Back to School Again

There have already been several back-to-school posts in this blog and I did wonder if we really need more, but it is good to hear something positive about severe autism.

There are many blogs about severe autism on the internet.  They tend to start when the child is very young and the author is upbeat and optimistic about all the challenges ahead.  ABA is wonderful, homeopathy is great, the DAN doctor and the Zyto scan are so impressive and then they usually fade away as the reality sets in of dealing with a child who is no longer a cute youngster anymore and their autism did not go away, it became more evident.

If you want to read about the reality of older children/adults with untreated severe autism you can follow the blog of the US National Council for Severe Autism. 

             https://www.ncsautism.org

This group does indeed share “autism horror stories”, but that is the reality they live in. Those sometimes annoying autism self-advocates that get upset by these inconvenient stories about severe autism are demonstrating what is well known, that some Aspies do lack empathy and cannot be reasoned with on subjects they have become fixated upon.  Most Aspies, fortunately, do not have these issues - best the former group find something else to fixate upon, like climate change.

I think autism horror stories should act as a warning of what might lie ahead if you are not proactive earlier on.

I do recall “medical advice” given to me by doctor relatives when Monty was diagnosed aged three.  “It’s alright now that he doesn’t talk, but what are you going to do when he is five years old, if he still does not talk?  People are going to notice” and “make sure he does not get aggressive, as he gets older”.

How do you ensure speech develops and aggressive behaviour does not develop? It is not so easy.

Monty is now 16 and adult-sized, by 9 years old he had experienced all the worse autism can bring, except for epilepsy, but we are still here and still optimistic. Autism did not fade away to nothing, but after nearly 7 years of personalized medicine, IQ has been significantly increased and the severe issues relating to autism have all been resolved.

As one severe-autism Grandad said to me, “Monty is 80% fixed”.

The remaining 20% does still make him more autistic than most people diagnosed today with “autism”.  But overdiagnosis is another story.

I think the members of the US National Council for Severe Autism really should look at personalized medicine. Improvement is possible at any age. Just because you tried a DAN Doctor a decade ago, does not mean you did everything, science has moved on and there are some good researchers.

I am really pleased that even at Monty’s age of 16 that further improvement to the rate of skill acquisition is possible.  It took just three weeks, seven years ago, to find my first 3 effective interventions; further innovations took longer and longer. Six years later another burst of activity seems to have paid off and I think we are approaching “as good as it gets” in terms of mood, behaviour and learning capacity.

The current plan is three more years of high school and then to move on.  That would mean leaving school just before Monty’s 19^th birthday, while his classmates would be 16/17 and after they all take their first set of official exams (General Certificate of Secondary Education). The English educational system is unusual in that in the last two years of high school most people study only 3 subjects, it is very narrow and specialized and so unsuited to inclusion of anyone with Classic autism.  In effect Monty skips the last two years of high school, but since he was held back two years at the age of 9, he still leaves school at 18.

Monty does not have an IEP (Individualized Education Program), he attends the regular classes and sits the regular exams, but he does have a 1:1 assistant.  Hopefully, this will continue to work well for another three school years.

Monty has recently joined a social skills group for teenagers with Asperger’s/Autism, which we are calling “Drama class”; it is his first classroom experience with non-neurotypicals. They can practise social interactions and concepts like personal space.  The others have more conversational speech than Monty.

We have found inclusion in a small mainstream school very successful. Putting a group of people with special needs together has advantages and disadvantages. Having a combination of both types of education is probably best.  In the research studies, the interaction with typical peers is the most beneficial, but in many real-life cases of inclusion there are typical peers, but there is almost no interaction with them.

I think that sometimes inclusion is more for the parents’ benefit than the child.  Where we live an autistic child with MR/ID can attend an elite selective high school because according to their IEP they have outstanding grades and so win entry.  How does this help the child? They have no chance of following anything their brainy classmates are learning.

The key aim of Monty’s therapy for some time has been to develop more speech. Many young children now diagnosed with autism have obsessive interests like dinosaurs, about which they may drone on incessantly. We are coming from the “not speaking at all” end of the spectrum.  When people tell me that others with autism speak more than Monty, I now ask what are they actually talking about. Very often it is a repetitive ritual of questions and answers, but it is indeed a form of conversation.

The net result of Monty’s therapy and pills has been more speech in recent months. He is very interested in a widening group of landmark buildings in the city centre and is interested to know in terms of North, South, East and West where certain cities and countries are. I suppose this is the kind of dinosaur conversation/monologue that parents experience with their young Aspie child.

