PANDAS, PANS, Penguins and Autism

Anyone with a serious interest in autism should also be aware of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and PANS (Pediatric Acute-onset Neuropsychiatric Syndrome).  These are two syndromes which have acute onset of symptoms very similar to some of those found in autism.  It is claimed to affect 1 in every 200 children in the US.

The good news is that a very thorough and dedicated doctor called Susan Swedo has worked logically through from starting to identify the syndrome, all the way through to treating it.  Good job Susan.

Though she insists that PANDAS and PANS are distinct from autism, one can only wonder how many other distinct, but yet to be identified, syndromes exist that also present with autism-like symptoms.

Thanks to the efforts of Dr Swedo and the US NIMH (National Institute of Mental Health), these two conditions have been remarkably well investigated, in a very short period of time.  It shows what medical science can achieve when the right people are in charge.  It is odd that such effective clinical attention has not been focused on autism itself.

Here is a very recent presentation given by Dr Swedo, which really covers all the important aspects of both PANS and PANDAS.  For those with a serious interest, have a look though this post and then watch the presentation, to get the most from it.

Dr Susan Swedo (click for IPad users)

Penguins and PANDAS

One of the reasons I was so impressed by how PANDAS has been addressed, as opposed to the much more common autism, is the before and after data.  For example, many people talk about regressive autism, but nobody quantifies from what, to what.  Some children went from a spoken vocabulary of 10 words to 2 words, while others went from 500 words to zero; there is a profound (and relevant) difference.

In the case of PANS and PANDAS we have the before and after artwork from the affected kids. As usual, a picture is worth a thousand words.

I have no great panda pictures, but Monty aged 10 with ASD, brought back his artwork from school last week and pride of place goes to his picture of two penguins.  We were all more than a little taken aback to see it.  Did he really draw this? Unassisted?  It looks much more like the work of his big brother.  Even his assistant was surprised and confirmed that this was the result of his work in the art room for a double lesson.  I never expected to be displaying Monty’s artwork to the world.

Later in this post you will see the before and after PANDAS artwork.

PANDAS and PANS

When I first came across a condition known as PANDAS or PANS, I did not take that much notice; with such a name I assumed it was nonsense.   Researchers should give a serious syndrome a serious name/acronym.

I imagine that with the ever widening of the diagnosis of autism, some people with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) /PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) have been misdiagnosed as autistic and vice versa.

When you look at the symptoms and apparent cause of PANDAS/PANS you may wonder how many other similar conditions exist within the myriad of conditions leading to autism.

The shocking regression in cognitive function (illustrated by children’s drawings further down the page) produced by this condition and the fact that it can be reversed, should really be carefully evaluated in comparison to regressive autism.

It would be appear that all of this is caused by an immune system gone “haywire”.  I wonder how many other immune dysfunctions leading to regression and odd behaviours will be identified in future decades.

The treatment for all these current, and future, conditions are likely to revolve around immunomodulatory therapy, ranging from very cheap steroids (prednisone) to the very expensive, like IVIG (Intravenous immunoglobulin)

If you have a case of regressive autism and the expert says it does not fit the definition of PANDAS/PANS, he might think the case is closed.  Perhaps it should not be.

I suggest that immune over-activation is involved in both groups of autism:-

Early onset autism

In these cases the immune activation is secondary; when it occurs the existing autism just gets much worse.  In some cases these flare-ups are evidently caused by food allergies/intolerance or pollen allergies.

Regressive Autism

I think that in mild cases, some autism may be solely an over-activation of the immune system, without any of the channelopathies and other dysfunctions common in classic autism.  I would put PANS/PANDAS is this category.  I suggest that many other cases of regressive autism could be traced back to allergies and food intolerance, which triggered an immune over-response.

It does seem that many regressions followed a viral infection, and of course, many people believe their regression was triggered by vaccines.  I expect in most cases the vaccine is just a scapegoat, but I very much doubt it is in every case.   

I do not expect there will be any research in this area, because the results would inevitably be misinterpreted by the public.  What a pity.

If we better understood what events could radically disrupt brain function, we might be able to better understand how to treat the resulting neuropsychiatric phenomena, known as regressive autism, PANDAS, PANS and other, yet to be invented, acronyms.

