End of School Year

As another school year comes to an end it was time for Monty, aged 11 with ASD,’s end of year grades and the parent teacher meeting.  Monty attends a small mainstream international school with his own assistant.

This year is particularly interesting because we have the same class teacher, Miss B, this year that we had three years ago (prior to starting to develop Monty’s autism Polypill).  So if anyone can judge the impact, it should be her.

In the English system Year 4, is where you find 8-9 year old typical kids and equates to 3^rd grade in the US system.  Monty just finished Year 4.

After completing Year 3 first time round with Miss B three years ago, with a traumatic several months of aggression and cognitive and behavioral regression, we put Monty to start Year 2 again.  At the end of the first term in Year 2 (second time around) he started Bumetanide.

Year 1

Year 2

Year 3            Miss B

Year 2            (repeated)

Year 3            (repeated)

Year 4            Miss B again (current year now ending)

Year 5            Next school year starting Sep 2015

First time around with Miss B, Monty could not really follow any instruction from her and he was entirely dependent on his 1:1 assistant.  

At home, in the afternoons and holidays, he had learned to speak, read and write using ABA.  At school he was assessed on simple tasks like being able to change into his indoor shoes independently, or with prompting.  Academic assessment was all customized for him; no attempt was made to use the same assessments as his classmates.  Assessment was extremely basic, like adding one to a single figure number.

Some children are diagnosed very young with autism and by five years old things have changed so much that they have lost their diagnosis.  Monty is not one of those.  He was diagnosed at three and a half and continued to get more autistic.  Using PECS and ABA he gained basic speech.  With 40 hours a week of 1:1 assistance he learned to read and write, but we did not even try and teach numeracy.

We were following the standard trajectory of classic autism; no learning followed by (very) slow learning.

This distorted learning trajectory is one reason why I feel that Asperger's should remain entirely separate from classic autism; calling them both "autism" does justice to neither.  In Asperger's there is no language delay and no impaired cognitive function, resulting in quite different people, with very different issues.  I am beginning to feel that when you treat classic autism, as far as you can, the result will be something not dissimilar to Asperger's. What happens if you treat Asperger's?

After initiating pharmacological therapy, we now have had nearly three years of skill acquisition at a rate similar to a typical child, of average IQ.

So Monty finished Years 2, 3 and 4, had the same assessment as the NT classmates and is not at the bottom of the class of 12 kids, in any subject.  Monty is certainly not a “straight-As” student, like his big brother is; he is now more of a C student with some Bs.  But as I told his teacher Miss B, the great achievement is that we are even discussing the results of standard assessments at all.

Pleiotropic effects?

Sometimes drugs seem to have broader beneficial effects than intended, these get called pleiotropic effects.

It looks very likely that one or more elements in Monty’s Polypill have some pleiotropic effects, or some synergistic effects.  

There is a study showing the effect of ten months of Bumetanide treatment.

Improving emotional face perception in autism with diuretic bumetanide: A proof-of-concept behavioral and functional brain imaging pilot study

My feeling after 30 months of Bumetanide treatment is that it provides a critical step-change in cognitive function.  Following this one-time gain, things seemed to progress faster cognitively only when other elements were added.

The following papers on pleiotropic effects of drugs in the PolyPill do not refer to autism, but are interesting.eiotropic Effects

PLof

Pleiotropic effects of calcium channel blockers

PLEIOTROPIC EFFECTS OF STATINS

N-acetyl-cysteine pleiotropic effects

  

Future progress

As I told the teacher,Miss B, a good plan seems to be to just keep following the regular kids and keep going until the end of year assessment might put Monty at the bottom of the class.  Should that happen, we can just repeat that year again.

This is not the advice you will likely find anywhere else regarding educating a boy with classic autism in a mainstream classroom.  Indeed it is pretty clear that in mainstream schools “inclusion” just means a class within a class; so the child with autism and his assistant are doing one activity, while the class teacher and the other kids do something entirely different.

Back to School and “Learning Years”

School for Monty, aged 11 with ASD, did start a couple of weeks ago but then a nasty virus swept through school, sending him back home again.

To recap, Monty attends a very small mainstream international school with his own assistant. The school uses the English system. To get the equivalent US grade, you subtract one from the English year.  He comes home after lunch and then has one-to-one, ABA-inspired, home schooling for another three hours.    In school holidays he has eight hours a day of ABA-inspired one-to-one home program.  This has been going on for seven years so far.

