False Hope: Desperate Families Plagued by ‘Absurd’ Snake Oil Treatments for Autism | Health

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Bleach enemas, restrictive diets and potentially toxic pills are some of the dangerous and debunked “therapies” that parents of children with autism have sold.

Bleach – “Miracle Mineral Supplement” – has been sold on an unsubstantiated claim that intestinal parasites cause autism. Last year, the Therapeutic Goods Administration banned the advertising and sale of MMS after its manufacturers also began claiming it was a cure for the coronavirus.

MMS may be gone, but dozens of unnecessary therapies are still being sold. Some, like chelation, are life-threatening pills, injections, or suppositories. Others, including strict diets and homeopathic or chiropractic treatments, are just a waste of time.

Proponents say a “shadow industry” has grown in the gap between the diagnosis and treatment of autism – an industry that sells false hope to desperate parents.

Andrew Whitehouse, professor of autism at the Telethon Kids Institute and director of research strategy at the Autism Co-operative Research Center, says the autism industry should “absolutely expect and accept the same standards as we do. accept for other areas of health and medicine ”.

“And at the moment, we are not doing that,” he said. “The autism industry has accepted a side industry for many years with very little evidence or no evidence at all.

A chocolate milkshake
Autism professor Andrew Whitehouse denounces “diet therapies like camel milk, gluten-free diets… special milkshakes” as “absurd”. Photographie: Brent Hofacker / Alamy

“There are things like hyperbaric oxygen therapy, diet therapies like camel milk, gluten-free diets… special milkshakes. This is all absurd. ”

Whitehouse is not blaming parents, but a regulatory system that allows for non-evidence-based therapies to be offered not only privately, but through the public system – without providing the support parents actually need.

“For public money, there is no debate. It cannot and should not be devoted to interventions without evidence. Families need to be protected at a very vulnerable time in their lives. “

The National Disability Insurance Agency commissioned Autism CRC to review the evidence for 111 interventions with children under 12. He found, for example, moderate evidence of early intensive behavioral intervention. If done correctly, speaking, psychotherapy, and occupational therapy can help, as can social skills training.

But there is virtually no evidence for auditory integration therapy, and only low-quality evidence for music therapy.

A boy listens to music with headphones
The evidence for music therapy to treat autism is only low quality. Photograph: Image Source Plus / Alamy

Whitehouse reported on his study to the Special Senate Committee on Autism. The inquest was set up by Liberal Senator Hollie Hughes, whose son was diagnosed with autism ten years ago. She says parents “desperately want” to make sure their kids get the best help possible, but kids who need a lot of help may need up to 40 hours a week, which is expensive.

This means that there is a market for other types of therapy.

“Swimming with dolphins can be very enjoyable, but it won’t help with autism,” she says.

“Equine therapy can be fun… but it won’t teach children how to use speech and communicate.

Hughes says there can be long delays in diagnosis because many doctors don’t recognize autistic traits. Sometimes general practitioners will blame deafness for poor speech or unresponsiveness. Once there is a referral to a specialist, there can be more delays – especially if money or access is a barrier.

Autism is not like other conditions. It is complicated.

Autism Awareness Australia CEO Nicole Rogerson agrees that delays in the system are causing parents to seek other answers. “And,” she said, “you get the pediatric wait… they’ll tell you to come back in six months.” She says that even though people with autism make up the largest cohort in the National Disability Insurance plan (about 30%), the overall system is bogged down between state and federal governments.

A boy sits on a horse while his therapist stands nearby
Liberal Senator Hollie Hughes Hughes says equine therapy “might be good … it won’t teach children how to use speech and communicate.” Photographie: Denislav Stoychev / NurPhoto / REX / Shutterstock

“In this space where people are waiting for a diagnosis, where they get a diagnosis, and then there is a massive waiting list for an intervention, it is in this place where parents are most vulnerable to oil sellers. snake, ”says Rogerson.

“They flourish. They also thrive in the NDIS system.

Autism, or autism spectrum disorder, is very complex. There is no blood test for this.

The federal government describes autism as “a lifelong developmental disorder that affects the way people behave and interact with the world around them.” Autism Awareness Australia offers more nuance.

“People with ASD have difficulty with communication, social interaction, and restricted / repetitive interests and behaviors,” he says on his website. “These are often accompanied by sensory problems, such as hypersensitivity or under-sensitivity to sounds, smells or touch. All of these difficulties can lead to behavioral problems in some people.

“The term ‘spectrum’ is used to emphasize that autism presents itself differently in each person. People with autism have a wide range of challenges as well as abilities. “

A review of submissions to the Autism Survey shows that a single description barely touches the sides when it comes to diversity in the autism industry.

Many parents (mostly mothers and mostly anonymous) have written with very different stories about their children’s challenges and abilities, but with very similar stories about frustrations with the system.

People with autism (again, mostly anonymous) sometimes speak out against the system, but more often speak out against the stigma. They talk about their isolation, abuse, intimidation, incomprehension. They speak of a world that will not waver to let them in.

An 11-year-old writes that he really enjoys “science, Pokémon, otters (and other wild animals), Lego and Harry Potter”.

“I’m a Cub Scout and love to volunteer for community and environmental causes,” he says. “I want to go to college (to) be a biologist, zookeeper, ranger or vet when I grow up.

“I am often bullied at school because I have autism. I’ve been beaten up, threatened, sworn in and kicked out of playing because I’m different. Someone even stole my hat and put it in the toilet and put poo on it. I’m not invited to parties to which the rest of the class is invited because “I’m acting weird.” “

There are adults who write about struggling to find work because people just don’t “get” them or do simple things like understanding and adjusting to sensory differences.

Then there are those who would rather be called “autistic people” than “autistic people”. Language, like therapy, is contested.

Others focus on autistic abilities, rather than challenges. There’s Rhett Ellis, an “autistic entrepreneur” from Brisbane who says Australia could emulate Israel and build an “Australian autistic cybersecurity military base”.

And the charismatic Clay Lewis, 19.

Puzzle pieces come together to form a heart, with the theme 'It's OK to be different', on a poster for World Autism Day
Autism stories are legion and can both break and warm hearts. Photograph: Getty Images

“I love my girlfriend and hang out with my friends,” he says. “I love playing simulated car racing games and can tell you everything you need to know about supercars and Formula 1.

“I have my own trash cleaning business and have been in the business for four years now, which is pretty amazing. NDIS has poor funding and lack of vision, which could see my business shut down. It won’t happen, but, still, it really upsets me.

“I want to have my own business because it meets my autistic needs. I can be very funny and cheeky with my clients. I tell a lot of jokes – I just make everyone laugh – and the community loves me. It is all I have!

Stories abound and can both break and warm hearts.

Rogerson says there are those with little or no disability who can stand up for themselves, but there are many who (sometimes literally) can’t speak for themselves. So others need to do this for them and teach children the essential skills they lack.

Whitehouse says the crux of the matter is that because autism is such a diverse experience, it complicates every step of diagnosis, therapy, and lifelong support, and how to address those delays. is to make sure the system is strengthened every step of the way.

“What we’re looking at is the spectrum of the human experience, so our job as clinicians, policy makers and community members is to showcase the beauty of the autism experience and to maximize the potential of individuals throughout life, ”he says. .

“Autism is as diverse as humanity itself.”

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