensorimotor supports, and developing long-term supports, treatments, and technologies. Such care also needs to be part of routine care and delivered in mainstream settings for autistics that need these solutions. Neglecting these challenges leads to marginalization and impedes true inclusion and belonging.
Scientists now believe that underlying autoimmune and inflammatory processes may be more common than thought earlier. Perhaps some of our issues are just a simple physiological solution away, which can mean a huge improvement in our quality of life.
To drive true progress and improve the quality of life of all autistics, we must recognize a dual based approach. It does not have to be either-or.
Hari Srinivasan is a Ph.D. neuroscience student at Vanderbilt University, an alum of UC Berkeley, PD Soros Fellow, Public Voices Fellow of The OpEd Project, NISE fellow at the Frist Center for Autism & Innovation, and selected to the NIMH’s Interagency Autism Coordinating Committee. He is also on the boards/advisory boards of DREDF, ASAN, ASA, INSAR, Duke U’s ACE, Autism Europe and The Brain Foundation.
The views expressed in this article are the writer’s own.
This content was originally published here.