For parents raising children with autism, the journey is often characterized by immense love, unwavering dedication, and a persistent, often exhausting, battle for adequate care and support. In the Lehigh Valley, this struggle is amplified by a growing diagnosis rate, a critical shortage of specialized providers, and systemic challenges in accessing essential services. The experiences of families like Misty Vicky and Ally Wiener-Avraham illuminate a critical need for increased resources and streamlined processes within the autism care system.
Misty Vicky’s daily life is a testament to the demanding reality of parenting a child with autism. Her five-year-old son, Wyatt, who was nonverbal for his first three and a half years, presents significant behavioral challenges. These include self-injurious behaviors such as head-banging, scratching, and biting, alongside eating difficulties, struggles with fine motor skills like utensil use, and a persistent tendency to bolt, particularly in open environments. The need for constant vigilance has reshaped their family’s routines and environment.
“Last summer, we had to have our entire yard fenced in, even in front of the front door, just for Wyatt’s safety,” Vicky shared. “He’s really bad with waiting in lines or even at the grocery store. I can’t tell you the last time we’ve been in a grocery store. I do grocery delivery now, simply because things in the community can be very triggering and hard for Wyatt.”
While managing Wyatt’s condition is a significant undertaking, Vicky identifies the greatest hurdle as navigating the complex system of obtaining care and services for her son. As a single mother with sole custody, Vicky juggles a full-time job with a demanding daily commute. She drives two hours each way, five days a week, to ensure Wyatt receives treatment through Pennsylvania Mentor in Bethlehem. To accommodate these appointments, she utilizes unpaid leave under the Family and Medical Leave Act, impacting her household’s already strained single income. “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,” she stated, underscoring her commitment despite the personal and financial sacrifices.
Vicky’s narrative is not an isolated incident. Across the Lehigh Valley, numerous families caring for children with autism are confronting similar obstacles, largely driven by a scarcity of qualified providers and limitations in service availability.
The Escalating Demand: A Surge in Autism Diagnoses
The landscape of autism diagnosis has undergone a dramatic transformation over the past two decades. According to Johns Hopkins Medicine, autism diagnoses in the United States have surged by approximately 300%. This increase is attributed to a combination of factors, including expanded diagnostic criteria and more widespread screening protocols. Consequently, the Centers for Disease Control and Prevention (CDC) now estimates that one in every 31 children in the U.S. is on the autism spectrum. This escalating prevalence underscores the growing need for robust and accessible support systems.
However, the infrastructure for providing services has struggled to keep pace with this demand. The U.S. faces a significant deficit of board-certified developmental pediatricians, with an estimated mere 800 practitioners nationwide, according to the Children’s Hospital of Los Angeles. This shortage directly contributes to lengthy waiting periods for crucial early interventions and diagnoses.
The Agony of the Wait: Long Road to Diagnosis
For Ally Wiener-Avraham and her husband, the realization that their son, Azriel, was developing differently emerged around two months of age. While he met some developmental milestones early, his behavioral patterns diverged significantly from his peers. As Azriel grew, these differences became more pronounced: he exhibited toe-walking, frequently collided with walls, and displayed an unusual sensitivity to touch, where light contact could elicit screams of pain, yet he would also hurl himself onto furniture without apparent discomfort.
“Transitions were incredibly difficult, and what I now know were autistic meltdowns could last for hours. Nothing we tried helped calm him,” Wiener-Avraham recalled.
The process of obtaining an official diagnosis, often a prerequisite for accessing specialized programs and therapies, proved to be an arduous and geographically extensive undertaking for the Wiener-Avraham family. They began their search in New York, where they encountered a daunting two-year waiting list for an evaluation, and Azriel was repeatedly denied access to early intervention services.
Seeking better prospects, the family relocated to Tennessee when Azriel was two years old. While they found eligibility for some intervention services without a formal diagnosis, another two-year wait for an evaluation persisted. Their move to the Lehigh Valley was motivated by a hope for more accessible support. Although Wiener-Avraham found assistance easier to come by compared to their previous locations, new challenges arose, primarily due to Azriel aging out of 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,” Wiener-Avraham explained. “Every place that we went said he’s too advanced (in age).”
Azriel was finally diagnosed at the age of six, an appointment secured only through a last-minute cancellation that Wiener-Avraham was fortunate to fill. This experience mirrors a broader trend: a 2023 report indicated that two-thirds of specialty centers conducting autism diagnoses had wait times of four months or longer. However, parents interviewed by The Morning Call reported significantly longer periods.
Sarah Diedenderfer of Weisenberg Township shared that her son received an autism diagnosis shortly after his third birthday, following a nine-month waiting period. At one point, her family was on three separate waitlists, one extending for 18 months. Misty Vicky’s son, Wyatt, was diagnosed at 18 months, but this required an out-of-pocket expense of $3,000 for an independent evaluation. Without this, he faced a potential wait until November 2025, by which time he would have been nearly five years old.
Beyond the lengthy waitlists for initial evaluations, Wiener-Avraham, who now leads the autism advocacy organization "Tis the Tism," highlights the critical issue of misdiagnosis by practitioners lacking specialized expertise in autism. “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,” she stated. “They’ve gone to multiple different doctors, but they can’t get in for an actual, real autism evaluation.” Furthermore, some evaluators impose age restrictions, refusing to see children either under four or over six years old, further limiting options.