Monty is making some great comments while we are driving, when anything unexpected happens, like today when an ambulance had to squeeze past our car in traffic. Today was a new comment of his creation.

Since Monty is 16 years old, I suppose we are expecting more “speech” like that we had from Monty’s big brother, who could speak like an adult when he was just a small boy. Big brother calls me up from his University in Milan to discuss which Universities to apply to for his semester abroad, or what kind of wine goes best with the risotto a friend is cooking, or how to stop his air conditioner from smelling. Monty wants to know where is Stockholm and does it have a shopping mall? Does the shopping mall have a cinema? Who lives in Myanmar? (Aung San Suu Kyi), Who lives in Kazakhstan? (big brother’s friend) Who lives in Russia (Mr Putin). He wants to know what is for supper and can he go out for ice cream afterwards. 

It is better to just regard more of any kind of “relevant-to-him” speech as a good thing. When he sees a road being reconstructed, he wants to talk about what equipment is used and how the workers will tidy up after they have finished. For Monty being tidy is very important, this why he likes washing cars every weekend.  We have now moved on to washing decking.

If you count all this as “speech”, then there is far more speech than twelve months ago.

At school he can describe where he went for his summer holiday, but at home with family he would be briefer.  This is probably perfectly normal behavior.

In addition to more speech, some sentences are getting very long, meaning sometimes he has to take a second run at getting to the end.

There is also much more use of the first person, rather than you/Monty. He also improved in his second language.

Meanwhile, broader cognitive function is also growing. I restarted an online Math tutoring program called Maths Whizz that we used several years ago. Now we are at a much higher level and Monty needs far less help than I used to give. I have not repeated any of the lessons, whereas I used to repeat all of them several times.

I am not expecting Monty to ever get to the level of a “true Aspie”, Hans Asperger’s little professors who are brilliant at maths and fluently speak multiple languages, like Greta Thunberg.   The “contemporary Aspie” may well be what he ends up resembling in a few more years - I am surprised how over-used that term became, maybe that is why they got rid of it in DSM5.

To be an Aspie the definition slipped to mean you never had MR/ID and did not have a speech delay.

I think Azosemide (the second daily NKCC1 blocker), Clemastine (myelin booster and pacifier of microglia), BHB/C8 and the recently added DMF (immunomodulator and Nrf-2 activator) are driving the changes along with his long term 1:1 assistant.

The summertime raging and regression of previous years is countered by Verapamil, Dymista nasal spray (fluticasone propionate with azelastine hydrochloride), Azosemide and now a tiny amount of DMF.

Our ENT doctor is another big fan of Dymista and told me to feel free to give it twice a day for 2+ months. More Dymista = less anxiety.

Our dental marathon is nearly over. We have been to our new dentist 15 times this year to avoid general anesthetic and two extractions and she has witnessed how allergy greatly affects behavior and compliance. Monty has had local anesthetic 10 times, which is far more than I had expected.

DMF was my final secret weapon to ensure summertime tranquillity at the dentist.

Now at the dentist Monty gets into the chair and then requests what music he wants the dental assistant to put on. Monty and his dentist seem to like Abba and Cyndi Lauper at the moment. When one track ends, he requests the next one, “Miss, can we have ….”.

It does look like very low dose DMF is another piece in the puzzle, at least in our case. It does tick the important boxes in terms of safety and price, plus there is a great deal of scientific evidence showing why it might be helpful.

Education and Autism

This blog mainly concerns personalized medicine, which is a therapy targeted to a specific person, or sub-group.  Personalized medicine can include drugs, OTC supplements, diets and, importantly, non-drug medical therapies like vagal nerve stimulation.  Some non-drug medical therapies were covered in previous posts and others will be covered in future posts.

The other part of the bigger puzzle can be called personalized education; anything from ABA to music therapy to what you do at school.

Eleven years ago, when starting with our first ABA consultant, just about his first question was “are you following any special diets or biomedical therapies”. He was clearly against such therapies, seeing them as a big distraction from the all-important ABA and Verbal Behavior (VB).  He did indeed have a point, you do have to focus your attention on multiple tasks and avoid being obsessed with vaccines, gluten or candida, as some people appear to be.

ABA does have its limits, as our first ABA consultant found with his own son. In the case of severe autism it may well help a lot, but it usually is not enough. Rather ironically this ABA consultant eventually came back to me years later to ask about personalized medicine.

Some people report terrible experiences with ABA and, if these are genuine, I think there must be some terrible ABA therapists out there. We had very positive experiences with ABA consultants and our home-trained therapists. 

