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.
Conclusion
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.
Hi Peter and community,
ReplyDeleteFirst, 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:
http://www.nature.com/mp/journal/vaop/ncurrent/full/mp2017156a.html?foxtrotcallback=true
The second is called "R-Baclofen Reverses Cognitive Deficits and Improves Social Interactions in Two Lines of 16p11.2 Deletion Mice"
http://www.nature.com/npp/journal/vaop/naam/abs/npp2017236a.html
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
https://www.ncbi.nlm.nih.gov/pubmed/28986277
Have a great night everyone!
AJ
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.
DeleteGABAb 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.
Peter or anyone,
DeleteI 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,
D&G
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.
DeleteThere 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).
Hi AJ how do you mask the bitter taste of agmatine powder?
Deletealso does it have to be Ceylon cinnamon specifically?
DeleteCinnamon 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.
DeleteThis is why you should only use "true cinnamon", also known as Ceylon cinnamon.
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.
DeleteAs 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!
AJ
THANK YOU both for your willingness to help with the most basic of questions.
Delete