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Monday 15 February 2021

Core vs extended Maths? An unexpected dilemma. And yet they say “Autism is untreatable and you should not try to treat it”. Plus Lego

 

This time the “Professor” wears the Dunce’s cap


I had a surprise last month, talking to my son’s 1:1 assistant, this time about maths (or math in US English).

Normally I am trying to simplify school academics, and so if something really is not important, like argumentative writing, I am all for skipping over it.  The idea is that Monty, aged 17 with autism, should focus on useful learning that he has a chance of mastering.

Monty’s international school follows an English curriculum and in that model you have a choice in some subjects of studying the core or the extended version. So a typical child who wants to become a doctor, or an engineer, will have to follow the extended version of all their subjects, but someone who is going to shift boxes in a warehouse might opt for the core/simplified versions. Most people lie somewhere in between.

People with severe autism would not normally follow any of these academic curricula, because it is all way above their heads.  Their school is about life skills and providing day-care, while the parents are out at work, or having some respite. Realistically, “graduation” is often just a photo opportunity - things could and should be better.

There is very little published about literacy and numeracy in severe autism.

I thought an ambitious target for Monty would be to try and sit exams, aged 18, in five subjects, but at the easy level where possible, the so-called “core” version.  These exams are normally taken at the age of 16, which is the minimum school leaving age in the UK.

The maths teacher has been thinking about which of her students should be aiming at core or extended.  She thinks five pupils should be aiming for extended and the others should settle for core.  Monty is one of the group of five.

The assistant was almost apologetic, because she did not want to change my plans for Monty. He is now "too good" for core maths.

I do know Monty’s mathematical abilities very well, because I teach him maths at the weekend.  He is no maths savant, but he works extremely hard and now has a good understanding of what they learn at school. I am just amazed at the other kids, with no disability, who do not keep up with him. Prior to pharmacological autism treatment, starting at the age of nine, Monty could not subtract single digit numbers, like 9 – 2 = 7.

Even more recently Monty’s school assistant proudly announced his results in the half year maths test. He got 68%, making him 3rd out of the 15 people in class.  68% certainly does not make you an “A student”, but given he was a “basket case” at maths not many years ago, it is truly remarkable. The teacher even told the whole class his score, which you might think would lead to resentment, but the others are actually very supportive. They have seen his progress over the years. They are currently involved in helping him to reliably tell the time. For some people solving algebra is easier than telling the time – who would have thought that?

The other day I skimmed through an article about some Professor who was quoted as saying “Autism is untreatable and you should not try to treat it”. What a fool - more of a dunce than a Professor. 


Literacy and Numeracy Rates in Autism

People rarely talk about literacy or numeracy in autism. I think it is another issue that people do not want to discuss. We would rather hear about people with savant skills, or characters from those TV shows like the Good Doctor, with trivial autism.

It is clear that many people with severe autism currently cannot read or write, so I suppose they are also innumerate.

You can be non-verbal but literate and numerate; there are specific teaching methods.

I was recently asked to present at an autism conference in Russia. I did click on the organisation’s website and I was pleased to see on the first page its message to Russian parents that you can teach people with autism to read and write and indeed that non-verbal kids belong in school. I agree with them, but it may seem like a Herculean task at times.

My last conference presentation was very simple and not controversial, at the request of the US organizer.  Russians like science and they have asked for a long presentation, so they will get the real deal. A big job for the person who has to translate and then dub it into Russian!

 


 Any human brain can be taught to read, write, count

 

One to one teaching, as above in Russia, is the only way to teach those with severe autism.

Reading and writing do matter. Look at the literacy rates by country and guess where you find countries like Afghanistan, Ethiopia, Sudan and Nigeria?

In Afghanistan the male literacy rate is 55% and for females it is 30%.

Even India has 25% illiterate and they tell us it is the world’s largest democracy. In India literacy ranges from about 66% in Andhra Pradesh in the South East to over 95% in Kerala in the South West. In China illiteracy is just 3% and it shows.

