What Is Autism/Autism Spectrum Disorder?
April is National Autism Acceptance Month, so it seems like a good time to write a column about autism. I am sure many of you know one or more people who have identified themselves as being “on the spectrum.” Some have self-identified based on social media posts (more on that later). Others are likely to have been diagnosed formally.
But what, exactly, does being on the spectrum mean? Although there are spectrums for many mental health diagnoses, because their impact can range from mild to severe, being “on the spectrum” typically refers to autism spectrum disorder (ASD).
ASD is characterized by deficits in social communication and social interaction (SCI; i.e., difficulty with nonverbal communication, maintaining a back-and-forth conversation, expressing emotion, developing relationships), and a pattern of restricted/unusual interests and repetitive behaviors (RRB; i.e., unusual and circumscribed interests; extreme sensitivity to noise, light, or texture; a need for routine or “sameness”; repetitive motor mannerisms and object use).
Based on the DSM-5, the manual for psychiatric diagnoses, an individual must have all three SCI deficits and two of the four RRB deficits. For adults, the most common RRBs are intense interests that take time from tasks that need to be done, inflexibility, and sensory sensitivities.
Previously thought to be rare, in 2021, ASD was found to occur in one out of 44 people in the US (2.21 percent in adults), with a higher frequency in males (3.62 percent) than in females (0.86 percent). However, the gender difference may reflect the fact that girls and women are often more social than men, are better able to mask and camouflage autistic behaviors, and may have intense interests that are more socially acceptable.
Although some autistic individuals (Note: there is a preference for identity-first language) have intellectual and language disabilities, many do not and may be intellectually gifted. However, for all autistic individuals, problems with executive functioning (planning, organization, flexibility) and attention are common. Some may also be diagnosed with attention-deficit/hyperactivity disorder (ADHD), which is treated separately (see my October 2023 Letters column). Anxiety, especially in adults, may be as common as ADHD, with a high prevalence of social anxiety.
ASD can be reliably diagnosed by age two or three, often because a child is slow to develop language and/or has significant behavioral problems. However, the average age of diagnosis is closer to four and is often later in disadvantaged groups.
Early, intensive, evidence-based behavioral intervention is crucial and can sometimes lead to a very good outcome or even full symptom remission. However, those with milder deficits may not be diagnosed until they are older and in middle- or high school when their social deficits and difficulty sustaining peer relationships become obvious. Despite extensive public education campaigns and improved diagnostic methods, many people are not diagnosed until adulthood. For them, an ASD diagnosis often can explain multiple earlier diagnoses (e.g., ADHD, social anxiety disorder, obsessive-compulsive disorder) that never captured their problems fully.
For adolescents and adults with normal language, participation in therapy groups that work on social and executive functioning skills can be very effective. At older ages, strength-based rather than deficit-based treatment is preferable. Autistic adults are also part of a growing neurodiversity movement, with support groups found on college campuses and in many communities.
Finally, an ASD diagnosis should not be made cavalierly. Unfortunately, while there is good and accurate information about ASD on social media, there is also a lot of misinformation, which has caused many adults to conclude they are autistic when there is likely another cause of their problems.
Proper diagnosis requires a detailed history review dating to infancy and the toddler years, preferably with a parent or older sibling; an interview with and observation of the client; an interview with a spouse, partner, close friend, or sibling for current information; completion of rating scales by the client and informants; testing of social/emotional perception, understanding of emotions and relationships, personality/coping skills, and, if needed, limited neuropsychological testing. This should always be completed by a licensed professional who has experience working with autistic adults.
You can find more information about ASD on the Autism Delaware website (autismdelaware.org/). Autism Delaware also provides services to children and adults who have a formal autism diagnosis. Services for those who are more severely affected are available through the Delaware Division of Developmental Disability Services (https://dhss.delaware.gov/dhss/ddds/) for qualifying individuals. ▼
Dr. Robb Mapou is one of only three board-certified clinical neuropsychologists in Delaware. In addition to evaluating older adults who have concerns about cognitive changes, he specializes in evaluating teenagers and adults for autism spectrum disorder, specific learning disorders, and ADHD. His website is drrobbmapou.com. Email: drrobbmapou@proton.me.