April was previously known as Autism Awareness Month, but in 2021 the designation changed. Now recognized as Autism Acceptance Month, the shift is designed to improve inclusion, respect and support from the community for those living with autism. Dr. Ruby Tan, a developmental pediatrician at our Brook Road Pavilion answers these 6 questions about why this is important.
Has having an open dialogue about autism spectrum disorder led to those living on the spectrum feeling more accepted?
In my mind, this shift represents societal change from merely recognizing autism spectrum disorder to fully embracing individuals with autism as valued members of our community. This change results in two very important things: the community recognizing autism and openly accepting neurodiverse individuals and individuals with autism gaining confidence in their strengths and advocating for their differences.
Open conversations about autism have allowed for greater acceptance by challenging the traditional perspective, which often focuses on what’s lacking. The neurodiversity approach highlights that many challenges faced by people with autism stem from a mismatch between their traits and societal expectations rather than from autism itself. This changing perspective not only encourages communities to provide support but also promotes acceptance and allows for individuals with autism to advocate for themselves, rather than requiring them to hide who they really are. Studies show that when neurotypical individuals better understand autism, they tend to hold a more positive view and be more eager to connect with neurodiverse individuals.
There has been a drastic increase in diagnoses for those living on the spectrum. Can you talk about that increase and what you believe is behind it?
The prevalence of autism spectrum disorder has risen by more than 250% over the past two decades, now affecting 1 in 31 school-aged children in the United States. Several factors may have contributed to the increased prevalence of ASD among children.
From a medical perspective, the updated diagnostic criteria now encompasses a broader spectrum. This includes individuals who may have previously received different diagnoses or no diagnosis at all. The American Academy of Pediatrics’ campaign to screen children for autism at 18 and 24 months may also have contributed to more children being identified for ASD evaluation and diagnosis. Health care providers and educators are more aware of the signs of autism, leading to ASD being identified earlier. In addition, communities and families are becoming better supported in advocating for care for children with concerns regarding ASD.
What segment of the population is seeing the biggest increase?
According to recent literature, girls and children of color who were previously underdiagnosed have seen a significant rise in autism diagnoses. Between 2011 and 2022, ASD diagnoses among girls increased by about 300%, compared to diagnoses among boys which rose by 185%. Providers now better understand how autism manifests differently in females and that previously, kids may have masked their behaviors leading to them not being diagnosed.
Studies show that an increasing number of children of color, particularly Hispanic children, are being diagnosed with autism, and their rates are surpassing those of White children. On the contrast, Black children tend to be diagnosed later in life. These findings highlight ongoing barriers to prompt diagnosis and support for these groups.
Can you walk us through the benefits of identifying ASD early and what type of therapies and treatments there are available when identified early?
ASD can be diagnosed as early as 18 months, and interventions during key developmental periods increase the chances of positive outcomes. This approach can shorten what can be a lengthy diagnostic process and facilitate access to support services, including therapies, educational programs and family resources. The main goals of treatment are to enhance the child's skills, support independence and improve overall quality of life.
Treatment for ASD primarily involves developmental, behavioral and educational therapies that target impairing symptoms. These therapies can be delivered through early intervention programs, school-based or special education, or by community therapists. They include applied behavior analysis, behavioral and developmental therapies, and parent or caregiver/child training. In some cases, medications may be used to manage medical or psychiatric conditions associated with ASD. Our providers can help families choose the most appropriate management plan.
How has accessibility for those living with autism improved?
Thanks to significant advancements, services for kids with ASD have improved greatly. Because of guidance from the AAP and support from state and federal programs, the disorder has been detected earlier which has resulted in help for families and expanded telehealth. Early intervention, family navigation and care coordination have also improved.
Despite these improvements, significant gaps still exist that need to be addressed. At the child development clinic here at CHoR, we strive to improve access and reduce wait times for all patients. Our interdisciplinary team works closely with families, primary care providers and dedicated community advocates to support children with ASD and related disabilities.
How do you see the future of autism spectrum disorder support?
Understanding autism spectrum disorder is a big responsibility for both the medical community and society. As providers, it’s important to deliver evidence-based medical care while remaining sensitive to everyone’s unique needs and cultural backgrounds. For families and the community, it is important to be careful about what they read, listen to and accept. Ultimately, our goal should be to help all children thrive, reach their full potential and make meaningful contributions to our community. While we have made some progress in raising awareness and acceptance of autism spectrum disorder, there is still much to learn and do to build on this momentum. Perhaps reaching the next milestone—an Autism Alliance Month—would be cool.