Why Has Autism Research Been Failing ASD Children & Parents?

Why Has Autism Research Been Failing ASD Children & Parents?

I have been personally following autism research for well over 20 years. Despite the huge number of studies that have been published, the most common research findings into diet and or supplements is that it is “inconclusive”. Mainstream medicine picks this up and advises parents that diet or supplements are “not proven”, may be “dangerous” and peddled by “quack” practitioners. When I present parents with the facts, the most common response is “why didn’t my doctor tell me this?”

It was the medical model, of which I was a part of for over 30 years, that convinced me, as a medical scientist, that mainstream autism advice was doing little for my son’s ASD issues. I looked to the future and realised that 15 years was not a long time before he became a young adult. I wasn’t prepared to just medicate him and wait for a diet, supplement, genetic test, drug or other intervention, that in a double blind placebo controlled trial was effective to “cure” his autism. Researchers struggle to find funding for “alternative treatment” trials, let alone getting them published in prestigious medical journals. In the meantime, my option was to medicate my son with drugs that were “off-label” (not evaluated) for use in children.

Being able to read and evaluate the published research into autism, took me onto a different path. If keeping abreast of the current research, treating ASD children’s anxiety, constipation, loose stools, sleep disturbances, restricted eating habits, anxiety puts me under the “quack” category, then I am comfortable with that. Many of the great advances in medicine were by individuals that were considered “quacks” and ridiculed by mainstream medicine. Most recently Barry Marshall and Robyn Warren, the doctors that discovered that gastric ulcers were caused by Helicobacter pylori infection. They were ridiculed at conferences and in medical journals. Although you wouldn’t know that if you read Barry Marshall’s biography in Wikipedia. Ultimately they were vindicated and in 2015, Barry Marshall received the Nobel prize in Physiology or Medicine! Medical history is full of stories of individuals that were willing to look outside of mainstream beliefs of the day. They were ridiculed and ignored, but ultimately they were proven right.

Many practitioners that treat ASD individuals have a common bond of having their own children on the autism spectrum or have family members that are on the spectrum. Like other parents, I was driven because mainstream medicine had very little to offer my son. A short trial of Ritalin was enough to convince me that this was not a solution for him. Being a medical scientist, I was able to read the research and weigh up the risk to benefit of individual diets and supplements. The research and anecdotal reports from other parents convinced me that this was worth a try. Medical history is full of stories of someone making an observation (which is anecdotal) and bringing it to the attention of mainstream medicine. If this involves a pharmaceutical product, it’s usually promptly researched, published, doctors educated and the drug is mainstreamed. The medical profession is very slow to change and put other research into clinical practice. Let alone accepting the evidence for dietary modification or supplements. I am confident in saying that these same professionals, who are opposed to other treatments, have most likely not bothered to read the current research into diet or supplements. Just as they have not read the research showing that antidepressants are by enlarge ineffective.

One thing that practitioners, like myself have in common, is that we are driven to help children with a disability achieve their full potential in life. There is a saying, “if you have met a child with autism, you have only met ONE child with autism”. Children with autism present in so many different ways. That is why they need to be treated individually according to their presenting needs. As a parent myself I do feel for other parents when they bring their children to see me. Sometimes the advice I give is not what they want to hear. Helping their child is not just about giving supplements or modifying diet, it is also understanding what your child is trying to tell you through their challenging behaviours.

Helping them is just as much understanding their underlying frustrations, anxiety, discomfort and needs as it is correcting underlying nutritional or medical issues.

This is where mainstream research is failing. Pick a treatment, double blind placebo control it, try it on a group of ASD individuals, “massage” the results statistically, and report the treatment as “insignificant” or “inconclusive”. Lost in the research findings are those individuals that respond very favourably to the treatment under investigation.

Let’s look at an example. The one gluten and dairy free dietary study that is often cited as being a well-designed, double blind placebo controlled study is:

The Gluten-Free, Casein-Free Diet In Autism: Results of A Preliminary Double Blind Clinical Trial.

The study abstract reads:

“Group data indicated no statistically significant findings even though several parents reported improvement in their children.”

So “no statistically significant findings” is all that is picked up by the medical profession and reported by the media.

When we read the details of the study we find:

“….parents of seven children reported that there were marked improvements in their childs language, decreased hyperactivity and decreased tantrums. Further, parents of nine children decided to keep their children on the GFCF diet even though there was “no empirical support for continuing.”

I pose the question: what behavioural therapy, or medication would have such a rapid improvement in language, hyperactivity and tantrums within 6 weeks? How many parents reading this would love to have a result like this?

What stressed, time poor parent would continue with any diet, unless they were seeing some benefit in their child, that was making family life easier?

