Families with autistic children are being warned not to fall for “charlatans” offering fake cures which can end up costing them thousands of dollars.
The roll out the National Disability Insurance Scheme (NDIS) will hopefully provide parents of autistic children some certainty, one of the things they crave most.
West Australian autism specialist Professor Andrew Whitehouse sheets that sense of uncertainty home to the very nature of autism, which has no clear cause and no magic bullet cure.
“People with autism tend to have characteristic behaviours of social impairment, language difficulties and some repetitive behaviours,” Professor Whitehouse says.
“Autism can be managed extremely well and people with it can live long and fulfilling lives. But at the moment there’s no evidence for a cure.”
With no definitive answers Professor Whitehouse argues families of children with autism are left particularly vulnerable to quackery and claims of cures. The autism researcher has seen some truly bizarre things in his time.
“I have come across milkshakes (to) help cure autism, I have come across collation therapy, where you administer harmful chemicals to the person with autism,” he said.
“I have come across bowel bleaching. All of these are not just out there, they are very detrimental for the person with autism.”
Families searched for expensive, fake autism cures
Sydney’s Jason Hameister and Adelaide mother Bec Payne, who have been friends for years and both have autistic children, have both embarked on a quest to find a cure for the condition.
Mr Hameister says when his daughter, Maia, was diagnosed with autism he hit the internet, a common mistake made by parents.
“It is such a field of misinformation in a lot of ways, and misinformation has a new breeding ground on the internet,” Mr Hameister said.
However, it did not stop him from trying therapies proudly proclaiming they could “cure” his daughter.
“The first one we really got into was craniosacral therapy. This is one where they place their fingers on the skull and around the skull in such a way that they believe they can manipulate the bones of the skull … believing that that then would cure a range of other illnesses and diseases,” Mr Hameister said.
“We saw this woman for, it must have been, six months or so, paying like $60 a half-hour just for her just to sit there and place her fingers on Maia’s head.”
Ms Payne reckons she spent about $26,000 on phony promises for her four-year-old son Jed.
“And I was prepared to spend even more,” she said.
“But what can I do? You just get so caught up in it, you just want to believe them, and I don’t know… that’s where I weaken.”
Last year, after shrugging off the quackery, Ms Payne had a major triumph. South Australia Guide Dogs supplied Jed with special trained autism assistance dog, a black Labrador named Sammy.
At the time the organisation said he was the youngest person in the county to have an autism assistance dog.
Jed can now put four words in a sentence and his mother says he is much calmer, thanks to the dog and a range of other proven therapies.
Call for government to provide better information
However, the assistance dog was not enough to eliminate Ms Payne’s desire to find a cure, and until a few weeks ago, she was saving for a US-based treatment that claimed to cure autism.
She would have spent thousands of dollars on it, if Mr Hameister had not stopped her.
“I want him to be able to speak to me and tell me what he wants,” Ms Payne says.
“I love him to the moon and back but I don’t want him to feel the way his does. I can’t imagine it feels good.
“I am game to try anything for him and that’s where I am lucky that I have Jason … he’s my little watchdog.”
If only other parents were so lucky.
Professor Andrew Whitehouse believes state and federal authorities need to step up, providing parents with better information and a constant flow of it.
He says his experience has convinced him that, no matter how well informed the individual, they can still be vulnerable to hope, even if it is false.
“It’s the mystery of autism that leaves families with who have a child with autism vulnerable to charlatans and well meaning people who don’t have the evidence for their therapies,” Professor Whitehouse said.
“It’s the mystery. Also there’s an element of guilt there as well, if I don’t try everything to help my child, who I love desperately, then I am doing a disservice to my child.”