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For these two mothers, autism advocacy begins at home

Susan Gilroy and Gloria Ricardi Castillo (Courtesy)

While they have a half-century of experience combined of helping families, through their work at Northeast Arc, what makes Susan Gilroy and Gloria Ricardi Castillo most effective is that they have walked in the shoes of those they have assisted along the way.

Gilroy and Castillo are both mothers of an adult with autism — Gilroy a daughter and Castillo a son. When they were first confronted with the diagnosis, the resources available to families were limited, to say the least.

“Lindsay was born at a time when it was extremely difficult to get good information,” said Gilroy, a Swampscott native and Lynn resident, of her daughter, who is now 40. “The first services we got were recreation and respite care.”

“I felt isolated,” Castillo said. “I started my own support group.”

Gilroy started volunteering at Northeast Arc in the late ’80s and was hired as family resources coordinator in 1994. Castillo started as a volunteer in 1995, was offered a job in the family resource center in 1997 and joined the Autism Support Center in 1998. Gilroy and Castillo applied to be co-directors of the ASC 15 years ago.

“We are very passionate about what we do,” Castillo said, in what many would consider the understatement of the year.

What they do, primarily, is connect children and adults with the services they need, including Early Intervention, Building Blocks, Applied Behavior Analysis (ABA), recreation programs, social skills, job coaching, day habilitation and advocacy. On a somewhat less tangible level, they give families the feeling that they are not alone on what is typically a very challenging journey.

“Every family’s situation is different and everyone deals with the diagnosis different,” Gilroy said. “Some people really struggle with it and others are almost energized by it.” They all, however, share a burning desire to do what is best for their loved one.

“We want to do our best for the families we serve,” said Castillo, whose son is 30. “We always come up with ways to make it work. We want people to feel they are not alone and they can count on us and other families.”

The ASC services people from birth through adulthood. Both Gilroy and Castillo are grateful to be able to direct families to the proper resources.

“We have a wonderful team of people,” Castillo said. “We feel very lucky to be here. We feel supported and we want other families to feel that way, too. We try to do whatever it takes to make people feel comfortable.”

“We know what’s available and there are so many more opportunities now,” Gilroy added, noting that there has been an added emphasis on helping adults over the last several years.

“There’s a misconception that adults are taken care of the same way students are,” she said. “There really are no entitlements for adults. But so many companies are now looking at people’s strengths rather than deficits and providing opportunities for people with autism to work.”

Both Gilroy and Castillo have two other children who do not have special needs, so they can appreciate the strain that can be placed on a family when they receive a diagnosis.

“Nothing is easy when you have a child with special needs, but it’s not the end of the world,” Castillo said. “You manage.”

“We try to focus on the positives and stress that they are going to get through it,” Gilroy said. “We try to help families feel a little optimistic and find joy.”

As the country pauses this weekend to honor all mothers, it seems appropriate to acknowledge those such as Gilroy and Castillo who excel in that role, both inside and outside of their own homes.

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