ALLENTOWN, Pa. — Being a parent is a full-time job, but for Misty Vicky, whose son, Wyatt, has autism, it can be particularly demanding.
Wyatt was nonverbal for 3 1/2 years, which led to many behavioral problems, Vicky said. Now 5 years old, he engages in self-injurious behaviors such as banging his head, scratching himself or biting himself. He has eating issues, struggles with holding utensils and often tries to run away, especially if he is in an open area.
“Last summer we had to have our whole yard fenced in, even in front of the front door, just for the safety of Wyatt. He’s really bad with waiting in lines or even the grocery store. I can’t tell you the last time we’ve been in a grocery store. I do grocery delivery now. Just because things in the community can be very triggering and hard for Wyatt,” Vicky said.
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However, Vicky said, the greatest challenge she faces isn’t managing Wyatt’s condition and its symptoms. It’s getting care and services for her son.
Vicky, a single mother who has sole custody of Wyatt, said on top of working a full-time job, she drives two hours a day, five days a week, to get her son treatment in Bethlehem through Pennsylvania Mentor. To get the time away from work, she takes unpaid time off through the Family and Medical Leave Act.
“We’re already a one-income household, so that’s income that I am missing out on,” Vicky said. “It has been a struggle, but I will have to continue to do the drive if that means my son can have services that are helping him.”
Vicky’s story is not unique. Many parents in the Lehigh Valley caring for children with autism face challenges due to a shortage of providers and limitations in services.
Over the last 20 years, autism diagnoses in the U.S. have skyrocketed. According to Johns Hopkins, diagnoses have increased 300%, primarily due to more expansive diagnosis criteria and increased screening. According to the Centers for Disease Control and Prevention, it is now estimated that 1 in every 31 children is on the autism spectrum.
At the same time, services have not kept up pace.
There is a significant shortage of board-certified developmental pediatricians, with only about 800 in the U.S., according to the Children’s Hospital of Los Angeles.
Long wait times for diagnosis
Ally Wiener-Avraham and her husband, who himself has autism, realized their son Azriel was different when he was about 2 months old. He met many milestones early, but his development patterns and behaviors didn’t match other children’s. And as he continued to grow they noticed more differences: He walked on his toes and constantly ran into walls. He also had an unusual response to touch — a light touch could leave him screaming like he was in pain, but he also would throw himself onto furniture or the floor without acting like he felt a thing.
“Transitions were incredibly difficult, and what I now know were autistic meltdowns could last for hours. Nothing we tried helped calm him,” Wiener-Avraham said.
Wiener-Avraham, of Allentown, said many programs that treat autism require an official diagnosis for children to receive services. And timelines are sensitive; the longer a diagnosis is delayed, the longer it takes for a family to get services for the child, which means the child’s development could be negatively affected. Early diagnosis is key.
Finding someone to evaluate and then treat Azriel took the family across three states. They started in New York, where they faced a two-year wait list for an evaluation, and where Azriel was repeatedly denied access to early intervention services.
When Azriel was 2 years old, they moved to Tennessee, where they also faced a two-year wait for an evaluation, although they were eligible to receive some intervention services without a diagnosis.
The family moved to the Lehigh Valley seeking additional help, and while Wiener-Avraham said help was easier to find, the family still faced roadblocks — in part because her son was now too old for early intervention services.
“I came to a state where they valued early intervention, but my son was already too old for early intervention when we moved here; he was 5. … every place that we went said he’s too advanced (in age),” Wiener-Avraham said.
Azriel was not diagnosed until he was 6 years old, and Wiener-Avraham said she was only able to get an appointment for him because another parent canceled and she was available to take the last-minute time slot.
The family was not alone in facing long wait lists. A 2023 report stated that two-thirds of specialty centers that conduct autism diagnoses had wait times of 4 months or more. But parents interviewed by The Morning Call said they waited for much longer.
