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In film on autism, mother reaches out

Posted by Leslie Anderson  March 25, 2010 09:19 AM

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Joanne Rathe, Globe Staff Photo

Eliza Mury was only one year old when she said her first word — ‘‘doggie’’ — and a few more words followed. But soon her parents noticed that her vocabulary seemed frozen. Speech therapy didn’t help.

Eliza’s mother, Aimee Mury, took her daughter to doctors and specialists, but none diagnosed anything more serious than a hearing deficiency. Friends and relatives, though, had gently begun to suggest that Eliza might be autistic. Aimee Mury was so fearful of the condition, she could barely say the word.

After repeated exams by specialists, Eliza was diagnosed with autism when she was 2 1/2, in the spring of 2007. Aimee Mury read everything she could about the condition. But as she learned about traits and treatment, she had a hard time seeing what an autistic child looked like.

‘‘It’s very hard initially to meet other people and kids,’’ Mury said. ‘‘I was on YouTube and I was trying to search for autism. And I found there was very little out there.’’

Nearly three years after Eliza’s diagnosis, Aimee Mury has helped create a movie about her daughter and their struggle to get her diagnosed called ‘‘Eliza, My Songbird.’’ The movie, produced and directed by Mury’s neighbor, Zadi Zokou, will have its first public showing Sunday at Natick’s Morse Institute Library.

Mury, 42, saw the movie as a chance to help other families with autistic children get diagnosed more quickly than Eliza. But Eliza also plays a prominent role in the movie. Mury and her husband, John, pastor of Natick’s Beacon Community Church, hope that making autistic children more visible will help diminish the stigma of the neurological disorder.

‘‘I think it’s a wonderful tribute that she is willing to do this,’’ said Kelly Gryglewicz, a member of the board of directors of the Autism Alliance of MetroWest, and a friend of Mury’s. ‘‘A lot of people are not willing to disclose the diagnosis.’’

Getting Eliza diagnosed with autism was a long and frustrating process that began when the girl was 18 months old. Appointments with specialists took months to book, and in the beginning, none of them believed Eliza was autistic. Girls are less likely than boys to be autistic. And while many autistic children shy away from social contact, Eliza was very social — even though she was indiscriminate, trying to sit on a stranger’s lap, for instance.

‘‘That’s what I was quickly learning was that even within the professional group, there’s a lot of misunderstanding of what a child with autism can look like,’’ Aimee Mury said.

Finally, a friend who works with families with autistic children persuaded the Murys to see a neuropsychologist, and this time the diagnosis was firm: Eliza had autism. The doctor saw Eliza on a Saturday and he told Mury to get on the phone the following Monday, trying to set up the array of services she would need. Now Eliza spends about 26 hours getting special services at Johnson Elementary School in Natick.

Once Aimee Mury began researching autism, she realized her daughter had some of the classic signals early on: She didn’t point to things. She didn’t respond to her name. She didn’t show her mother things. Mury made the film hoping it might encourage other families to get their autistic children diagnosed early.

Now, at 5 1/2, Eliza says only a few words and the name of the movie came from the noises she made when she was younger. ‘‘She chirped just like a bird as toddler,’’ her mother says, in the movie.

The Murys make a point of taking their daughter out in public, even though it may create awkward situations — Eliza has tried to drink out of a stranger’s cup. But when they explain that she is autistic, others are usually understanding.

The last few years have been hard on the Murys. Aimee Mury discovered she had inherited a gene linked to breast cancer and a rare form of stomach cancer — which killed her mother in her 40s — and underwent nine surgeries in three and a half years, removing her stomach and both breasts. John’s brother died unexpectedly a little over a year ago.

When Mury told her neighbor, Zokou, that she wanted to make a YouTube clip about her experiences getting Eliza diagnosed and finding services for her, he offered to help. Zokou is a sales associate at Neiman Marcus but he was a screenwriter in his native country of the Ivory Coast.

When Mury told him about her plan, he had recently bought new film equipment and he told Mury he would help her. Zokou encouraged her to think bigger than YouTube. Next, Zokou would like to raise money for a longer film about Eliza and the rest of her family.

When Mury was done telling her story for the film, Zokou asked her a few more questions. He wanted to make the film more personal.

‘‘I wanted her inner feelings about having an autistic kid,’’ he said. ‘‘I was glad that she answered the questions.’’

Kathleen Burge can be reached at kburge@globe.com

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