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Knowledge is power—the old adage proves especially true for people with autism and families whose loved ones are on the spectrum. Before the 1991 founding of the Autism Support Center, a Northeast Arc program, families were often left in the dark with few resources and little information. Current codirectors Susan Gilroy and Gloria Ricardi Castillo combat that problem by providing support and informational materials. “We do an intake interview, ask questions to draw the family out, and assess the child’s level of functioning,” explains Gilroy. “Then we make a package of information that we [give] to the family, and refer them to services in their area that may fit their needs, through Northeast Arc and other agencies.”
This information and the referral process are key to the center’s commitment to empowering families. “Our goal is to provide unbiased information,” says Castillo. “We want families to understand the entire range of options that existfor them, not just the options within Northeast Arc. Since the inception of the center, we’ve spoken with close to 9,000 families.”
The center’s sensitivity and support are important for families who seek not just facts but solidarity. Both Castillo and Gilroy offer the benefits of their own experiences as parents of autistic children, as well as years of professional work. “We speak to families who have just received a diagnosis—it’s all very new to them,” says Castillo. “Susan and I hold their hand a little in the beginning, because this can be very difficult.”
Although it began as a referral service, the center’s scope has broadened significantly in recent years. It now sponsors many social activities for people with autism of any age, as well as their families. “We screen family-friendly movies, and offer social events like bike clinics, bowling, and swimming on school vacations,” says Gilroy. Castillo adds, “Families will often avoid social events because their child with autism might become stressed or experience sensory overload. At our events, families can meet other families who are dealing with the same issues—it becomes a networking opportunity.”
Another recent victory for the center is the Touch to Talk program, an innovative idea that enables children who are nonverbal or have limited verbal capabilities to communicate using iPads equipped with a software program called TouchChat. Users press a photo of the desired word onscreen, and the program says the word aloud, making it simple to form sentences and communicate intent without frustration. Prior to Touch to Talk, most nonverbal autistic children used a cumbersome system called PECS, which requires the use of a heavy binder full of printed photos.
“We send families a questionnaire to determine if their needs may fit the program. Then our speech-language pathologist does a therapeutic evaluation on the child, and once we determine that the program is a fit, families receive a brand-new iPad free of charge, and training on how to use it,” explains Castillo. Gilroy adds, “Often, families will call us because they are almost in crisis with their nonverbal child’s behavior at home. For many nonverbal people with autism, behavior is communication—if you increase their ability to communicate with words, you’ll see a decrease in challenging behavior.” Both Castillo and Gilroy have heard testimony from families whose children have exhibited fewer difficult behaviors after beginning the Touch to Talk program. “We believe that communication is a human right,” says Castillo.
An extension of the program, Touch Talk Goes to School, has also met with great success. “We partner with a school to offer training for teachers and school personnel. The schools choose several children who fit the requisites for the program, and they continue to support the child with the device.” School involvement is key to a child’s success with the Touch to Talk program. “Families and schools working together is what we aim for,” says Castillo. “With Touch to Talk Goes to School, we know the schools are on board. The response has been unbelievable—the schools love it, and the kids are very responsive to the technology.”
Touch to Talk has been a community effort from the start, with benefactors from all over the North Shore. The program began thanks to the generosity of George Harrington, former owner of the Lyceum Restaurant in Salem. Harrington learned about the benefits of iPads for nonverbal children and was inspired to collaborate with staff at the center to bring a new program to life.
Many families also receive support from some or all of the Northeast Arc programs. Both the geographical range of the Arc—covering 150 cities and towns in the Northeast—and the vast range of activities and programs for people of all ages make it a flexible and beneficial option for families struggling with an autism diagnosis.
The Arc’s Building Blocks program, for instance, offers intensive one-on-one early intervention for children with autism under the age of three, to help them develop communication skills at home. Louann Larson, Northeast Arc’s director of Family Support Services, explains, “Building Blocks uses an approach called the Early Start Denver
Model…to help with the communication and social needs of children. We also have Behavioral Health Services for older children…in the home or at the child’s day care.” In addition, there are several support groups for parents. “We listen to families; if we hear a few families expressing a need—for a support group, or more social activities—we try to meet that, because we know it’s the tip of the iceberg. We know that if some people are saying it, there are many more people who need it,” says Gilroy.
Northeast Arc’s well-received Spotlight Social Skills Program came about in just that way. Many parents expressed a need for groups where their children could learn and practice social skills. This program uses a drama-based approach, which allows children “to practice perspective talking and improvisation,” explains Larson. A recent documentary, Autism Through My Lens, produced in conjunction with Emerson College, highlights nine teens and young adults who have benefitted from the Spotlight Program. The film gives viewers a rare opportunity to see how people on the spectrum navigate life’s challenges and interactions with peers, from their own point of view.