Tuesday, 10 October 2017

Back to School (again)

Another September passes and another school year is underway. For Monty, aged 14 with ASD, he moved up to the secondary/high school building with his 12 year old classmates.  He has attended the same small international school for ten years.
The experience autism parents have with schools varies widely, both from country to country and within the same country.
This blog is mainly read by people in North America, where autism is generally much better treated than in the rest of the world.  Publicly funded early intervention in the US is available from birth to three; it actually finishes before most people in the rest of the world even get a diagnosis.
While many people complain about the services they receive, it is ultimately up to the parents to make the best of it, using whatever means they have at their disposal.  The results appear to be extremely varied.
Our method was to go part time to school to the age of twelve, leaving plenty of time to have a home-based learning program.  Up to the age of eight almost all learning actually took place at home; school was more for “socialization”.  Then there was a big behavioral regression for almost a year; school continued but skills were lost. Then I started my Polypill interventions and in that September agreed Monty move back two years at school.
For the last five years Monty has stayed with the same NT peer group who are two years his junior.  Much to everyone’s surprise, he participates in the same assessments as his classmates, something inconceivable up to the age of eight. Moreover he does not get the lowest grades in class, which would have been the case up to the age of 8 had the teacher used the same tests as the rest of the class.
At some point, I assume he will not be able to move forward, but that point has not yet come.  This year we have already had tests in all subjects and the average grade has been “B”, which has surprised everyone. If you treat classic autism you will still have autism, but normal learning becomes possible. 

Progress to date

There is much in previous posts about how people with classic autism start to acquire skills long after their peers, and that even then their rate of acquisition of new skills is much slower. The end result is that the learning gap between people with autism and their NT peers starts out wide and then grows. Many people with classic autism leave high school with a skill level ten years lower.

NT kids start acquiring skills from an earlier age and at a faster rate than those with Classic autism. Adjust for this and “catch up”.

The idea of this blog is to use science to close the gap as much as possible, so rather than being left totally behind, aim to leave school with much more than just a very minimal education.
People with Asperger’s clearly do not have these problems and most people diagnosed today with autism have this kind of mild autism.   
One good thing about not being in a selective school is that you have a wide range of intelligence and indeed motivation among the class. If you have a selective school with hard working intelligent kids, you clearly could not include someone with classic autism, but you should be able to have people with Asperger’s.  They were there long before Asperger’s was a diagnosis. 
As I have pointed out in previous back-to-school posts, there may well come a September when moving forward a year may not happen, but for the last five years it has been possible.
The idea of explaining concepts such as elements, compounds, atoms and molecules really would have seemed absurd, just a few years ago. I may even be putting up a poster of the periodic table in Monty’s room.  It is of course just a very basic understanding; so H2O is water where H is hydrogen, O is oxygen.  It was not so long ago that it was proving impossible to teach the concept of bigger and smaller with single digit numbers or the meaning of basic prepositions.
The biggest issue currently involves history, where rather than just learning what happened and when, it is already more about your opinions about why something happened. So the problem is more one of language and I would myself struggle to understand and explain the causes of World War 1 in my second language. People with classic autism really do not have a mother tongue, their first language is silence and so language will remain limited and be matter of fact and literal.
So we will focus on numeracy/math, literacy (English), a second language, science, geography (which is surprisingly teachable) and make something of history. The non-academic subjects, music and physical education/PE work very well and autism is not a limiting factor.  
Because the class is of mixed abilities and perhaps more importantly varying motivations, in spite of his obvious disadvantages, Monty does not come bottom. I think if you come bottom in every subject, then inclusion may not be appropriate.
There is a view that you should give different tasks and simpler assessments to special needs kids included in mainstream classrooms. This is like the old village school where one teacher is teaching different age groups at the same time. This does put a burden on the class teacher and you can see why it does not happen, unless the teacher is very motivated and well supported. I do not see how classes in public schools with 30 kids and two of those have special needs and assistants can function well. The risk is you end up failing the 28 NT kids.
The key to successful inclusion of someone with classic autism seems to be pharmacologically raising their cognitive function (IQ) as much possible, having good one to one classroom assistants and having a smaller class size.
These days most people diagnosed with autism are more likely to have Asperger’s, so they did not have a speech delay and all the biological consequences of that. People with Asperger’s face very different issues at school. In theory these issues are much easier to deal with, but because they appear minor they may get ignored. Issues include sensory gating, sensory overload and bullying; none of which affect my son at school.  Selective schools would seem a good choice for those with Asperger’s, since they will have more in common with at least some of those clever hard working types.  I continue to be surprised that special schools for Asperger’s exist in some countries.  They may be a refuge from bullying, but cannot be a good preparation for future life and employment.
Special schools for more severe autism vary widely.  In some countries there are some very good ones, but this kind of provision is extremely expensive and so is often not available.
I think if you are behaviourally and academically “includable”, mainstreaming is the ideal option. If inclusion is just a class within a class, with the assistant teaching the child in a corner of the mainstream classroom, then it is not going to be a success.  
You have to be behaviourally and academically includable.  If you are just behaviourally includable but understand nothing from the teacher, there is not much point being there.  If you are not behaviourally includable it is not fair on all the NT kids.
In kindergarten and the next couple of years the fact someone has autism does not stand out so much, because many kids behave badly. So you have till the age of 7 to get things in as good a shape as you can.
Treating autism pharmacologically makes learners much more includable and hopefully one day will be available on demand. It can reduce negative behaviors like aggression and anxiety, while raising cognitive functioning.   