A serious condition with some serious followers

Many people’s knowledge of autism seems to come from sound bites from scientific luminaries like Oprah, Jenny McCarthy and even Donald Trump.  Somewhat remarkably, the PANS doctors are actually a very serious bunch, under the umbrella of the International OCD Foundation (and the NIMH).  This foundation is a serious organisation with a scientific advisory board loaded with people from top US Medical Schools.

Not only have they concisely explained the symptoms, but they have also found therapies; albeit, they do not really know why they work.

The US National Institute of Mental Health has great information.

There is also a very serious parent run organisation called PANDAS Network.

About PANDAS and PANS

In the early 1990s, 50 years after Kanner noticed autism, researchers in the US noticed what they thought was an odd acute-onset type of Obsessive Compulsive Disorder (OCD).  At first it was thought that only streptococcal infections and Scarlet fever triggered this abrupt regression in the child’s behaviour and cognitive performance.  The first name they came up with was PANDAS, (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections); when reports came in that many other infections caused acute regression the name got changed to PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). 

From Research Subgroup to Clinical Syndrome: Modifyingthe PANDAS Criteria to Describe PANS (Pediatric Acute-onset NeuropsychiatricSyndrome)

Symptoms of PANS

It is pretty clear to me that some people diagnosed with regressive autism actually have PANS.  I have from two sources a list of symptoms:-

International OCD Foundation

• Acute sudden onset of OCD
• Challenges with eating, and at the extreme end, anorexia
• Sensory issues such as sensitivity to clothes, sound, and light
• Handwriting noticeably deteriorates
• Urinary frequency or bedwetting
• Small motor skills deteriorate - a craft project from yesterday is now impossible to complete (see images below)
• Tics
• Inattentive, distractible, unable to focus and has difficulties with memory
• Overnight onset of anxiety or panic attacks over things that were no big deal a few days ago, such as thunderstorms or bugs
• Suddenly unable to separate from their caregiver, or to sleep alone
• Screaming for hours on end
• Fear of germs and other more traditional-looking OCD symptoms

US National Institute of Mental Health

• Severe separation anxiety (e.g., child can't leave parent's side or needs to sleep on floor next to parent's bed, etc.)
• Generalized anxiety. which may progress to episodes of panic and a "terror-stricken look"
• Motoric hyperactivity, abnormal movements, and a sense of restlessness
• Sensory abnormalities, including hyper-sensitivity to light or sounds, distortions of visual perceptions, and occasionally, visual or auditory hallucinations
• Concentration difficulties, and loss of academic abilities, particularly in math and visual-spatial areas
• Increased urinary frequency and a new onset of bed-wetting
• Irritability (sometimes with aggression) and emotional liability. Abrupt onset of depression can also occur, with thoughts about suicide.
• Developmental regression, including temper tantrums, "baby talk" and handwriting deterioration (also related to motor symptoms)

In case you want to see what they mean by regression, look at these pictures drawn by a child with PANDAS before and after treatment.  Panel A is before and Panel B is after.   Source International OCD Foundation

  

Treatment

Compared to Autism, a very refreshing approach is taken to treating PANS.

The treatments include:-

·        Treatment with antibiotics to eradicate the infection, if it is still present.

·        Immune-based therapies such as

o   Plasmapheresis

o   intravenous immunoglobulin (IVIG)

o   corticosteroids (such as prednisone).

The good news about the immune therapies is that the treatment gains were maintained long-term, which is exactly what you would want to see. 

Therapeutic plasma exchange and intravenous immunoglobulin for obsessive-compulsive disorder and tic disorders in childhood

Implications for Autism

In spite of what your doctor might tell you, if your child has regressive autism, you would be well advised to check and re-check that he/she does not have PANS or a (yet to be identified) variant thereof. 

The immune-based therapies that ultimately are proved to be successful in PANS are highly likely to be helpful in treating the kind of autism in which the immune system remains in a state of over-activation.  Also the immune-therapies being trialled for autism, if successful, might very likely be helpful alternative therapies for PANS; the therapy I have in mind is TSO.

Classic early-onset autism, as researched in post-mortem studies at the Courchesne lab and elsewhere, is associated with physical brain abnormalities, that should be irreversible.  It would seem that PANS is something entirely different and should be treatable and potentially fully recoverable.

