By Tanya Babbar, Pittsburgh Media Partnership

When Kelly Cain, the mother of an autistic child in Pittsburgh, founded the Autism Caring Center in 2017, her goal was to help parents and families with autistic children feel like they had a safe place to receive community support. What started as a resource for people who understood the ins and outs of autism grew into a mission to educate those in her larger community who didn’t.

Through the Autism Caring Center, Cain began providing autism awareness training for first responders, schools and businesses in Pittsburgh’s southwest suburbs. For families with autistic children, the knowledge that the adults in their community can understand the behaviors and needs an autistic child may display is important. In the case of emergency situations in particular, how well first responders can recognize signs of autism and respond appropriately can increase the safety of everyone involved.

“Police officers, first responders, ambulances -– they all are making life-changing decisions in seconds,” Cain said.

“Just having one person trained on the scene can make a difference. It’s peace of mind if you’re living in a community with somebody with autism to know that your local fire departments are trained.”

In emergency situations, people with autism may display behaviors that would come across as noncompliant if displayed by a neurotypical person.

In March, the fatal shooting of an autistic Black 15 year-old in San Bernardino, Calif., made national headlines, calling attention to many of the existing dangers autistic individuals often face in police encounters and the need for increased autism-focused training for first responders.

Dr. Taylor Day, an early development and autism psychologist in Pittsburgh, said in her experience, narrow beliefs about what autism can look like still plague the medical community, In Day’s opinion, this outdated knowledge about autism often leads first responders to attack aggressive behaviors, rather than understand them as signs of autism, leaving the families of autistic children afraid of support systems.

“I still think within the medical community and first responders, there’s a lot of stereotypical views of what autism looks like, and so if individuals aren’t fitting those molds, then it’s not easily identified by these service groups,” Day said.

“Individuals and families should be able to seek support from these systems that we have and not fear how their autistic child is going to be treated, and I think there’s still a lot of fear as a result of that.”

Cain said that although training for autism awareness is available for first responders, she thinks it’s not always sought after. With the value of this in mind, The Autism Caring Center made the push to start advertising it to police departments, fire departments and other emergency services. In the past seven years since the center was established, Cain said it’s been well-received.

Cain said the center has provided training sessions for more than a dozen area emergency services, schools and local government entities, including the Canonsburg, Hanover and North Fayette volunteer fire departments, West Allegheny and Woodland Hills schools and boards of supervisors in Baldwin Borough and North Fayette Township.

While those training sessions are a plus, Cain said families with autistic children also need the support of the public in general. When communities are informed on autism, parents of autistic children can feel there is a greater sense of safety and acceptance for their children.

But in December of last year, Cain found herself feeling frustrated upon hearing about a case in Ohio Township where Allegheny County Children, Youth and Family Services (CYF) was unable to find a placement for an autistic child whose mother was arrested and charged with strangulation, simple assault, harassment, endangering the welfare of children and disorderly conduct. While many Allegheny County nonprofits provide resources to the community, Cain said she doesn’t feel that the county itself provides a stable place for autistic children to go in emergency situations.

“If that child alone wasn’t enough for [Allegheny County] to realize that they have a gap to fill, that should have been enough,” Cain said. “They had to realize it.”

“If you don’t have a family member that’s involved, or you’re a single mother, there’s nowhere to go.”

If an autistic child needs to be removed from their home in Allegheny County, the Department of Human Services first looks toward next of kin using the help of Kinship Navigators from the nonprofit A Second Chance, which promotes kinship care as a model for child welfare that can help eliminate racial and ethnic disparities in child care placements. Based in Allegheny County, the organization is the largest foster care provider to CYF.

According to the county CYF, over 60% of children who have been removed from their homes are in kinship placements. For children with developmental disabilities in kinship placements, DHS offers in-home behavioral and emotional support through A Second Chance.

When a kinship placement is not available, DHS relies on more traditional foster care settings, including therapeutic foster care for children with serious emotional or behavioral needs.

DHS said that when a child with a disability needs to be removed from a home and no placements are available, the county CYF relies on “least restrictive” placement options, such as respite foster homes or emergency temporary shelters. In some cases in the past when no safe placement was found, children with disabilities have had to stay in DHS offices for a few hours or a few days until a place became available.

While DHS works with a variety of providers to find behavioral support and placements for children with autism or other disabilities, Brenda Bulkowski, head of the DHS Office of Developmental Supports, said the need still outweighs what both the county and partner organizations can offer, especially when a child is not already registered in the DHS system.

“There is a shortage of available spaces that are just sitting there waiting,” Bulkowski said.

According to DHS, in Allegheny County, nearly 9,000 youth under the age of 18 enrolled in Medicaid have been diagnosed with autism. Of those 9,000, a little over half received services and treatment for autism through DHS in 2023. It’s not known how many autistic children live in county overall; the Centers for Disease Control estimated that as of 2023, one in 36 children nationwide was identified with autism.