Sarah Diedenderfer of Weisenberg Township said her son was diagnosed with autism right after his third birthday, after nine months of waiting. She said at one point they were on three wait lists, one as long as 18 months.
Vicky’s son Wyatt was diagnosed with autism when he was 18 months old, after his mother spent $3,000 to see an independent provider. Otherwise, he could have waited until November 2025 — when he would have been almost 5 years old, Vicky said.
Difficulty finding an appointment isn’t the only issue, said Wiener-Avraham, who founded and runs an autism activism organization called Tis the Tism. Children can be misdiagnosed by providers who don’t specialize in autism diagnosis, she said.
“I’ve had parents come to me with a slew of letters of diagnoses — obsessive compulsive disorder, oppositional defiant disorder, anxiety, attention deficit disorder, attention deficit hyperactivity disorder — but not giving an actual autism diagnosis. And really, that’s the underlying cause. And they’ve gone to multiple different doctors, but they can’t get in for an actual, real autism evaluation,” Wiener-Avraham said.
Wiener-Avraham also said some evaluators won’t see children over the age of 6; others won’t see children under 4 years old.
Searching for services
Once a child is diagnosed, they qualify for Medicaid insurance through the state and can be enrolled in certain services, but families enter an all-new obstacle course of getting those services.
Vicky, Wiener-Avraham, Diedenderfer and Michael Updegraff, a father in Upper Macungie Township whose son has autism, said the services offered by the state and in the Lehigh Valley are great, but accessing them can be a hardship.
Wiener-Avraham said that this goes for schools and care in the community. She said when she moved to the Lehigh Valley, she attempted to enroll Azriel, now 11, in private school but was told that even though he qualified for services, other children needed them more than he did, and he wouldn’t receive them.
“Often they will word things in a way where, ‘Yeah, they would benefit from it, but it’s not necessary. We’d rather them be in the classroom more than being pulled out.’ Even if the child really needs services. And I’ve heard lawyers tell school districts and tell special education directors, ‘If you cannot provide the services for the child because you’re understaffed, don’t qualify them for it.’ And that is a huge problem, a huge problem. Because our kids who are in need of these services, which the school system should be working on them, they’re being told to go elsewhere. And elsewhere has a wait list,” Wiener-Avraham said.
Updegraff said just working around bus schedules can be challenging. This is something many working parents have issues with, but his son’s autism also means that changes in routine can lead to problems.
“He gets upset if he gets dropped off at a different spot, he’s very particular where the bus drops him off, so it’s not as easy as, ‘I’ll just have a neighbor pick him up.’ He could have a full-on screaming meltdown,” Updegraff said.
Updegraff added that beyond school, getting services in daycare can be a challenge. Normal daycare is not necessarily an option, as his son Michael, 8, would need an aide with him at all times for the daycare to provide services to him, and when that aide has time off, he needs to take time off to watch his son every day.
Updegraff said that after enough headaches with daycare, he eventually quit his job so he could take care of his son. He now works at the Carbon Lehigh Intermediate Unit, where he makes half as much as he did at his previous job.
Just as in schools, children with autism may be denied or delayed from receiving care in the community. Wiener-Avraham’s daughter Ashira, 6, is also on the autism spectrum. Wiener-Avraham said she had a much easier time getting Ashira diagnosed than her son and she was able to access services through Pennsylvania’s early intervention program, which she said were stellar. However, her daughter was denied other services until she turned 4 years old.
Updegraff said when his son was placed on a six-month wait list for speech therapy services, he and his wife ended up paying $75 per hour out of pocket to see another provider.
Services closer to home?
There’s another issue complicating services for some parents: distance.
Vicky said it’s not by choice that she drives two hours five days a week — there is another Pennsylvania Mentor site, 10 minutes away from her home in Fogelsville, in Upper Macungie Township. But she said she can’t get approval for him to go there from Magellan Behavioral Health, the company contracted to manage behavioral health services for Medicaid members in Bucks, Lehigh, Northampton and several other counties. She has been attempting to appeal to Magellan but has had no success.