For those of you unaware of Courchesne, here is a short video; he is quoted by many of the leading autism researchers, so I hope he has got things right.

Eric Couchesne &Karen Pierce from University of California at San Diego

Where does regressive autism fit in?  I really doubt that all those people with regressive autism have the physical brain abnormalities of classic autism.  Research has shown that regressive autism has even higher bio-markers of neuroinflammation than classic autism.  Perhaps regressive autism is neuroinflammation, without physical brain abnormalities?

Just as PANS is a mini-spectrum of conditions, pathologically distinct from early onset autism, I suspect that regressive autism is equally pathologically distinct from early onset autism.

Why does it matter?  Well if you want to treat something, it helps to know what you are dealing with.

PANS looks like it has some clever people working on it.  Regressive autism, which may indeed be the most prevalent type, is in need of some similarly clever people.

Conclusion

If regressive autism is your area of interest, I would suggest you look very carefully at PANS/PANDAS and the therapies that have been shown to be effective.

If you have PANS/PANDAS, taking a look at the experimental immunomodulatory therapy used in autism might be very worthwhile, for example the TSO therapy from Coronado Bioscience.

We know that PANS/PANDAS is caused by an ongoing inappropriate immune response, but we do not know how this is mediated into the odd behaviours.  One possible mechanism would be via a weakening of the blood brain barrier (BBB).  

It has been shown that the similar mechanism controls the BBB and the gut immune barrier.   Clever research into Celiac Disease has resulted in the discovery of Zonulin, which is now known to be the only physiological modulator of both these barriers.  Using a type of laboratory test called ELISA, it is now possible to measure Zonulin levels.  If people diagnosed with PANS/PANDAS were shown to have low Zonulin levels, we could assume that the BBB was compromised; this would certainly advance understanding of the condition. It would of course point the way to new therapies.

Cognitive Enhancement, Classic Autism and School

The school year is coming to an end and now we get the results of assessment week, the end of year tests.

Personally I never liked exams, or rather revising for them, but for teachers, assessment is a big part of what they do.  I used to be asked at the start of the school year for a list of benchmarks to measure my son Monty’s progress during the year, since the usual benchmarks were seen not as applicable.  Then we would spend lots of time discussing the list.

Typical kids just follow the standard curriculum and get their standardized progress tests.  If you follow an ABA program, you are constantly measuring performance and you only progress when you master a skill, so it is like continuous assessment.

Monty, aged 10 with ASD, goes to a very small international school.  So there is no special needs teacher, no IEP (individual educational plan), just a nice friendly environment.  This works very well because it means you can build your own educational system, not restricted by any rigid rules.

From the age of about four years old till seven or eight, in effect, Monty’s curriculum was the ABBLS (Assessment of Basic Language and Learning Skills), which is a rather intimidating list of 544 skills from 25 skill areas including language, social interaction, self-help, academic and motor skills that most typically developing children acquire prior to entering kindergarten.  These are very basic skills, that we never had to teach to Ted, Monty’s big brother, but without these skills you really cannot do much. They are the basic skills on which everything else is built.  It includes things like toilet training, stacking coloured blocks in order and, at the intellectual end, involves ultra-basic speech, being about to count and being able to read.

When your child has just a handful of these 544 skills, it appears that you have a mountain to climb; indeed you do.

Fortunately for us, Monty’s then Assistant and best pal, Irena, took on much of this daunting task.  He did become verbal, he did learn to read, he learned how to write and yes, finally, got to grips with numeracy.  (All without any help from drugs)  

This all occurred in parallel with going to "school".  The learning all occurred at home, school was just for practice.

Back then, the end of year report did not really have much importance.

At some point you do hope that school will actually be a place for learning.

It does appear that in many cases of “inclusion”, school is little more than daycare.  Some special schools are brilliant, but even if you live near one, they tend to be hugely expensive and access is highly restricted.

My observation of the limited number of people with autism I am familiar with, is that they tend not to get on with each other; they actually like to be around nice friendly neurotypical kids.  Until you get to secondary school, many kids are nice to special needs kids.  After that, most really are not nice at all, and any idea of going to school for “socialization” becomes nonsense, because the “normal” kids openly seem to ignore, provoke and even hate the kids with HFA/Asperger’s.  Sad, but true.