Education

In the case of Monty, aged 15 with autism, he started with very personalized education and only much later, at 9 years old, did we add personalized medicine.

It is pretty clear than in cases of severe autism you need all the help you can get and so as to achieve a  relatively good life (the palm tree by the beach, in the above graphic); you need personalized education and personalized medicine.

Education of typical children

For some years I was a school governor at an international school and so I got to know many different teachers, different educational systems and curricula.

When schooling kids with autism the choice is normally between mainstream school, special school or home schooling. In some countries home schooling is illegal.

Mainstream schooling varies greatly from country to country. Most active autism parents seem to be North American and they likely do not realize how lucky they are to have a pretty easy school curriculum, which lends itself to less able learners.

In some other countries the standard of maths and science is very much higher and school is really geared up to benefit the most able. Anyone of average ability, or below, very often gets left behind.

The level of selection in schools is also important and highly variable. In some countries kids get separated at age of 10-12 into those who are expected to do well and becomes doctors/scientists/ lawyers and those who will end up with vocational training rather than a degree.

In other countries you get a genuine mix of abilities all the way up through high school.

Poor Learners

I had a visit recently from a friend of mine who runs an organisation in Austria that tries to attract top achievers from university to spend two or more years teaching in the country’s worst performing schools, before starting their intended high-flying careers. It is part of an international group doing the same thing across the world. They seem to be doing well and the schools perform much better with their energetic young teachers.

What was interesting to hear was just how bad the standards are at some of these schools.  A significant minority of 12 years old kids are functionally illiterate. One reason is that they have many immigrant children who do not speak German at home, did not speak German in Kindergarten and now sit in a class that is 80% non-native German speakers. The end result is that they cannot write a sentence in German, even though they might have lived all their life in Austria. So much for inclusion/integration.

Interestingly, my friend told me that in Austria, almost no one knows that Hans Asperger was an Austrian.  I did not mention that some Americans are worrying about whether Asperger was a Nazi.  Andreas Rett, another Viennese doctor, whose name was given to Rett syndrome by the English-speaking world 17 years after he described it in the German literature, is another forgotten Austrian. Rett actually was a Nazi, so I suppose some people will want to rename that syndrome, when they figure this out. Leo Kanner was really Austro-Hungarian, being born in Lviv. Kanner was Jewish, so definitely not a Nazi. So many Austrians connected to autism and yet nowadays the German speaking world contributes almost nothing to autism research. I will leave you to draw your own conclusions.

How Austria can restore its status as a center of autism research

Back to education.

The top performers educationally are usually Singapore, where they practice old-fashioned education and Finland, where they follow a very enlightened non-pressurizing Scandinavian approach and where school starts at 7 years old.

The maths curriculum and the workbooks from Singapore are widely used by home schoolers around the world and I bought them for my son. 

A suitable learning environment for someone with severe autism

In many developed countries education authorities believe that children with severe autism can be educated in both mainstream classrooms or in special education.

Given just how variable mainstream education is, we should not expect consistent results. For some children inclusive education will work well and for others it might be a disaster.  A lot depends on what you are being included into and you have to be “includable”.

Small classes, with up to 12 kids, that include all abilities and only one special needs learner give the best chance of success, in my opinion.

Classes with 30 kids including 2+ special needs learners are a recipe for failure for all 30 kids.

Special education varies from large groups and a single teacher in some countries to tiny groups and where each child also has their own 1:1 assistant. There is no normal or typical special school.  There are some very good special schools in the United States, but they must cost someone $100,000 a year.

Home schooling is only as effective as how good the “teacher” is.

Parents need to think long and hard about how to educate their child with severe autism and not assume the State will provide them a perfect solution.  The better the education is for typical children, the greater chance you have of good special needs provision. Not surprisingly, special education is good in Scandinavia and terrible in most poor countries.  One of Monty's assistants moved to Norway to be a special needs teacher.

Some people with severe autism will struggle to learn anything, anywhere. These people need personalized medicine or else their 15-18 years spent in “education” is just day-care and a prelude to institutionalization, perhaps with a nice name like a group home.                                      

Personalized Education combined with Personalized Medicine

At the age of 8, after 4 years of intensive ABA-inspired intervention, Monty could not grasp the simplest elements of maths; I mean single digit addition or subtraction using the number line. Language and cognitive function appeared to be immovable barriers to progress.

December 2018 marks six years after starting personalized medicine, and I just learned that Monty’s grade for Maths this term is B+. He could handle the algebra and trigonometry in the end of term test, without any prompting from his assistant.

