When it comes to education and autism spectrum disorder, the focus in recent years has been on early childhood education. There are many services for young children with ASD, such as early intervention programs, preschools or other school-run programs, says Dr. Jenny Chu, who runs the Boston PEERS Social Skills Program in Brookline.
But services – especially community-based ones for teens and older people with autism – are much harder to come by.
Helping fill a small space in the gap is Chu’s Boston PEERS Social Skills Program, an evidence-based social skills program. Built on a system developed at the University of California in Los Angeles, the program is 14 weeks long for teens and a 10 weeks for young adults with any social pragmatic communication challenges, autism spectrum disorder, attention deficit hyperactivity disorder, social anxiety or behavioral challenges. Chu, a speech-language pathologist, is the executive director of Boston PEERS Social Skills Program.
The PEERS program aims to empower people who struggle with social skills – a key component of the autism diagnosis – to thrive in social interactions and develop meaningful relationships. The programs include help with making friends and picking friends, dating, using humor and texting and more.
Chu shared a story of a girl who enrolled in the program. The girl used to go straight to her room and stay in her room for seven hours or more after she came home from school. Her mother initially enrolled her in the PEERS program just so she could get her daughter out of the house for a while. After enrolling in the program, the girl has been able to interact more with other students in her school and she even had her first sleepover with her friends. According to Dr. Chu, the Boston PEERS Social Skills Program does not just work with the students, the program values collaboration and interacts with parents, school teams, and therapists so that everyone can “be on the same page, use the same language” and can thus “maximize the benefits of students.”
Autism spectrum disorder, abbreviated as ASD, is a complex neurological disorder, that typically includes early-onset dysfunctions in communication, impairments in social interaction, repetitive and stereotyped behaviors and interests, and difficulties adjusting to unexpected changes, and sensory hyper-sensitivity. For more than two decades, autism prevalence has risen in the United States as well as in the world, though that increase is likely attributed in part more aggressive screening for the disorder. Minority groups in the United States are historically believed to be underdiagnosed for ASD.
To help with social interaction, PEERS program encourages students to join clubs and ask about their interests. The program then contacts the child’s team at school and the schools are asked to ensure that someone will take the students to the clubs and further encourage them. Autistic children and their families typically need many types of support and it is important to ensure that every child and every family should be represented in the autistic community.
For Asian Americans, however, the problem of under-diagnosis of ASD is real.
Although autism prevalence has increased globally, in clinical studies, there are less than 1% of Asian Americans who are being treated and evaluated. While up to 20% of public school students are being served under the Individuals with Disabilities Education Act, only 7% of Asian Americans, the lowest of any racial group, are served when disaggregating the data by race. Disabled Asian Americans are underserved and receive lower-quality support and rehabilitation compared to other groups, including Latinos and Blacks, according to some studies. There is a combination of factors behind the underrepresentation or underidentification of Asian Americans in the disability community, including guilt and shame, socioeconomics, cultural barriers, confusion about what constitutes a disability, the model minority myth and a reluctance to identify as being disabled.
Chu suggests that for many people, there is “cultural stigma of being labeled with a disability” and “stigma attached to getting diagnosed with ASD.”
As Chu put it, there are “so many issues that overlap”: People’s education, upbringing, culture and religious and spiritual ties all play a role in how people view disability. Disabled Asian Americans are often overlooked, misunderstood and simplified not only from outside the Asian American community but even more from within.
But people with ASD can only get the appropriate services, after they are properly diagnosed.