Two local mothers are looking forward to continuing to empower families of color when it comes to Autism. Although the condition doesn’t discriminate, Black children receive a diagnosis six months to three years later compared to white children. These setbacks not only translate into a delay in skill but reduced access to early intervention.
Josselyn Okorodudu found out her son was autistic at the age of five.
“We are not listened to; we are not believed. Since 18 months old I was saying something is going on here and I think that their stereotypes of who I was as a mother and who Kai might have been as a Black boy, held him back from giving him the diagnosis that he should’ve had,” she explained.
Okorodudu says after speaking with other moms, she found she wasn’t alone. Depression was common amongst her peers, all wanting to be advocates for their children but not knowing how.
“Like what I felt was very depressed and anger. Trying to figure this out for years and I finally found out and they just give you a packet that tells you all the things you don’t really want to hear about your child. They tell you to download the 100-day toolkit from ‘Autism Speaks’ and it’s not enough,” she said.
Feeling a sense of loss, she reached out on Facebook and that’s when she met LaTonya Chichester. Chichester’s daughter was diagnosed with high functioning autism at age three. She had some previous experience as to how Josselyn felt, a reminder of what she went through in previous years.
“I had to figure out what therapies I needed to get her communication skills together. So she could communicate and express herself without having these meltdowns. What other parents don’t realize is that when you’re at the playground or the grocery store, of course kids have meltdowns but when an autistic child has a meltdown its a sensory issue. Totally different,” said Chichester.
Years later they would form ‘Our Tribe’, with a mission to connect other black families, promote research on black autistic children and explore alternative ways to include their children into society.
“I’ve had those experiences where my daughter was receiving therapy, we would do skills or we would do water therapy and she would be the only African American child in these settings. I wanted her to have friends and people who look like her so she could recognize from whatever age group or on the spectrum that hey this is an adult on the spectrum, I can do this, so she could have that confidence,” said Chichester.
Josselyn says after the years of not receiving answers she felt a sense of anger, but once connected with other families that anger turned to hope.
“This is not something that’s being done on behalf of our community. This is something that we are doing by ourselves but because we care and because they are family,” said Okorodudu.
‘Our Tribe’ is made up of parents, caregivers and siblings who have autistic children or family members. The group also has parents who too are diagnosed as autistic. Chichester urges others to get involved in the group not only for emotional support but to give their children a sense of community.