Individuals on the autism spectrum vary greatly in how their autistic characteristics shape their life. Some individuals go through their entire life without receiving a diagnosis. On the other hand, some children demonstrate indicators shortly after birth and are diagnosed as young as assessments allow.
This article explains how autism has been defined over time—and why the term “profound autism” has recently gained attention.
Professionals have attempted to describe and categorize people with an autism diagnosis in a variety of ways. In the past, there was a diagnosis called Asperger’s Syndrome. This syndrome was seen as related to autism but essentially a milder form. However, that label was done away with, as it proved to be an unreliable diagnosis whose distinction from autism was not grounded in data.
Autism Spectrum Disorder vs. Asperger’s: What Has Changed, and What It Means for Your Child
Now, in the DSM-5, autism is described using levels that indicate how much support a person needs in areas such as social communication and restricted or repetitive behaviors. 1 The diagnostic system also includes additional descriptions related to language abilities and intellectual functioning. These attempts at description have seemingly been inadequate, as a result, many families and professionals have begun using other terms, one of which is Profound Autism.2
While the term Profound Autism is not in the DSM-5, it is commonly used to describe individuals who meet the criteria for autism and also have significant language and intellectual challenges, along with limited independence in daily life. At a minimum, the term Profound Autism helps distinguish individuals with substantial, lifelong support needs from those who are able to live largely independently.
While approximately 1 in 31 people are diagnosed with ASD3, but only 1 in 216 have profound ASD4. As the diagnosis rate of those on the less impacted end of the autism spectrum has soared, the rate on the profound end has only slightly increased.
Decades ago, an autism diagnosis was considered a universal sign of severe impairment. Families tried to bring attention to their condition in the hopes of building awareness and gaining resources and support, instead of being pushed into the shadows.
Ironically, now that the autism community has increased awareness and support, families with children on the profound end feel ignored. This concern is reflected in objective data. Although overall funding for autism research has increased substantially, funding specifically focused on profound autism has declined. 5
Essentially, because there are many more individuals on the less impacted end of the spectrum, the voices on the profound end are drowned out.
Finding solutions to these challenges is not simple. Changing diagnostic labels alone may or may not address the real concerns families are facing, and this question is currently being discussed by professionals, researchers, and the wider community. Ongoing genetics research may also play a role, as scientists work to better understand whether autism includes meaningful subtypes. Ultimately, the shared goal should be to improve outcomes for all individuals on the autism spectrum and their families. Achieving this will likely require more tailored approaches in treatment, research, and public policy.
Regardless of how autism is described or classified, one point remains clear: early intervention plays a critical role for children across the entire spectrum. When support begins early, children are better able to develop communication, learning, and daily living skills that meaningfully improve quality of life—whether their needs are mild, significant, or profound. Early, individualized intervention allows treatment to be tailored to a child’s unique strengths and challenges, setting a stronger foundation for long-term progress.
Dr. David Fischer received a doctoral degree in Clinical Psychology from Rutgers University, USA, advised by Dr. Sandra Harris. Since 1999, he was worked in the field of Applied Behavior Analysis and with individuals diagnosed with a developmental disability. He completed his pre-doctoral internship and post-doctoral fellowship at the Marcus Institute in Atlanta, Georgia working in the severe behavior unit, short-term-out-patient clinic, feeding disorders unit, and early intervention clinic. From 2007 – 2011, he trained public school teachers to instruct and manage the behavior of their students diagnosed with Autism spectrum disorder. He also was the clinical coordinator of the Asperger’s College Program, which provides support services to Rutgers students diagnosed with Asperger’s Disorder.
Over the years, I have met many parents who come to me with the same question: “What is the difference between Autism Spectrum Disorder and Asperger’s Disorder?” Some parents tell me their child was diagnosed with Asperger’s, not autism. Others hear from friends or online sources that Asperger’s is milder and wonder whether their child […]
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