In the spring of 1989, Debra Vines found her 18-month-old son, Jason, staring forward in his crib, as if in another world. Alarmed, she and her husband rushed him to the hospital.
After visiting several doctors, they finally received a diagnosis: autism.
Today, the Centers for Disease Control and Prevention estimates that 1 in 44 children in the United States is on the spectrum. But in the 1980s, only about four in 10,000 children were identified as having autism.
“I had never heard of autism outside of rain man,” Vines said, referring to the hit movie that had been released a few months earlier. “I got books, I went to the library, but I still felt lost, like I wasn’t a great mother.”
As Jason got older, Vines had to deal with his frequent tantrums and the occasional violent behavior that children with autism can display. His family moved from Chicago to Maywood, a small, predominantly black suburb, hoping there would be more services, but assistance lagged far behind that of wealthier communities. Vines says she was desperate for support.
“My whole life revolved around finding services for Jason. In order to get any kind of help I had to take a train, plane, bus and magic carpet to get there,” she said. “Multiple cocktails of drugs, changing doctors, changing hospitals. And I did most of it alone because my husband worked nights. I felt totally helpless.”
The support groups he found were in affluent communities. Not only was it difficult for him to arrive without a car, but when he arrived he felt out of place.
“I was the only black woman there, I was the only person who was low-income,” she said. “The women, they were great. They were giving me resources. But they were like, ‘It’s only $500.’ And I’m trying to figure out how I’m going to get groceries for next week. Imagine how I felt then, even more helpless.”
Eventually, Vines sought solace in drugs.
“I was a functioning addict. I still kept the red lipstick on. I was still his mother. You still saw Jason with me everywhere,” she said. “I kept things moving.”
He eventually ended up in prison, and after he finally got clean in June 2005, he had found his mission.
“I made a vow that I wouldn’t want any parent to have to go through what I’ve been through,” she said.
In 2007, Vines and her late husband, James Harlan, founded The Answer Inc., a nonprofit organization that supports families in underserved communities who have been affected by autism. To date, Vines says the group has provided programming and guidance to more than 4,000 families in the Chicago area.
“Families are always asking questions and we want to provide the answers,” she said. “I would say 95% of everything we offer is a blueprint for what I was missing as a parent.”
Many of Vines’ supporters are from black and brown communities, a demographic group known to face obstacles in autism diagnosis and treatment. The CDC reports that black and Hispanic children are less likely to identify with the disease, and Boston University researchers found that black children are five times less likely to receive early intervention services than children whites, in part because of racial bias and cultural stigma. .
Vines is working to change that. Once children are diagnosed, it helps connect families with the information and services they need, especially within the school system. Her organization also offers support groups for parents, a 24-hour helpline and a range of activities for people affected by autism.
Central to the group’s programming are free and low-cost classes held every Saturday at a local community center. These include tutoring, exercise, dance, nutrition and even a social skills class for young women that covers topics such as relationships and sex education. Open to people of all ages with autism, as well as those with intellectual or developmental disabilities, these programs offer students a valuable opportunity to socialize while giving their caregivers a much-needed break.
It’s been a long road, but Vines is confident he’s found the right path.
“Jason has taken me to places I never thought I would go,” she said. “But (he) made me grow into a woman I never thought I would be.”
CNN’s Kathleen Toner spoke with Vines about her work. Below is an edited version of their conversation.
CNN: Your organization has evolved to provide many services. How did it start?
Debra Vines: My work started to mainly support mothers because women want to be able to talk about what they are going through. We learn from each other, and having a child with special needs, we carry a lot: having to deal with your child screaming or banging your head, not being able to go anywhere because you can’t find anyone to watch your child. , not being able to work.
Many special needs parents don’t have many friends. It’s not that our friends don’t love us, but they stop calling. So, I wanted to tell my story so women wouldn’t fall down that rabbit hole I had been down. He wanted to help them be the best they could be for their son.
CNN: Now support men too.
Vineyards: Oh yes, men come to our support groups too, and we also have a group called “Just for Men”. It’s so funny because my late husband, he was going to some of the support groups with me and then he started saying, “Where are the men?” And so I said, “Well, why don’t you create a space for them?” So he did it! They went for nature walks, went to sports bars, went to games. And they ended up talking about their son and having solutions for each other, so that was amazing.
CNN: You also do a lot to educate the wider community about autism.
Vineyards: People fear what they don’t understand. We have a lot of kids who don’t have great social skills, and with the numbers growing with autism, we want to make sure the community is fully educated—the churches, the department stores, the legislators. And there are many things that have happened with police officers in our special needs community. For example, Jason had a med meltdown where he was very, very violent. And I had to call the ambulance. The fire department called the police. And they entered with weapons drawn. I tell them all the time: “No guns. My son has autism.” They weren’t listening. So we want to make sure that first responders are trained, and I’m proud to say that almost every village in Proviso Township (in Illinois) has been trained on the signs and symptoms of autism Advocacy is a gift I feel good about it, and it makes me feel great This is my high now.
Do you want to get involved? Take a look The Answer Inc. website and see how to help.
To donate to The Answer Inc. via GoFundMe, click here