The adage “don’t air family laundry in public” has caused many African-Americans to deny grief, pain, suffering, and mental illness. We’re a strong resilient people. If we survived slavery, surely we can overcome other ailments? Mind you, there are historical reasons why some tend not to seek medical attention or therapy. Science and medicine typically treated African-Americans as guinea pigs under the unfounded belief that we did not feel pain to justify operating on us without anesthesia. The stories of Anarcha, Tuskegee experiment and Henrietta Lacks warranted a healthy mistrust of the medical profession from the black community. Even today, studies show black children and adults do not receive the same pain treatment as their white counterparts. This mistrust of the healthcare industry has lead many blacks to only seek medical attention when it is urgent, typically too late for preventative care. Unfortunately, this mistrust hurts the black community when dealing with developmental disorders like autism where early intervention is key.
Growing up, I never heard the term autistic. I guess my first encounter with autism was the movie Rain Man and its portrayal of an autistic savant. For many years, the black community has shunned talks about developmental disabilities and mental illness. When it came to the development disabled, the term “slow” or “little yellow school bus” has frequently been used. The topic of mental illness is typically avoided. In this technological age, there is no excuse for being uninformed especially when it prevents those who need help from receiving it.
I am not a reality TV fan, but I love For Peete’s Sake featuring Holly Robinson-Peete and her family. Her eldest son, RJ, is autistic. Although RJ is highly functioning, others with autism do not have his communication skills or support to insulate him from ignorant people, like 50 Cent’s recent bullying of an autistic airport employee. Others celebrities like Toni Braxton and Shawn Stockman have autistic children and are ambassadors for getting information out.
What is autism?
To educate myself about autism, I spoke to William Farrand, MA, LCPC, a Chicago clinical therapist. He stated, “[Autism] is a PDD (Pervasive Development Disorder) — basically a brain that is not wired for social interaction and communication in the same way. It is not retardation, as that is based solely on intellectual functioning, and people with autism can have average to genius level intelligence. It is not a mental illness, which is more of a neurological disorder. Neither is it Down Syndrome, which is a chromosomal disorder where there is an extra full or partial copy of a chromosome 21. A really good starting resource for understanding autism is Autism Speaks. One thing that’s important to emphasize is that early intervention is key. It has been shown that intensive Applied Behavior Analysis Therapy, which essentially trains them to work around the atypical wiring, can help them to be entirely functional. Because it costs about $50k a year for probably 5 years or more, only [the wealthy] can afford it. But other forms of intervention can help. Sometimes the atypical neurology unlocks something very special, like mathematical or musical genius, or they invent something totally incredible that no one would ever think of.”
A Mother’s Journey
To better understand how we can help black families get treatment and deal with the diagnosis, I spoke with ShaQuana Newsom-Battle, an attorney and mother to Major. Major is a bright six year old who was diagnosed on the mild spectrum of autism at four years old.
Did you notice the signs of autism?
SNB: Major picked up academic things well and was an early reader at two and half years old. Academically everything was fine, but according to his pre-k teachers he had behavior problems and didn’t talk much. He was the only black child in his class at a predominantly white upper class parochial school. So, I was trying to figure out if they were picking on him. I didn’t think of it until he was kicked out of that preschool.
What tipped you off?
SNB: We went to another preschool and they mentioned that he cried a lot and had a strong reaction to classroom changes. Outside of school, I was friends with a group of moms whose children were the same age as Major. He wasn’t doing the same thing as their kids. I thought maybe it’s just a speech impediment. He was behind in speech. I thought it was a sensory processing disorder because he didn’t like tags on his clothes, had a high tolerance for pain, and only ate certain foods among other things. I sent him to a speech therapist. Although his speech was improving other things were off. The speech therapist suggested an occupational therapist. Still I thought something is missing. He was stranger averse and wouldn’t want to go outside, not normal child behavior. The speech and occupational therapist didn’t think he was on the autism spectrum because he didn’t exhibit any early warning signs. However, I noticed things and researched online. At his four year old checkup, I mentioned it to the pediatrician who referred me to a developmental pediatrician. After performing tests, Major tested on the milder end of the autism spectrum.
Also published on the Huffington Post.