When Lisa Marchini’s two daughters were first diagnosed with autism, she was overwhelmed with questions and concerns.
“But once your mindset changes to problem-solving instead of worrying, it gets much easier,” says Marchini of Ross Township, whose daughters will start first and fourth grades in the fall. “I needed to find out how to best help my children and who could do that.”
As the rate of people diagnosed with autism has increased, so has understanding and a willingness by community organizations to provide sensory-friendly services and activities for families. This is especially true in Pittsburgh, where families can take advantage of numerous sensory-friendly experiences, events and support organizations.
Autism is a neurological disorder that can impact a child’s development, senses and speech and language. According to 2014 statistics from the Centers for Disease Control, autism occurs in every 1 out of 68 births and is more prevalent in boys than girls.
“Parents come in and say my child has these behaviors,” explains Viki Jewell-Mahler, pediatrician with CCP Moon Wexford South Fayette. “Or I notice behaviors and I suggest that the child be evaluated for social delays.”
There are a few options for screening. Any child from birth to age 3 living in Allegheny County is eligible for developmental screening by Alliance for Infants and Toddlers.
Jewell-Mahler notes that while the alliance screens children up to age 3, other agencies including the Watson Institute, Wesley Spectrum Services or Laughlin Children’s Center will do screenings at any age. Children’s Hospital Child Development will work with children up to age 8.
“These programs help parents locate resources and advise parents to apply for medical assistance, wrap-around services and also help parents interact with their child,” explains Jewell-Mahler.
If a child does meet the diagnosis of autism, a range of early intervention services are available, including home therapy as well as social activities and preschools. The Allegheny County Family Resource Guides lists public and privately funded early intervention providers in southwestern Pennsylvania.
Several schools are available for children with autism starting at the preschool level. DART (Discovery, Assessment, Referral and Tracking) is a preschool early intervention program funded by the Allegheny Intermediate Unit. Children must meet eligibility requirements but services are free.
LEAP (Learning Experiences: An Alternative Program) provides early intervention services to preschool children diagnosed with an autism spectrum disorder and their typically developing peers. The Watson Institute runs LEAP preschools in Sharpsburg, Butler and Sewickley.
Advocacy and support
Several organizations offer families assistance on finding everything from summer camps to support groups.
Autism Connection of Pennsylvania has been around for 20 years and doesn’t get any government funding, relying instead on individuals, foundation and corporate sponsorship to support its activities. Autism Connection has autistic board members, including children with autism and autistic adults.
“Life and society create challenges for people with autism. Our mission is to be a lifeline to support families and autistic adults with support, information and advocacy,” says Executive Director Lu Randall. “We take about 100 requests for help via email or calls per month. People ask for help with diagnosis, school advocacy, social support, specialty referrals, homelessness, discrimination and more.”
Autism Connection also sponsors 69 support groups for parents, teens, adults, spouses and grandparents in southwestern Pennsylvania.
“We’re doing a project right now to work for best outcomes with the Pittsburgh Police Bureau and people with autism. The police are very open and families are hosting plain clothes police officers in home and community outings so they can experience autistic culture and family culture,” explains Randall.
Autism Connection hosts a summer camp fair in early February for families to talk with camp staff to find out what fits. They also sponsor autism-friendly Santa and Easter Bunny at local malls with the help of University of Pittsburgh volunteers and graduate student interns. And the group’s weekly email newsletter highlights events and activities.
The Parent Education & Advocacy Leadership Center (PEAL Center) is a federally funded resource available in every state that offers professional training and family guidance for children. This resource helps families navigate the special education system for children from birth to age 26, explains Jane Stannic, western region parent adviser, adding that the PEAL Center offers one-to-one parent advising when families call in with questions about an individualized education program or inclusive school services.
Autism Society of Pittsburgh, the local chapter of the national Autism Society of America, organizes Camp SPEAK and provides advocacy, information and referral services.
“We organize Camp SPEAK, a month-long camp for children ages 5 to 21,” Heidi Buckley, director of community relations of Autism Society of Pittsburgh. Camp SPEAK is for students with an individualized education program (IEP) that includes an extended school year (ESY). ESY services are provided to help children with disabilities retain losing many of their basic skills during summer break. “It’s at Steel Valley High School in Munhall and we have 90 campers each year. We’re very proud of it.”
