BOSTON — These moms are in a fight for their children’s lives in a system they say is failing their children with autism.
“I was told by a doctor I was being dramatic and there was nothing wrong with her,” says Monique Johnson, Autism Advocate and mother.
An August American Academy of Pediatrics report found, black children with autism spectrum disorder (ASD) were diagnosed, on average, more than three years after their parents expressed concerns about their development.
“He was labeled a deviant child. I remember one school secretary called him bad,” says Sherraine Diaz, Autism Advocate and mother. Diaz’s son didn’t receive a diagnosis until he was 14. “We had to fight our way there and finally, in 2016, after we had a hospitalization for 2 weeks in Boston, the doors started opening and we were afforded services.”
Tiffany Payne struggled to get a diagnosis for her daughter while dealing with homelessness and a son with autism.
”Staying in a shelter, in a hotel/motel at the time. And trying to get diagnosis, evaluations,” says Payne. “Early intervention in the hotel room just to find out what’s going on with her as well as my son. And re-routing them from school to school to school just because we’re being placed in different areas in the state.”
Yahaira Lopez is a mom of a son with autism and the founder of Autism Sprinter, a group of parents working to make resources more accessible for all families.
”A lot of the workshops, a lot of the training weren’t happening in my communities, Roxbury, Dorchester, Mattapan,” says Lopez. “And that means it already put me and my family at a deficit when I’m trying to learn the resources and the skills; advocacy skills and the tools that I needed to make sure I really advocate for my son.”
This network of moms was invaluable to Monique Johnson.
“I feel my daughter is the level of autism people don’t talk about. She doesn’t have words,” says Johnson. “She’s 6 years old. She does not talk. This group of mothers was like, you do it first, you tell me how to do it. We were helping each other or whatever.”
April is Autism Awareness Month, but these moms’ message today is clear-- we need to move beyond awareness into action for equity.
This is a developing story. Check back for updates as more information becomes available.
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