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When Debra Vines’ son, Jason, was diagnosed with autism at 18 months old in the late 1980s, the number of children being diagnosed was one in 1,000.
Today, one in 50 children is diagnosed with autism.
“I think that the numbers have increase (over the years) because a lot of children were misdiagnosed,” said Vines, a Maywood resident, explaining why the number of children diagnosed with autism has spiked. “The spectrum is so wide from mild to severe (autism) and those that are in the middle—usually PDD (persuasive development disorder) and that falls into the autism spectrum.”
Vines’ desire to help Jason and provide autistic children and their families around the area with support and assistance led to her found The Answer, Inc., a 501c3 nonprofit organization dedicated to empowering families impacted by autism and other developmental differences such as Down Syndrome and cerebral palsy.
“Our core is autism, but we don’t turn anyone away,” Vines said.
Since its inception in 2007, The Answer Inc. has served around 4,000 families primarily in Proviso Township and the west side of Chicago.
“So many families are always asking questions, so we want to be able to provide the answers,” Vines said in a recent PBS NewsHour special that featured Jason and Vines’ husband, James Harlan (see PBS NewsHour Special later in this story).
Locally, The Answer, Inc. partners with the Maywood Park District, where the Spectrum University Tutoring Program has been taking place from 1:30 to 3:15 p.m. each Saturday and continues until April 22. There, teen-agers from ages 13-17 with autism and developmental disorders are taught by instructors that fully enhance and engage each student through reading, writing math and social skills. Additionally, a “Music N’ Me” program where teens age 13-17 with autism and developmental disorders are taught nutrition, dance and exercise is taking place from 3:30 to 5 p.m. each Saturday through April 22 at the Maywood Park District.
The Answer, Inc. also has a partnership with the Forest Park Community Center, and recently expanded its services to the West Humboldt Park Garfield Development Council on Chicago’s west side. There, families can gather information about autism and special needs, gain resources education and support, and network with other families and community agencies. An open house was held March 1.
The Answer, Inc. fields calls from an array of individuals, family members, schools and even legislators seeking help with autism-related issues and steers them to services that can help them.
“We don’t do treatment,” Vines said, “but what we do is help the families throughout the entire journey as it relates to advocacy, their peace for their children, supportive services, IEP (Individual Educational Report) support and awareness for the community as well.”
An Individual Education Report is required if a child receives special education services. It documents a child’s particular learning needs, what services the school provides and how progress will be measured.
“A lot of times families don’t know how to navigate their way through the IEP process,” Vines said, “so we help them out with that as well.”
Vines added that most of the calls she gets are from family members.
“I ask them to come into the office, just to see what they need,” she explained. “A lot of times family members just want somebody to talk to, someone that understands, because our friends—they love us and they tolerate us—but they don’t understand the journey that we go through.
“A lot of family members call just to vent. Or a lot of times they’ll have services right around the corner from them, but they don’t know how to navigate through the system. That’s what we teach families how to do.”
For family members who have a child with autism or a developmental disability, as Vines mentioned, “it’s a journey.”
“And it changes all the time,” she said. “Right now my son is 29 and he’s going through a whole new gamut of adulthood. When a family gets the diagnosis of autism—and primarily a lot of families of color—they get the diagnosis late because a lot of us don’t take our children to the doctor as much as we should. And then when you talk about screenings, a screening cost money.”
PBS NEWSHOUR SPECIAL
PBS NewsHour aired a special on autism in early February, titled, “Children of color with autism face disparities of care and isolation.”
The segment noted that “autism rates among African-Americans are the same as among whites, but African-American children are often diagnosed with autism at an older age, missing potential years of treatment.”
When it comes to autism, the program pointed out, “diagnosis skews white.”
Laura Anthony, a Children’s National Medical center psychologist, said during the segment: “If you’re anything other than a 7-year-old white boy—even if you’re a 7-year-old white girl—you’re less likely to be identified with autism.”
The Centers for Disease Control reports that the autism rate among 8-year-old blacks is 13.2 out of every 1,000—that’s 20 percent lower than the autism rate for white 8-year-olds. Among Latinos, the autism rate is 50 percent lower than for white children.
The undercounting of children of color, the program said, denies them appropriate care.
Jason is one of the fortunate ones. As noted earlier, he was diagnosed with autism at age 18 months. At first, Vines had to travel a half-hour by train to go to a support group. She was the only African-American woman in the group, and while she emphasizes that she was welcomed by the group and treated well, she said she felt isolated because the children in Vines’ support group were already in specialized services. Vines said she had to go outside of her immediate community to get help and support, instead of having that support and help where she lived.
“I found out, ‘You’re doing it all wrong, Debra; you’re doing it all wrong,’ ” she said. “And it’s because of where you live.”
There were children of color with autism, along with their families, in Vines’ community, but they needed to organize and come together to support their children and each other—just like families in white communities have been doing for decades. Hence, what led her to eventually found The Answer, Inc.
James Harlan, who’s part of The Answer, Inc. board of directors, admitted he once felt embarrassment that Jason wasn’t like his friends’ kids, but that was long ago. Now, James runs a program called, “Just for Men, for fathers whose children have autism, and he says he’s grateful to have Jason as his son.
“I tell the men at the meeting that I’ve learned how to love since I’ve had Jason,” Harlan told PBS NewsHour. “Because he loves unconditionally.”
8TH ANNUAL WALKATHON
The Answer Inc., will be hosting its eighth annual Autism and Special Needs Walkathon from 12 noon to 4 p.m. Saturday, May 6, at Proviso West High School.
Vines said the primary goal for this event is to “raise money to sponsor children to go to camp for an entire week.”
These special camps (Specialcamps.org), for children and adults with developmental disorders, are held in June in Oregon, Ill. The first camp takes place from June 4-9 and is for adults ages 21-and-over. The second camp (June 11-16) is for youths ages 7 to 20.
Activities include horseback riding, swimming, field sports, talent shows, crafts, singing and dancing.
“Our kids, they don’t have friends that they can go outside and play with,” Vines said. “Secondly, it gives the parents an opportunity for a week of rest for themselves. And it’s an awareness day for the community so the entire community comes out. We have fun and they get a chance to interact with our family.”
The Answer, Inc., is located at 7600 Roosevelt Road, Suite, 12, Forest Park. For more information, call 708-296-5651 or go online to: theanswerinc.org