New figures reveal that the majority of parents of autistic children feel forced into trying treatments which haven’t been scientifically tested.
These parents say that their lack of knowledge about autism is having a negative effect on their child’s wellbeing and they are calling for more research to find the answers and information that they crave.
The poll carried out with parents of autistic children under the age of 18, revealed that 80% have tried treatments or behavioural or psychological interventions without the recommendation of their child’s doctor, with many parents finding these online. 55% said that they feel forced into using untested therapies because so few well-evidenced options are available. Three quarters don’t feel their doctor gives them enough support.
Autism research is one of the most under-funded areas of science in the UK. 97% of parents said that more research is the only way that they can get the answers they need to help their child.
Care costs for autistic people with support needs are exceptionally high and many services offered to families are unproven, yet just £4 million is currently spent on research to improve the lives of autistic people.
Parents of autistic children were surveyed in our poll
"I’m not surprised to hear that so many parents are resorting to “Dr Google” to find ways to support their autistic child", says Jon Spiers, CEO of Autistica.
"Families and doctors tell us every day that there are hardly any evidence-based answers. Autism is complex and there’s so much that we don’t know about ensuring those on the spectrum can live the best possible life. Parents are understandably desperate to help their children in any way they can, so it is natural that they seek advice elsewhere if they can’t get it through their doctor. We urgently need to find answers and the only way is through research.”
Amanda is mum to Jude aged 14 who is autistic and has ADHD.
She explains how she feels forced to go online to help her child:
“After Jude was diagnosed we got offered nothing to help with the daily challenges he faces. Like many autistic children, he has terrible anxiety and gut problems. I hate to see him suffer so I’ve had to rely on recommendations online. We’ve tried gluten-free diets, omega oils and kefir help. It’s all trial and error. We need more research to understand what works, and more support from healthcare professionals who understand autism.”
“As parents we also need help to understand our child’s needs so that we can support them and help others to accept and embrace them in society.”
Some treatments lack evidence but are relatively harmless, but a number of fake ‘cures’ are offered online which are actively dangerous.
One notoriously harmful treatment sold online dupes parents into feeding their children bleach to ‘detox’ them.
Declan Murphy, Professor of Psychiatry and Brain Maturation at Kings College London commented:
“It is worrying to see well-meaning parents falling prey to charlatans touting fake cures for autism online. These create false hope, are financially and emotionally costly to parents and in some cases can be physically or mentally harmful to the child.“
Jon Spiers added:
“We owe it to families and autistic people to find the answers that they need. Through more research, we can provide them with reliable information and evidence-based services from the point of diagnosis right through to old age.”