Autism is a lifelong condition that impacts how a person socializes, communicates, and processes information. There are autistic people of all races, gender identities, ethnicities, and socioeconomic backgrounds. It is a neurological and developmental condition that is typically diagnosed in childhood but can go misdiagnosed or undiagnosed into adolescence and adulthood. An estimated 1 in 36 American children and 2% of American adults have been diagnosed as autistic.
Autism can manifest in a variety of ways, and presentations vary between individuals. This wide range is why autism is understood and described as a spectrum. Prior versions of the Diagnostic and Statistical Manual (DSM) included four separate diagnoses under what is now classified as autism spectrum disorder. Those diagnoses included Autistic Disorder, Asperger’s Syndrome, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder - not otherwise specified. In 2013, the American Psychiatric Association (APA) revised the DSM and changed the criteria and conceptualization of autism.
Before the 2013 revision, the four separate diagnoses of autism and autism-related conditions were diagnosed based on specific sets of symptoms. The DSM-4 classification of the four subtypes of autism included:
Autistic Disorder -The diagnosis of Autistic Disorder in the DSM-4 required at least two “social impairment” symptoms, at least one “communication impairment” symptom, and at least six total symptoms from those categories.
Asperger’s syndrome — Asperger’s syndrome was used to describe autism prior to 2013. Someone could be diagnosed with Aspergers according to the DSM-4 if they had “at least two symptoms of social interaction impairment and at least one symptom of restricted, repetitive behavior.” Asperger’s was often used to describe autistic people who did not have accompanying linguistic or cognitive impairment. Asperger’s syndrome most likely tracks with how the DSM-5-TR currently describes autistic people with level 1 support needs.
Childhood disintegrative disorder (CDD) — Child disintegrative disorder is a diagnosis characterized by developmental delays occurring after age 3, when a child loses their previously acquired communication, social, and motor skills.
Pervasive developmental disorder - not otherwise specified (PDD-NOS) — This condition was a catchall for signs of autism that did not fit neatly into one of the other types of autism.
In the DSM-5, these separate diagnoses became part of what is referred to as the autism spectrum. The DSM-5 also introduced criteria for determining “severity levels” to distinguish the extent of support needs. These levels include:
Level 1 — Level 1 is “requiring support.” Autistics at this level can typically live independently or near independently, although they still experience notable difficulties that should not be brushed off. Level 1 autistics can often benefit from occupational or academic accommodations and trusted people (family, friends, or professionals) who can give them support as needed in certain areas. At times, they will still struggle with high social demands, transitions, or other situations that may be dysregulating for them. They can and do experience social, communication, and sensory challenges and may need more or less help at different times. (Their support is as needed.)
Level 2 — Level 2 is “requiring substantial support.” Autistics who require level 2 support may benefit from regular care and support. They can be semi-independent yet still benefit from daily (or near-daily) assistance in certain areas. Every autistic person’s needs are different and vary based on the person’s strengths and differences. Generally, level 2 support means that despite their difficulties being “substantial,” constant assistance is not indicated. (Their support is part-time.)
Level 3 — Level 3 is “requiring very substantial support.” Autistics who require level 3 support typically need significant, continuous care and support with most aspects of their daily living. This could mean many things, ranging from needing help with basic self-care tasks to staying safe to having designated people make care decisions for you. Level 3 support needs can mean they may have an appointed guardian and may be cared for full-time by their families or reside in residential settings. (Their support is full-time.)
While the level classifications are an attempt to clarify the needs of autistic individuals without using functioning labels (described below), the autistic community largely views these labels as ableist as well. The best way to describe an autistic person is to describe the autistic person for exactly who they are as an individual, without labels, generalizations or stereotypes.
Unfortunately, it’s still common to hear “high-functioning” or “low-functioning” labels used to describe autistic people. Many in the autistic community do not find these binary descriptions to be helpful or accurate. To describe someone as “low-functioning” is insulting and inaccurate. To describe someone as high-functioning is invalidating toward the very real challenges that autistic people face, no matter what their support needs may be. Functioning labels are ableist. They overlook the complexity of individuals and do not capture the non-linear nature of the autism spectrum.
At NeuroSpark, we understand that each individual is unique. We believe that by working together, we can support and accommodate each other. In addition to affirming therapy, we offer one-on-one coaching, accommodations consulting, and autism assessment.