For the first 15 years of his life, Ralph Barr was treated for attention deficit disorder. He would get some special education classes in school as a result, but they didn’t fully encompass his educational needs.

Pam Barr, Ralph’s mother, said Ralph finally started getting the resources he needed when he was diagnosed with autism at 15. The diagnosis opened doors for what was available to Ralph, who is now 34, but it still took some searching for the family to find what they needed for support services.

“That's what they were treating him as, ADD, and it allowed him to have special-education classes, but it didn't do the full thing,” Pam said. “Parents have to not only accept the autism diagnosis, but they have to be willing to work for and sometimes even fight for what's in their child's best interest.”

The Barrs moved to Butler from Ohio in 2007, after hearing that Pennsylvania had a wealth of resources for people with neurodivergent conditions.

Krystin Smith, inclusive autism program manager at Parents in Toto, a Zelienople-based resource center that Ralph has attended since 2010, said people with autism can receive a waiver through the Department of Human Services that will fund their treatment plans, as well as provide for some of their other financial needs. The waiver, however, can take some time to be awarded.

“The autism waiver is based on need, so because Ralph is an adult who lives with his parents, he was bumped down the list. He had to wait two years to get the services,” Smith said. “In Pennsylvania, support for elementary aged students with neurodivergent diagnoses is amazing; once you get the autism waiver ... your supports are covered nearly forever.”

Ralph is now a program facilitator at Parents in Toto, and said that although he found a place where he can work and function comfortably, he still faces some challenges when it comes to interacting with the rest of the world.

“It's still kind of hard to do, especially trying to find a job,” Ralph said. “Some places just don't want to work with you if you're not fast enough or make too many mistakes.”

Smith said one of the biggest reasons people attend the free support groups and programs at Toto is to find avenues and support for their needs, especially once they leave the public school system.

“That's a huge challenge is that hurdle, then there is that question of, ‘I'm done with school, what do I want to do with my life,’” Smith said. “Another big one again is another universal thing, ‘Who am I when I grow up.’”

Butler County Human Services is the government agency that handles autism-related supports in-county.

The Alliance for Nonprofit Resources helps families navigate the system. Melissa Vettori, family liaison for the ANR, said the agency can help people not only apply for the autism waiver, but connect them with the resources it grants access to.

“What I do for them is I provide resources that are in the community,” Vettori said. “We provide parent support groups in the county, and that is for families of people with individuals with autism, we provide opportunities for recreational opportunities as well.”

According to Vettori, there are about 730 individuals with intellectual disabilities and autism in Butler County being overseen by Butler County Human Services. While that number doesn’t account for everyone with mental disability needs in the county, Vettori said connecting with Human Services is one of the first steps necessary to receiving help.

The ANR department Vettori works in can also be an early step for people who want to be tested for autism, or figure out what needs someone wants to address through support.

“They come into our program, and intakes are completed with the individual who has disabilities who qualify under the state eligibility criteria,” Vettori said. “We complete a life course tool on the individual, and that life course tool helps arrange out any current achievements or any vision on what the individual sees as a good life for themselves.”

Pam said working with nonprofit agencies to find out what resources could best help Ralph was a good entry point for her family, especially when he was exiting high school.

“He needed socialization at first, then he moved on to doing a little more job stuff,” Pam said. “When he first aged out (of high school), we had a lot of trouble finding places to work with. Everything just blossomed for him once he got that waiver. That qualified him for some medical coverage and some therapies; if he needed 10 hours a week, he would get it.”

In Pennsylvania, people with mental disabilities and neurodivergent conditions can stay in the public school system until they are 21 years old. Smith and Vettori said that with the autism waiver offered through the state, people with those conditions can still be involved in educational environments free of charge.

“That's one of the missions is to help that individual figure out what they want to do,” Vettori said. “There are opportunities for employment, there are job coaches. We work a lot with the schools, so a lot of times people will get through us from school. A lot of times we are getting people of transition age through the schools.”

In the near-20 years Ralph and his family have lived with his autism diagnosis, the social climate has changed regarding the treatment and information about neurodivergent conditions, Pam said.

Smith also said research has led to changes in the diagnosis of neurodivergent conditions.

“When I got into the white boys who had a certain level of functioning, and anyone who didn't fit that bubble was something else,” Smith said. “Now they are finding that people of different races, genders, socioeconomic classes, they all can have autism and behave a little differently.”

Treatment has also changed, and has gone from being clinical, as Smith described, to tailored to a person’s ability level and needs. She said Toto was designed in 2008 by its founder, Mary Limbacher, to be a comfortable and non-formal environment.

“My approach is very much like a trauma-informed care,” Smith said. “I try to get to know everyone and try to get them comfortable with the environment. Wherever people are, I try to meet them where they are and make them feel comfortable.”

While the autism waiver grants a person access to support, the world outside of that support can be “lacking” to people with neurodivergent conditions, according to Pam.

Going from high school to secondary education is particularly difficult, Pam said.

“Some colleges don't want to accept Individualized Education Programs — they specify if a person needs extra time to do tasks, or needs assistance lifting even,” Pam said. “That's something else sorely lacking is universities and colleges that will accept. In order to fully accept and integrate the autistic people.”

Smith also said another client of Toto has experienced some troubles navigating the job market, where opportunities for neurodivergent people can go against their abilities and their aspirations.

“One of our friends has been going through a rough time trying to find a job. She very much wants to work in something creative; Michael's, Hobby Lobby, but the jobs they keep having her shadow are stocking jobs,” Smith said. “They haven't found a way to merge the things she wants to do. There aren't supports in ventures she wants to work in.”

Although Ralph has also encountered troubles in the job market, his abilities in working alongside other people with conditions similar to his own landed him part-time work with Toto.

According to Smith, people in the support groups hosted by Toto gravitated to Ralph, who she said performed numerous good deeds from walking her out after late sessions to driving people to places they needed to go, which is what led to his hiring at the nonprofit.

“There is something about Ralph's patience that makes people want to ask him things,” Smith said. “Ralph was an asset, and that's why we brought him on board.”

Smith said people with autism can have the abilities necessary to work in positions held by neurotypical people, but it can just take some time or effort for them to adapt.

“The changes that need to be made in the autism community are not changes that need to be made by the autism community,” Smith said. “They need to be made by the external community.”

Ralph said he noticed that people with mental conditions often need to advocate for themselves more vigorously than neurotypical people to get positions they want. Pam agreed, and said she hopes to see the atmosphere change.

“I think employers need education on what type of jobs to offer these people,” Pam said. “It's like they're set in that mode that autistic people can only do this kind of job.”

Ralph said he is happy to work at Toto part-time, to share the experiences and knowledge he has gained through the center in his 12 years attending its sessions.

“I'm doing things I can enjoy and I am giving back to people who are like me,” Ralph said. “There are some places that could work out, but they are kind of limited for how long.”

For information on resources for mental disabilities, contact the intake department at Butler County Human Services at 724-284-5114.

What is neurodivergent

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Neurodivergent is a nonmedical term that describes people whose brain develops or works differently for some reason. This means the person has different strengths and struggles from people whose brains develop or work more typically. While some people who are neurodivergent have medical conditions, it also happens to people where a medical condition or diagnosis hasn’t been identified.

Source: Cleveland Clinic