[A special thank you to Board members Paul LaCava and Sue Linehan for their work in putting together the information below in such a clear and thoughtful way. They worked hard to represent several perspectives while remaining respectful to all those impacted my autism.]
Autism is generally understood as a developmental disability that can impact individuals in many ways. Once thought to be a relatively rare condition, autism is a common lifelong developmental disability with a prevalence rate of 1 in every 54 children (Maenner et al., 2020).
People with autism are individuals first. Like any person, they have strengths, preferences, dreams, values, etc. While they may experience autism differently, the Autistic Self-Advocacy Network’s list of common characteristics include differences in thinking, sensory processing, movement, social interaction, communication and daily living skills (ASAN, 2020).
The definition of autism has changed over time and continues to evolve as research is completed and we learn more about the condition. Listening to and learning from autistic people has been essential in this understanding. Depending on what you read and who you talk to, you may find distinctly different perspectives about autism.
You will find common definitions and descriptions here, and further information via hyperlinks with a resource list below.
Terms and Language How we communicate about people with autism is crucial. Several terms have been associated with autism over the years, but more recently autism has been described and defined as autism spectrum disorder (ASD). Many people use autism and ASD interchangeably.
Person first language has been stressed by professionals for some time now. This is the idea that when we communicate about people with disabilities, we put the person first and the disability second (e.g., a person with autism). Person-first language developed as a response to prejudice and seeks to show that there is more to a person than their disability and they should be treated with respect. Identity first language is a more recent movement that promotes autistic identity and sees autism as fundamental to who they are (e.g., an autistic person). Supports of identity first language argue that they can’t be separated from their autism and that their disability is not something they have, it is who they are. We use both styles to reflect respect for both points of view.
Definition(s) The Autism Society, the oldest autism advocacy organization in the U.S.A., defines autism as a “complex, lifelong developmental disability that typically appears during early childhood and can impact a person’s social skills, communication, relationships, and self-regulation” (Autism Society, What is Autism, para. 1). They add that autism is a “spectrum condition” that affects people in different ways and to varying degrees.
Clinicians use the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders - 5th Edition (DSM-V) to diagnose autism. In the DSM-V autism is defined as an “autism spectrum disorder” and diagnostic criteriaconsists of impairments in social communication, social interaction and restricted, repetitive patterns of behavior, interests, or activities.
Educators follow the Individuals with Disabilities Education Act (IDEA; 2004) definition of autism to see if a student with autism in public schools is eligible to receive special education services. IDEA defines autism as “a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age three, that adversely affects a child’s educational performance” (IDEA, Sec. 300.8 (c) (1)).
While ASAN describes autism as a disability, it also states that disability is natural to humanity and that neurodiversity should be valued given that no two brains are alike and that all should be accepted for who they are.
Because autism exists on a spectrum, individuals can vary greatly in skill levels and characteristics. According to the CDC, it is present across ethnic, socioeconomic and age groups with males diagnosed four times more than females. The median age of diagnosis is about 4 years old (Maenner et al., 2020).
While autism is considered a life-long condition, sometimes signs aren’t readily apparent until 15-24 months of age or later. However, many people aren’t diagnosed until later in childhood, adolescence or even adulthood. According to the Act Early: Know the Signs campaign,initial signs of autismmay include:
o Not responding to their name by 12 months o Not pointing at objects to show interest by 14 months o Lack of pretend play by 18 months and/or limited interest in playing with other children o May avoid eye contact o Have trouble understanding non-verbal language, other people’s feelings, etc. o Have delayed speech and language skills o Repeat words/phrases over and over (echolalia) o Difficulty with minor changes o Obsessive interests o Flap their hands, rock their body, or spin in circles o Hyper or hypo-sensitive responses to sensory input
Some autistic children have evident differences from birth or very early on in life. In others, signs of autism appear within the first year. Many others we see signs by 1.5 to two years of age. However, some children with autism appear to be developing typically then suddenly regress and lose skills (e.g., speaking, social skills).
Autistic people often experience co-existing conditions such as depression, gastrointestinal issues, sleep disorders, and seizures. Anxiety is very common (Lundström et al., 2015).
People with ASD require varying degree of support ranging from relying on others for full care while others live independently.
Using autistic strengths and interests are vitally important as is promoting self-determination and including autistics in decision making, leadership and community.
Some people look at the supposed impairments described above and reframe them in a positive light. For example, instead of saying a certain behavior is repetitive and non-functional it could be seen as a relative strength and used to learn skills, find purpose and even employment (Shore, 2021).
For several reasons, outcomes for autistic people are currently sobering. Several studies have shown that people with autism work less, live less independently, have less social participation, have more unmet health care needs, and have less access to post-secondary education than typical peers or even peers with other disabilities (Rast et al., 2020; Shattuck et al., 2012). Addressing these issues are paramount.
Regardless of the autism definition, how autism impacts a person, or who is affected, it is important to educate all communities about autism. We must value autistic people and show them the respect that they deserve. The most important thing is to understand autistic people, love them, support them, advocate for them, and empower them to have a high quality of life.