“If Magellan would approve him to go to Fogelsville, it would be a 20-minute drive a day, which I could make in a lunch break. I wouldn’t have to be on unpaid as FMLA anymore,” Vicky said.
Updegraff said he’s in much the same situation. The family also lives in Fogelsville but also has to drive to the Pennsylvania Mentor in Bethlehem for their son’s services, as often as five days a week during the summer, because Magellan won’t approve them to get services closer to home.
Diedenderfer said she too drove her son to Bethlehem, but was able to start getting to services closer to home at the Fogeslville Pennsylvania Mentor site. Now she drives 10 minutes one way instead of 30 minutes or more, but she had to fight insurance for that.
“Nothing is easy. They don’t make anything easy to get. The entire process for people who maybe don’t have the resources to do so, it’s very challenging. I will always fight — I will drive to the end of the world for my kid to get services because I am able to do that. However, there are a lot of families that can’t do that and that’s really frustrating for me as a mom because I see how much I’m putting into it and I’m still not getting everything I need,” Diedenderfer said.
Sevita Health, the parent company of Pennsylvania Mentor, declined to comment for this story. Magellan did not respond to requests for comment.
Parents and providers’ issues with Magellan have reached Lehigh County Controller Mark Pinsley, who said he is investigating.
According to information Pinsley provided to The Morning Call, from 2021 through the end of 2025, Magellan received 20,311 requests for intensive behavioral health services from Lehigh County residents, and denied 125. During the same time period, 182 complaints of dissatisfaction with either a provider or Magellan were filed with the county, and 169 grievances over a denial for service by Magellan were filed. About 21% of grievances led to a decision being overturned.
According to the county, service denial rates are monitored on a monthly basis and discussed with the Pennsylvania Office of Mental Health and Substance Abuse Services on a quarterly basis. The county and Magellan also work together to determine and address the access needs of members, but not all services have standard requirements for access that are set by the state.
The future
A new center that Good Shepherd Rehabilitation plans to open this year could help alleviate some of the issues families are facing.
The Autism and Neurodevelopmental Wellness Center, which is set to open this fall in Upper Macungie, has been codesigned by the community with the demands and needs of neurodivergent individuals and their families in mind, according to Good Shepherd.
The center will have licensed counselors providing treatment based on evidence-based modalities and therapies, including developmental, individual-differences and relationship-based frameworks. It will also hold classes, art and music therapies.
But another element of the center is support. A care navigator will be available to help families and individuals with insurance, referrals and connecting with community agencies, Good Shepherd said. And the center will also serve as an environment where neurodivergent individuals and their families can relax and connect with others like them.
“For us, your voices made one thing unmistakably clear: Our region is ready for something more — something collaborative, inclusive and built with the community at the center,” Carry Gerber, vice president of advancement and marketing at Good Shepherd, said during a news conference.
While Good Shepherd’s center will provide more options and services to parents and families, it alone will not fix the broader regional issues of provider availability and access.
Wiener-Avraham said it is never too early for parents to start advocating. The state’s early intervention program is there and available for parents. She said waiting until later or until there is absolute certainty will just mean more time on wait lists. She encouraged parents to trust their instincts even if doctors tell them to wait. And if a doctor or a teacher suggests you look into getting your child evaluated, definitely don’t wait.
She added that parents should try to get on every wait list they possibly can when they are trying to get their child evaluated. There is always a chance that someone will cancel and you are the person who can fill the time slot.
“This is a difficult journey and you don’t need to do it alone. Parents should seek out support groups, other parents to help guide them along this journey because that’s where I started,” Wiener-Avraham said. “This is why I started Tis the Tism. To help parents through the waiting process. What can I do right now? My kid is 5 years old and peeing in public because they don’t know the social skills. How can I stop this behavior right now? My kid’s having tantrums and won’t leave the house. I can’t even get them to school. The school’s not helping. There’s no therapy in place. There’s no diagnosis. What could I do now? Reach out to parents.”
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