What is Normal for Kids with Classic Autism?

Most kids with classic autism end up in a special school, or a special needs unit attached to a mainstream school.

One of our former 1:1 assistants was a trainee at the local special school and later became a teacher at another one.  We discussed what went on there and I did visit a few the school a few times.  It was much better than I expected, but was more about keeping the kids calm and under control, than academic advancement.  There were 6 kids per member of staff and the kids had very mixed ability, they were just grouped by age.

I took a look at Treehouse, the leading autism school in London, to see what is in their curriculum.

In the US there are many such schools.  In Europe, Treehouse is quite well known, because it seems to be unique.  One of our former ABA consultants from the US used to work at Treehouse and another former one is on the Board of Governors.  Our current ABA consultant was doing her PhD in Behavioral Science in the US, when the founders of Treehouse visited the leading US autism schools for inspiration many years ago.  A small world indeed.

In fact the Treehouse curriculum bears little resemblance to what goes on in mainstream schools.

I really do not understand what kids with classic autism can achieve in big mainstream schools, even with an assistant.  I just discussed this with Monty’s teacher, how can you “include” a child who has no understanding of what you are teaching the other kids?

Two year ago I agreed with our school to hold Monty back by two years, to be at his academic level, so he is two years older than most of his classmates.  There is no rush to get to secondary/high school.

The question I have had for a long time is whether Monty will be able to learn at school.  To date he has had thousands of hours of 1:1 learning at home, following his home program, which now combines ABA-based learning of things like social skills, conversation etc., with academic work like numeracy and verbal comprehension.

School for Learning?

My plan, when I realized that drug interventions do really cognitively improve autism, was to retain my model of school in the morning and 1:1 learning at home in the afternoon and aim for a time when school could genuinely be for learning.

The good news is that we really do seem to have reached that point.

I had the end of year meeting with Monty’s class teacher and it was almost as if we were discussing a regular kid.  For a start, we were discussing results from standard tests for science, maths and English provided by Cambridge University for international schools following their primary curriculum, so much less scope for the usual “sympathy grading”.

Lots of kids do get extra time in tests, for example if they have dyslexia.  Why not for autism?    The Asperger’s boy in Monty’s brother’s class gets an easier English test and extra time.

In Monty’s case, I did not want extra time; anyway he does not need it.  If he does not understand what to do, extra time is no help.  The question was whether his assistant should give him any “hints” as to what the questions mean, when she knows he really does know the answer. (e.g. when asked verbally by the teacher, so not in writing,  "what is the next factor of 5, after 30")

We had this debate and we agreed; no help of any kind.  That way at least the test tells us something useful.  If the test is based on prompting/help, how big was the prompt?  Better to see the real result and then we can do the “oh, but he really can do that”.

So this year was the first time we have the same tests as the other kids and definitely no help.  This is the result:-

Speaking and Listening        C+

Reading                                 B+

Writing                                   B+

Mathematics                          C+

Science                                  A-

ICT                                         A+

Music                                      A

Art                                           A

Well the results show Monty ended Year 3 ahead of anyone’s expectations, including the teacher.

I think the art teacher was probably being over generous, which is what tends to happen (sympathy grading).  ICT (Information and Communication Technology) is pretty basic at this level, but Monty can do it all.  When it comes to music, Monty is in his element; he can read music, plays his piano and has started to sing.

So the grades seem to be genuine, and he was not at the bottom of the class in any subject. That might not be a common educational benchmark, but I think it is a pretty good one to see if “inclusion” is really working.

As I said to his present teacher, only two years ago he was hitting his then class teacher, assistant and even, on rare occasions, his classmates.  Back then there was very little learning going on at school and not much social interaction either.

Cognitive Enhancement

Along with greatly improved social skills, simple conversation with peers, and even some sporting ability, has come cognitive enhancement.  He still is not “normal”, but it is a remarkable transition nonetheless.

How far he can get following the mainstream curriculum is an open question, but it is far further than anyone could have dreamed of, until he started his drug therapy.

I continue to be amazed, but the gains are almost entirely reversed if he stops taking his drugs.

PAK1 Therapy for Autism – All packed and ready to go!

Following up on recent posts about PAK1, whose presence is required for 70% of cancers to grow and MIT have implicated in several types of autism, I have collected all the data I can find to make trials of PAK1 inhibition in autism.