The addition of personalized medicine has had a transformative effect on cognition.  This continues to surprise people even now. 

Equally encouraging is that Monty has taught himself to swim "properly", he has long been confident in a pool or in the sea, but now at school they go to swim in a full sized pool and get timed swimming laps. Today he was the fastest of two combined classes, that is something else that would not have been expected. 

One autism Grandad we know regards Monty as "80% fixed", but "some problems will always remain"; that is quite a nice summary. It is all relative to what you know, this Grandad only knows really severe autism.  I think many of the parents of the 1 in 40 now diagnosed in the US with "autism" would regard Monty as far from "fixed", but then their kids are fully verbal and have few challenges.  

People with severe autism inevitably plateau at a low cognitive-equivalent age, but it does not have to be like that, if you can treat the underlying biology.  

If you start by treating the biology and fine-tune brain function to the extent that is possible, then you should benefit greatly from all that costly personalized education, that you may or may not get someone else to pay for.

Conclusion

If you have a child with severe autism, life may become a huge challenge. There are all kinds of horror stories you can read about - I suggest you do not dwell on them.  Everyone has options, whether to rely entirely on what you get for free from the State, or whether to apply other methods.

In a resource unconstrained situation, the best outcome is likely to come by combining personalized medicine with personalized education. I can only say that this combination has worked well for us.  In terms of money, it has clearly cost much more than having a typical child, about twice as much. 

If money is tight, start with personalized medicine.

People tend not to put a value on time, but for many time may be the greatest cost. You typically cannot leave a person with severe autism unattended and if they have a complicated schedule, somebody always has to be there and to be able to step in when something gets cancelled, or someone is off sick. 

Until the 1970s, medicine did have a strategy for people with severe autism. It was diagnose, institutionalize as a young child and forget. The Germans added their own variant to this.  Having shut down all the big residential hospitals for mental conditions, there is now often a big gap in provision.  Where do you put adult-sized people with severe autism?  It may not be a problem for those who are docile, but what about those who are not?

Non-verbal Autism

For people born around the year 2000, or before, and diagnosed before 4 years old, having autism very often meant being non-verbal. By my earlier estimations, about 0.3% of children are still non-verbal when their peers are already chatting away. Of that 0.3% some will spontaneously develop speech, some develop speech due to intensive intervention either by parents or therapists and some never develop speech.

Being non-verbal does not mean you cannot communicate; you can use sign language, you can write/type, you can use pictures (Picture Exchange Communication System – PECS) or you can use an augmentative communication device. Such devices used to cost a fortune, but now they are just apps you can install on a tablet computer or smartphone. These apps exist in numerous languages not just English, Spanish, German and French.

In 2007 we used PECS and started to use a special touch screen connected to a PC. Using special software, Monty could show that his vocabulary was much more extensive than we thought, even though he could not speak, read or write; it was all picture-based.

I just saw that one American study is suggesting that the incidence of DSM 5 autism is now 2.5%. I think this will inevitably mean less and less attention for those with non-verbal autism, which I suspect is still around 0.3% of three year olds.

Parents or the State?

Who should be doing something to help those who are non-verbal?

This question recently arose when I was talking to the family of an 8 year old boy with severe autism. He is non-verbal, but goes every day to a special school for autism. I asked if he is going to learn sign language, or is he going to get some other kind of means to communicate? Apparently not.  I explained about augmentative communication devices and suggested asking the school about them, or just go and buy one.  You do have to wonder what they are doing all day long in this special school.

There are many alternative methods to communicate, but they all require someone to teach them.

Whose job is it to choose a method and make sure it is implemented?

I guess this depends on where you live.

In my world, the proactive parent would start to do this by the time the child was three or four years old.  Given not all parents are proactive, you would think that at pre-school or junior/primary school “the State” would step in and take some action; apparently not, at least where we live.

So what happens to little kids who have no means of communication? They become adults who have no means of communication and, not surprisingly, they will have major behavioural issues.


Non verbal vs non conversational

Whilst on this subject, there is another important issue to highlight.  Even when some people with severe autism do start to talk, they very often do not become conversational. They can answer questions and make requests for items they want, but they do not become chatty like typical kids.

Some parents refer to their non chatty child with autism as being non-verbal, this really is not fair to those children who do not have a single spoken word.

Some children with autism can sing but do not talk. This may sound very strange but both Monty's assistants also participate in musical/theatrical group of kids with autism that puts on public performances.  They have such kids.

I think if you can sing, you can be "trained" to talk.  It is just requires a lot of effort by someone - parents, therapists or school assistants. 

