According to the Centers for Disease Control, it is estimated that 1 in 54 children is on the autism spectrum, with boys being four times as likely as girls to be diagnosed. And while there isn’t a difference in prevalence rates between white children and children of color, there is a significant disparity in age of diagnosis and access to early intervention and other services and therapies. It is systemic racism that is robbing children of color with autism the opportunity to achieve their optimal level of success. But there is hope.
Early Diagnosis and Early Intervention
Early diagnosis and early intervention are vital in helping children on the spectrum and their families thrive. Medical professionals report the best outcomes occur when children are diagnosed and begin receiving services before age 3. But because many children of color are diagnosed on average years later than white children, they often miss that critical window of opportunity.
Several factors can contribute to a later diagnosis, such as less access to medical insurance and inadequate health care. Also, families of color may be less aware of the signs of autism due to a lack of autism awareness in low-income communities. The stigma of disabilities and distrust of medical providers may also be contributing factors.
Misdiagnosis and Lack of Access to Services
Because children of color are less likely than their white peers to be diagnosed with autism during the first 3 years of life and to receive proper services, many get misdiagnosed during their youth as having behavioral issues or intellectual disabilities. This, again, impacts their ability to obtain the services they need and creates an even more negative stigma surrounding these children.
Families of color who are fortunate enough to receive an autism diagnosis for their child at any point are often not financially capable of affording the exponential cost of autism-related expenses. With black families, on average, earning less than half of what Caucasian families make, the expensive price tag of therapy, special education, prescriptions and medical care are often out of reach.
Autistic adults of color who did not have an early and proper diagnosis, as well as appropriate services, can suffer severe long-term impacts. They run a much higher risk of being incarcerated than white autistic adults, experience mental illness, and have an increased risk of suicidal thoughts, attempts and deaths. It is a crisis that is mostly preventable but requires systemic change.
My Son’s Story
My son is 5 years old and has ADHD and autism spectrum disorder. He began receiving early intervention services through our state’s Early Steps program at age 2. Currently, my private insurance covers his costly ABA therapy, and he will be attending a local charter school for children with autism in the fall. My son has had access to every resource possible. My son is also white.
I say this because I can’t imagine how much more difficult this already challenging parenting journey would be if my son were of color, and that is inexcusable. Every child deserves the same opportunities. But systemic racism has affected every aspect of life for the black community, especially their most vulnerable children.
Hope for the Future
Currently, in our country, there is a movement demanding basic civil rights for all marginalized communities. That change is long overdue, and each vote we cast for elected officials from our local, state and federal levels matters. We must elect leaders that are going to make it their mission to end systemic racism, and we must hold them accountable.
I stand united with the Black community and I will fight for your children with you.
“The time is always right to do what is right.” – Dr. Martin Luther King, Jr.