  

I contacted the leading Japanese researcher who has developed PAK1 therapies for various kinds of tumor, mainly found in neurofibromatosis, but also brain tumors and even epilepsy.  He suggested the dosage of the CAPE-rich propolis from New Zealand and also suggested another drug called Fingolimod/Gilenya.  

This drug is an immunomodulating drug, approved for treating multiple sclerosis, but it is also a PAK1 inhibitor.  It appears to cross the blood brain barrier.  The downside it that Gilenya is hugely expensive, costing around $50,000 a year.

  

While Tonegawa's group at MIT continue to develop their new PAK1 inhibitors, I am concerned that they will end up with a drug costing as much as Gilenya, which will put it out of reach of most people, even if it was effective.

So that brings me back to the trials I propose.

Trial 1   -  BIO 30 Propolis

This is a natural product and as such will appeal to many of this blogs readers.  It needs no prescription from your doctor.  You can buy it over the internet from numerous pharmacies in New Zealand.

The dosage proposed for autism by the Japanese Researcher is 1-2 ml per 10 kg of body weight.

It appears that about 1% of people have an allergy to bee products.  If you are in the 99%, it is reported that even very much larger doses of BIO 30 have no side effects.

Trial 2   -  Ivermectin/Stromectol

This is the cheap drug that is used to treat parasites, but turns out to be a PAK1 inhibitor.  It was also recently shown to kill leukemia cells.

Here I will draw on the autism worm-dosage used by Dr Wu, who prescribes Ivermectin in the belief that the autistic kids’ behaviours are driven by worms.

Dr Yu is combining Ivermectin with other anti-parasite drugs.  I am assuming he “got it right for the wrong reason”, in other words the worms are not the issue, PAK1 is the issue.

Below is the dosage Dr Yu suggests in his autism presentation and one case report where there was a before and after evaluation.  Here the ATEC was used, which is a scale designed by Bernard Rimland and Stephen M.Edelson of the Autism Research Institute (the DAN people).

  

From what I could find, a single dose of Ivermectin (Stromectol) should kill the parasites.  Pets are given the same drug on a regular basis, some preventatively.

In low doses it appears to be very safe, but not in high doses.

Strongyloidiasis is a human parasitic disease caused by the nematode (roundworm).  On the site RXLIST.com the dosage for Strongyloidiasis is:-

The above is for a single dose therapy.  Dr Wu’s worms are either much more resilient, or his much higher and multiple dose therapy is actually working for entirely different reasons.

Trial 3   -   Fingolimod/Gilenya

Given the huge cost of Gilenya, I cannot imagine anybody trying it for autism.  Perhaps Novartis would like to donate some?

We did cover immunomodulatory therapy in earlier posts and it was Dr Chez who likes to write about this subject, in relation to autism.  He has published several trials and a good book.

Perhaps he should do the Gilenya trial?

The Blood Brain Barrier

I did ask the Japanese researcher if CAPE, the anti-PAK1 ingredient of the New Zealand propolis can cross the blood brain barrier, since it is claimed that Ivermectin does not.  He says that BIO30 and Fingolimod/Gilenya cross the BBB.

This brings me to a slight diversion.

Why inflammation leads to a leaky blood-brain barrier: MicroRNA-155

In this research the aim was to confirm the mechanism behind why inflammation causes the blood brain barrier (BBB) to leak.  It has been suggested that the leaky BBB is a key part of autism.  The less leaky it is the better for autism.  Since pro-inflammatory agents like histamine and IL-6 really do make autism worse, it is highly relevant that the research shows that pro-inflammatory agents cause the BBB to let through more of the substances that it is supposed to keep out.

Perhaps the ever-present pro-inflammatory cytokines found in autism, mean that the BBB is always partially compromised.  A drug like Ivermectin might therefore pass more freely across the BBB, than would be expected in other people.

So Ivermectin might remain a cheap alternative to Gilenya.  Dr Yu’s case studies perhaps warrant some more serious attention.

Will it work?

There are good reasons why PAK1 inhibition should have a positive effect.  It is definitely not quack science, it is the serious MIT kind.

