I met Carlos* for the first time during lunch at his high school. He approached directly, introduced himself, and asked what I brought to eat. This sounds like standard introductory behavior, right? Here is why it was not.
Carlos walks quite fast – almost runs, and he leans forward as he walks in a way that makes you think he is going to topple right over. Instead of slowing down as he approached my personal space, he barged right in and only stopped a few inches from my face. He grabbed my hand, shook it quickly, removed his hand even more quickly, and said, “I’m Carlos, what did you bring for lunch? Is it wonderful? Can you share? I have a sandwich, and chips, and an apple, but I already ate the apple and part of the sandwich. What’s your favorite part of Enter The Dragon?” All the while, he was rocking back and forth.
It was a barrage of questions, but what struck me the most were the unique features of his voice. He almost seemed to sing the words while occasionally fluctuating into a low growl. When he finally took a long breath, I answered that I was going to be eating a salad. He laughed loudly and ran back to his table. His teacher then said that 75% of the discussion he would ever initiate was about food; the other 25% was about Bruce Lee. He adored both of these topics; in fact, one year for his birthday he was gifted a Bruce Lee themed cake. I am certain that very few people have protected their cake with such vigilance. It was several hours before he was ready to cut into it.
Carlos has autism spectrum disorder (ASD). According to the Centers for Disease Control and Prevention (CDC), 1 in 68 people in the United States has been identified with ASD, which is 5 times more common in males (1 in 42) than females (1 in 189). The key defining features of ASD are social and communication deficits (e.g., personal space challenges, rushed introduction, asking too many questions at once), as well as very specific interest (e.g., food and Bruce Lee) or patterns of behavior (e.g., vocal tone, rocking). Although Carlos’ interactions and behavior during this introduction represented a classic example of ASD, they also represented characteristics that are completely and personally unique to Carlos.
No person with ASD is the same, just as no person without an intellectual, developmental, or acquired disability is the same. Carlos seemed to sing and growl as he spoke; other people with ASD speak quite well (maybe even better than their teachers and peers), while others do not speak at all. Carlos only initiated and maintained discussions about food and Bruce Lee (i.e., only the things that interested him), while other individuals with ASD can and do hold long and varied conversations. There is an extremely broad spectrum in between.
His teacher reported that Carlos was diagnosed with ASD when he was nine years old. He moved to this school system from a rural county in another state, and it was not until then that his parents were encouraged to schedule him for an evaluation for ASD. Although he made many gains, it is very likely that his gains would have been more significant with a diagnosis under three years of age. This is because he would have then had earlier access to interventions that could have developed skills important to his social and communication growth during a period in childhood development when the brain’s plasticity is highest. This just means that the earlier we can begin intervention for children with ASD, the more likely we are to help them achieve maximum positive long-term outcomes and independence. It is not to say, however, that children, adolescents, and adults with ASD cannot make strong and significant gains after this critical period. I see this proven every day.
The gains Carlos made since his diagnosis were bolstered by 25-30 hours a week of integrated and functionally engaged activity. This does not mean that he was isolated with a therapist or teacher for 25-30 hours a week. On the contrary, this included time at school and at home, with the important point being that Carlos’ functionally engaged time was supported by a variety of evidence-based interventions and resources across various settings and people (including his parents). In other words, he had a lot of access to teaching and materials that we know work well. And, no, those resources were not necessarily expensive. His teachers and parents accomplished more with a pad of paper and a pencil than anyone could possibly guess.
All this hard work, despite later than optimal diagnosis of ASD, has really paid off. Carlos is now living in a nice home with a few other young adults who require some level of support. His conversations are still short, but the introductions and the exits are socially appropriate, and the topics are more varied. He is independently working at a grocery store, maintaining a romantic relationship with a funny young woman, and watching Bruce Lee movies every chance he gets. Although, she does not like Bruce Lee movies, so he – in accordance with his many social gains – is definitely watching much less.
*This person’s name and location have been changed or omitted herein to protect his identity. His experiences are discussed to help simply introduce the basics of ASD.
Pablo Juarez is the Associate Director of the Treatment and Research Institute for Autism Spectrum Disorders (TRIAD), a core program of the Vanderbilt Kennedy Center at Vanderbilt University Medical Center. He is a Board Certified Behavior Analyst, holds faculty appointments in Pediatrics and Psychiatry, and is a Vanderbilt Kennedy Center Member.
CDC Press release on ASD prevalence rates
CDC “Learn the Signs. Act Early.”
Evidence-based practice report from The National Professional Development Center on Autism Spectrum Disorders
Vanderbilt Kennedy Center’s Treatment and Research Institute for Autism Spectrum Disorders (TRIAD)