Becoming more conversational is a continuing challenge in educating a child who was non-verbal. I have a big pile of books and training manuals on this subject and recently decided to re-emphasize this in Monty's daily schedule. We cut back on physical education (PE) at school and one after-school piano lesson.  We already cut out the two foreign languages at school to make time for 1:1 work with his assistants.

By encouraging longer answers to questions both spoken and written, there is also a net benefit to regular school work.  


Studying Severe Autism 

Researchers tend to avoid studying severe autism, which often also means non-verbal autism. Research is focused on what I would call Asperger's and what researchers would call level 1 autism; in DSM5 terminology there are 3 levels of severity.  Clearly it is much easier to study people who can hold a conversation and have a typical or even high IQ.  

There is an initiative, see below, to study severe autism, but for drug producers the big market is mild autism. You can see this by looking at the types of drugs currently in clinical trials.

What Can We Learn from Studying Severe Autism?

   

Back to School and Try to be Cool

The Milaneses and their shops

                                             
Another school year has begun, which is always a good time for Monty, with ASD now aged 15. He loves his small international school; he has been there since was 3 years old. School is fun because he gets lots of attention and stimulation. Other children are surprisingly nice to him and the teachers get to meet someone with autism.

In kindergarten and the early years of primary/junior school boys with autism often get taken care of by some of the nicer girls. It is like having a live human doll to mother. It is amazing how this pattern repeats among different children with autism. This gradually seems to fade away as girls discover that they need to be cool and kids with special needs tend not to be cool.

We had a visit over the summer from a Dutch girl who was one of these nice little girls when she was younger. Now she is also 15 and has not seen Monty for a few years. The difference between them now is much starker than 10 years ago, but there still is a bond.

Last year at school for friendship development day they had to climb a small mountain, this year they went bowling. The girls in the year above wanted to teach Monty how to bowl and they did. The year above is unusual in being mainly girls.

I know that most children with autism/Asperger's cope with junior school but many, particularly Aspies, really hate high school, because they do not fit in and so they get bullied. Monty has never experienced any such problems, but he is not an Aspie, so he is not a target.  People who are a tiny bit different get bullied, people who are more different tend not to get picked on.

Big brother has graduated from high school and gone to University in Milan, Italy, far away. In his time at school the class were not so nice to the Aspie boy they had in their group and he was not nice to them. I think it was a lost opportunity; ultimately it is up to parents to make things happen.  Parents often blame schools, but most schools have no expert knowledge and have many other issues to deal with. Much more could be done to integrate those who are just a tiny bit different.

I think that to fit in, the special needs pupil needs to be “cool” and have an assistant who is seen by the class as “cool”. What counts as cool? How you dress, sport you do, musical skills etc. For the assistant it includes how old you behave; having an Assistant who behaves like a 50-year-old, is not going to help integrate a teenager.

Most kids figure out what is cool, but if you have any degree of autism you may not. I think some people would indeed benefit from “cool lessons”, you could call it “how to be a teenager”. There are workshops for Aspie teenagers, a little bit like this. 

In our household this new school year is much more about big brother. We have lots of video calls about Italian bureaucracy, how to cook, how expensive going out is, but how cheap Italian coffee is (no Starbucks).  Overall Milan is beautiful city, full of very fashion-conscious people who do seem to enjoy life.  The Italian students in class can be identified by their expensive sunglasses and their going for “aperitivo”.  The foreign boys are going for birra, bier, pivo, bira or cerveza, which is cheap in a supermarket but very expensive elsewhere. 

Bocconi is Italy’s top University for economics; it seems pretty well organized and is very inclusive. They have many students from poorer countries, who get substantial financial support from the University, which is the opposite of what happens in England (where foreign students face paying up to 3 times more for tuition). Germany is also good in this regard, where even Medical School is free to all, but you do need to learn German. Big brother is getting to practise his foreign languages, but tuition is in English.

   

Ambitious about Autism? All roads lead to Las Vegas

There are many odd things in the world of autism. One is ABA (Applied Behavioral Analysis), the gold standard therapy in North America, where it is seen as evidence-based.  In the rest of the world there is very little ABA and that same “evidence” is not seen as conclusive.

Raymond in Las Vegas with his “assistant” Charlie

In the US, Federal Government funded very early intensive intervention is available to anyone under three years old with an autism diagnosis. The “evidence” shows that such very early intervention can change the outcome.  But why stop at three years old? What is magical about 36 months of age? After this age some people continue to get intensive intervention and some do not; it all depends where you live and who wants to pay.

