Mom says she was duped by stranger after posting 'amazing' video of son with autism
Parents of children with autism turn to internet, wasting time and money, advocate says
The mother of a boy with autism who can't speak says her family was targeted by a stranger offering false hope after she posted a video of her son online.
"I can't believe I fell for it. Too good to be true. I couldn't help it I guess," Kirsti Mardell of Fort McMurray, Alta., told Go Public.
Mardell is one of many Canadian parents with children who have autism who advocates say end up spending money and time on unproven treatments offered online after discovering there is little or no support for their children where they live.
Her five-year-old son Quentin can only say "hello" and "goodbye." That's why what happened a few months ago was so surprising to his parents. During a visit to his grandmother's house, Quentin spontaneously picked up a guitar, started strumming and sang the words to Twinkle, Twinkle Little Star.
"My husband and I were so happy. That's the first time he's spontaneously tried to communicate," Mardell said.
She posted the video online for friends and parents of other children with autism to see. A man in the U.S. saw it and tracked the family down, making some big promises.
"This guy's telling [us] how he has this online school, how he was 14 years old and learned how to talk, 'cause he was autistic and nonverbal himself and how he can teach other kids to talk and how he can help us teach our son how to talk," Mardell said.
That guy is Jasper Steed. The person behind the website autismsmilesllc.org.
Mardell wasn't interested in Steed's program, so he offered her son a spot in another established autism program he said he had partnered with. That one had a long wait list. Mardell jumped at the chance, putting down a deposit.
She soon discovered Steed couldn't deliver because he had no connection to the established program. Mardell said she asked for her money back, but Steed refused.
"It's insulting. Hurtful too, 'cause he gave me false hope," she said.
Steed offers an online program for kids with autism, charging a monthly fee of $80 to $200 US. He claims almost 80 per cent of his non-verbal students learn to speak in less than a year. Professional programs don't have that kind of success.
Go Public tracked him down at his home in Virginia and asked about that claim.
"I don't mean a child, you know, to be straight up, conversational. What we mean is, they have words that they did not have," he said in a Skype interview.
Families desperate: advocate
Deborah Pugh, executive director of the B.C. advocacy group Autism Community Training, based in B.C., who has an adult son with autism, said she has never heard of Autism Smiles. But she said there are many similar programs out there making big promises they can't deliver on and many families desperate for help that end up paying for something that doesn't work.
"The hype is that it's going to work for every child and it's going to work quickly and this is going to be the answer to every parent's fears, concerns and dreams," she said.
"We find it heartbreaking when families call us about the money they have spent on useless resources and under qualified 'professionals.' What is worse than the loss of money, is the time wasted," Pugh told Go Public.
She said the most effective thing is professional individualized treatment and support for children and families.
But that's tough to get. Wait lists to get funding for treatment are two or three years long in most provinces. The exception is B.C. where every child diagnosed with autism has access to funding.
"There's an enormous systemic failure of government to provide intensive early intervention across Canada," Pugh said.
ACT offers an online database where families can search for tested and trusted resources.
Steed known for making big claims
It's not clear if Steed actually has autism, or was ever non-verbal. He refused to share his medical records with Go Public.
Steed is known for making big claims, he has claimed online that he was the creator of the original Angry Birds. He also ran sweepstakes and what he calls charities in the past.
In our interview, Steed claimed to be working with the Kansas State Department of Education to incorporate his program into its curriculum. He also told Go Public he was working with autism researchers at UCLA.
Both organizations said they had never heard of Steed or Autism Smiles.
Steed said the deal with the Kansas State Department of Education didn't work out and claimed his research with UCLA is still ongoing, but couldn't provide details or proof.
"I'm not allowed to disclose any of that right now," he said.
Steed said he's genuine in his desire to help children with autism, although he admits he has no formal autism therapy training. He did take an online course, he told us, but failed.
According to the U.S. Centers for Disease Control and Prevention one in 68 children south of the border has autism spectrum disorder. Canadian numbers aren't available, but the Public Health Agency of Canada is now working to develop a surveillance system that will track the number of people diagnosed with autism disorders. Those findings should be available next year.
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