In the US 4% are non-literate and the average American adult reads at the 7th- to 8th-grade level, i.e. like a 13 year old child; plenty of room for improvement.  The problem is the large group at the bottom who drag down the overall results. This is why countries like Finland do so well in skill assessments; they do not have a forgotten underclass.

  

Why bother with Mathematics?

It is certainly worthwhile reconsidering what to teach people with severe autism. If you cannot cut your own fingernails, or tie your own shoelaces, why do you need to know any maths?

Maths is all about following instructions/rules. If you can follow instructions, you can do maths. Daily living skills are also all about following instructions; before emptying the dishwasher, check the dishes are actually clean! Monty has learnt that lesson.

What do you do when the toothpaste has run out? Find some more and if that does not work, ask for help.

Learning to follow instructions is extremely important to those with learning difficulties; just like practising motor skills helps them overcome their initial challenges with fine and gross motor skills.  In the end, the problems just fade away.

Lego is a great way to combine following instructions with improving fine motor skills. It is a perfect therapy for autism; at the very beginning you can use large bricks to get a young child to replicate simple colour patterns (so-called “block imitation”) by stacking bricks. You can use Lego to develop team skills; one person locates the next bricks, while the other assembles them.

We have a lot of Lego at home, but until recently it was mainly the simple models of planes and helicopters that were of interest to Monty. People would give complicated (expensive) models for birthday presents, when actually what you want are the cheaper, simple ones.

We have now progressed to the point where Monty has completed a model that was intended for people older than himself. All the Lego sets have an age recommendation on them. Yes, Lego has some very complicated Star Wars models meant for those 18 and over.  A Christmas present from big brother, it did have a ridiculous number of pieces (several hundred) and some mistakes were made. 

Monty actually calls it “doing the instructions”, rather than making Lego.

The key seems to be to leave him entirely alone and let him make the occasional mistake.  If a later part does not fit, he asks for help and you then intervene, find the earlier mistake and correct it.  If you hover behind him to prevent any mistake being made, then you are not achieving much.

 

Conclusion

You definitely can treat severe autism, meaning raise IQ and/or improve quality of life.  The evidence is overwhelming and is sitting there in the peer-reviewed science.

It looks like you can avoid/prevent some autism by taking certain steps prior to conception and during pregnancy. This is quite clever.

After birth, can you “cure” severe autism? I think this will only be possible in rare cases, for example correcting an in-born error of metabolism at an extremely young age. One example in this blog was the young Greek boy with biotinidase deficiency, that responds to high dose biotin. Our reader Roger is a rare example of an adult whose central folate deficiency was only treated in adulthood.

You can minimize many troubling features of autism at any age; this applies to Aspies and those with more severe autism.

Learning maths develops much broader skills than might be initially apparent.

Lego is a great activity and a fun therapy.  You can of course re-use it, particularly the most basic sets, which you can use over and over.





27 comments:

  1. Duplo (bigger than Lego) is finally an option for play at the age of 5, and I'd like to develop these skills. We've acquired literacy, but math is a challenge mainly du to visuospatial issues. She's not able to see the whole of pictures, diagrams etc. due to cortical visual impairment.
    We're going to keep her an extra year at kindergarten and give motor issues and potty training some time, but I'd like to add some home education in the meanwhile. Any ideas, links, books? What skills have been most helpful?
    Learning to read has bridged the gap of understanding verbal instructions, and I recommend anyone to work on this very early on.

    /Ling

    ReplyDelete
    Replies
    1. Hello Ling I do not know where you are located but there is a branch of specialists called optometrists who can help with these
      issues. The best one in Europe is Ronavision in Spain. In the US there are a lot of providers unlike Europe where there is a handful. Different colored paper, lenses, exercises etc can help with this.

      Delete
  2. Ling, a really great math resource from kindergarten to high school is:-

    www.whizz.com

    It is in English, but you still might be able to use it. It is full of cartoon animation to make learning fun. You would use it as a teaching aid.

