Documentary explores the lives of families with autism
April is autism awareness month and for many parents the
disorder is a growing concern. The Centers for Disease Control and
Prevention staff have reported the prevalence of autism spectrum
disorders at 1 in 150 children in the United States.
Documentary explores the lives of families with autism
April is autism awareness month and for many parents the disorder is a growing concern. The Centers for Disease Control and Prevention staff have reported the prevalence of autism spectrum disorders at 1 in 150 children in the United States.
One of the documentaries to catch this month is “Autism: The Musical,” now airing on HBO channels and on DVD. Tricia Regan and her film crew followed the inception of The Miracle Project in Los Angeles. The program opened up the opportunity for families with autistic children to participate in a musical theater program along with children without disabilities.
The filmmakers followed not only the progress of the children and the theater directors during the six-month period of the project, but also delved into the past of a handful of the kids and their families. One of the most heart-wrenching things about the documentary is that it mixes early family videos of several of the children before their autistic tendencies emerged.
When we see videos of Elaine Hall and her son, Neal, just before his adoption, he is a smiling towhead who loves to be hugged and cuddled. But in the years after Hall brings him home, she knows something is amiss. Now as a pre-teen, he struggles to say more than one word at a time, he never makes eye contact and he is prone to tantrums when he is stressed in social situations.
It is the same for Lexi’s family. They have video footage of the small 2-year-old girl dressed in pajamas, touching her toes, teeth and eyes on cue.
But months down the road, she stopped talking and started some of the typical repetitive motions of autistic children. The diagnosis took a while, as the family pediatrician was reluctant to label the girl autistic. Eventually the diagnosis plunged Lexi’s mother into depression and put a strain on her parents’ marriage.
Through the documentary, however, we see a side of Lexi that her mother has been missing. Though Lexi rarely puts out a unique thought of her own – she does what is referred to as echolalia, or repeating what other people say – she really seems to enjoy her time at rehearsals. She smiles constantly and enjoys the company of others. And she loves to sing, and she sings out with a lack of the self-consciousness most girls her age would exhibit in front of a large crowd. She seems happy.
One of the best things the movie does is distill many of the myths people who have not dealt with an autistic person have about the disorder. The children are all very different. Some are non-verbal and unable to make eye contact, while others are very verbal and easily make friends.
One of the most verbal children is Henry, the blond son of Kristin and Stephen Stills, of Crosby, Stills and Nash. Henry has been diagnosed with Asperger’s syndrome, what some people refer to as high-funtioning autism. He has an obsession with dinosaurs and other prehistoric life, and he has a memory like an encyclopedia.
On the surface, Henry seems like a typical little boy, but he struggles to make eye contact and recognize other people’s needs. Often at rehearsal, Hall has to ask him to tell his story later.
One of the great things about The Miracle Project, however, is that there is no script, so the children have a say in the final project.
Lexi’s love of singing makes its way into the performance, as do Henry’s love of dinosaurs and another child’s fear of bullies. The point is that the staff and parents have to bend to the needs of the children, rather than trying to get them to fit in.
It is something that many of the parents struggle with in their daily lives. Wyatt’s parents – his mother is one of the staff members for The Miracle Project – want to move him into a mainstream classroom. Wyatt is very talkative, though his lectures about bullies and other topics sometimes make little sense. He is aware enough, however, that he knows what it means to be in a special education classroom and he sees it as bad to be different. His parents have a hard time accepting his cognitive limitations.
Lexi’s parents also have just started to realize that she may never be able to live on her own and she may never experience the joys of falling in love that they experienced.
Even Hall, who is so patient and understanding with the children, sometimes puts her own son into situations that stress him. At a park birthday party for Neal, he becomes overwhelmed by all the noise and people, and acts out.
Though the documentary ends when the children put on their first performance of their musical, the journey is far from over for the families. The Miracle Project continues in Southern California, and Hall has plans to share her curriculum nationally.
For more information, visit www.themiracleproject.org.