The US system is based on the idea of making a huge effort before the age of four in the hope that things will get very much better and fast.  There is indeed evidence that in about 10-15% of people with autism, by the age of five things have pretty much fixed themselves, regardless of intervention.
Few people will be able to keep up the pace of this early intervention for the next ten or more years. It is too expensive and just too labour intensive. In the US there are some publicly funded special schools that do have this level of provision, but not in most countries.
Having been very focused on behavioral intervention until my son was eight, it is clear that the optimal solution is to start pharmacological intervention in parallel, meaning from diagnosis.  Some people in the UK wait for years just for a diagnosis, which is absurd. I think an astute observer can diagnose more severe autism at 18 months of age, with 90% accuracy.  In some countries they wait till five years old before diagnosing autism, preferring to use words like apraxia instead. Outside the US there is no rush to diagnose autism, because there are no services.  If there are no services, nor interventions, there is little point having a diagnosis, it is just a label.
Pharmacological intervention is going to be rather hit and miss, but this is also true in many other medical conditions (dementia, multiple sclerosis, epilepsy, depression …).  For the 85% that are not going to magically recover, pharmacological intervention combined with 1:1 teaching/support is the way to go.  It is the 1:1 part that is expensive, but for many people that is already available in many countries, meaning a teaching assistant in a mainstream classroom.  All the 1:1 therapy is much more effective, when you improve some of biological dysfunctions.
Why more people cannot have a one or two year “catch-up” adjustment in mainstream school is not clear to me. It is a very simple strategy that does not cost anything, since in many countries people with special needs get free education beyond 18 years of age. There is a rigid belief that you must educate a 9 year old with other 9 year olds, rather than matching people by their stage of cognitive development. In my world no NT kid would leave primary/junior school until he had mastered basic numeracy and literacy, which often is not the case, even in developed countries.


  1. Hi Peter and community,

    First, I really appreciated this article Peter, and I completely see my family's challenge in what you wrote. My #1 goal is to find interventions that will allow my 4 year old girl to continue to advance in her schooling at a pace similar to her peers, knowing that they are ahead in many areas (but not all).

    For this reason, I actually started Ceylon cinnamon at 1/4 teaspoon X 2 added to her daily "stack" about 3 days ago. Thanks for brining this up Peter, of the 3 areas I am trying to address (Cognitive, Speech, and Socialization), Cognitive is to me the most important. I'll keep everyone posted - I may raise the dose in a month or so if I see no impact at this dose)

    I've been so busy the last few weeks, I haven't had the chance to post, but Peter you had asked me if we had added Agmatine some time ago, and we had done so. My daughter keeps improving, albeit a steady pace, so it's hard to tell if Agmatine made any impact.

    In the meantime, we've done a few tests, waiting for those results, and are really hoping to get funding for genetic analysis.

    I also wanted to post a few interesting findings that add to what we know. The first is about Schizophrenia, but it's extremely interesting as for the first time, researchers have found a significant connection to the BBB, and there is research out there that ASD kids have altered BBB:

    The second is called "R-Baclofen Reverses Cognitive Deficits and Improves Social Interactions in Two Lines of 16p11.2 Deletion Mice"

    And finally, those researches at King Saud University keep giving us interesting info, this time about upregulation of CXC and CC Chemokine Receptors on CD4+ T cells

    Have a great night everyone!


    1. AJ, I am glad your daughter is developing so well. Interventions like cinnamon/sodium benzoate do not seem to have any downside; this likely applies to agmatine as well.

      GABAb agonists like (R-) baclofen and Pantogam really do seem to benefit many people. Some with mild autism and some with severe autism. Your paper is from the MIT people who did try once to commercialize arbaclofen, but that effort failed after 10s of millions of dollars were spent. Baclofen and Pantogam already exist as drugs.

    2. Peter or anyone,

      I need evidence of Baclofen studied on children with Autism or at least with anxiety. I only come across Arbaclofen. Our doc will only prescribe Baclofen if provided with evidence of its use in children with Autism/Aspergers. Perhaps some in the community have access to such.

      Does such research exist?

      Many thanks,

    3. D&G, there are comments on this blog from a UK pediatrican who uses baclofen in Asperger's but was wanting to find research evidence to support its continued use. There was none specific to baclofen.

      There is now much more research on R-baclofen, in various types of autism.

      Baclofen that your doctor can prescribe is a mixture of R-Baclofen (the right handed version/enantiomer) and L-baclofen (the left handed version/enantiomer).

      This is just like with the antihistamine cetirizine, nowadays you can buy just the left handed version levoceterizine.

      If your doctor understands enantiomers he/she should be willing to accept evidence from the potent half of baclofen, which is R-baclofen (also called Arbaclofen).

    4. Hi AJ how do you mask the bitter taste of agmatine powder?

    5. also does it have to be Ceylon cinnamon specifically?

    6. Cinnamon is made from the bark of certain types of tree. Cheaper cinnamon, like Cinnamon Cassia, contains a toxic substance called coumarin. The content of coumarin in bakery products etc is regulated for safety reasons. If you are going to eat 3g a day of cinnamon you need to avoid the types that contain coumarin.

      This is why you should only use "true cinnamon", also known as Ceylon cinnamon.

    7. Hi Anon, I mix all my supplements in Grape Juice, to try to mask the less than pleasant flavors. There are a few supplements I would like to try, like Berberine, Naringin, and TUDCA, but which I have not even attempted as they are so incredibly bitter. My daughter is fine with Agmatine in grape juice.

      As far as Cinnamon, Peter has provided the answer, and I would also add that from a flavor standpoint, Ceylon is so mild, that it is easy to give in larger doses (like 1/4 teaspoon X 2) as I'm giving now.

      Definitely only use Ceylon, for the reason Peter has given.

      No improvement seen yet, but its only been about a week.

      Best of luck!


    8. THANK YOU both for your willingness to help with the most basic of questions.


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