    You can try it for free and see if it is appropriate to where your daughter is currently.

    There is a US home schooling organisation, through which you can get 40% discount. Even though you are not in the US, you can use their discount.

    https://www.homeschoolbuyersco-op.org

    You pay them and get a code which you enter in wwww.whizz.com. It does work.

    ReplyDelete
    Replies
    1. Super, thanks Peter! I'll check it out. :)

      /Ling

      Delete
  3. Hello Peter and Ling, these days I've encountered some people that believe Autism is untreatable and it's something that should be embraced, the part I don't understand is why do they say it's untreatable and prescribe a 3 year old non aggressive child Aripiprazole.

    My son doesn't want to be in class and doesn't want to make any schoolwork anymore, he has ADHD like symptoms, he has been a bit calmer, and while I am searching for solutions he has made progress with ABC Mouse, though mainly in English, it has plenty of interactive games he can play with and has several preschool levels, the game makes learning to write, maths and science fun, he now knows the planets, has virtual pets to take care of, and his character looks a lot like him and he dresses it with the clothes he likes. Time limits can be set, all his works are saved, and it's not expensive, here is the link:

    https://www.abcmouse.com/

    ReplyDelete
  4. Hi Peter

    It would be good to get some perspective on where Monty was in the early years? Did he talk on time if not when did he say his first words? did you ever get a CARS score?

    Sadly, the professor’s comments in saying “Autism is untreatable and you should not try to treat it” doesn’t surprise me since autism has just become a lazy label for symptoms most doctors either are unable or unwilling to get to the bottom of.

    ReplyDelete
    Replies
    1. Ross, Monty was non-verbal when diagnosed at 3 1/2 years old. There was no CARS taken. After starting PECS, he started using single words when he was 4 years old.

      We used VB (Verbal Behavior) to encourage more speech, which did have a benefit.

      Delete
  5. Peter, it seems to me that potassium is necessaey for my daughters newfound sensory happiness. We give 100mg twice a day at 26kg. Do you think it needs to be more or more often? What do you think is the duration of the effect in hours?

    ReplyDelete
    Replies
    1. tpes, the effect might last for hours in some people. If 100mg is effective, I would not increase the dose, but you could vary when it is given. You only need the effect during waking hours. Your could try adding a third dose and see if it gives a further benefit.

      Delete
  6. Malarone update: I did not have the strength to do it for science and did not lower the dose. I am afraid that, if I am really killing something like Babesia, lowrring the dose might lead to big problems. We are still at the full dose and she is still doing a-ma-zing. we had a setback because there was a very stressful event at school but throughout that the gains remained, only anxiety went up for a few days. Today she complained of joint pain which she does from time to time and so far no doctor has been able to find a cause. In the end it really could be lyme disease.

    ReplyDelete
  7. multumim,Tatjana nu am inteles foarte bine poate din cauza traducerii,are progrese vizibile adica limbaj,comunicare,relationare?te cand poti sa ne mai tii la curent.....scuze

    ReplyDelete
  8. Her improvements are in receptive and expressive speech and sensory problems with sound, and cognitively able to comprehend more and to learn more like a child without problems.

    ReplyDelete
  9. She has improved in sensory problems, receptive and expressive language, cognitive capability and ability to handle learning like other children. Before she would get too frustrated too soon.

    ReplyDelete
    Replies
    1. Tatjana ,m-am gandit la INTRACONAZOLUM,dar este o problema ca inhiba blocantele canalului de calciu adica verapamilul,fiul meu fara verapamil devine agresiv,nu stiu ce reactie va avea fara verapamil,sper sa pot face rost de malarone aici in ROMANIA e mai greu de procurat....astept un raspuns

