Just What is Autism?

We have learnt that autism is just a description of symptoms, it is not a biological diagnosis.  A biological diagnosis is what you actually need.

I continue to be amazed how loosely this autism description is now applied, to the point that it can become rather trivial.

We have a new assistant working with my son, Monty, at school after lunch.  She has been doing a degree in looking after people with autism, for the last four years, and has done plenty of work experience in special schools. So I suppose she should know what autism means in 2016.  She was really surprised how much Monty can do for himself, how good his handwriting is and what he can do academically at school; she had expected less.  So for her “autism” generally means more severe than my son.

What counts as autism very much depends on where you live, and when.  The more developed the country, the milder the symptoms need to be to warrant an autism diagnosis and in recent times there has been a tendency to diagnose any variance from "normal" as something.  I am not convinced that this is helpful. 

The other day I was reading about the only government-run residential school for girls with autism in the UK.  I was imagining what it must look like.  Girls diagnosed with autism are more rare than boys, but usually have quite severe autism, because for various genetic and other reasons they seem to have a degree of protection, meaning that they need more “hits” in a multiple hit process.  The only girl with autism I have met was non-verbal and had lots of issues.  I met one girl with what was diagnosed in the UK as being Asperger’s, who is highly intelligent but very shy.  She goes to regular school and does just fine; in a rough school no doubt she would be bullied, but nobody would consider her "disabled".

So I was expecting the only government-run residential school for girls with autism to be full of girls with severe autism.  Not at all.  It is seems to full of very highly functional girls and with a Head Teacher who thinks that just as many girls have autism as boys; they are just better at hiding it.

Maybe you can hide some Asperger's, but nobody can hide autism.

Limpsfield Grange Girls with Autism

       

Girls with Autism

These girls are convinced they have autism, but have almost nothing in common with the autism exhibited in the special school where we live. Strange.

The way the word autism is now being applied has made it rather meaningless.

All the girls in the video have Asperger’s and so they have all those issues, like being bullied in mainstream school.  I wonder if they ever meet people with what used to be called autism?

Some people with Asperger’s have serious issues, but a lot do not.  The ones with issues can choose to have them treated and some do just that.  A vocal group are adamant that they are just fine the way they are and that the world should adapt to them.

From a therapeutic perspective, the issues faced by people with Asperger's are often very similar, like anxiety, shyness etc. But these issues are different to those faced by people with Autism, so much better to retain the name Asperger's. 

I would go back to the term PDD (Pervasive Developmental Disorder) and then use Autism, Asperger's, ADHD etc as subcategories. Then there would be  a term for adult onset mental disorders (AOMD) like Schizophrenia and Bipolar.  The molecular basis of PDDs and AOMDs are all intertwined and it is the specific molecular basis in each person that matters.

Asperger's means no speech delay, no MR/ID and a very much lower incidence of epilepsy.  As we have seen, Baclofen therapy works very well with most people having Asperger's, but not those with Autism. So Baclofen for the girls at Limpsfield Grange, but not my local special school.

Constantly publicising highly verbal people with “autism”, makes autism appear as a minor quirky issue that you will likely grow out of, rather than a serious medical condition that in many cases can be treated.

You do wonder why there is no government-run residential school for girls with severe autism in the UK?  What are their parents supposed to do?  Is it that people don't want to talk about that kind of autism? and it wouldn't make good TV viewing. 

A New School Year – Still keeping up

Before I return to the science-heavy posts, this is another post to encourage people not just to read about autism, but to treat it.  No pseudoscience or great expense is required.

After close to three years of using biology, rather than just behavioral therapy, where have we got to?

Acquiring new skills is effortless for clever typical kids; we have also got one of those.  For kids with classic autism, even the most basic skills need to be taught and taught again, until eventually, they might sink in.  I do not think this has anything to do with permanent MR/ID (mental retardation/intellectual disability), although I can see why it often gets diagnosed as such; it turns out to be treatable.

In the race to keep up with the typical kids, or at least keep them in sight, we started with ABA and about 1,800 hours a year of 1:1 time with an assistant.  After a few years the typical kids had pulled far ahead.

At age 9, I started to correct the underlying dysfunctions, first with Bumetanide, using very recent findings in the scientific literature.  This coincided with the decision to change his (neurotypical) peer group at school to those 2-3 years his junior.  Time was reset.

We still had the 1,800 hours a year of 1:1 time with an assistant, half at school and half at home.

At age 12, the original peer group is now far out of sight, but after three years we are still keeping up academically with the new “friends at school”.

Monty, now aged 12 with ASD, is in the same small mainstream international school he has attended for eight years.  Three years ago I held him back two years, since he was becoming completely “un-includable”.  So we went Year 1, Year 2, Year 3 then back to Year 2, then Year 3, Year 4 and now Year 5. 

