Parents find support for adult daughter with autism

Abigail Wolken

New numbers released last month suggest more U.S. children are being diagnosed with autism and at younger ages.

In an analysis of 2018 data from nearly a dozen states, researchers at the Centers for Disease Control and Prevention found that among 8-year-olds, one in 44 had been diagnosed with the developmental condition.

While the number of cases has been on the rise for several years, experts attribute it more toward wider awareness and availability of services rather than a true increase in the number of people with autism spectrum disorder.

A separate CDC report indicates that children were 50% more likely to be diagnosed with autism by age 4 in 2018 than in 2014.

David Wolken's daughter Abigail was diagnosed with autism around that age but he believes she could have been diagnosed sooner had doctors taken him and his wife April more seriously.

"Up to a year old, she was starting to develop normally," David said. "Then a little after that, she stopped giggling and laughing and engaging with us. She wasn't talking."

When David expressed his concerns to Abigail's first pediatrician, he was told she was just developing late.

"A lot of doctors didn't know about autism at the time," David said, adding that one told him not to worry because Einstein didn't talk until he was 4 years old.

By the time Abigail was 4, her parents demanded she be tested. Initially there was hope that Abigail might have a milder condition. She was enrolled in an autism school where the family lived in Colorado.

"After a few years they finally said she was on the severe scale and probably wouldn't be able to do a lot," David recounted. "Mentally she's smart but doesn't act like she's more than 2 or 3.…She knows what we're telling her; she just can't communicate."

Now 20, Abigail loves puzzles and can get past a computer password in nothing flat. "She's keen about watching people and knows exactly what's going on," David said.

She is still nonverbal and can be prone to strong outbursts. Noise and too many people in a room make Abigail particularly anxious, according to her father.

"At one point, she'd hit her head on the wall," he explained. "She doesn't do that that much anymore but she'll still hit things because she gets so frustrated.

"I think that's one of the hardest parts is when they start doing that, and there's not a lot you can do but try and hold them back."

David recounted that he and April have had the police called on them "about a half dozen times" because people have misinterpreted their efforts as child abuse. Worse are the stares and mumbling under their breath of those who'd think Abigail was a "brat" for having a fit.

"It takes a toll on us," he said. "It's really hard because people don't understand.…

"My biggest thing is for people not to judge kids when you see them in a store throwing a fit…Most of the time, it's not a spoiled brat; it's usually autism."

David believes one problem is that when autism is depicted on television or in movies, it's usually only milder cases.

"Nobody ever really explains the worst part of the autism," he said, "and what the parents go through. There've been times when my wife would just be in tears or that I'd be ready to just give up."

David said he'd advise people that if they know someone with an autistic child, just support them as much as possible. He considers himself and April lucky that they've managed to keep their marriage together when many other couples in their situation separate.

"Parents go through a lot and it can be stressful on them," he said.

The family moved to Kentucky as Abigail just turned 18. Though her parents were preparing to enroll her in public school since there were no autism schools in this area, David said that she ultimately aged out of the system before they got the ball rolling.

"If she was in a school setting like they have out here, that would be a little bit harder for her to be with all kinds of other kids," he said.

But the family did find that resources were available to them here, with David noting they got help through a doctor's referral and he's been able to help a few parents himself through the local autism support group on Facebook. He praised how hard local caseworkers have worked for them -- getting Abigail into a number of programs since she qualified last March. A day program offered the parents some relief but another possibility was just around the corner.

The Wolkens cared for Abigail, the elder of their two daughters, until about four months ago -- with April being a stay-at-home mom while David works 10-14 hours a day as a delivery driver. Since they're getting older and David has begun to suffer his own health issues, they decided to transition Abigail into managed home care. For several years, his three sons from a previous marriage had been able to help but they're now grown with their own homes. Abigail's sister helps as well but just turned 13.

"It was getting really hard for us to take care of her," David explained. "She gets bigger and stronger, and when she has an outburst or fit, it's really hard to manage.

"We had a lot of support from her caseworkers and behavioralists before we made the decision."

David explained the system as being more similar to foster care than a group home -- adding that the transition wasn't an easy one at first. Abigail was placed with three different caregivers in just the first week, according to David, but they ultimately found a woman with three daughters of her own who was the right match.

"I don't know what it was but she did really good and it wasn't hard at all to transfer," he said of the new home where Abigail lives through the week. She returns to the Wolkens for most weekends.

"We can see her whenever we want," David added. "We didn't have to give up guardianship; they have to come to us and get our approval when certain things are done."

The change of environment has done wonders for Abigail, her father continued. Always a picky eater, according to David, Abigail is eating more kinds of food. She'll also let her caregiver do her hair when it was something she didn't want touched before.

"It did her good and that's what we ultimately wanted for her," David said.

Trending Video

Recommended for you