In treating Neurofibromatosis NF-1 tumors, it does seem to be more effective at stopping new tumors, rather than shrinking existing ones.   This perhaps should not be surprising, since PAK1 is needed for a tumor to grow and may not be needed for it to live.  At much higher doses, it is reported that existing tumors shrink. So with autism, maybe PAK1 is needed early on, before birth; blocking PAK1 in a 10 year old may be pointless.

The only way to find out for sure if it works in your type of autism is to try it.

If it does not work for Monty, aged 10 with ASD, we cannot say it will not work in somebody’s two year old with a different type of autism.

Also, in Monty, the PAK1 effect might already be being mitigated by his existing drugs.

It would be helpful if there was a clinical trial, but there is not.

Conclusion

Trial 1 is easy to do at home, and if you do it for a month, you would need two bottles of propolis, costing $50 including shipping from New Zealand.

Since the Nobel Laureate from MIT tells us that autism requires PAK1 and that, in mouse models of autism, PAK1 inhibitors are effective treatments, it seems odd nobody has tried it.  In PAK1-driven Neurofibromatosis, there are now many people claiming BIO30 to be effective.  In this condition you can measure/count the tumors, so I guess they should know if it works.

The MIT-inspired drugs, like Tonegawa’s FRAX486 will not be available for many years, and who knows how much they will cost.

In the case of Ivermectin, somebody really should look at the toxicology data and see how safe regular usage would be in humans.  The Leukemia researchers proposed this drug be actively developed, but nothing seems to have happened.  Just for a few days, Trial 2 would not seem to be too risky.

We agree to leave trial 3 to Dr Chez, in Sacramento.

Lies, Damned Lies and Autism Statistics

When used correctly, statistics are extremely useful to diagnose and solve all kinds of problems.  In the wrong hands, meaningless or mixed-up data can be portrayed as impressive statistics, on which other people faithfully rely, to form their opinions.

Clearly there is nothing new in this; the phrase “lies, damned lies and statistics” was popularized by Mark Twain (1835-1910).  The advent of cheap computers and desktop publishing has made it possible for just about anyone to crunch some numbers and make impressive looking tables and graphs.   Along comes the internet and all of a sudden, somebody’s idea can go viral and be quoted back to them later, as a “fact”.

This blog is based mainly on the blue skies research, being carried out at leading universities around the world.  I say “leading universities” because there are now so many universities/institutes, that not all academics are equal.  In the case of autism, it seems that the more someone publishes, the less likely it is to be worth reading.

So we have to filter out the bad science and just focus on the good.

Every now and again, I get redirected to the world of other people searching for autism treatments and then the floodgates open and I am awash in a sea of wonder cures, false promises and lots of statistics; sadly these are almost entirely the type of bogus statistics that Mark Twain referred to.

I do my best not to look at these statistics and endless articles in newspapers, based on them. But some basic statistics do matter, if you want to figure out your type of autism.

Autism affects males more than females

This seems to be agreed everywhere.  It seems that about 80% of cases are male and 20% female.  To me, it seems highly relevant that the 20% of females are skewed towards the more severe end of the spectrum.

In Retts syndrome, almost all cases are female; but this is because the male fetuses do not survive until birth.  So it seems again true that the female brain is better protected than the male brain; you would hope that this would have caught someone’s interest as an avenue of thought that might lead to a therapy, sadly not.

Is the Incidence in Adults lower than in Children?

Since autism is a lifelong disorder, why is it that people always focus on young children?  Where are all the adults?  The sad answer to this is that the adults tend to get forgotten.  As time passes, they are without their vocal parent advocates.

Most adults with autism go undiagnosed- new findings:  Epidemiology of Autism Spectrum Disorders in Adults in the Community in England

 Conclusions: Conducting epidemiologic research on ASD in adults is feasible. The prevalence of ASD in this population is similar to that found in children. The lack of an association with age is consistent with there having been no increase in prevalence and with its causes being temporally constant. Adults with ASD living in the community are socially disadvantaged and tend to be unrecognized

The above paper, from 2011, is based on research among adults in the community.  The researchers found the same incidence of autism, about 1%, in all age groups; it was just that in the older age groups the affected people had never been diagnosed.  They were either tagged as intellectually impaired at one end of the spectrum or “odd loners” at the other end.

If the incidence in adults is the same as in children, then all talk of an autism epidemic would be nonsense.  The US CDC autism incidence statistics would also be nonsense, rather than just a misrepresentation of data.

