Showing posts with label NICE. Show all posts
Showing posts with label NICE. Show all posts

Tuesday 8 September 2015

Time for a new generation of Autism “Experts”?

Farewell to Pingu

I usually succeed in keeping to the science in this blog and refrain from sharing my other wider opinions.  Today I slipped up.

Rather like James Simons, founder of the Simons Foundation, I do not have a high opinion of many supposed experts, particularly when it comes to autism.

Autism is often a backwater, where “academics” can still write the occasional quasi-scientific paper on some touchy-feely aspect that they consider important and make a name for themselves.  On the back of this, they can advocate for their perception of autism and often encourage ever-wider diagnosis in people who are less and less severely affected.

So far this is fine; we are all entitled to have our own opinions, so no comments on Autism Speaks, Autism One, or the various National Autism Societies. They all have the best intentions.

I should highlight the Simons Foundation and the UC Davis MIND Institute as being excellent scientific sources of objective information.

The only reason for today’s post is the comment made by someone who might be seen as the United Kingdom’s top autism expert, Professor Simon Baron-Cohen, Director of Cambridge University's Autism Research Centre. With such a tittle, he should set a high standard.

"We're not looking for a cure  … its part of their genetic and neurological make up," said Professor Simon Baron-Cohen, director of the Autism Research Centre at Cambridge University and vice-president of the National Autistic Society.

And …

“Children with Autism wait on average about three and a half years to get their diagnosis," Mr Baron-Cohen said.

It may come as a surprise to the Professor, but Parkinson’s disease is also a complex condition with a complex genetic element.  

Numerous very bright researchers are working to defeat Parkinson’s disease and, I am informed, that they are quite likely to achieve this end.

They set out to find a cure; they may indeed fall short and just find an effective therapy.

Imagine athletes starting a race, they all aim for gold.  By aiming for first place you might just come 5th, but if you did not train for gold you would come last.

As for the Professor’s comment that people in the UK wait over three years for an autism diagnosis, this is not strictly true and is scaremongering.  People with what used to be autism, i.e. classic autism, Kanner’s autism or autistic disorder go to the front of the assessment queue and get diagnosed for free within a few months.  Some parents keep going back for a second, third, fourth, fifth opinion until they get the result they want; this takes years. 

There is of course nothing to stop someone in the UK paying themselves for the assessment and so waiting a matter of weeks; after all they would happily pay to have someone fix their washing machine.

The UK consultant neurodevelopmental pediatrician, who diagnosed my son, told us at the time that a multidisciplinary assessment is generally not needed and that she can see almost immediately if a 3-4 year old has autism.  With what I now know, I would have to agree with her 100%; to the trained eye it is obvious.  

There are numerous milder dysfunctions that can affect children and there is an ever growing raft of observational diagnoses.  These diagnoses are all highly subjective and some really could be simplified to “I DON’T KNOW”  (PDD NOS = Pervasive Developmental Disorder Not Otherwise Specified).  I rather liked IED = Intermittent Explosive Disorder.

In many cases the troubling symptom in these milder dysfunctions is “just” anxiety.  If the anxiety is severe enough to need treatment, why not try one of the safe (i.e. not Prozac) drugs? There are numerous existing treatments (Propranolol for example) for children with anxiety and some interesting new ones (Baclofen).

Then we would be left with:-

Autism, a disabling developmental disorder diagnosed in early childhood.  Following its diagnoses, based on simple observational/behavioral criteria, a biological diagnosis of the underlying dysfunctions should be sought.  A small minority of these dysfunctions are substantially curable.  Some dysfunctions in the majority of the remaining children are, to a meaningful extent, treatable today.

Having treated what is treatable, use behavioral therapy.

Unable to contribute to finding cures/therapies for the underlying biological dysfunctions, the Professor and many like him have sought to widen the scope of “autism” and diagnose ever more people.  The latest idea being the Broad(er) Autism Phenotype (BAP), where you diagnose almost anyone as a teeny tiny bit autistic.