If the evidence is so strong that very early intervention is so effective, why do rich European countries leave it to far older than 36 months to even diagnose autism?

Much does not add up in the world of autism.

Personally, I am a fan of ABA as a teaching method, but only when done in a fun way, which is how our US-trained Behavioral Consultants practised it. Lots of high fives, “good jobs”, smiling faces, tickling, dancing and generally a good time; no tears and no stress.

I cannot see why you would stop your intensive intervention so soon after starting it and I really doubt you make a life-changing difference very often, by 36 months of age.

One of our Behavioral Consultants came from the New England Center for Children and I recall asking her, “so when do you stop with your therapy?” She told me that they have people in their 60s still in therapy and they might go on a trip with their assistant to Las Vegas (yes, just like in Rain Man).   

There are many special schools in the US using techniques like ABA. Because of the high ratio of staff to pupils, these schools are very expensive and somebody has to pick up the bill.

In Europe there are very few ABA schools, one of the first is called Tree House and was established in London.  It was set up by a charity called Ambitious about Autism.  This school is very expensive and the idea is that the municipal authority where you live is supposed to pay the fee for you. This would come out of their budget for special needs kids, so the more money they spend on such private schools the less money there is left over for the kids with less demanding parents, who do not advocate for their kids.

Anyway, I recently came across the fact that Ambitious about Autism has gone a step further and now runs Ambitious College for people up to the age of 25.

This made me wonder if you go to the ABA school from 4 to 18 years old and then go to the ABA college until you are 25, when does it end? Perhaps with a trip to Las Vegas? 

ABA as a treatment or a teaching method

While I see ABA as a (highly effective, in the right hands) teaching method, the ABA specialists put if forward as a proven treatment, meaning you should get better. 

Ambitious or Realistic?

When treating a three year old with autism I think you have to be ambitious, optimistic and hopeful.

At some point I think you need to be realistic.

Day care and activities for young adults with severe autism is a great idea. Including them in activities with non-autistic people would be even better.

With people living longer there are many activities for retired older people, which are entirely suitable for adults with (non-violent) severe autism, or indeed with Down Syndrome.  Why can’t the 25 year old with severe autism play table tennis with the 70 year old retired teacher and go to the same keep fit class?  Last year Monty, aged 14 with ASD, was in Shanghai and when he saw a large group of older Chinese people doing their group exercises in a public park; he joined in. Everybody enjoyed it. 

I am not sure creating a “College” for people with severe autism is helpful. Helping people with autism go to a regular college, by giving them an assistant, is a good idea.

If it really is day care, why not call it day care?

If it is about preparing for life in the real world, what was happening at the ABA school from 4 to 18 years old?

The Autism PolyPill 5 years on from December 2012

2^nd WOW!

Still autistic, but less so, and no longer cognitively challenged.

It is exactly five years since Monty, now aged 14 started his Polypill therapy. At first it was just bumetanide, but shortly thereafter NAC and atorvastatin were added, more followed later.  All without any side effects.

I received Monty’s end of term school report just before Christmas and it bears little resemblance to what he received back in 2012. Now it does not look like the report of someone who is cognitively challenged. Almost all the grades are As; these are his best ever results and unlike 5 years ago, these are the same tests as taken by his NT peers, not an easy version. 

At the beginning of this first year in high school, there was a view that Monty should not be there, that he would fail to cope and later have to leave; he has proved otherwise.  None of this was malicious; it was just that the head of the high school used to teach in the junior school and has known Monty since he was four years old. Back then, and until he was nine years old, he was seriously challenged, academically. The post-Polypill Monty came as a big surprise, he is still autistic, but now academically functional.  He is now never disruptive and behaves like an attentive model student, just one that does not talk much.

Monty’s assistant recently asked me why, since some doctors do read this blog and apply it, don’t more doctors now treat their kids with autism? She mentioned a top local neurosurgeon who has twins with severe autism; why isn’t he treating his own kids? If you can do it, why can’t he? My answer was that a neurosurgeon is not a neuroscientist.   His job is quite primitive; he drills holes in people’s skulls and pokes around for visible defects in the brain. Treating autism is about tweaking tiny things like ion channels that you cannot even see. Being a neurosurgeon does not really help much, unless you read the neuroscience literature, which he likely does not.  

Wow Moments

I do like “Wow moments”. They do not come very often, the last one was four years ago when I first saw a little yellow pill (Verapamil) make an extended episode of self-injury, melt away in front of my eyes. That was like winning the Lottery and this therapy continues to have the same effect.

