Faeces in a pill as autism therapy: Amaze responds
Media outlets are quick to leap on stories about supposed breakthrough therapies.
Such stories, however, can be a trigger of false hope in the autism community – along with being damaging to autistic people at suggestions that they can be cured or prevented.
Receiving an autism diagnosis can be a time of upheaval for a family or individual as they try to comprehend what the diagnosis will mean for them.
They can be left feeling overwhelmed, not knowing which way to turn, when they discover the world of therapies, often at significant cost, available to them.
One of the most recent reports revolved around an autism study in the US, which captured headlines because participants supposedly showed “dramatic behavioural improvements after receiving a dose of a single drug”.
Don’t get caught in the hype
It was suggested that children in the trial dramatically improved their social and communication skills after receiving a small dose compared to those who got a placebo.
Amaze’s response to the story was simple – don’t get caught in the hype.
The sample size was small, with just 10 children, and there was concern over side-effects such as nausea and abdominal pain.
Professor Nicole Rinehart said, “Parents who are desperate for cures and answers start trying to get hold of these medications that could do terrible harm”.
The most recent therapy story appeared in Melbourne media under the headline “Creating crapsules: is faeces in a pill the cure for our ills?”.
The story told of a stool bank that actively solicits donors, at $US40 a poop, to provide the raw material for its stock in trade, the faecal microbiota transplant (FMT).
Faeces of carefully screened donors are churned into a slurry, which is then squirted into the bowel via a colonoscope or enema, the aim being to “repopulate healthy bacteria in guts ravaged by disease”.
The article added: “Evidence is mounting for its benefits in other gut problems, including ulcerative colitis, Crohn’s disease and irritable bowel syndrome.
“The gut also has complex connections with the brain and so altering the gut’s bug profile is, mind-bogglingly, the focus of research in depression, anxiety, autism, Parkinson’s disease, multiple sclerosis and obesity.
“The good news, depending on your world view of course, is that you can now swallow it, freeze-dried in a capsule – that’s ‘crapsule’ in the vernacular.”
Classic autism traits ‘got better’
The report explained how a study, published last year, administered FMT to 18 children with autism spectrum disorder, an “illness” where bowel symptoms such as constipation and diarrhoea are common.
The report added: “Not only did FMT improve the gut issues, but classic autism traits, including poor social skills and communication, got better as well.
“It’s not clear exactly how, but a recent review points to a role for substances made in the gut under the influence of bacteria, including serotonin and gamma-Aminobutyric acid (GABA), that affect communication between brain cells.”
There are multiple concerns with this report. Firstly, autism is described as an illness, which it is not. Secondly, FMT being administered to 18 children is a small sample.
Autism is a neurodevelopmental condition which affects the brain’s growth and development.
It is a lifelong condition, with symptom that appear in early childhood.
There are services and supports in place to help guide families at the point of diagnosis.
For example, the Amaze Autism Information Advisor service has been specifically designed to inform parents of their options at the point of diagnosis.