Also interesting were the unsolicited reports of one teacher and one respite worker who claimed to observe language and behaviour improvements in two of the children.

So apart from the parents, there were two other independent reports of improvement in two of the children. Again I am unaware of any behavioural intervention that can produce such rapid improvements in behaviour, speech or gastrointestinal symptoms in our children, within 6 weeks!

In 2014, Amaze estimated that there were approximately 55,000 individuals living with an ASD diagnosis just in Victoria. If we translated the results of the above study to these 55,000 ASD individuals, we would have:

Number of participants in study Number of ASD individuals in Victoria
N= 13 N= 55,000
Worst case scenario 2 children improved in speech and behaviour (15.4%) Potential equivalent number in Victoria = 8,470 (15.4%)
Best case scenario 7 children improved in language, hyperactivity and tantrums (53.9%) Potential equivalent number in Victoria = 29,645 (53.9%)

 

So worst case scenario, we could potentially have just over 8,000 ASD individuals improve, best case over 29,000 individuals improve, in Victoria, in just 6 weeks! Other studies suggest that the longer individuals are on the gluten and dairy free diet, the greater the improvements. It should be noted that ASD individuals with gastrointestinal issues, that are most likely to benefit from a GFCF diet, are often excluded from the selection criteria. If your child was one of these children that showed such improvements, would you be happy? If you could take them out in public and they were much calmer and having less tantrums, would your life and your families’ life be easier? If their speech improved, would that be worth it? Yes, they are still autistic, but their quality of life is so much better.

Just as I completed writing this article, a new research article was published:

Effect of gluten free diet on gastrointestinal and behavioral indices for children with autism spectrum disorders: a randomized clinical trial.

In this randomized clinical trial, 80 children diagnosed with ASD were assigned a gluten free diet (n=40) or regular diet (n=40) for 6 weeks. Of the 80 children, 53.9% had gastrointestinal abnormalities. In the gluten free diet group, the prevalence of gastrointestinal symptoms decreased significantly after initiating the gluten free diet (40.57% vs. 17.10%) but increased slightly in the regular diet group (42.45% vs. 44.05%). Gluten free diet intervention resulted in a significant decrease in behavioural disorders while in the regular diet group there was a slight increase in behavioural disorders. Again in 6 weeks!

Remember this is just removing gluten and no consideration was given to removing dairy, artificial colours or preservatives (a significant problem for many children not on the spectrum), salicylates, etc. Processed gluten free foods that contain just as many nasty additives that can also cause behavioural issues.

6 weeks!

Less than 2 months. I look at these results as a parent and think, in the lifetime of my child, six weeks is NOT long. We can manage it. If it works, that would be wonderful. If it doesn’t (and there have been many things that we have tried that didn’t), do I call it a “quack” diet or a “sham”? No. My child unfortunately is in the 46.1% for which the gluten free diet didn’t work. If Ritalin doesn’t work for your child – is it a “quack” treatment? No. Your child is in the 71% for which it doesn’t work.

Finally, if you are going to do a gluten free diet (or any other diet) – do it right. This is the other conversation that I have with parents. Parents may say: “Yes we followed the diet 80% of the time.” Or “We weren’t that strict on the weekends!” NO! If you are going to do it, it has to be 100%, preferably not relying on processed gluten free foods. If your child was coeliac, would you still be gluten free for 80% of the time? If your child needed a course of antibiotics, do you give them 80% of the time or skip them altogether on the weekend? No, and chances are that your doctor would not be impressed and have a few harsh words to say to you about being a responsible parent.

This is just one example. However, the same scenario repeats itself with most other studies that involve diet or supplements.

All I can do is present the research. I as a parent decided which path I would follow to help my son achieve his full potential. I am more than happy with his outcome and proud of what he has achieved. You as a parent have your own journey to take with your child. Your child has their own individual issues and needs, and they need a treatment plan that is specific for their needs.

Instead of dismissing ASD research into diet as “inconclusive”, consider it from another perspective. I look at treating autism like this Starfish Story. I strongly encourage you to click on the link and read it, as this is exactly what we are trying to do with treating ASD children. Trying to get one parent at a time on board to help their child. Making a difference to one ASD child at a time.

If you consider me a “quack” for doing so, I can live with that. Misrepresenting research and not making parents aware of the current trends in ASD research, I can’t live with. Nor can I watch children being medicated (with off-label psychotropic drugs), as the medical system (especially in Australia) can’t be bothered to do a comprehensive medical workup to identify underlying medical issues in ASD, ADHD and other children with disabilities. The research is showing that ASD children, as they enter adulthood, have a very poor quality of life. Every parent should strive to give their child the opportunity to achieve their full potential for when they enter adulthood.