      Delete
  10. Peter,
    I am a long-time reader and am so grateful for you and for this blog. I have an 11 year old son with moderate autism who has always seemed brighter than his testing and academic performance demonstrated. I always feared he would never be able to read, however, he learned to read at age 9 using a multi-sensory Orton-Gillingham/Scottish Rite Take Flight/Lindamood-Bell based instruction method taught by a very experienced Certified Academic Language Therapist. What is amazing is that he now reads and spells at a 5th grade level; in all other subject areas, where he is instructed in class at a “therapeutic” school, he performs at a Kindergarten to 1st grade level. So he is unquestionably able to learn; however, it would appear that a multi-sensory teaching style is able to reach him where all other instructional styles have failed. We are currently attempting to utilize a similar multi-sensory instructional method for math and for other subjects. I would strongly encourage other readers to look into this, particularly if they have a child whom they suspect to be bright, yet who makes minimal academic progress from year to year. My son has Mixed Expressive Receptive Language Disorder, as well as general slow processing, in addition to his ASD diagnosis and this is the kiss of death for group instruction and learning in a group/classroom setting, albeit in a therapeutic school environment with extremely small class size. An example of how his language issues affect him: When his IQ is measured on a standard (language-based) IQ test, he scores as someone profoundly impaired (2nd percentile). However, when his IQ is tested on a non-verbal IQ test, he performs in the low average range. Because of this discrepancy, we always believed that there was a way to reach him and to teach him but always felt like we were running into a brick wall. Finally, we worked with the CALT who utilized the methods above (which are more commonly used with dyslexia/dysgraphia students) and my son developed phonemic awareness which has progressed to reading and spelling at grade level.

    ReplyDelete
    Replies
    1. Thanks for your detailed comment.

      It is clear that people with autism can be taught, but you have to find the right method. The fact that different children flourish using different methods means that parents have to get involved and be much more proactive than they ever dreamed would be necessary. But all that effort does pays off, as you have explained in your example.

      The easy option is to give up on people, because they have learning difficulties and just accept a poor outcome as being an inevitable consequence of their autism diagnosis.

      Good luck with math and the other subjects!

      Delete
  11. I think we need a lot of what I call ‘cross thinking’ in autism research. Its what we, parents, do best, because researchers are by design always focused on an area of research, whereas people like you, Peter, and to a much smaller degree
    people like me and other parents, try to solve the big equation. I think most people have seen the new ‘cured in 6 days of intensive antifungal therapy’ paper by Sidney Baker. I was curious and looked back at my daughters 2 year old OAT. It did have some elevated fungus values but not the ‘serious’ ones. I will follow up with a mycotoxin urine test now, just to leave no stone unturned. However, as a seasoned asd warrior I had the idea to google ‘malarone antifungal’. Turns out the ato portion of it has antifungal properties for Aspergillus and Fusarum species and perhaps even others. And so does...suramin.
    Will we ever really know what we are doing :-)?

    ReplyDelete
  12. It is interesting to compare and contrast the modern media's expanding definition of autism with the definition in this very straightforward VHS video made in 1990:

    https://archive.org/details/what-is-autism

    Translational research seems to be almost non-existent in the last several years, but especially in the last year and I guess autism is no longer a big deal to a lot of people. People in my own extended family know about as much about autism now as they did ten years ago, but any sympathy or compassion they once had is gone (I guess it has been normalized). I sometimes wonder if this expanding definition of autism, rather than the straightforward description you see in this 30+ year old video, is causing this normalization of autism to reduce the sense of urgency necessary to continue serious efforts into translational research into autism. All I see are GWAS (Genome Wide Association Studies) and maybe some neuroscience work that is a rehash of studies I read a decade ago as a parent, but pretty much zero translational research with the intent to provide useful therapies to people with autism. Part of this has been COVID making labs inaccessible for a very long-time as well as very challenging in recruiting human subjects, but really this drop off in urgency with respect to autism research seems to have started even before COVID.

    Really, it feels like we are all on our own sometimes. Autism seems to be like the flu which has magically disappeared in the United States with a 99% reduction in cases in the last year and apparently society seems to want to pretend that autism has had a 99% reduction in cases as well. On the bright side, a lot of people now know what it is like to be pinned at home with your children all of the time and it is driving them crazy while in my household this is just another day in the life of a parent with a child with autism.