Following all these years of ABA, schooling at home and 20 months of his PolyPill he is now able to learn at school, follow the rules and interact with staff and other children.  He now initiates play with the other kids.

When his assistant leaves at 2pm, the teachers now want him to stay by himself for afternoon classes like art and physical education.  This is quite a change, until quite recently the teachers did not want him there if his assistant was unable to be at school, or got delayed in traffic.

The clever move turned out to be holding him back two years, a while back; so that he is now in a group of 8 year olds.  This makes sense for many reasons; most importantly, he is at the academic level of classmates.  Since he did not speak a word until he was three and half years old and for most of 2012 he was raging and regressing, it also makes sense.  In “learning years” he is, at best, a seven year old.

Until a couple of years ago, all learning (speaking, reading, writing, numeracy) was acquired at home; school was just for practice and socialization.

Socialization is the main point of inclusion, but even that needs a lot of managing.  Socialization without any learning does not seem a clever choice.

The Wider World

In some countries there is a very developed system of Special Education, with the US being far ahead, partly because it diagnoses so many kids to have a special need.

Most other countries now seem to have adopted elements of what is seen as best practice, like having an IEP (Individual Educational Plan) and some interpretation of “inclusion”.  Unless the IEP is well thought out, it is just another stack of paper.  If inclusion is not accompanied by plenty of training and supervision, the results will not be good.

Given the resources for 1:1 education, much can be achieved, but this is rarely going to be possible; only very expensive private schools or home schooling can provide this.

In a large inclusive classroom, I do not see how children with classic autism can make any academic progress, except with the help of a very good 1:1 assistant (but when is there 1:1 time in a noisy inclusive classroom?).  In many inclusive schools, the teachers have had no special training, and quite often, neither has the 1:1 assistant.

Parents often make great efforts to avoid their child going to special education, due to the perceived stigma.  Readers from the US may find this odd, but in most of the world autism remains hidden.  People turn down free intensive early years support, preferring the child to be with typical children.

I see plenty of parents writing commenting things like, “I wish the school would teach my child to read and write”.  Without individual tuition at school and/or home it is easy to see how such kids will not get far at all.

From what appears in the media, most people are not happy with schooling for classic autism.  If you want better, you will have to take on much of the job yourself.

There are plenty of good ideas you can use.

Extended School Year and Duration

In some countries kids with autism have an extended school year, i.e. very short holidays.  This seems a very good idea for both the kids and the parents.  It means that the learning year is more like 11 months long, rather than the typical 9 months.

In most developed countries school finishes when you are 18.  In the US special education in high school continues to 22.  That is quite a big difference, which brings me on to the next point.

Final Academic Level with Classic Autism

I was interested to see what range of academic levels is typical for people with classic autism to achieve when they finish their school education.  It is very hard to find this anywhere and I only found one range, which was between 2^nd grade and 6^th grade, on leaving “high school”, using the US system.  This seems plausible.

It is clear that many special schools are really focused on living skills rather than academics. 

If you manage to progress academically all the way through school, then it must have been a case of High Functioning Autism or Asperger’s. 

What Monty did

Monty, now aged 11 with ASD, started out un-able to learn in the conventional sense, like most kids with classic autism.

Using an ABA-inspired home program, he did gradually start to learn.  He went to school for socialization and fun.

We have no external agencies, Education Authorities etc. involved in Monty’s education.  We have a nice, responsive, mainstream private school, which has always tried to help, although they have no special needs resources or knowledge.  The class sizes are tiny; this year there are 13 in the group. 

From the age of about 10, things changed sufficiently for school to be about learning.  By that stage he had acquired the academic skills of a typical 7-8 year old, based almost entirely on his supplemental 1:1 tuition.

The home program continues and will be needed for years to come.

  

Monty has three school years left in Primary before moving on to Secondary/High School.  Primary school is a nice place to be if you have ASD, the same may not be true for Secondary School. 


In the UK system, Secondary school starts when you are 11 years old.  In other countries it starts much later; where we live Secondary school is normally from 14 to 18 years old.

Summertime is no longer developmentally lost, due to the odd effect of allergy and some key neurological autism issues have been identified and treated; more are likely to follow.

I am optimistic that we will see three years of uninterrupted development, twelve months a year.  Every calendar year should be a “learning year”.

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.