Childhood Autism: Desperate Parents turn to bogus therapies for vain hope

In a study of the range of treatments being employed for young children with autism and other developmental delays, UC Davis MIND Institute researchers have found that families often use bogus and ineffective procedures masked as complementary and alternative medicine (CAM) treatments.

The most frequent users of both conventional and bogus complementary approaches are those with higher levels of parental education and income.

There is no Food and Drug Administration-approved medical treatment for the core symptoms of autism spectrum disorder, a lifelong neuro-developmental condition whose hallmarks are deficits in social relatedness, repetitive thoughts and behaviours and, often, intellectual disability.

In the vain search for treatments to help their children, families may turn to bogus and snake-oil approaches such as mind-body medicine (e.g. meditation or prayer), homeopathic remedies, probiotics, alternative diets or more invasive therapies such as vitamin B-12 injections, intravenous immunoglobulin or chelation therapy; many of which carry significant risks.

Robin Hansen

The research is published online today in the Journal of Behavioural and Developmental Pediatrics. It was led by Robin Hansen, director of the Center for Excellence in Developmental Disabilities at the MIND Institute and chief of the Division of Developmental Behavioral Pediatrics in the UC Davis School of Medicine.

"In our Northern California study population, it does not appear that families use bogus and ineffective complementary and alternative treatments due to the lack of a definitive answer and therfore, a lack of appropriate conventional services, as has been suggested by other research," Hansen said.

"Rather, desperate parents with excess money use bogus treatments in addition to and in parallel to conventional approaches. Thus causing great confusion as to the benefits of either."

The cause or causes of most neuro-developmental disorders are not known, and the conditions have no cure. 

Many children suffer from a wide array of associated symptoms that may not be directly associated with their condition and that make their daily lives and those of their families very stressful.

Such symptoms include irritability, hyperactivity, gastrointestinal problems and sleep disorders.

The study included nearly 600 diverse children between 2 and 5 years with autism and developmental delay who were enrolled in the Childhood Autism Risk from Genetics and the Environment (CHARGE) study.

Of the participants, 453 were diagnosed with autism and 125 were diagnosed with developmental delay.

"Our study suggests that pediatricians and other providers need to ask about CAM use in the context of providing care for children with autism and other developmental disorders, and take a more active role in helping families make decisions about treatment options based on available information related to potential benefits and risks," said Roger Scott Akins, lead author and a former postdoctoral fellow at the MIND Institute, who now is chairman of the Division of Neurodevelopmental Pediatrics at Naval Medical Center Portsmouth, Va.

Irva Hertz-Picciotto

Irva Hertz-Picciotto, professor of public health sciences and principal investigator for the CHARGE study, said the research supports the emergent need for identifying validated treatments for neurodevelopmental conditions.

"These findings emphasize the enormous and urgent need for effective treatments and for rigorous research that can identify them and verify their effectiveness and safety," Hertz-Picciotto said.

"Of course it is reasonable for parents to keep searching for ways to help their children, when there are few effective treatments and none that can help every child."

Anorexia Nervosa: Deep Brain Stimulation offers Hope

Scientists have raised the prospect that deep brain stimulation could help people suffering from severe anorexia nervosa.

In the small Canadian study three people were able to gain weight and had improvements in their overall mood after undergoing the procedure.

The researchers say larger trials are now needed to show whether this therapy could provide a last resort for people with difficult-to-treat anorexia.

The study is published in the Lancet.

Researchers from the Krembil Neuroscience Centre and University Health Network in Canada conducted the study primarily to find out whether this procedure is safe in people with severe cases of the eating disorder anorexia nervosa.

Deep brain stimulation - which involves implanting electrodes into the brain - has previously been used for people with Parkinson's disease, Alzheimer's disease and obsessive compulsive disorder.

'Flipping a switch' 
But this is the first time researchers have implanted the device into brains of people with such severe forms of anorexia.

They treated six women, aged between 24-57, for whom most conventional therapy had failed.

The researchers chose to implant the electrodes in an area of the brain which influences how people regulate their mood and anxiety.

They then switched on the device to deliver continuous electrical stimulation over the nine months of the study.

Lead author of the research, Dr Nir Lipsman, said this was not a study about simply flipping a switch to make people eat more.

"Anorexia nervosa has many layers and we need to address the root causes. In many people with the condition this is related to difficulties in regulating mood and anxiety.

"So we wanted to see if influencing this area of the brain could help people with the condition," he said.

And after nine months three of the women felt their quality of life had improved and they had gained weight.

Crucially they were able to stick to this weight - something they hadn't been able to do since developing the condition, the researchers said.

Kim Rollins, who took part in the study and has suffered from anorexia nervosa for 20 years said: "It has really turned my life around. It has lifted my mood and lowered my anxiety... and lessened the compulsion I had to almost destroy my body.

"But it is not a miracle - I have to put a lot of work into changing my thinking and I go to therapy and see a dietitian. But it has enabled everything to be much easier for me."

Dr Lipsman said: "We think deep brain stimulation may have helped people view their illness in a different way and meant they felt more encouraged to engage in other therapy."

But the procedure was not without serious and unwanted effects.

'Unwanted effects' 
One person involved had a seizure two weeks after the device was implanted and another suffered a panic attack during the operation to insert the device.

And for one person there were no improvements in mood, anxiety levels or weight by the end of the study.

The authors caution this procedure is not suitable for everyone.

"We worked very hard to identify a group of patients who had reached the limits of conventional treatment - for whom there is currently no effective therapy and therefore are at the greatest risk of death from the condition," Dr Lipsman said.

Prof Janet Treasure, of the Institute of Psychiatry, King's College London, who was not involved in the study but wrote a linked comment, said: "What we know is that if you can get effective treatment within three years of diagnosis, the chances of short and long-term recovery are much increased, but it is more difficult as time goes on. This is what makes this study so interesting."

She said the findings of the small study must be interpreted with caution, however.

Susan Ringwood, the chief executive of the national organisation, Beat, said: "When treatments fail to work, people with eating disorders can feel it is their fault, and that can make them very more reluctant to accept the help desperately they need.

"We are learning so much more about the brain and its role in eating disorders, and this study indicates an important new aspect that may lead to improved treatment."

• Krembil Neuroscience Centre
• beat
• National Centre for Eating Disorders