Families preparing to travel by plane can also contact Autism Society for the video “Autism Takes Flight,” a 12-minute video covering ticketing through baggage claim.
Getting the right services provided in an IEP can be a challenge for parents who don’t know the terminology or the accommodations available. Austim Speaks, a national advocacy group, has a database of individuals for families to find advocates, financial and legal resources. These individuals can help parents navigate terminology and what’s available through schools and communities.
Autism Speaks also hosts a major annual fundraising walk in Schenley Park annually.
“We don’t provide direct services, but one of the most valuable things we provide families are our toolkits,” said Brett Spitale, executive director of the Greater Pennsylvania Chapter. “As soon as a family gets a diagnosis, there’s so much to be done and we have 47 toolkits available to families that focus on the first hundred days, or how do I take my child to the dentist, to get their haircut and more. We are a fundraising organization and there are grants available to kids and families for our summer camp programs.”
The Autism Notebook Magazine is a free quarterly publication founded and published by Lori Swetoha.
“Our mission is to be a resource to provide education, inspiration and acceptance from parents, and empower them to take the next step,” said Swetoha. “There’s a lot of awareness out there, but it’s the empowerment to accept that’s our goal.”
Swetoha was motivated to create the magazine after her son was diagnosed with regressive severe autism. She wanted to create something that could constantly evolve and help parents learn and make choices. Swetoha hosted a free conference in Pittsburgh in April and will host another in 2017.
Pittsburghers are fortunate to have access to more than 25 support groups for parents of children with autism. Autism Speaks and Autism Connection can put parents in touch with more than 34 Pittsburgh autism groups offering assistance with advocacy, financial and legal resources.
Other key players
Allegheny Children’s Initiative (ACI) provides mobile therapists, evaluations and diagnosis, and service coordination, as well as family-based services for higher-risk children. ACI is one of the only county-funded agencies that will allow families to start service before obtaining state Medicaid.
Aspire Pediatric Therapy, LLC, provides pediatric speech/language and occupational therapy and feeding therapy, while the Autism Center of Pittsburgh offers autism evaluations, social skills groups and parent support.
Allegheny Behavior Analysis Services, LLC, provides in-home applied behavioral analysis therapy (ABA) for children ages 2 to 21 with autism or other intellectual disabilities. Under PA Act 62, families with children diagnosed with autism spectrum disorder qualify for ABA therapy services with their health insurance carrier. Board-certified behavior analysts and licensed behavior specialists manage all of the children’s programs at Allegheny Behavior Analysis Services.
While adjusting the physical environment makes it easier for families of children with autism, several local museums offer reduced admission fees. This way, families can explore new experiences without worrying about cutting their visits short.
“Planning fun family activities can be difficult. Noise is an issue, and there’s a limited amount of time my son can do something,” explains Pam Briskar of Ross Township, who has a 9-year-old son with autism. Her son can’t tolerate crowd noise at many events, so when he’s reached his limit, they have to leave.
Carnegie Museum of Natural History, Carnegie Museum of Art and the Andy Warhol Museum all offer reduced admission of $1 for ACCESS cardholders while Carnegie Science Center offers $3 admission to cardholders. ACCESS Cardholders heading to The Children’s Museum of Pittsburgh pay $2 and can apply that rate to up to three other guests in their group.
The Science Center and the Warhol Museum also offer special sensory-friendly days, says Cecile Shellman, diversity catalyst for Carnegie Museums.
“Our staff undergo extensive training and continue to be trained to make sure we provide services and programs from a variety of disability categories,” Shellman says. “We are really trying to be leaders. We’re trying to make sure we’re not just compliant but welcoming.”
Pittsburgh is a sports town, and that includes children with autism, to a degree.
The Miracle League of Southwestern Pennsylvania opened its first season in 2009 in Cranberry Township to give kids with special needs a chance to play baseball. Miracle League offers competitive and non-competitive divisions for children ages 5 to 18, as well as for adults.
