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 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. During emergency situations in particular, first responders’ ability to 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 may 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 how autistic behaviors manifest still plague the medical community. She said these outdated perspectives often lead first responders to respond in kind to aggressive behaviors, rather than understand them as signs of autism.
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“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, it isn’t always sought after. Seven years ago, the Autism Caring Center started offering it to police departments, fire departments and other emergency services, and it has so far been well-received, Cain said.
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.
While those training sessions help equip professionals, 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 felt frustrated upon hearing about a case in Ohio Township in which 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.”
In crises, options are scarce
If an autistic child needs to be removed from their home in Allegheny County, the Department of Human Services [ACDHS] first looks toward next of kin.
According to the county CYF, more than 60% of children who have been removed from their homes are in kinship placements.
When a kinship placement is not available, ACDHS relies on more traditional foster care settings, including therapeutic foster care for children with serious emotional or behavioral needs.
When a child with a disability needs to be removed from a home and no placements are available, CYF relies on “least restrictive” placement options, such as respite foster homes or emergency temporary shelters, according to ACDHS.
While ACDHS works with a variety of providers to find behavioral support and placements for children with autism or other disabilities, the need still outweighs what the county and partner organizations can offer, said Brenda Bulkowski, head of the county’s Office of Developmental Supports. That’s especially true when a child is not already registered in the department’s system.
“There is a shortage of available spaces,” Bulkowski said.
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In Allegheny County, nearly 9,000 youth under the age of 18 enrolled in Medicaid have been diagnosed with autism. Of those, a little over half received services and treatment for autism through ACDHS in 2023. It’s not known how many autistic children live in the county; the Centers for Disease Control estimated that as of 2023, one in 36 children nationwide was identified with autism. Allegheny County includes around 226,000 residents under the age of 18.
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, 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 of children and families that come through the door. According to Aupperle, autism and developmental delays make up a large part of those needs.
Last year, Jeremiah’s Place served 356 children from 305 families, adding up to approximately 13,000 hours of 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.”
Staff shortages, hard choices
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]. Pompa said there are simply not enough professionals available to make these services accessible to all who need them.
Pompa said many children and adolescents are affected by autism, but only a few programs and professionals are available 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 countywide shortage. In April, Wesley 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 include parenting education in addition to skill development for autistic children.
Pompa said recently there was no waitlist for the center, and in the weeks leading up to its opening, she was pleased to see autistic children on waiting lists for other services instead receiving referrals to the new program.
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Officials in the nonprofit sector and in local government say workforce development efforts — including training, recruitment and retention — are essential for meeting future needs.
“There’s always more that can be done — it’s aligning what the state budget can afford,” said Bulkowski, of ACDHS. “We are looking at some opportunities to expand, but with that expansion also comes the need for staffing.”
Pompa believes 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 junior at the University of Pittsburgh and spent the spring semester working as an intern for the Pittsburgh Media Partnership.
