Treating Autism – The State of Play

Image © Acabashi; Creative Commons CC-BY-SA 4.0 Source: Wikimedia Commons

I have learnt a great deal since I started to research autism treatment in 2012 and publish my notes in this blog from 2013. Prior to 2012 I had assumed that autism was not medically treatable and that there was no evidence to the contrary, so anyone claiming to treat autism must be a quack.  You are supposed to "trust your doctor" and I come from a family full of them.  It turns out that almost all treatments for conditions of the brain, ranging from depression to Multiple Sclerosis to dementia are only very partially effective, but in most cases they are better than nothing. Apply these expectations to treating autism and then read the medical research and clinical trials; you will see that autism is indeed as treatable.  

It turns out that many people have found effective medical therapies for their autism. But autism is not viewed as a public health emergency, like HIV or Ebola and no public health authority shows much interest. Don't expect that to change.

The leaves are beginning to fall and we are on our way to 2020, much time has passed but has the wider world caught on and moved at all?  Not really.

• Enthusiastic autism pharma start-ups come and go, losing hundreds of millions of dollars

• Autism therapies are fast-tracked by the FDA, then go nowhere fast

• Autism treatment case histories, using existing drugs, get published but are ignored

• Partially successful autism clinical trials of existing drugs keep getting published and are then ignored 

• Some very bright clinicians do not publish their successful work in treating autism

• Clinicians successfully treating their own children with autism often choose to remain silent

• A tiny number of mainstream medical doctors do treat autism, but some cleverly call it something less controversial, like encephalopathy

• Many of the “doctors” who do treat autism are not doctors of medicine (i.e. an MD).  This is the case in North America where the "doctor" can be a DO (Osteopathy) or a DC (Chiropractic), for example Dr Nemenchek is a DO.  I think this is partly where the crank issue has arisen from; many MDs do not seem to like DOs and DCs, particularly if they write books with the word miracle on the front cover.   

• Treating idiopathic autism is still viewed as a dangerous/crank activity by mainstream medicine; the  best view is fringe and the worst is cringe.

• Treating single gene autism is now viewed quite favorably, it is somehow more acceptable that treating equally severe idiopathic autism.  It attracts at least some MDs, rather than DOs and DCs.  It is seen as something clever, like treating cancer.

• By shifting autism to a more trivial condition, by diagnosing so many people, it appears to not even need treating

• Many things do look very odd in the world of autism. People with a sibling or child with Autism/MR/ID can react very differently, some are inspired to help others and some even look to develop medical treatments, while others either never tried, failed or gave up and are now against medical treatment (in the UK Psychologist Simon Barons Cohen and author/GP Dr Fitzpatrick, for example). The idea seems to be that because they could not help their family member, you should not try.  Very defeatist. People should declare their inherent bias and indeed their own psychiatric diagnosis, if they have one, that would rule out 90% of what is written about autism, much of which is nonsense. In the wider world, you learn from your failures, strive for success and never give up.  That is how progress is made.  Those who have failed, or given up, should move aside and give space to the next generation who will achieve more.  If it is a disease or disability, you treat it; you do not just hide it by broadening the diagnosis to include trivial cases and then "celebrate" it as just a difference.

Hopefully, Neurochlore and Servier will get Bumetanide approved for autism in Europe in the next few years.

Hopefully, doctors will actually prescribe it to European toddlers through to adults with autism.

Only then will mainstream doctors stop saying you cannot treat core autism with a pill. In reality there is evidence that dozens of pills are potentially beneficial, but there is no sure-fire way to predict which will be helpful in one specific person. 

It has been clear for years, to anyone who chooses to actually read the medical research, that many cheap existing pills can be repurposed for various sub-types of autism.  In almost all cases, polytherapy will be needed and treatment leads to improvement rather than cure. This is also the case with MS, epilepsy, depression etc.

I hope that by 2030 at least monotherapy for core autism with MR/ID will be in the mainstream.  In the meantime a small number of people, with otherwise severe autism, will continue to benefit from their science-based personalized medical treatment.