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.
What was your reaction to the diagnosis?
SNB: It's difficult even though Major is on the mild spectrum. Initially, I felt lost. He's my only child. What would happen to him when he grows up? What about how I imagined his future when he was a baby? I found support groups via Facebook. However, most were Caucasian.
What tips do you have for mothers and families, especially within the black community?
Tip 1: Get your child tested by a developmental pediatrician.
Maybe your child just has a speech delay. However, not getting tested is detrimental to your child, especially for boys who are diagnosed at a higher rate. Black kids typically aren't diagnosed until first grade (around 6 or 7 years old). Other children are diagnosed as early as 18 months. ABA treatment is the most effective behavioral treatment. Also, early intervention is important when they are young and the mind is still developing.
Tip 2: It's Okay to Mourn.
Mourn the fact that life has changed. Get over the sadness and disappointment.
Tip 3: Use Resources.
Contact Autism Speaks and get their free "100 Day Kit." It helps you deal with the first 100 days of the diagnosis and helpful information. Be on a schedule. Having a schedule helped tremendously.
Tip 4: Get to work advocating for your child.
Call your insurance company immediately to see what therapies are covered. Before his diagnosis, I paid for speech therapy out-of-pocket. However, even with insurance, out-of-pocket maximums can be anywhere from $3-6k. Some people simply can't afford that. My husband is in the Army so we are insured by the Department of Defense. This insurance has minimum out of pockets expenses in comparison. Most states now have a law requiring employer insurance plans to cover ABA from age 2 until school age (the ages vary from 6-10). However, if money is a barrier, many states pay for early intervention for children under 3 years old. Once your child is school age, pay attention to the education plan the school offers. If your child is in Special Education, make sure his needs are being met. It doesn't mean your child has to be isolated in a self-contained classroom. I am sure to tell my son's school that I am an attorney so that they know that I am aware of what the law requires. I carefully go over my son's IEP with school staff. Sometimes kids on the mild spectrum get left out because they are on track academically. But they may have social deficits or their behaviors can be labeled as discipline problems.
Tip 5: Get a support group
Don't be afraid to be the only black mother in the group. These women have been advocating for their kids and will know the good schools, therapists, and doctors. You need a support system because "normal" kids and their parents may not understand and in some instances can be cruel, not inviting your child to playdates, birthdays, or other events. Fortunately, we have not had that problem but others have.
Tip 6: Get therapy for yourself.
The stress of it all weighs on you. Especially when you're dealing with family members who tell you "he'll get over/past it or age out of it." You have to educate family members to not make a big fuss when your child does something they think is wrong. Although Major is 6 years old, he still does things that aren't age appropriate because he still has child-like innocence. Shame is not in his process. For example, he does not like being wet or dirty. We were at a family function and he got wet. So he did what he does when he's at home, he took his clothes off and continued to walk around in his underwear. An older relative saw him and started yelling at him. Yelling at him does not work so naturally he starts crying. Well, you know how black men feel about a black boy crying so then comes the "he's being a wimp there's nothing wrong with him except ya'll babying him." Most of the relatives understand his autism, but a few of the older ones think he's just fine. Just accept the child where they are. Let the parent handle the situation. Not only do these encounters stress the child, but it stresses the parent out too. Withdraw the negativity and have empathy.
If you are concerned about whether your child may be on the autism spectrum, contact your pediatrician and reach out to Autism Speaks.