Navigating "Medical" Approaches to Treating Autism

One doctor/autism parent recently mentioned to me that readers need to be made aware that drug interventions for autism can take time to show effect and that since parents see their child every day, they may not notice such gradual changes and potentially throw away a drug that actually is effective in their case.  This is indeed true.

On the other hand, as noted in their critique of Vitamin B6 use in autism, the Lurie Center for Autism at Massachusetts General for Children advised:

“It is difficult to track improvement or decline in children with autism because many have cycles of better, then worse, behavior, and many are also involved in more than one therapy that may change while the child is on supplements …

In our experience, although parents may see a change (positive or negative) in the short term, few continue to give megadose vitamin B6 to their children because of the difficulty in teasing out whether or not it really makes a difference and because of the activation and irritability seen in long term treatment.”

Some parents do not value small improvements, but if you combine five therapies, each with small improvements, the net effect can be substantial.

Some interventions have no side effects, unlike many B vitamins, and so it is just a question of whether there is a genuine benefit that is sustained.  If you stop the therapy, is the effect lost? albeit possibly gradually, and does the same benefit return when you restart the therapy?

As the child gets older, does the therapy continue to have value?  I recall being asked by Dr Ben Ari, how do I know after 8 years my son still benefits from Bumetanide? Every now and again we make a pause from Bumetanide and see how he responds.  How would you measure the response?  I use how good my son is at his online math tutoring program as an objective measure of cognitive status. I also ask him in the afternoon what he had for lunch that day; without bumetanide he usually cannot answer.

Another doctor who was treating his son with bumetanide and also low dose clonazepam for some years, told me that he ran out of clonazepam and decided to see if it still provided a benefit.  He concluded that clonazepam was no longer needed.  It is important to check; there is no point using a drug just for the sake of it.

Some people find a positive effect is lost and they need to readjust their dosage.  This seems quite common with sulforaphane.

As some readers have found, interactions between drugs and supplements mean that dosages may need to be adjusted. Low-dose clonazepam in particular has only a very narrow effective dosage range. Very many drugs, including verapamil, reduce the excretion rate of clonazepam and so increase the level in your blood. Vitamin E increases the metabolism of clonazepam.

An even more fundamental issue is whose interventions should you consider and where is line between potentially helpful therapies and crank therapies.

I am surprised how different clinicians react to other people’s therapies. For example, one US neurologist when introduced to the idea of potassium bromide as a therapy for autism and indeed pediatric epilepsy thought the idea was very interesting and lamented not being able to try it, while another US neurologist’s immediate reaction was “call child protective services”.  Both neurologists are well known autism doctors.

There are many widely shared approaches to treating autism, some are dietary like the gluten and casein free diet, the ketogenic diet or the popular GAPS diet; some use dietary supplements like fish oil and vitamins.  All approaches have their committed followers.

Most medical doctors are critical of any therapy claiming to treat autism; the few progressive mainstream doctors who do attempt to treat autism can be very disparaging about the methods used by others.  Of course, the most open-minded medical doctors are the ones successfully treating their own child's autism.

Some “protocols” that are put forward are presented as treating a very wide range of conditions (chronic pain, Alzheimer’s etc), far beyond just autism and this does naturally raise suspicions, but some conditions with very different symptoms can share similar underlying biology.

Mainstream medicine is by its very nature extremely conservative, cautious and slow moving.  Different countries may practice very different mainstream therapies and some techniques take 20 years to become adopted from one continent to another.  There is no single mainstream, it varies.

Progressive mainstream medicine gradually pushes the boundaries. In the world of autism such practitioners are mainly in the United States and surprisingly in Italy.

Science driven autism therapy stretches beyond progressive mainstream medicine. It takes many years for ideas in the scientific research to become part of medicine.  If you do not have a couple of decades to wait, you can choose to look at the science and identify what might eventually become medicine.

Applying an open mind to what might seem far-fetched alternative therapies can reveal alternative modes of action which are very much science based. Dr Yu has therapies for autism based on treating parasites.  It turns out that some anti-parasite drugs like Ivermectin and Suramin have modes of action that really should benefit some types of autism, but have nothing to do with parasites. 

If someone finds their Alpha Lipoic Acid (ALA) chelation therapy beneficial, this is not a surprise because ALA is an antioxidant widely used in medicine to treat diabetes and will benefit those with oxidative stress (autism, mitochondrial disease, cardiovascular disease etc).  It might have nothing to do with chelating metals from your brain. 

The DAN! (Defeat Autism Now) protocol was very popular and many people in the US still have a “DAN Doctor” who is applying the ideas of Sidney Baker, Jon Pangborn and others.  These are so-called biomedical therapies and mainly use dietary supplements rather than prescription drugs.  Defeat Autism Now!, closed down in 2011, was a project of the Autism Research Institute (ARI).

In North America there are doctors of functional medicine, integrative medicine, holistic medicine. There are naturopaths, homeopaths, doctors of Osteopathic Medicine (look for the DO after the name and not MD) and doctors of chiropractic medicine (DC after their name).

What is clear is that most autism parents prefer the idea of special diets, supplements and the simple protocols like that promoted by Nemechek, which are often claimed to work for everyone. 

I do not think many turn to Dr Chez and his book on medically managing autism; he does not claim to offer a simple answer and that is what parents want. 

I am amazed how popular Nemechek is and that people have even informally translated his book into different languages and then it gets shared virally.  It is like the new DAN! Protocol. I should note that his ideas do indeed work for some people.

You would think that having a doctor of medicine (MD) is best, but then nothing much about autism is taught at medical school.  Nemechek is a DO, not an MD.

I would have thought a clever neurologist like Dr Chez would be best, but I take note that many people have found an open-minded psychiatrist, who helps them trial off-label therapies, is best. This seems to be particularly true of adults with mild autism / Asperger’s.

There is no one-stop-shop for treating autism, no matter how big your budget is.  You have to navigate your own path, rather than just hoping for the best.  If you rule out off-label drugs, you are ruling out many potent therapies; it is rather like the "warrior" going into battle wearing a blindfold or having their hands tied behind their back.  The result likely could have been better.