The last statewide autism census update occurred in 2014, with those numbers based on 2011 data. According to paautism.org, the number of Pennsylvanians on the autism spectrum receiving services in 2014 nearly tripled over the previous 10 years, reaching more than 55,000. Nearly 80% of those receiving services were under the age of 18, and 8% were 4 years old or younger.

One of the county’s partner organizations, Jeremiah’s Place, serves as the only crisis nursery open in Pittsburgh. Located in East Liberty, the center is open 24/7 to take on child care emergencies.

Tammy Aupperle, the executive director at Jeremiah’s Place, said that as a crisis nursery, staff have to be prepared to quickly adapt to the wide range of needs children and families that come through the door might have. According to Aupperle, autism and developmental delays make up a large part of those needs.

Last year alone, Jeremiah’s Place served 356 children from 305 families, adding up to approximately 13,000 hours of care. Although Jeremiah’s Place welcomes calls for emergency situations, they do not operate as a drop-in day care center. For the range of services they provide, such as job training, respite care and temporary day care placement for parents struggling to secure child care, the organization still can’t take on everyone who reaches out for help.

“There really is a need,” Aupperle said. “We see that need every day, and it’s growing, and unfortunately, we have a waitlist. We still have families who…call us and because of our size, we’re just not able to see everybody.”

The struggle of having to turn children and families away is a familiar one for other nonprofits that serve children with autism in Allegheny County. At Wesley Family Services, a behavioral health care organization partnered with the county, the most sought-after autism services have lengthy waiting lists.

According to Kate Pompa, the vice president of child and family services at Wesley, most young autistic children in Western Pennsylvania seeking support need either applied behavioral analysis therapy (ABA) or intensive behavioral health services (IBHS). In Pompa’s experience, there are simply not enough professionals available to make these services accessible to all autistic children.

Pompa said many children and adolescents are affected by autism but only a few programs and professionals are available in the marketplace to work with them. Pompa said these programs tend to get full and most have waitlists.

Given the waitlists for autism services at Wesley, the organization took a step toward trying to address the problem in the county. On April 1, Wesley Family Services opened a new center and program in Monroeville for children under the age of 7 with autism or developmental delays. At the Autism Center for Growth, the services not only include skill development for autistic children, but parenting education as well.

Pompa said recently there was no waitlist for the center, and in the weeks leading up to its opening, she had the pleasure of seeing autistic children on waiting lists for other services instead receiving referrals to the new program.

On top of providing programming for young autistic children and their parents, the Autism Center for Growth hopes to attract more behavioral analysts who do ABA therapy to their organization.

“It’s much more desirable for them [behavioral analysts] to work in a clinic-based setting as opposed to out in the homes and communities,” Pompa said.

While ABA is the most popular therapy provided to autistic children, it’s drawn criticism in recent years from some in the autism community who argue that the practice is often too tough on children. To Day, this is where neurodiversity-affirming care becomes important.

“Traditionally, in terms of autism care, what we’ve seen is there’s been this large focus on you trying to reduce symptoms, and it historically has come from more of this mindset of fixing and curing,” Day said. “ Neurodiversity-affirming care focuses on that acceptance piece and promotes quality of life.”

Given the nuances around popular autism treatments for children, Day acknowledged that the issue isn’t cut and dry, and with a service shortage a reality for many families, decisions often come down to what parents can afford for their child.

“It’s not as easy as just being like, ‘Don’t do that.’ It might be the only way that a parent is able to get services for their child,” Day said.

When it comes to navigating a complex landscape, Day encourages parents to make informed decisions for their children. In her work, she aims to educate parents about ABA approaches she believes to be harmful, such as forced eye contact, acceptance of only spoken forms of communication or discouragement of stimming – self-stimulating behaviors that include rocking, jumping or spinning.

“I think that [advocating for neurodiversity-affirming care] becomes a really important piece, and that ABA centers themselves are recognizing the problematic practices, and they’re listening to lived experiences and willing to embrace that training and make those shifts,” Day said.

Day said it’s important for parents to remember that they are “the experts on their child” and should feel “empowered to advocate for what they feel in their gut is most important and going to serve their child best.”

When it comes to increasing the overall availability of autism services for children in Allegheny County, both those working in the nonprofit sector and in local government look toward growth in the field as needed for the future.

“There’s always more that can be done — it’s aligning what the state budget can afford,” Bulkowski said. “We are looking at some opportunities to expand, but with that expansion also comes the need for staffing.

“It’s a priority to really invest in workforce development, not just that recruiting part, but that retention part — how do we keep people interested and committed to this kind of work?”

In Pompa’s view, it’s no secret that these jobs can be challenging, especially when it comes to pay. Regardless of the difficulties, Pompa thinks the goal of attracting more young professionals to the autism services field — and getting them to stay — boils down to individual motivation.

“We need people that are passionate and driven to work with children that have disabilities because as providers, we can train them and help them and support them,” Pompa said. “But you have to want to do this job, and it is a hard job.

“It comes down to a passion to help others.”

Tanya Babbar is a student at the University of Pittsburgh and one of two spring semester interns at the Pittsburgh Media Partnership.