My autism journey has been a road that was traveled without a map, or a plan. I learned through trial by error. I have talked with many specialists, educators, therapists and families. Today I am in a much better place living with autism than I was ten years ago.
I need my African-American parents to wake up! What I see from the educational side and my community advocacy work is that there is a disconnect with African American families and autism. My question is why is the autism diagnosis often delayed in African American children?
African-American children with autism miss out on the early interventions and treatments that are necessary after a diagnosis. My mission is to help all families with early diagnosis and interventions. I want to find out why minority families are being misdiagnosed or receive a delayed diagnosis.
My research shows that there is a trend with minorities and those that are economically challenged missing out on an early diagnosis. Many health professionals have an autism screening that can be done as early as the age of one. Many African-American children are not being diagnosed with autism until the first grade. African-Americans girls often don’t receive an autism diagnosis until the age of nine or ten.
Why the push for early intervention? Language Development is crucial between the ages of two and three years old. There are so many changes happening in the brain during this time. The lack of access to treatment can cause the need for intensive and longer therapy. Think about the insurance cost for testing for autism. The testing is done in several sessions and the minimum cost is $3000.00 and that was years ago.
There is a stigma in the African-American community when it comes to mental illness and autism. The autism spectrum is an umbrella of disorders. People ask me where is Sydney on the spectrum. Do I use the words high-functioning or low-functioning? Do I rate her on a scale from 1-10? She’s Sydney! Get to know her and you can rate her yourself.
There are days when I hate autism. It is because I don’t understand something. That’s when I talk with the therapist and try to learn how to help Sydney more. I can remember watching her through the two-way mirror and taking notes on what the therapist was doing. So that when we got home I could continue to work with her and be consistent.
There is no cure for autism. Repeat after me. Say it three times. Accept it and move on. Now go and tell Toni Braxton for me. Studies show that African-American children are given an ADHD diagnosis and often slip through the cracks. It isn’t until later in school they are diagnosed with autism.
Regressive autism is twice as common in African American children. They present with more severe language and communication delays. This reminds me of Sydney when she lost all of her language. It seemed to happen overnight.
The take away from my blog is a plea to African-American families. No one wants to hear that their child has a deficit in any area. But living in denial is not helping. We, Copher’s Community, are the proud faces of autism even on our worst days.