A “Wow moment” occurred in late December when I opened the end of term report, of Monty’s NT big brother, who attends the same school.  Monty’s grades are better. Yes, Monty is in year 7 and big brother is in year 13, his final year of school. You should not compare one sibling with another sibling, but nobody would have dreamt that a boy with classic autism would ever outshine his intelligent NT brother academically, under any circumstances. I think that deserves a “Wow”. Even big brother was impressed by little brother.

Nowadays an autism diagnosis usually is not associated with MR/ID; it is much more likely to be better described as a variant of Asperger’s. If you have Asperger’s there is no reason you should not aim for College/University. Unfortunately that is not Monty’s case, he has strictly defined autism (SDA), meaning more severe biological dysfunctions and his school reports from 5 years ago reflected that. He could not function academically; school was more for “socialization”.  People with SDA usually do not make it past the basics of school academically.  Where we live, autism = SDA and severe autism means something extremely challenging, so I find it very strange to read comments on the internet written by people claiming to have severe autism themselves.

One medical researcher recently asked me how effective is sodium benzoate (NaB) proving as a cognitive enhancer. All I could say was the current level of academic performance is shocking everyone. We had teachers thinking the assistants were boosting his test performance, so we all agreed to be super careful not to give help during tests. So now they are 100% his work, before I think it was 90% his work with some “hinting”.  I cannot say with certainty whether NaB helps or not. I stopped for a week over Christmas, and I concluded that there may well be a difference.

The extreme case of “hinting” is so-called facilitated communication, when the assistant ends up doing 90% of the work. The result is an illusion of what you would like to think the child is capable of, rather than reality. We do not need any of that.

There are also prompting methods like RPM, but at the end of the day what matters is what the child can eventually achieve entirely unaided. It does not matter if they type their work, or handwrite it.

Is the OAT3 inhibitor helping? For the last few weeks I have used coffee flavanols to boost the pharmacodynamics of bumetanide (by delaying its excretion). 

There are still plenty of ideas I have not yet implemented (RORα, PDE4 etc.) but the current PolyPill has delivered results far beyond my expectations. I do not think it is realistic to go from strictly defined autism (SDA) to entirely NT. The target I mentioned long ago was to go from SDA to something like Asperger’s. Monty is never going to be quite like his older brother, but after 5 years he now evidently has a typical level of IQ, and most importantly he can apply it at school and in daily life.

This Christmas Monty made his way through the self-scanning passport control at the airport and when randomly selected for the whole body scanning machine, he coped without incident.  Air travel is now a highlight of a trip and the more turbulence the better.

Now to the next five years.

The open question is whether Monty can obtain formal educational qualifications. In the English system there are externally assessed exams at age 16 (year 11) and at age 18 (year 13). Monty’s class group are two years his junior, so he will be 18 at the year 11 assessment. Years ago our piano teacher, who only teaches people with special needs, was pretty blunt about the fact that none of her kids leave school with formal qualifications, except sometimes in music. 

The situation varies greatly depending on where you live.  In the US things are very different and if you have an IEP (Individualized Education Program) and attend high school, you automatically seem to “graduate” high school with some kind of diploma. Many people with an IEP in the US do not have severe learning disabilities and they graduate with the standard diploma.

Monty has never had an IEP because he does not go to a school that offers them. In effect he has had a very customized education program for more than a decade, just it was run from home.

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.   

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.

A Visit to Secondary School and Piano Recitals

Today’s post is science free, since for some of the original readers this blog it has become heavy going at times.

Monty, now aged 13 with autism, is about to move up to mainstream secondary/high school.  While this might sound quite a normal transition I really doubt his kindergarten teacher ever thought he would make it that far, in a meaningful way. Even I thought that finishing mainstream primary/junior school would be quite a challenge.

One reader of this blog is Monty’s kindergarten teacher who has known him from before his diagnosis, a decade ago. Outside of the North America people tend not to want to diagnose autism in three year olds and parents do not want to hear reports from kindergarten that things may not be so good. Even being non-verbal may not ring alarm bells with pediatricians; where we live it is put down as “dysphasia”.

In spite of the tell-tale signs, the differences at the age of three between classic autism and typical are not so big.  We do not have great expectations of three year olds, even though some are already very talented.

Monty’s kindergarten teacher requested he have a 1:1 assistant before he was diagnosed with autism at the age of three and a half; he has had one ever since.

Having started kindergarten quite young it was no big deal to spend an extra year there before moving to primary/junior school. 

