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Tuesday, 31 March 2015

Reassessing Cognitive Impairment in Autism – Improving the Prognosis




When Monty, now aged 11 with ASD, was diagnosed aged three and a half we were told that he had autism and “this may be indicative of the presence of an associated learning disability, but it is impossible at this stage to give a prognosis as to his future difficulties” and also “he is not yet able to take part in formal assessments of his cognitive ability. When his skills and ability to share interests with adults and to follow direction/instruction develop, it will be possible to formally assess his cognitive skills using standard measures.”

Off the record, we were also told that he might develop epilepsy.

We never measured his IQ and he has never had a seizure.

With hindsight, it is interesting what they said about it being pointless to try and measure his IQ.  Apparently it is not uncommon to do just that.


Improving Cognitive Function

This post is about cognitive improvement, so do not be put off by the introduction to MR/ID.  Several regular readers who are using some of the suggested drugs discussed in this blog are now also commenting on the resulting cognitive improvement, so it really is not just a case of N=1.

Nobody here is measuring the change in their child’s IQ, so these remain anecdotes.


To start on a happy note

Monty, aged 11 and diagnosed with classic autism, has been learning the piano for three years.  At the start he was not very cooperative with his teacher and after a few months the lessons stopped.  

27 months ago he started on bumetanide, the first part of his autism Polypill.  After years of ABA, slow but solid development appeared to have reached a plateau; but then he began to accelerate.  We restarted piano lessons again, with a new teacher.  Having added Atorvastatin, from the very next day he began to practice daily, playing without his teacher.  He has had two 40 minutes lessons most weeks since.  Two years later this is the result:-


video

 Click the image to play, turn up the volume (video may not work on Apples)

  
  
So there is no doubt that Monty got smarter.  When I heard him playing this piece, I thought it was the piano teacher, but she was recording Monty on her phone.

Big brother also did not believe little brother was playing this, until he saw the full video (with moving fingers).

Reading, writing, and numeracy have all improved and are now at a similar level to those of many of his NT classmates (who are 2 to 3 years younger than him).  Rather unexpectedly, he was recently the only one in class who understood how to multiply fractions; this was never taught at home.   

Prior to starting the Polypill drugs, I had spent three years, on and off, trying to teach Monty prepositions, without much progress.  This is almost always a difficult area for those with classic autism.  In the end he figured it all out by himself, with a little help from Bumetanide.

Recently yet another cognitive step forward seems to have have occurred, which appears to be the result of PAK 1 inhibiting propolis and/or the tangeretin flavonoid.  Monty's assistant in school was today proudly showing me his latest school test result, "73% and it was all his own work".  She thinks it is the tangeretin.

In earlier years school was for “socialization”, not learning.  This is fine as long as the learning takes place at home, otherwise inclusion means no education.



Cognitive Function, IQ, MR/ID

I prefer to talk about cognitive function, and its improvement or enhancement.  Drugs that achieve this are usually called Nootropic.

I think that many people remain skeptical about Nootropics.

Psychiatrists, Pediatricians and Psychologists prefer to think about IQ, MR/ID.

People affected do not like the old term of Mental Retardation (MR) and so quite recently, in English speaking countries, it was replaced by the term Intellectual Disability (ID).  The World Health Organization still use the old term, as does almost everybody else.

Somebody is diagnosed with MR or ID if their IQ is below 70.  In a typical group of 100 people, two people (2.2%) would be expected to fall into that category.  The average IQ (mean, median and mode) is 100.




In theory as you progress through childhood and into adulthood your IQ is expected to stay the same.  So the tests used adjust for your age.  There are special non-verbal tests.

If you acquire new skills at a lower rate than typical, your IQ would appear to fall over time.  This does not mean that you have lost skills just that you are acquiring new skills at a slower rate than your peers.  This explains why parents of kids with ASD, who do have their IQ tested, often find their score goes down as they get older.


Measuring IQ in Autism

I think it is generally a bad idea to measure IQ in people with autism.

There is anecdotal evidence to show that the results are often not valid, because the test is based on the assumption of compliance and that the child is actually doing his/her best.  Not surprisingly, the experts have found that children undergoing an ABA program improve their measured IQ by 10s.  After a few months of ABA the previously unfocused child has been trained to sit down, sit still, pay attention and work.  Of course they then get a higher score, but are they now more intelligent?

One reason put forward for not measuring IQ, is that while people will go a long way to help a child with autism to learn, once you add a diagnosis of MR/ID, some people will try much less hard.

Nonetheless people do measure IQ in autism and it is worth a quick look at what is known.

Some people are saying that 50% of people with autism have MR/ID.  I always found that odd, and what exactly do they mean by autism?

