Profound Autism

By Laura Noland, M.Ed., BCBA     

[This column was published in the West Springfield Repubilcan on August 17, 2022.]                                                           
                                                                                                      
There have been significant changes in the way we talk about and define autism in just the past 10 years. 

The American Psychiatric Association (APA) garnered widespread attention, especially in the autism community, in 2013 when it released the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This publication combined four formerly independent diagnoses – Asperger syndrome, autistic disorder, childhood disintegrative disorder(CDD), and pervasive developmental disorder-not otherwise specified (PDD-NOS) – into the single label of autism spectrum disorder (ASD).

Although the DSM-5 also outlined a new severity marker (using Levels 1, 2, or 3 to describe individuals requiring least to most support), many in the autism community voiced concerns that this diagnostic change would not adequately recognize the vast diversity of those diagnosed with ASD, potentially impacting access to vital supports and services. 
 
Nearly a decade after the formal creation of the ASD diagnosis, autism awareness has grown exponentially. Resources have also expanded considerably in response to this rising need. However, individuals with autism who have severe social communication and behavioral needs – a population that demonstrates the highest level of need for services and care – are too often excluded from research and some require more support than is available in existing service models. These children, adolescents, and adults were also disproportionally impacted by the COVID-19 pandemic when many critically needed in-person services were suspended or replaced with telehealth models. 
 
In 2018, a group of international experts formed The Lancet Commission for the Future of Care and Clinical Research of Autism to formally identify priorities for autism treatment and research around the globe. The Commission recently published a report that states, “Individuals with autism and other neurodevelopmental disorders are a valued part of society and represent a prototype of neurodiversity. At the same time, many individuals with autism have profound needs and are vulnerable to harm, marginalization, and exclusion, and societal attitudes to difference, inclusion, and equity will affect their life experiences and outcomes.” 
 
With this report, The Lancet became the first peer-reviewed medical journal to formally adopt the label “profound autism” for those who: (1) are 8 years old and older; (2) require 24-hour adult supervision and care; and (3) have a significant intellectual disability and/or severely limited communication. The purpose of this designation is to better identify individuals who have long-term, intensive care needs in order to promote expanded research, treatment, and policy aimed to support this vulnerable population.  
 
At May Institute, we are proud to support individuals across the lifespan who have highly specialized needs—including those who are profoundly impacted by autism. We are reminded every day that there is still work to do. Autism now affects one in every 44 children and over 75 million individuals internationally. The growing prevalence of ASD speaks to an urgent need for expanded research and increased accessibility of treatment and services. 
 
Laura Noland, M.Ed., BCBA, is the Director of Community Engagement and Development at The Bay School, a May Center School for Autism and Developmental Disabilities in Santa Cruz, Calif. She can be contacted at lnoland@mayinstitute.org.

The Bay School is one of May Institute's five special education schools, four in Massachusetts and one in California, for students with autism spectrum disorder (ASD) and other special needs.

About May Institute
May Institute is a nonprofit organization that is a national leader in the field of applied behavior analysis and evidence-based interventions, serving autistic individuals and individuals with other developmental disabilities, brain injury, neurobehavioral disorders, and other special needs. Founded nearly 70 years ago, we provide a wide range of exceptional educational and rehabilitative services across the lifespan. For more information, call 800.778.7601 or visit www.mayinstitute.org.