The Service Obstacle Course: Navigating Support Systems
Once a child receives an autism diagnosis, they typically qualify for Medicaid and are eligible for various services. However, families then enter a new phase of challenges in accessing these much-needed supports. Vicky, Wiener-Avraham, Diedenderfer, and Michael Updegraff, a father from Upper Macungie Township, all concur that while the services available in the Lehigh Valley are commendable, the process of obtaining them is fraught with difficulty.
Wiener-Avraham recounted an instance where her son, Azriel, now 11, was denied admission to a private school despite qualifying for services. She was informed that other children had a greater need, effectively barring Azriel from receiving support. “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,” she explained. “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… Because our kids who are in need of these services… they’re being told to go elsewhere. And elsewhere has a wait list.”
For Updegraff, even logistical elements like school bus schedules present complex challenges, compounded by his son’s autism. Changes in routine can trigger significant distress. “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,” he said.
Beyond school, securing appropriate childcare presents further hurdles. Standard daycare is often not a viable option for his eight-year-old son, Michael, who requires a dedicated aide. When this aide is absent, Updegraff must take time off work to care for his son. The cumulative stress of these logistical and caregiving demands led Updegraff to leave his previous, higher-paying job. He now works at the Carbon Lehigh Intermediate Unit, earning half his former salary, to better manage his son’s needs.
Similarly, children with autism can face delays or denials for community-based care. Wiener-Avraham’s six-year-old daughter, Ashira, also on the spectrum, benefited from Pennsylvania’s early intervention program, which she described as "stellar." However, Ashira was denied other services until she reached the age of four. Michael Updegraff’s son was placed on a six-month waitlist for speech therapy, prompting him and his wife to pay $75 per hour out-of-pocket for an alternative provider.
The Distance Barrier: Services Beyond Reach
The geographical distance to specialized services adds another layer of complexity for many families. Misty Vicky’s two-hour daily commute to Pennsylvania Mentor in Bethlehem is not a matter of preference. A site just ten minutes from her home in Fogelsville exists, but Magellan Behavioral Health, the contracted manager for behavioral health services for Medicaid members in several counties including Lehigh, has not approved her son’s attendance there. Despite ongoing appeals, Vicky has seen 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 FMLA anymore,” Vicky explained, highlighting the significant relief such a change would provide.
The Updegraff family, also residing in Fogelsville, faces a similar predicament, commuting to the Pennsylvania Mentor site in Bethlehem as often as five days a week during the summer. Magellan’s refusal to approve services closer to their home necessitates this extensive travel. Sarah Diedenderfer also commuted to Bethlehem but eventually secured approval for services at the Fogelsville Pennsylvania Mentor site, reducing her travel time significantly. However, this required a protracted battle with her insurance provider.
“Nothing is easy. They don’t make anything easy to get,” Diedenderfer stated. “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.”
Sevita Health, the parent company of Pennsylvania Mentor, declined to comment for this story. Magellan did not respond to requests for comment.
The persistent issues surrounding Magellan’s service denials and approvals have garnered the attention of Lehigh County Controller Mark Pinsley, who has initiated an investigation. According to data provided by Pinsley 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, denying 125. During the same period, 182 complaints regarding provider or Magellan dissatisfaction were filed with the county, alongside 169 grievances concerning Magellan’s service denials. Notably, approximately 21% of these grievances resulted in a decision being overturned. The county monitors denial rates monthly and discusses them with the Pennsylvania Office of Mental Health and Substance Abuse Services quarterly. While the county and Magellan collaborate to address member access needs, not all services adhere to standardized state-mandated access requirements.
Glimmers of Hope: New Centers and Community Support
Amidst these systemic challenges, new initiatives offer potential relief. Good Shepherd Rehabilitation is slated to open the Autism and Neurodevelopmental Wellness Center this fall in Upper Macungie. This center has been developed in collaboration with the community, aiming to address the specific needs of neurodivergent individuals and their families. It will offer licensed counselors providing evidence-based therapies, along with classes and art and music therapies. A crucial component will be the presence of a care navigator to assist families with insurance navigation, referrals, and community resource connections. The center also aims to provide a supportive environment where neurodivergent individuals and their families can connect.
“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,” said Carry Gerber, vice president of advancement and marketing at Good Shepherd, during a press conference.
While Good Shepherd’s center promises to expand options and services, it is acknowledged that it cannot single-handedly resolve the broader regional issues of provider availability and access.
Empowering Advocacy: A Call to Action for Families
Ally Wiener-Avraham strongly advocates for proactive parental involvement. She emphasizes the importance of utilizing the state’s early intervention program and urges parents to trust their instincts, even when faced with medical advice to wait. “It is never too early for parents to start advocating,” she stated. “Waiting until later or until there is absolute certainty will just mean more time on wait lists.” She encourages parents to pursue evaluations promptly if suggested by doctors or teachers. Wiener-Avraham also advises parents to join every available waitlist when seeking evaluations, as cancellations can create opportunities.
“This is a difficult journey and you don’t need to do it alone,” she added. “Parents should seek out support groups, other parents to help guide them along this journey because that’s where I started. 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.”
The collective experiences of families in the Lehigh Valley highlight a pressing need for systemic improvements in autism diagnosis and service delivery. Addressing the shortage of providers, streamlining access to care, and ensuring equitable service distribution are critical steps toward alleviating the immense burdens faced by these dedicated families.
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