Using the previous US DSM definitions, Asperger’s was a part of the autistic spectrum but had the precondition that there was no MR/ID and no language delay.  Then you had the middle group with the odd name of PDD-NOS    (Pervasive Developmental Disorder Not Otherwise Specified).  This groups the people with more issues than Asperger’s, but without many of the problems experienced by those diagnosed with Autism.

So in the old US system there were 3 main categories, plus 2 minor ones:-

1.     Asperger’s
2.     PDD-NOS
3.     Autism
4.     Retts Syndrome
5.     Childhood Disintegrative Disorder (CDD)

Very few people have Retts or CDD.

The Autistic Spectrum was, in effect, also called PDD (Pervasive Developmental Disorder) just to confuse people a little more.  PDD = ASD = the above five conditions.

The latest version DSM5 went several steps backwards.  Everybody affected in the US is now just ASD, all five categories were merged.  

Hopefully nobody else in the world will pay any attention.

Unfortunately being Psychiatrists, they again have to muddy the water and all the future data/statistics.  A portion of people formerly diagnosed with PDD-NOS, will now get diagnosed with SCD (Social Communication Disorder) which is set outside the new definition of ASD.

“Congratulations you are off the Spectrum” 


I really do wonder about the IQ of these Psychiatrists.


Reliable Data on ASD

I do like to have some reliable data.  The quality of data in the field of autism is usually very poor and incompatible (i.e. rubbish).  Most data, like that from the CDC in the US, is unreliable.  It seems that richer “Ethnic European” parents push to get an autism diagnosis much harder than poorer “Hispanic” and “African American” parents.  Perhaps hard to believe as an outsider, but in the US poverty equals low diagnosis of autism and wealth equals high diagnosis.  Incidence does not equal diagnosis.  CDC data is just who got diagnosed; in the US many poorer people do not get diagnosed.  If you live in a country with free socialized healthcare, as in Europe, this will look strange.

I have chosen a highly regarded, and very highly cited, Canadian source for my data.

Éric Fombonne  is a French psychiatrist and epidemiologist based at McGill University in Montreal.  He co-authored a pair of studies in 2001 and 2005 with Suniti Chakrabarti, that examined the entire preschool and early school population of one large area of the United Kingdom (falling under the South Staffordshire Health Authority).

There is a stable population of indigenous British people with a small (1.4%), mostly Asian, immigrant population. The total population living in the area was 320 000 people.



The studies are:-







All children from 2.5 to 6.5 years old were screened, a total of 15,500 children in total 97 children (79.4% male)  were found to have a PDD (i.e. be somewhere on the autistic spectrum)

Of the 97 children, 29 (29.9%) had no functional use of language defined as the daily spontaneous use of 3-word phrases. The proportion of children without functional language was however strongly associated with diagnostic subtype (AD, 69.2%; Asperger syndrome, 0%; PDD-NOS, 16.1%).

Of the 97 children, 37 children underwent Merrill-Palmer testing and 56, Wechsler Preschool and Primary Scale of Intelligence testing. Four children could not be tested for practical reasons. Overall, 24 (25.8%) of 93 children had some degree of mental retardation. The 2 children with childhood disintegrative disorder and Retts syndrome scored in the moderate range of mental retardation.








Side-note about shoddy research

To show those of you still unconvinced that published, and moderately highly cited, autism research can be rubbish, the authoritative sounding paper written by a Professor of Psychology below also reviewed the above research data.


The author commented:-

Recent epidemiological surveys have shown that the prevalence rates of MR in children with autism is between 40% and 55% (e.g., Chakrabarti & Fombonne, 2001), much lower than the typical rates cited in the literature.”

The Chakrabarti & Fombonne 2001 paper clearly shows 69% of people with the narrow diagnosis of “autism” had MR whereas 25.8% of those with the broader diagnosis of ASD/PDD.

More than 100 other papers now cite the author’s incorrect readings of the original research.

I do not know what IQ you need to have to be a Professor of Psychology, but it clearly needs to be increased.



Back to the Fombonne studies

Four years later they repeated the same study on the next cohort of English school children:-

The rate of mental retardation in the autistic disorder group was 66.7%, compared to 12.0% in the group with pervasive developmental disorder not otherwise specified and 0.0% in the Asperger's disorder group


So I will take the average of the two studies

            Autism                       68% with MR/ID
            PD-NOS                     10% with MR/ID
            Asperger’s                    0% with MR/ID


What surprised me was the breakdown of the children by PDD.  Most kids (>50%) were PD-NOS, I did not expect that.

  Autism                        31%
            PD-NOS                     52%
            Asperger’s                  16%
            CDD/Retts                    1%

So the percentage all PDD (i.e. all ASD) with MR was 27%



Combining this as a graphic:-  






  

So now when people tell me that 50% of kids with autism have MR/ID, at least I know the likely reality.  It is either more, or less, depending on what you mean by “autism”; but is not 50%.



Conclusion

Most people think you cannot change your IQ.