Since most readers are American, where school starts one year later, to convert UK school year to US grade, just subtract one.  UK Year 5 = US 4^th grade.  In the US you finish in 12^th Grade whereas in the UK system you finish in Year 13, both typically in your 18^th year. (so in the US system, he went K, 1^st, 2^nd, then 1^st, 2^nd 3^rd and now 4^th)

Many kids with autism are now “included” in mainstream education, but in reality some are just having a private 1:1 lesson with their assistant at the back of the class. This is not a good idea; for the last three years Monty has been able to follow the teacher.  If you cannot follow the teacher, you really should not be in that class.

We have a new class teacher, an American, he has been teaching for 15 years, but has never had a special needs kid before; that in itself tells you something.  Now he has Monty, aged 12 with “treated” classic autism, something he probably will never see again.

After a couple of weeks, his conclusion is “he can read nicely and do the exercises”.  This makes it sound rather a non-event.  A few short years ago, his school teachers were rather stunned that his 1:1 assistant got him to read very simple words.  Now he can read aloud from “chapter books” to the rest of the class.   

When they had a spelling test (words like graduate, icicles, sausages) he got 18/20 and one of the new girls in class told her mother how clever Monty is.  When told he has “special needs” and an assistant, she replied “special needs … no special needs”.  That was nice, but Monty does still have plenty of special needs, but for three years he has been able to move forward academically at a similar rate to his classmates, albeit that they are all 2 years his junior.  That progression is quite extraordinary, if you know about outcomes in classic autism. 

Having been using ABA for five years prior to starting with the biology/pharmacology, and seen steady but slow progress and so falling ever further behind his peers, I never expected to be here in 2015 with Monty being able to subtract 7,794 from 9,621, or add up 8,756 + 4,326 + 7,832, interpret data from graphs and use x,y coordinates.  Until five years ago he did not even attend numeracy/math classes at school, because we had to focus on basic speech, basic reading and things like standing in line and changing shoes.

I have no idea how far he can go. I was expecting by now to again have to repeat a school year, but it has not been necessary.


Behavioral problems (SIB, anxiety, aggression etc.) were generally rooted in biology and have been more than 90% treatable.

With neither behavioral, nor pharmacological intervention, it would not now be a pretty sight.

It is sad that almost nobody treats Classic Autism pharmacologically; there are so many unnecessary, unhappy, consequences, lives sometimes lost to what can be a treatable condition.

It also appears likely that by treating the dysfunctions in Classic Autism, you may avoid the possible later progression to epilepsy/seizures and all the problems that may cause (even SUDEP, drowning etc).  This was something we had been warned might develop, but now looks much less likely.  For some people, seizures are a bigger issue than their autism. Some data, for those interested:-

Clinical Characteristics of Children with Autism Spectrum Disorder and Co-Occurring Epilepsy

This is among the largest studies to date of children with ASD and co-occurring epilepsy. Our sample includes 5,815 participants with ASD, 289 of whom had co-morbid epilepsy. Using statistical modeling in this well-powered sample of patients we have made several important observations about a contemporary group of individuals with ASD and epilepsy. We identified several correlates of epilepsy in children with ASD including older age, lower cognitive and adaptive functioning, poorer language skills, a history of developmental regression, and more severe ASD symptoms. Through multivariate logistic regression we found that only age and cognitive ability were independent predictors of epilepsy.

The average prevalence of epilepsy among children aged 2 to 17 years in our population-based sample, the NSCH, was 12.5%. This estimate is comparable to a recent report of a 15.5% rate of epilepsy in another population-based sample of children with ASD. While the prevalence was 10% or lower in children under 13 years of age, by adolescence it reached 26.2%. Therefore, the best estimate of the cumulative prevalence of epilepsy in ASD through 17 years of age is 26%. Our study replicates findings from prior studies that have followed children with ASD into adolescence/early adulthood and reported epilepsy prevalence rates from 22% to 38%

Note that Classic Autism accounts for about 30% of ASD; it is not hard to guess where you would find most of the 26% with ASD who later develop epilepsy.  

Odd epileptiform activity (seen on an EEG), falling short of epilepsy, is common in young children with autism and I think might be considered as pre-epilepsy.  Just as someone who has prediabetes has the chance to do something about it, before it progresses to type II diabetes, unusual EEG activity should prompt consideration of a treatable excitatory/inhibitory imbalance. 


Conclusion

At least I have treated the only autism case I am responsible for. I encourage others to do the same; it is never too late, even in adulthood.  We have one reader, Roger, who got his core biological autism dysfunction diagnosed and treated in adulthood.

If you prefer to wait for 100% FDA-guaranteed solutions, you will wait forever.  

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.