For the next four years Monty went to mainstream school in the morning and had 1:1 tuition at home in the afternoon. Very slowly some academic skills were acquired, but mainly as the result of the home program. Not surprisingly, a gulf had opened up between Monty’s skills and that of his peer group. 

As is often the case with little boys with autism, he did get “adopted” by nicer little girls in primary. So you would see him walking hand in hand around the school playground.

At this point, aged 8, Monty had a big regression involving both self-injury and aggression to others.  This lasted about 9 months and was associated with a loss of some of the recently acquired skills.

We never had an assessment using the Childhood Autism Rating Scale (CARS), which is a pity because at least it tells you, at one point in time, where you stand. At the age of 9, Monty had mastered the skills in the very detailed ABLLS assessment, which is an excellent list of all the very basic skills you need; these are skills big brother had at 3 years old.

Shortly thereafter I started my autism science research and instigated a trial of bumetanide.  The rate of skill acquisition then accelerated and the severity of autism faded.

Even though the violent behavior had subsided, at the end of that school year I decided to move him down one school year.  In effect his peer group changed to one which was 2-3 years younger than him.  In subsequent years he moved forward with this new peer group, so he has been in the same peer group for 5 years.

Each year I said to the class teacher that if at the end of the school year Monty had not mastered the year we could repeat it, because there is no point deluding yourself and moving to a higher level when you are clueless about the previous level.  So as long as there are 10+% of the class with lower grades in each subject, I think it is fine to move ahead.  It does surprise me how badly some neurotypical kids do at school, because they should all be ahead of Monty, but some are not. From time to time, Monty is actually closer to the top of the class, which is remarkable.

Since big brother has only one more year to finish secondary/high school, he was rather expecting little brother to wait another year in primary/junior school.

As his classmates started talking about the move to secondary school, Monty naturally assumed he would be moving too.  Having been told by Monty “in September we go to secondary school” so many times, this is of course what is happening.

Recently Monty and his class had a half day visit to their new school and everybody had a great time.

Plenty of the younger kids in secondary already know Monty and as do some of the big ones who are friends of Monty’s big brother.

So big brother realized it was not going to be embarrassing after all.

Siblings going to the same school often have issues, in part because teachers feel the need to compare them to see who is better/cleverer. The fair comparison is the progress you make from where you started, as I keep telling big brother's maths teacher; so not to accept that you have A, B and C grade students and be happy they get their predicted grade, but to try and improve them.

The secondary school is small, but has had some boys with Asperger’s in the past. In theory it should be much easier for them to fit into school, but often it is not. Most of the issues that I get to hear about were entirely preventable.  Having an assistant who the other kids like and respect solves most of these issues.

How far Monty goes through the standard secondary program remains to be seen. He cannot do the high level things that his big brother can do but, as I have learned, neither can 20% of the class and nobody diagnoses them with MR/ID.

Music Recitals

One area where people with Asperger’s can excel is music. There is research to show that people with autism/Asperger’s are far more likely to have perfect pitch than other people. Another big difference is that the Asperger’s child may be happy to practice at home three hours a day.

We recently had a visit from a girl with Asperger’s and she played the piano amazingly, but as Monty’s big brother pointed out, so would he if he practiced 20 hours a week.  It appears to be a case of social life or music practice.

Monty does not play his piano 20 hours a week, for him it is more like 3 hours a week.

Monty recently had two concerts, one at school with typical peers and an autism/Asperger’s concert.

Who plays the best? Well in this unscientific sample, it is clear that the Asperger’s kids play the best, followed by the typical kids and then the autism kids.

Where does Monty fit in? Well he started out as an autism kid, but after nearly five years of pharmacotherapy he is well up there with the more talented typical kids, but not yet up there with the star Asperger’s kids who practice 3 hours a day.

Monty's piano teacher, who has seen him twice a week for five years and only teaches kids with special needs has pretty much the same opinion. Monty is not her best pupil, but he is the only one to progress so far, from where he started. He started his piano before he started his PolyPill. Her comment a while back was, whatever it is he is taking, keep giving it to him.  



P.S.

Monty goes to an International school using the English curriculum, where high school starts at the age of 11; he will start aged 14.  Most of the spelling I use is American English, except for some words that look really odd, since this blog's audience is 70% American and spelling was never my strong point.

Most people diagnosed today with autism have mild autism, often without a speech delay or cognitive loss and should be able to complete the standard school curriculum. People with more severe autism do not normally progress far with academic learning and many "graduate" aged 18 with the skills of a 7 to 8 year old. This does not have to be the case, as some readers of this blog have also discovered.