    ReplyDelete
    Replies
    1. Tyler, I must admit that one explanation for the ever widening autism diagnostic criteria for autism, is that if you cannot treat it, broaden the definition to include a majority who don’t even want/need to treat it. This is of course rather cynical, but that is where we stand today.

      What I was told is that there is interest in developing therapies, almost regardless of cost, for precisely identifiable genetic dysfunctions that lead to a diagnosis of severe autism, like TSC (Tuberous Sclerosis Complex) autism.
      Therapies for treating biological features present in only some autism, that have no precise diagnostic test, are not of much interest.

      As you say, it feels like you are on your own (except in places like this blog), because you are on your own. The outcome in severe autism is almost entirely in the parents’ hands.

      Delete
    2. Yes idiopathic autism seems to be falling by the wayside here. The other problem is as you said this notion of everybody in the research world knowing that there the single gene theory of disease is largely false, but nevertheless when it comes to trying to figure out what drives autism, the research always seem to be geared towards isolating one gene (in mice) rather than investigating the combination of various suspected genes and environmental interactions at the same time. Just starting with two critical hits and then progressing to three would be useful in seeing how multiple genetic mutations or epigenetic abnormalities can affect the severity of autism. I have not really seen that at all as it goes against the spirit of the scientific method in that you try and isolate variables in a system so as to understand it rather than mix a bunch of variables up and then make Bayesian inferences as to what might be going on. Us parents needed answers yesterday and there just does not seem to be any initiative in pushing the research envelope which is likely what will be needed to go beyond the unorthodox methods of understanding and treating autism that us parents have been tasked with (aside from the alternative which is just to accept an awful outcome for their child and move on with life).

      Delete
  13. Tatjana,cred ca descoperirea ta este intradevar de experimentat,am avut ocazia anul trecut sa ii dau fiului meu cateva zile de FLUCONAZOL,in a 2 zi de administrare a inceput sa acuze dureri degestive cu reprize de plans si durere,de frica m-am oprit din administrare,e posibil ca efectul in primele zile sa dea o reactie herxheimer,daca e vorba de aspergillius atunci cred ca o sa incerc OMICRAL capsule pentru 6 zile sa vedem ce se intampla si va tin la curent cu ce se intampla cu fiul meu,speram sa gasim un leac de vindecare pentru aceasta boala....scuze daca sunt un visator

    ReplyDelete
  14. Here is some more interesting research linking IL17-A production in the gut to microglial problems in the hippocampus:

    Press Release:

    https://www.sciencedaily.com/releases/2021/02/210217151057.htm

    Paper:

    https://onlinelibrary.wiley.com/doi/10.1002/npr2.12162

    This suggests another avenue in how gut dysfunction can contribute to cognitive problems in the microglia of specific brain areas while sparing interactions with other brain cells such as astrocytes.

    ReplyDelete
  15. I think we need a new word here, dunce is just not specific enough. There is a pharma company that is collecting new words for a dictionary inspired by the rare disease community and I was tempted to post the below but I didn't. I'll post it here instead, but if anyone feels they have a better definition it's up for grabs at Ipsen.

    Define “Disableist"
    Person opposing treatments and similar attempts to alleviate disabilities in others. A disableist sometimes refers to their own experience (positive of disability or negative of treatments), generalizing it to others, or has the opinion that treating disability contradicts a movement towards a more inclusive world.

    How would you use “Disableist” in a sentence?
    Disableists are trying to convince people that even severe autism should go untreated, that it is a question of rare personality rather than a neurodevelopmental disorder.

    /Ling

    ReplyDelete
  16. Interesting neuroscience with respect to autism research has been scant lately but here is another interesting paper I found in the same day that concerns D1 receptors and learning:

    Press Release:

    https://www.sciencedaily.com/releases/2021/02/210224120349.htm

    Paper:

    https://www.nature.com/articles/s41586-021-03272-1

    One consistent feature with autism and intellectual disability in many studies is an excess of dopamine, an excess of dopaminergic receptors, or an excess of other receptors such as mglur5 which affect dopaminergic neurons in the striatum.