The reality is that testing a young child with severer ASD is highly likely to underestimate their IQ, since the test assumes that the child will comply with the tester.  Most young children with autism do not comply with their parents, let alone an IQ tester.

ABA will improve compliance and hence improve an IQ test result.

Long term ABA use will, in many cases, gradually improve the child’s ability to learn and hence boost cognitive function and by implication an IQ test result.  You will find references to people saying ABA raised their kids IQ score by one or two dozen.

Correcting the biological dysfunctions underlying autism undermines the whole shaky DSM system.

PDD-NOS is, in effect, milder classic autism without the stereotypy .
Take some N-acetyl cysteine pills, you lower oxidative stress and you can stop the stereotypy.  So then your “expert” diagnosis would change from classic autism to PDD-NOS?

Take a few more pills and instead being in the 68%, with an IQ of less than 70, you can move up to 85 and, who knows, maybe much higher.

But it has to be said that the concept of IQ is something many people think they understand.

If one day, I were to make a clinical trial of my autism Polypill, I would definitely include a before and after measurement of IQ, alongside all the usual behavioral measures that most people would not understand.

And then …

“Wonder drug rescues people with autism from mental retardation”

In the meantime, we can continue correcting the remaining biological dysfunctions underlying autism and thus improving cognitive function.






Note the rocket, for those with classic autism doing just this and changing their prognosis.








15 comments:

  1. Hi Peter,

    Have you officially added propolis to your daily polypill formula? Is it the Bio30 brand? What impact have you observed?

    ReplyDelete
    Replies
    1. We are using the Bio30 on a daily basis, but I would not yet go as far as to say it is part of the Polypill formula.

      The only effect I would attribute to this propolis is improved cognition, but it would be good to get some confirmation from others. At the moment it is out of stock, which does not help.

      Delete
    2. what is the daily dosage of bio30 to start off with Peter?
      Regards,
      NT

      Delete
  2. Bravo, maestro! BRAVOOOOO!

    ReplyDelete
  3. Which brand is the Tangeretin? I did find Sytrinol in North America which has it plus another flavanoid (a few human studies on this specific formulation for managing cholesterol). Tangeretin is also a potent P2Y2 receptor antagonist like Suramin.

    K

    ReplyDelete
    Replies
    1. I am using Sytrinol 150 mg twice a day. I open the capsule, and squeeze out the contents onto a small piece of toast. Bioavailability is higher if you can swallow the capsule.

      I refer somewhere in my blog to P2Y2, Suramin and Tangeretin. Tangeretin has many interesting properties, not least its effect on PPAR gamma.

      Unlike the BIO 30 propolis, it is standardized, fairly cheap and widely available.

      Delete
    2. Thanks. I have ordered the BIO30 capsule to try as well.

      K

      Delete

  4. hi peter, why use both sytrinol and atrovastation.Both reduce cholesterol and reduce inflammation right? (thank you for answering all the questions and many thanks for all the information you provide)

    ReplyDelete
    Replies
    1. Most substances have multiple effects, for example ibuprofen used for pain relief, will very likely also lower your cholesterol.
      Syrtrinol contains natural flavonoids known to be PPAR gamma agonists. It is this effect I want; the man made drugs that achieve this also help some autism, but do other (bad) things as well, that cause side effects. If someone responds well to the ketogenic diet (KD), I think this increases the chances they will respond to sytrinol. It has been shown that the KD affects PPAR gamma.
      Atorvastatin lowers cholesterol but in addition affects the expression of specific genes that are associated with some autism and indeed some MR/ID. Some people with autism will benefit from statins, while others will not.

      Delete
  5. Hi Peter
    As you might remember, I was discussing my son's PTEN mutation with you a couple of months ago and you recommended to try statins. I was able to get a box of Lipitor 10 mg to give it a try. My questions are: do you crush the pills? Should I start with half the dose?
    What should I look for in terms of response from my son to conclude If it's helpful or not. Cognition gains, reduce stimming or just see if I see any changes?
    Thanks again for your guidance!
    Laura

    ReplyDelete
    Replies
    1. You can crush it and starting at half a tablet is a good idea. If he is a responder the effect is within a day or two. For my son the change relates to initiative and independence. So he started to do things by himself which before he had to be promted to do, so this could be seen as a gain in cognitive function. It is very noticeable, at least in our case.

      Delete
  6. Hi Peter,
    Our child has normal cholesterol level. Statin will have adverse effect? And sytrinol? Thank you.

    ReplyDelete
    Replies
    1. The good effect is not related to lowering cholesterol. I think as long as you do not start will very low cholesterol, you should be fine with a low dose of statin for a trial. You will see within a couple of days if it is effective and then if it works you can check cholesterol again.

      Delete
  7. Are you still using sytrinol?

    ReplyDelete
    Replies
    1. No, because it seems to "stop working", but for some people the positive effect is maintained. It is worth trialing it.

      Delete

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