Now everyone from Nikola Tesla to Fieldmarshal Montgomery is supposed to have been autistic.  Both did rather well for themselves for someone with a disability.

This “mild” autism is extremely subjective, which is why so many assessors will not diagnose it, and so yes, if you keep going for several years you may find someone to tell you that you have “autism”.  But then what?  There are no cures or therapies, apparently.  There are these supposed “services” which are available on diagnosis, depending where you live.

There are indeed valuable services for people with severe autism, like speech therapy, occupational therapy and behavioral therapy.  These are not going to help much with mild autism.

The mother of the child in the above BBC interview said her child is much better now because “he is on the right (anxiety) medication” and is in a school with small classes.  He had previously been given all sorts of diagnoses, Tourette syndrome, OCD etc. in multiple earlier assessments.

Why not take an anxiety medication if you had OCD, or Tourette’s?  Just google it.  Was the doctor only willing to prescribe an anxiety drug with an autism diagnosis?

The key was treating the anxiety and being in a small class at school.  Is that really “autism”?

Many children who are different, in one way or the other, struggle in large classes and many of them also get bullied, sometimes even by the teacher.  By all means call it Asperger’s, but please do not call it autism.

Yes, the Professor would say that autism is a spectrum.  This really means he has no clue what is the underlying biological dysfunction, so let’s call it all “autism” and be done with it.  “Autism” is in fact just a name for almost anything that goes mildly or severely wrong neurologically, in the first few years of life. 

Once you are a teenager, if a new unknown dysfunction occurs, it gets new labels: - schizophrenia, bipolar etc.  These are also just observational diagnoses and within them are numerous different genetic and environment causes, some of which are treatable, if you care to look.

Other Experts

It is not just the Professor; you will come across numerous “local experts” perpetuating misunderstandings regards autism.  Like the dedicated Principal of the autism special school explaining that some of her kids have such terrible anxiety that their stomachs are tied in knots and they have severe GI problems.  Anxiety certainly does not help, but we actually know much about reflux/GERD in autism and the more serious IBS/IBD/ulcerative colitis.  We even know the mechanism that may explain why reflux/GERD is comorbid with autism, it is called mGluR5.

On the subject of ulcerative colitis and autism, just because a certain Dr Wakefield highlighted this link, it is widely assumed to be a falsehood.  The literature is strewn with links between ASD and ulcerative colitis.  I have an anecdote of my own.  One of the few people I hear about with Asperger’s, where we live, was first diagnosed with ulcerative colitis, then followed the Asperger’s diagnosis, and now he needs part of his intestines removed.   This could have been treated years earlier and then there would be no need for surgery now and years of trouble at school could have been avoided.

Clever Scientists

What is needed are hard-core clever scientists, not soft-hearted touchy feely Psychologists. (Apologies to those forward looking Psychologists amongst you, who keep updated by reading the literature)

I could not agree more with James Simons and his Foundation, who choose to fund Nobel Laureates and future Nobel Laureates.  Hopefully, they do actually aim to find cures.  It may take a hundred years, but along the way there will be numerous therapies to improve outcomes in the meantime.

Some of these therapies for specific causes of “autism” already exist.  They are in the literature, but I guess Baron-Cohen does not read it.

Perhaps a little shocking is that even though the Professor is not a medical doctor and so has no medical experience of treating people with autism, he was the 2012 Chair of the National Institute for Health and Care Excellence (NICE) Guideline Development Group for adults with autism.  This is advice that is given to doctors in the UK on how to treat autism.  Not surprisingly, NICE guidelines to doctors in the UK actually tell them not to bother, core autism is not medically treatable.   

In many areas of health, like asthma, the NICE treatment guidelines are excellent and a great resource for clinicians and patients.

How can you attend the top universities, albeit not in medicine, work 25 years in  the field of autism research, travel to all those nice conferences, even edit an autism journal and not have realized/discovered that it is treatable? It is almost criminally negligent.  If cases of autism are treatable, they are potentially preventable and, if caught early enough, potentially reversible.   

