The Neuroscience of Autism and Neurodiversity: Separating Fact from Fiction
The Neurodiversity Research Initiative (NRI), a part of the Kent State Brain Health Research Institute (BHRI), was established with a mission to build upon and support rigorous evidence based, peer reviewed research in neuroscience and allied fields with an emphasis on neurodiverse conditions while integrating the voices and lived experiences of neurodiverse individuals and their families. We remain committed to this mission and to advocating for scholars, researchers, and individuals. We recognize the irreplaceable value research and educational institutions have served in the quest for answers and development of systems to advance knowledge and serve the population.
In the current socio-political climate, we find it imperative to acknowledge the 80-year history of rigorous and evidence-based research in autism, specifically, and in neurodiversity in general. The fields of neuroscience, biological, and medical sciences have illustrated without a doubt that neurodevelopmental disorders do not represent a single entity but a spectrum (Lord et al., 2018). Further research is needed to illuminate various entities on the spectrum and move the field forward. There are many aspects of neurodiversity which warrant research, intervention, acceptance and inclusion. A primary focus of the NRI and our research has been autism, but our work seeks to understand the entire spectrum of neurodiversity and related conditions.
Across this spectrum are individuals with varying abilities, skills, strengths and challenges. We acknowledge that some who are neurodiverse struggle with the most basic aspects of living requiring more intensive intervention and certainly more research regarding etiology, educational, therapeutic and medical interventions. The applied sciences such as speech-language pathology, audiology, occupational and physical therapy, psychology and education have been committed to examining effective interventions making strides which improve the quality of life for many. Much has been learned which must not be lost amidst the noise that fuels doubt and fear.
To be sure, we do not know the cause of autism because autism itself, as we define it, almost certainly does not have just one single cause (Hodges et al., 2020). Research is revealing a cluster of genetic factors and possible environmental, social factors (e.g. age of parents at the time of birth) that may point to increased risk of autism. But there is so much more to this limited picture that needs to be understood. This includes research at a societal level to address needs such as access to health care, as well as an understanding of comorbid conditions which occur in many neurodiverse individuals.
Many concerns have been voiced about the increased prevalence of autism, among other neurodiverse conditions. Eighty years ago, there were few physicians in the United States aware of autism or able to diagnose the condition. To be sure, autism as a diagnosis “infantile autism,” did not enter the Diagnostic Statistical Manual (DSM) until 1980 (Rosen et al., 2021). Other neurodiverse conditions such as attention deficit and hyperactivity disorder (ADHD) were not even identified. For those with autism, only families with financial means were able to travel to those few knowledgeable physicians to have their child diagnosed prior to 1980. Those children are now in their 60’s and 70’s, and historical context is illuminating.
There were also no public educational or social support programs prior to the late 1970’s. Consequently, most individuals with autism were diagnosed with mental retardation, childhood schizophrenia, childhood aphasia or other psychiatric diagnoses of the time. Many were placed in state institutions. Physicians regularly told mothers to institutionalize their children, and many families lost faith in the medical establishment as a result. Devastated broken-hearted parents either followed their doctor’s advice or fearfully attempted to care for their child at home without much direction. One of the earliest forms of home-based intervention developed out of parents’ belief in their child and a commitment to treating their child at home. The Son-Rise Program is the result of that commitment where Barry and Samharia Kaufman created a program to treat their son, Raun (Kaufman, 1976). Raun, a Brown University graduate who is now in his 50s, is the director of Global Education for the Autism Treatment Center of America and spokesperson for the Son-Rise Institute (ATCA website). Gratefully, families now have access to information and treatment options with research evaluating the efficacy of many approaches.
A respect for human rights and integrity, as well as inclusion, has resulted in significant social change across the decades. Advancements in research and research tools, interventions, and training of practitioners qualified in differential diagnosis has allowed for more accurate diagnoses. Special education became mandated in the mid-1970s (PL 94-142), and individuals were no longer sentenced to institutional living. Indeed, deinstitutionalization became a movement of the time, beginning in the 1960 (Montengro et al., 2023). As more medical providers learned about autism, researchers began to study numerous aspects of the condition resulting in development of diagnostic and intervention tools. Additionally, over the past decades access to medical care for marginalized individuals/families has allowed minorities and those without the means to pursue often expensive diagnostic evaluations to obtain care. Importantly, a rigorous foundation of science and evidence-based practice is key to this progress and needs to be maintained.
Regarding vaccines. We know vaccines are not the cause of autism. Physicians were not specifically trained in diagnosing autism until about 20 years ago. Prior to that time, during the 18-month wellness visit a pediatrician would inquire if the child was beginning to talk. This was the same age when children first received the measles, mumps, and rubella (MMR) vaccine when it became widely available. Thus, not talking, a possible indicator of autism, and MMR became associated as an event at that time. However, rigorous research examining child behavior revealed that many children demonstrate characteristics of autism: absence of eye contact, pointing, facial expressions and reciprocal interactions prior to the 18-month pediatric visit, at their first birthday.
