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.