"Without Apology" is Susan Hamovitch's effort to tell the world about her family's deepest, darkest secret – her brother. Alan, who was born in 1950, had mental retardation and autism and was institutionalized in upstate New York when he was eight years old. Hamovitch's parents stopped talking about Alan for years -- sometimes telling people they had only one child, not two – though they did continue to visit him once a month until their deaths. Conditions at Letchworth Village were horrific, leading to a famously shocking expose by Geraldo Rivera in the early 1970s. But the searing truth of the movie was that Hamovitch's parents had no choice but the state-run facility when they realized they could no longer care for Alan in 1958. There were no alternatives for people with autism at the time. No early intervention. No treatment. No progress. No hope.
The film was hard to watch, even for panelist Dr. Margaret Bauman, esteemed pediatric neurologist and autism researcher. But Hamovitch, who came in from New York for the screening, wrapped up her comments on a high note, telling the audience of parents and professionals that things finally started to turn around for Alan after moving to a group home in the 1990s. (Letchworth finally closed in 1996.) Today Alan is 55 and has still never spoken a word. But he is about to begin a communication program with a speech and language pathologist for the first time in his life. And Susan Hamovitch is proud to say Alan is her brother.
The second film shown at Brandeis was much easier to watch; for some parents in the audience it was an inspiration. In "The View from Here: My Life with Autism," Taylor Crowe looks right at the camera and describes how he went from being a nonverbal 3-yr-old to a 25-year-old college student studying computer animation at a renowned California art school. He has a driver's license. He has friends. And he has a strong conviction that someday he will achieve his dream of having a successful job and living on his own.
When Crowe was diagnosed with autism a generation after Alan Hamovitch, his parents had many more options to choose from. With help from speech therapists, occupational therapists and other professionals, Crowe's family pushed him to develop the social and communication skills that most people take for granted. They never gave up. And neither did Taylor.
Viewing these films together is a celebration of the last half-century of progress in society's treatment of – and treatments for – people with autism. Of course history cannot account for all of the differences in the lives of Alan Hamovitch and Taylor Crowe; Hamovitch obviously has a more severe form of autism than Crowe. But there is no denying how far we have come since the 1950s in our ability and our willingness to help people with autism meet their potential – whatever it turns out to be.
Near the end of the evening, Dr. Bauman pointed out that much more is known about autism today than even when Taylor Crowe was a boy. While there remains a subset of children who make little progress regardless of treatment, Dr. Bauman noted that "a high number" of kids on the autism spectrum go on to college. "Our expectations for these kids -- out of the box -- are far higher than just 5 or 10 years ago," she said.
-- Written by Carol Gerwin