Beware of dangerous, expensive and ineffective treatments for autism

Every April is World Autism Month. I am a parent and I know the instinctual urge is for parents to strive to give our children the best, and specifically so when they are not well. Every parent wants their children to lead happy, healthy and fulfilling lives. Regrettably, this soft spot in parents has been exploited many times when our children are not well and more so for parents of children and adults with autism in Kenya.

Many dubious autism “experts” have emerged to take advantage of the knowledge gap in autism treatments, peddling what are mostly unsafe, ineffective and often very expensive treatments for autism. Some of the recommended destinations are as far as India, Panama, and Guatemala. These fraudsters prey on the desperation of parents and promise numerous unfounded solutions that have not been thoroughly investigated by scientists.

Before beginning any treatment, parents should thoroughly investigate the treatment and weigh it against the most up-to-date scientific evidence. Parents should also seek advice from their health care providers or medical experts in the field of autism who can assist them assess the risks and associated benefits of proposed treatments given that some of the interventions are outright dangerous and can lead to the death of a child.

There is now overwhelming science-based evidence on effective interventions for autism. The evidence is clear that any effective interventions for autism should teach language and communication, social skills, imitation, play skills, life skills and motor skills. Most of these skills can easily be taught at schools by providing children with autism structured opportunities to interact with their typically developing peers.

A multidisciplinary team of professionals that may include a medical doctor, speech and language therapist, an occupational therapist, physical therapists and most likely a behaviour therapist is the ideal recommendation for the best outcome.

Applied Behaviour Analysis (ABA) has also been hailed as the most effective, evidence and research-based methodology in  reinforcing desired behaviours in autistic people. ABA involves a set of powerful techniques used to teach new skills, increase communication, promote independence, and decrease challenging behaviours. There is little or no evidence to support most other interventions sold to parents of children with autism including stem cell therapy, gluten and casein free diets, bleach therapy, vitamin and supplements and raw camel milk.

Stem cell therapy, for example, is illegal in the United States and most developed nations. In most parts of Africa and countries where it is performed, there are government oversights. There is also no evidence that this treatment is safe or effective for autism, and neither is there a guarantee that the stem cells used in these countries are even human cells.

 Among the most common diet interventions used here in Kenya are the gluten and casein free diets. Those who promote these diet interventions claim that persons with autism should stay off proteins found in wheat, rye and barley products, and casein ,  a protein found in dairy products. 

Furthermore, practitioners of this diet claim that persons with autism have “leaky guts” that allow opioids to escape into the bloodstream and then travel to the brain and cause autistic behaviours. 

Unfortunately, there is no evidence to back these claims and studies have found that compared to typically developing children, children with autism have no more opioids in their blood. What is concerning is that children on the gluten and casein free diet have been found to have lower bone density, which could lead to osteoporosis.

Bleach therapy is outright fatal. In bleach therapy, a person with autism is given a diluted form of bleach orally or through an enema in an attempt to cure symptoms. Bleach doses are given repeatedly. Those who prescribe this treatment have recommended that children drink the bleach mixture up to eight times per day or receive an enema up to three times per week. The rationale for the treatment is that bleach can eliminate bacteria, parasites, yeast, and heavy metals and consequently eliminate autism symptoms. This treatment has been widely denounced for the harm it can cause as well as its complete lack of scientific basis. Ingesting bleach can lead to severe fever, diarrhoea, vomiting and death.

There is no harm in maintaining a healthy and balanced diet and as such parents of persons or children with autism, like all other parents, can use supplements with recommendations from their medical doctors or nutritionists. 

However, the use of supplements in an attempt to cure autism is problematic. There is no scientific evidence suggesting that vitamin supplements can cure autism. Currently, there is no cure for autism. Some supplements like vitamin A can be toxic when taken in high doses for sustained periods. Eating nutritious foods also provides a host of the vitamins present in the said supplements.

Given the fads, controversies and quackery treatments peddled to parents of children with autism, there is a higher bar of responsibility in investigating what works and what is dangerous. The recommendation is simple. Parents of children with autism should make treatment decisions together with a licensed professional. As popular wisdom goes, when the deal is too good… The same is true for autism interventions.

Dr Kamau is a Board Certified Autism Treatment and Research expert based in Boston, Massachusetts, US. Email: [email protected]