“The Pittsburgh Pirates Charities are the most supportive partnership we have in our organization,” says Mike Sherry, Miracle League president and founder. “Because of Pirates Charities, we have expanded to create other Miracle Leagues in the South Hills, Indiana and even West Virginia.”
Sherry says he wishes that other sports leagues would create opportunities for kids with special needs to participate.
“Our daughter was diagnosed with autism and we decided this community needed a baseball field that was designed for children and adults with special needs to enjoy the great game of baseball.”
Riding for the Handicapped of Western PA offers horseback riding for children ages 3 to 18 at North Park on Mondays and Thursdays from May to October. Funded by donations, fundraising and grants, this popular volunteer-run program has a huge waiting list of several years.
Movies and theater
Pittsburgh’s theater and cultural scene is setting the benchmark for the rest of the country when it comes to being sensory-friendly.
“We’re probably the only big city in the country that has 100 percent participation from the major cultural institutions,” says Lu Randall from Autism Connection.
The Pittsburgh Ballet Theatre, Pittsburgh Symphony and Pittsburgh Cultural Trust have all worked to adapt their performance environment to include families of children with autism.
“We create a pre-visit story that explains what the child will experience that day starting with parking in the parking garage, going down the elevator, crossing the street, etc. We also create a character guide and point out which characters might have a costume change,” says Christina Salgado, director of education and community engagement at the Pittsburgh Ballet Theatre. “House lights are up 20 percent, audio is lowered about 20 percent; we eliminate anything loud or abrupt. For instance, the strobe light was eliminated from Peter Pan.”
In addition, staff and volunteers are prepared to welcome guests on the autism spectrum, offering fidgets (small star-shaped foam balls) and quiet rooms if the theater experience is overwhelming.
The ballet also offers adaptive dance classes for ages 6-9 and 11-17, combining creative movement with ballet basics and tailored to student needs.
Like the ballet, the Pittsburgh Symphony Orchestra knew many families weren’t comfortable coming to a performing arts event and made adjustments.
“We learned from our advisors that you don’t have to change the musical product, just make the audience feel comfortable. We train the ushers and box office volunteers and educate people about the relaxed rules in the concert hall,” says Jessi Ryan, manager of education and community programs at the symphony. “Patrons can move around at any time; we have a quiet space. We hand out fidgets to those that want them, we also provide ear plugs to dampen sound and offer people the chance to move back if they want.”
While the symphony only offers one specific sensory-friendly experience at this time, the organization is expanding the changes and making families feel more comfortable enjoying other offerings including Fiddlesticks, School Time and Tiny Tots.
“We want to make accessibility more universal,” says Ryan.
EQT Children’s Theater Festival presented by Pittsburgh Cultural Trust also includes sensory-friendly experiences.
“In 2014, the Festival presented its first sensory-friendly show and in 2016, sensory-friendly offerings were greatly expanded with Goodnight Moon, the Runaway Bunny, Air Play and Welcome to Here. The shows have all been supported with social stories, on-site experts, break-out quiet spaces, pre-show activities and complimentary fidgets,” says Diane Roth, communications manager for the Pittsburgh Cultural Trust.
AMC Theaters also partners with the Autism Society to provide sensory-friendly films four times a month on the second and fourth Tuesday and Saturday. These showings keep the lights up and the sound down; guests may move around the theater as needed.
For families that enjoy stories and songs presented especially for kids with autism, the Carnegie Library offers Sensory Discovery story times for kids ages 2 and up. These story times last 20 to 30 minutes and offer a supportive atmosphere for kids and their adult caregivers.
Word of mouth
“Talking to other parents and asking questions is key,” Marchini explains. “State programs will direct families to specific programs and it’s important to know that there are other options.”
Briskar offers suggestions like getting to playgrounds or family fun centers early when they’re less crowded.
“My son would love to go to a Penguins game, but the crowd noise and the fact he’d have to get up from his seat frequently would be a problem,” Briskar says. However, she recently learned from another parent that hockey games at Robert Morris University cost less and don’t have assigned seats.
As awareness and education of how best to accommodate autistic children continue, more opportunities will become available to all Pittsburgh families.
Do you have a resource for children on the autism spectrum that you’d like to share? Let us know in the comments section below!