A Colonie resident has been chosen in a national search as a subject for a documentary that will highlight families overcoming the obstacle of raising a child with autism.
Trish Washburn has been selected, along with 19 other families from different socioeconomic, religious and cultural backgrounds, to showcase how they deal with the challenges of having a child with autism in the documentary The United States of Autism: The Film.
Washburn’s family was one of the first picked by the film’s Executive Producer and Director Richard Everts. Washburn has two children who will be featured: Buddy, a 9-year-old who is on the autism spectrum, and Cecelia Jane ` also known as C.J. ` a 7-year-old who Washburn believes is hard to diagnose because she is both highly functional and a female.
`One in four children diagnosed with autism are usually boys,` said Washburn. `I believe that’s why she doesn’t have a clear diagnosis.`
The autism spectrum covers several developmental abnormalities, and Buddy falls in between Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) and Asperger syndrome, according to Washburn.
Some of the signs that were clear to Washburn that C.J. falls on the autism spectrum was when she would walk on her toes, tantrum easily and organize her stuffed animals by color. Having Buddy, she said, made her become more aware of the signs.
`It needs to have more of a focus,` she said of the lack of awareness of autism in females. `Girls present differently than boys do.`
Washburn has been an activist in the Capital District to raise awareness of autism and advocating for the need to expose children with a developmental disability to the same activities as any other child.
She was appointed by Gov. David A. Paterson as a consumer member of the state’s Developmental Disabilities Planning Council, a position she said she was `psyched` to get. She also lobbied members of the state legislature in order to pass a bill expanding insurance coverage for individuals diagnosed on the autism spectrum.
Working closely with Sen. Roy McDonald, R-Saratoga, Washburn was able to build a relationship with the public official. McDonald has two grandchildren, ages 5 and 7, who have been diagnosed with autism. He said people like Washburn are needed to bring attention to these issues with their level of emotion and energy.
`I admire people like Trish. They help these legislators out,` he said. `She brings humanity to it [the issue]. She brings a human face and is no longer a statistic.`
McDonald worked alongside Sen. Neil Breslin, D-Delmar, to advocate for The New York State Autism Insurance Bill (S. 7000b/A. 10372a), sponsored by Breslin and Assemblyman Joseph Morelle, D-Irondequoit.
McDonald said the bill is `critical for families who need financial support.`
The bill, which has yet to be signed into law by the governor, would require individual accident and health insurance policies to provide coverage for screening, diagnosis and treatment of autism spectrum disorders.
Even with the work Washburn had put in with McDonald, she was not happy with the contents of the final bill.
Washburn said she would like to see the bill vetoed by Paterson.
`Part of me does support it, but I think it needs major changes,` she said. `I don’t know if it will help the way they’re hoping it will help.`
Michael Smith, a friend of Washburn’s and board chairman and northeast regional director of Foundation for Autism Information and Research Inc. Autism Media, said lawmakers are being disingenuous when they tout the bill as helping out families with coverage.
`This was a horrendous piece of legislation that was just passed,` Smith said. `I’m offended by McDonald saying, ‘Well, we need to do something.’`
Smith said he is upset over language in the bill that requires four agencies, the Commissioner of the State Department of Health, the Superintendent of Health, the Office of Mental Health and the Office of Mental Retardation and
Developmental Disabilities, to set regulations on treatment and therapy options that are evidence based, peer-reviewed and clinically proven.
Still, Washburn remains positive when it comes to her children and being able to show them the same life any other child would experience. She says she was not this positive when she first had Buddy and was even more worried about what would happen to C.J.
`I was out of it for the first three months,` she described. `I went through the grieving process, whatever that would be, and I was mad at the world. But I knew it wasn’t about me, it was about Buddy, and I was pregnant with C.J.`
Determined to be optimistic, Washburn says she knew that having two children with autism happened for a reason. She says it was to inspire her to help others who are experiencing the same problems she went through.
`I’m so honored to be a part of this film,` she said. `I hope my story can help someone.`
Everts, who said Colonie is his last stop on his journey of 10,000 miles in 40 days, said that Washburn was a really great pick due to the work she has done for the autism community in New York.
`They don’t think they’re that special,` he said of the people he chose for the documentary. `And we say, ‘No, you’re doing a big thing.’`
With an 11-year-old on the spectrum, Everts had planned on just doing a local story based on the Northeast. But when he received a $50,000 grant from the Pepsi’s Refresh Everything Campaign, which gives away money to help sponsor ideas or projects that will have a positive impact on the world, he decided to broaden the scope.
`We decided to get everyone involved,` he said. `We wanted to get the American experience.`
Everts is also the vice president of technology and communications for The Tommy Foundation, founded by Evert’s wife Sugey Cruz, which was created to assist in improving the quality of life for children with autism.
Everts will begin filming with Washburn Friday, July 30, where he will visit the family at their home then go with the kids to the Easter Seals Camp in Colonie, a six-week camp for children and young adults with physical, developmental and emotional disorders.
`We go to the Colonie Town Pool, we do arts and crafts, different sports, we have a talent show, a program called dance and movement, we have a dance crew come in and teach them dances from all over the world,` said Camp Director Chuck Paravella. `It’s like a typical camp.`
Buddy and C.J. are two of the 10 children with autism attending the camp, which Paravella refers to as `the happiest place in the world.` He complimented Washburn for her support in the autism community, hailing her as `very positive` about her situation.
`She’s incredibly enthusiastic, upbeat and a great advocate for what she believes in,` he said. `She’s not just looking at the situation as something that has happened to her family, she’s being proactive.`
When asked about how the children will react to having cameras filming them for a documentary, Paravella said, `I think they’ll get a kick out of them. I think it will be natural curiosity and excitement.`
Also on the schedule for the filming are trips to Everybody Counts Physical Therapy Center in Berne, where the children participate in Hippotherapy, which is therapy through horseback riding. They will end their day filming in front of the Legislative Office Building in Albany with McDonald.
Washburn is excited to be able to tell her story in this documentary, as well as being able to show there aren’t as many limitations on children with autism as many would think.
`I want people to know there are all these awesome things you can expose them to,` she said. `My hope is that this film will be a positive and will help people. That’s the bottom line.“