If you want a warm feeling, don’t campaign for “Autism Awareness” or wider “Autism Diagnosis”, campaign for free detailed metabolic testing, genetic testing and MRIs (with MR spectroscopy) for all people diagnosed under five with autism (at their first assessment!).

By the way, I have no doubt that many of the highly intelligent researchers who get funding from the Simons Foundation would also have struggled in their childhood had they been in large classes, in non-selective, State-funded, primary schools.  

A wake up call

It is not just me claiming that most types of autism are, to varying degrees, treatable today.

There are a growing number of readers of this blog who have found the same. Most are regular parents, who current “Experts” would totally ignore, but some are actually doctors, medical researchers, and even Professors of Medicine.

If an amateur, with a blog, can figure out usable therapies from the literature, we really do need some new Experts, and then NICE will need to rewrite their guidelines.

Saturday 30 March 2013

NICE Brits 281 and Californian Quacks 305?

I have to thank Paul Whitely  for a post on his website that I am hijacking today.  Click on Paul’s name to go to his blog.

National Institute for Health & Care Excellence (NICE)
NICE is an organisation in the UK, funded by the Department of Health.  They produce excellent guidelines on  most medical conditions for both doctors and patients.  They are all available free on line.

NICE & Autism
NICE are producing a guideline called:-  

Autism, The management and support of children and young people on the autism spectrum.  The guideline is still in the draft stage, but there are two versions:-
Full version (790 pages) 
Summary (40 pages)

You may wonder who on earth is going to read a 790 page document.  The 40 page document does not say a lot, you could summarize it as folows:-
  •  Carers (parents) are unsupported, miserable and financially strained
  • Children should have access to care and therapy, that does not currently exist
  • Local autism teams should have the skills to provide, or organize, the interventions and care recommended in this guideline, but they currently do not have these skills.
  • No magic cure exists

The NICE list of Dos and Don’ts  (Mainly Don’ts)


Do not use the following interventions for the management of core features of autism in children and young people: 

·         antipsychotics
·         antidepressants
·         anticonvulsants
·         exclusion diets (such as gluten- or casein-free diets)  -  sorry Paul

Do not use omega-3 fatty acids to manage sleep problems in children and young people with autism.

Do not use auditory integration training

Do not use the following interventions for children and young people with autism in any context:  
·         secretin
·         chelation
·         hyperbaric oxygen therapy 


Consider a social-communication intervention for the management of the core features of autism in children and young people. For pre-school children consider delivering the intervention with parent, carer or teacher mediation. For school-aged children consider delivering the intervention with peer mediation.

Consider the following for children and young people with autism and anxiety who have the verbal and cognitive ability to engage in a cognitive behavioural therapy (CBT) intervention:  

·         group CBT adjusted to the needs of children and young people with autism
·         individual CBT for children and young people who find group-based activities difficult.  

For behavior that challenges, try antipsychotic medication.

The 790 page version  -   NICE Brits 281 and Californian Quacks 305
I was rather disappointed by the 40 page version of NICE, so I opened up the 790 page version.  I recommend you do too.  It is totally different.  Some people have spent many 1000’s of hours analysing all the scientific literature on a wide range of biological, social, psychological and educational aspects of autism.

The problem was on page 281.  This is the page where those clever guys over at Stanford 94305, get their research into Glutathione (GSH) mentioned. (94305 is their zip code) 

Then on pages 389/390 NICE give their verdict on the Stanford guys' findings.  They conclude that while NAC does nothing bad, it also did nothing good.


Now, I am no medical genius, but nor am I a complete moron. I read the full Stanford research paper as a highly sceptical, but informed, parent. I concluded, as did the Stanford team, that they had found something very important. To get the full report you have to pay $31.50 but I figured it was well worth it. So if this excellent research just gets sliced and diced, and then trashed, in this 790 page review, how much faith do I have in the other 787 pages?

I am with those Quacky Californians on this one.  Those NICE Brits can call me a quack too.