Because doctors simply did not know how to identify children at risk for autism earlier and had been trained to ask about expressive language only at the 18-month visit, the belief grew that MMR vaccination and autism were causally connected. Subsequent research has unambiguously refuted this notion (Davidson, 2018). In addition, researchers are now exploring strategies to assess children at risk for autism between 12 and 36 months (Wetherby et al. 2021). Pediatricians now acknowledge the concerns parent present prior to their child’s 18-month visit with important referrals being made.
Fear is not the tact to take when interacting with those who are neurodiverse or their families. Creating a registry for those with autism as suggested by the current Secretary of U.S. Department of Health and Human Services (Tin, A. CBS News) will result in families hiding their children in fear, requesting that practitioners change a diagnosis on medical records, and invade the privacy of families. Consequently, many will not receive quality medical, educational or therapeutic care. Their families will not obtain sound scientific and clinical advice. Compassion and respect for the integrity of the individual and the family must remain central. Individuals who are neurodiverse and their families are entitled to know the work of the committed scientists and practitioners who have built the rigorous knowledge base upon which our current understanding of autism and neurodiversity is built. How else can we expect neurodiverse individuals to become effective self-advocates, now and in the future?
Thankfully, many neurodiverse individuals and families have moved self-advocacy to the next level over the last 3-4 decades, resulting in the neurodiversity movement and numerous self-advocacy organizations. Many neurodiverse self-advocates become discouraged or overwhelmed in the process but are still remembered for their commitment, love and initiative. Others have created monumental supports for change from parent organizations to innovative independent living developments. Certainly, families have guided the path of advocacy (Cleary et al., 2022). Reflecting on their work is essential as we commit to future research in neuroscience, biology, medicine and the applied sciences.
Historically, many pseudo-interventions including facilitated communication and secretin have created concern and at times harm. Claims focused on curing autism were costly for families emotionally and financially and distracted from the real work of research and intervention. Currently, the distraction of chaos and public misinformation regarding autism and neurodiversity continues to prevent us from better understanding the needs, strengths and challenges of a growing and aging population of individuals who have much to offer society, and who will continue to require innovative inclusive strategies as they age. The need to remain focused on credible science has never been higher.
The NRI and BHRI strongly support evidenced-based science and education related to autism and neurodiversity, engaging both neurodiverse and neurotypical individuals and their families in that work. We are grateful to those who have worked to establish national, state and local organizations to promote research and serve. We are encouraged by the statements from scientific organizations and advocacy groups that support spreading fact and not fiction about autism, health and disease. Let us remain aware of the history of neurodiversity in science and treatment, recognizing the gains that have been made, and embrace families and individuals seeking to have a voice in a better understanding of the wonderful differences that make us human and of the diversity of skills and talents we will need to solve the complex problems of present and future.
--Lisa Audet, Ph.D., CCC-SLP
--Michael Lehman, Ph.D., Director, Neurodiversity Research Initiative Director, Brain Health Research Institute
References
Autism Treatment Center of America
Cleary, M., West, S., & Mclean, L. (2022). From ‘Refrigerator Mothers’ to Empowered Advocates: The Evolution of the Autism Parent. Issues in Mental Health Nursing, 44(1), 64–70.
Davidson M. (2017). Vaccination as a cause of autism-myths and controversies. Dialogues in clinical neuroscience, 19(4), 403–407. https://doi.org/10.31887/DCNS.2017.19.4/mdavidson
Kaufman, B.N., (1976). Son Rise. Harper and Row Publishers. Hodges, H., Fealko C., Soares, N., (2020). Autism spectrum disorder: definition, epidemiology, causes, and clinical evaluation. Translational Pediatrics, 9,S55-S65.
Lord, C., Elsabbagh, M., Baird, G., Veenstra-Vanderweele, J., (2018). Autism Spectrum Disorder. Lancet, 392(10146): 508–520. doi:10.1016/S0140-6736(18)31129-2. Montenegro, C., Irarrázaval, M., González, J., Thomas, F., & Urrutia, J. (2023). Moving psychiatric deinstitutionalization forward: A scoping review of barriers and facilitators. Global mental health (Cambridge, England), 10, e29.
Rosen, N. E., Lord, C., & Volkmar, F. R. (2021). The Diagnosis of Autism: From Kanner to DSM-III to DSM-5 and Beyond. Journal of autism and developmental disorders, 51(12), 4253– 4270.
Tin, A. (2025). RFK Jr.'s autism study to amass medical records of many Americans. CBS News. Retrieved 5/7/25: 94ᵗʰ Congress of the United States, (1975). Public Law 94-142
Wetherby, A. M., Guthrie, W., Hooker, J.L., Delehanty, A., Day, T. N., Woods, J., Pierce, K, Manwaring, S.S., Thurm, A., Ozonoff, S., Petkova, E., & Lord, C., The Early Screening for Autism and Communication Disorders: Field-testing an autism-specific screening tool for children 12 to 36 months of age. Autism 25 (7), 2112-2123.