In March, I posted a survey to ask Moms of Color (Dads, too!) about their experiences raising a child on the spectrum. I’m a scientist by training so surveys are my go-to for capturing data. I posted the survey on social media venues and asked people to share in their networks. It’s a snowball sample not random, not population-based, not scientific research – just a mom who happens to be a scientist asking other moms questions. I received 16 responses from moms all over the country in a two-week period. I originally planned to follow-up with those who gave me permission in an email and get their pictures but I’m an autism mama and life got in my way.
The responses I received were poignant, touching, wonderful stories of experiences along the road of families living with autism. These moms and dads had been through the wringer trying to get their children diagnosed and treated appropriately. People who did not consider themselves advocates in any way, shape, or form before autism touched their lives became advocates for their children. One mom said “before children I went along to get along but now I don’t care whose feathers I ruffle, as long as my son gets the help he needs!” Another has been led to a new career as a special educator because of her experiences.
Current statistics from the CDC put the prevalence of children with Autism Spectrum Disorder (ASD) at 14.7 per 1000 children or roughly 1 in 68 children. On average, children with ASD are not diagnosed until after age 4, even though children can be diagnosed as early as age 2 (Source: http://www.cdc.gov/ncbddd/autism/data.html). Most of the families of color here were diagnosed between 18 months and 4 years old. However, a few were not diagnosed until elementary school age and one wasn’t diagnosed until age 16. Every parent knew that something was wrong but couldn’t quite put their finger on what it may be until the diagnosis was finalized. Many were told by pediatricians not to worry and to wait until the next check-up for evaluation.
I suspected that he was on the spectrum at 15 months. He missed many developmental milestones. His doctor originally blew me off and accused me of comparing him to my older daughter. At 18 months she agreed that he needed to be evaluated. – African American mom age 33 with a son who has ASD
I have a friend who has a son about a year older & I realized my son was not hitting some of the same milestones.. My biggest concern was his speech.. Pediatrician says he was just being a boy
finally we got a referral to neurologist at the age of two he was classified as being on the spectrum… - African American mom age 29 with a son who has PDD-NOS
He'd been slipping with his milestones starting at 9 months. I was getting seriously concerned by 18 months, but kept getting brushed off by white male doctors. Finally, when I got to see an Asian woman doctor when he was 3, I finally had medical professionals who were hearing what I was saying. From there, it was less than 6 months until he was officially diagnosed. – African American mom age 34 with a son who has ASD
This really supports one of my theories that the reason you don’t hear much about families of color living with autism is because we are diagnosed less. In fact, there is evidence of socioeconomic and racial/ethnic inequalities in the prevalence of ASD due to what is referred to as diagnostic bias (Source: http://www.ncbi.nlm.nih.gov/pubmed/20634960). This diagnostic bias leads to disparities in access to services for children with autism. Many of the families spoke of struggles with the school system, medical professionals, and other programs to obtain services for their children.
I'm having a very hard tine getting behavior therapy as our insurance does not cover it & it's the most needed... Also he may lose speech therapy because he is hitting all his goals & NJ is making cuts in education - African American mom age 29 with a son who has PDD-NOS
School has been a nightmare. I'm so burnt out arguing with the Alameda school district to educate my son. As a parent if a special needs child you have to become a teacher to make sure the district is setting appropriate he reaching goals for your child. Seems everyone wants to do the bare minimum. They don't understand that their decisions greatly affect my son's future – African American mom age 38 with a son who has ASD
It was difficult getting the right evaluations for my son initially, but once the ball got rolling, he got medications, school-based therapy in a school for children with special needs, and behavioral intervention for sleep and feeding issues. - African American mom age 34 with a son who has ASD
School based was a total nightmare in North Carolina. I was the school nurse, had to quit, due to the conflict, hired an attorney and won during mediation. After that school year, we moved to New Jersey were he thrived without difficulty. I sincerely love his school district. – African American mom age 45 with a son who has Asperger’s.
Most of the families were not members of Autism Support groups. The few who were only contacted the groups when they had questions or needed recommendations. Reasons for not participating regularly were because of inconvenient meeting times, lack of other families of color, and other members being depressing or sad. Despite the fact that they had been struggling to get their child services and had limited specific support groups, most moms shared joy in being an autism mama.
I help him understand the things he needs and the wants and he depends on him and looks up to me. I have learned more about myself than I can ever teach him. He teaches me patience, thinking outside of the box and to enjoy the simple things. My son brings me joy every day. He's funny, brave, and affectionate. She and I sharing a special language from the beginning and watching her blossom. Her excitement is contagious! Its hard to call it a favorite, but I love discovering how she has developed alternate skills to make up for the ones she struggles with due to her autism. The mature, intelligent conversations. I love to share my son's successes with the village that supports us. I never knew I had the strength... I love the fact that I'm my child's biggest advocate.. & I get the chance to spread awareness & acceptance. Progress is exhilarating and always worth celebrating. Nothing is taken for granted. My son has a huge heart. He always makes sure I'm ok and hugs me and kisses me whenever I look sad. He is so amazing and smart. He is an outstanding unbelivable artist. The pride he shows after an accomplishment, no matter how small it is/was. To see him smile!
Are you a family of color with a child on the Autism Spectrum? Show us your joy! Let’s see those smiles! On your social media (Instagram, Facebook, Twitter, etc.), post a picture of your family with the hashtag #AutismFamilyofColor. Let’s illuminate our Brown faces – today and every day!
- Nadine Finigan-Carr (@doctornayaka) , Proud Mama of a 14 year old boy who has PDD-NOS