What percentage of people with autism are non-verbal?

This is a question that worries parents of very young children with autism.  But before looking for statistics, beware what people mean by non-verbal.  You might think this means kids who never talk, never say “Mum/Mom”, or “Dad”; but in fact plenty of parents refer to their child, who is not using 5 word sentences, as being “non-verbal”; they really mean “not as verbal as I’d like”.

Here is some data quoted by the Simons Foundation. 

“Roughly 25 percent of people with autism speak few or no words. A generation ago, that figure was closer to 50 percent. Most researchers agree that the decline is due to the recognition of more people with milder forms of autism, as well as to the advent of early intervention programs, that have helped more children develop language than in the past.”

What percentage of people with autism have mental retardation / intellectual disability?

This question is raised often by people, who feel the autism bandwagon has been hijacked by some of the very articulate people with Asperger’s.

The WHO (World Health Organization) does state that it thinks that 50% of people with autism have MR.  But of course what counts as autism to the WHO will not match what counts as autism according to the US DSM.  The WHO mean a more severe autism.

From the academic world we have this:-

“Autism used to be considered a rare disorder with a population prevalence of about 0.04%, of whom 70–80% had a significant learning disability. More recently, the extended spectrum of autistic disorder gives a population prevalence of at least 0.6%, of whom 70–90% are of normal learning ability. So far, the evidence is that this shift can be explained by changing concepts and diagnostic boundaries as well as by the wider recognition of autistic-spectrum disorders rather than by any real substantial increase (Fombonne, 2003).”

Back to the Research

Now we come back to the focus of this blog, which is to find safe and effective drug treatments that improve autism.

While most of the blue skies research in this blog comes from top universities like Harvard, MIT and Stanford, when it comes to applied research we do drop down a notch of two.

At some point we enter the zone of pseudo-science and then complete quackery.

Where to draw these lines is subjective and it may be that an over-zealous practitioner may be mixing elements of good science, with elements of quackery.

Here again, we are confronted with statistics, this time from the impressively sounding Autism Research Institute (formerly linked to the DAN! doctor people, who then became MAPS doctors).

Parent Ratings 2009

   

At first you might be thinking, WOW!  Just look at all those interventions to try.  Indeed you could spend many years, and much money, working through all these drugs, supplements and diets.

Mixed in the list are some really good ideas (like melatonin), but there are also some things that have been shown in serious clinical trials to be totally ineffective, like secretin and fish oil.

Have all the participants heard of something called the placebo effect?

  

All diets, it seems, regardless of which one, work wonders for 45% to 71% of people. 

As expected, chelation comes out well, but they miss the real point.  Chelating agents are all anti-oxidants; so if you suffer oxidative stress, chelating agents will all help you, but it has nothing to do with “detoxifying” you from heavy metals.

If you would like more from the same source:-

Summary of Dietary, Nutritional, and Medical Treatments for Autism – based on over 150 published research studies

But beware; this is not an expert scientific review of the literature, done by an Ivy League university (any more than my blog is).  It is interesting and it does have some good points, but it is not quite the authoritative resource it makes itself out to be.   The author is at Arizona State University and has a Ph.D. in Materials Engineering, which does not mean he is not right, but it is an odd qualification to be co-leader of the Scientific Advisory Committee of the "Autism Research Institute".

I expect for some of the practitioners using these methods, there are financial incentives, like renting you a home hyperbaric chamber, and others are just well intentioned people trying to help desperate parents; but these are Mark Twain statistics.

I am with Dr Chez, if you have a non-verbal child, steroids may make a lot of sense to try.  The data from ARI would not support this, but of the 204 cases they report on, what where their symptoms? What kind of autism was it? Regressive/Early onset.  What was the objective? Treat SIB, stereotypy, hyperactivity?  Nobody knows.  This is Mickey Mouse medicine and part of the reason mainstream medicine continues to assume autism is untreatable.

My Conclusion

I will continue to focus on the fundamental research from very clever scientists, who you can identify from their educational background and where they now work.  The highly prolific publishers, sometime expert witnesses and people trying to sell you something, I will try to ignore.  

Whatever type of autism you are interested in, if you follow the underlying science, you have a great chance of making progress.