    This study is interesting because it shows how learning is impaired when D1 receptors in the hippocampus are blocked and that learning was restored when D1 receptors were unblocked or else the neurons expressing the D1 receptors were activated. The mechanism behind the plasticity related learning changes was novelty.

    One can imagine that if there is too much dopamine or too many dopamine receptors you get a situation where everything is novel and you never habituate to anything (i.e. repetitive behaviors). Of course the tradeoff would be hyperlearning which you sometimes find in high-level autists in certain domains.

    In the striatum, excess dopamine causes both the direct pathway (initiate action) via D1 receptors to be excessively stimulated (mglur5 receptors do the same thing) while also inhibiting the indirect pathway via D2 receptors (D2 receptors in are inhibitor neuromodulators) which is like hitting the gas (direct pathway) and getting rid of the brakes (indirect pathway). Risperidone of course primarily blocks D2 receptors (among other actions on other types receptors) and provides some benefit to some people with excessive dopaminergic activity short-term though it has many very nasty long-term side effects.

    This study shows how too much dopamine might explain some of the restricted interests in people with autism as they never seem to get bored with an activity and therefore learning would impaired because of their behavior, not because their neurons are incapable of learning (though other factors with neural communication independent of dopamine dysregulation might be a separate problem).

    Unfortunately, there are no selective D1 receptor antagonists that I am aware of so the best bet would be to limit dopamine into the brain and the only good way I know of that is BCAA therapy.

    ReplyDelete
  17. Dear Peter, a topic has popped up in my family these days, and it may be a good idea for a post on your blog. My husbands brother got his second son. The child is currently 3 months old and I can see a LOT of red flags pointing towards autism in him. Now, that may or may not come to be true. However, in a discussion my husband and I had, a question came up: what is the earliest one can start with, to call it so, medical therapy of autism? Of course even newborns can take probiotics, and vitamin D. But apart from that, what are the earliest steps one can take? And of those, what makes the most sense to be done first, what second etc. My daughter is 8.5 years on so what I had available, or you, back when your son was a toddler, differs so much. There are now so many diagnostic and therapeutic approaches available that I do not know what a recommendation would be for the first 2-3 steps.

    ReplyDelete
    Replies
    1. Tatjana, both Prof Ramaekers and Prof Ben-Ari are thinking along the lines of treating the pregnant mother, so this is Fetal Medicine. Dr Knut Wittkowski suggests treating tiny children preemptively with a version on Ponstan (a baby NSAID drug) so as to block the possible transition to severe autism.

      Bumetanide has been given to tiny babies. NAC (as Fluimucil 200mg) is given to 2 years olds.

      You could talk to Prof Ramaekers, send a tiny sample of blood for testing for folate receptor antibodies and then ask him about treatment with Calcium Folinate (Leucovorin).

      You could also approach Knut, he does exchange messages with one autism parent I know.

      Ponstan syrup is given to babies.

      If you successfully identified a baby with autism at 3 months, you might be able to have a major impact on the trajectory of their development. But, most people would think this idea is completely mad.

      Delete
  18. He was born c section at term very big, 4700. It was known from ultrasounds that he had some structural issues with his bladder. he was separated at birth from the mom and spent 10 days in the hospital for pbservation. he has been on antibiotics from day one and will be for the next year or so because the bladder problem has to be waited out so its preemptively. he is breastfed and does take probiotics. now to the red flags: he is very unreactive to noise. it takes a lot to get his attention. he doesn’t really follow people with his gaze. he doesn’t smile. needs to be held lying on the stomach and sleeps on his stomach as well. when my daughter was a baby I has this feeling that she wasn’t listening to what I was saying and I have that same feeling with him.
    However, the parents need to be told at a time when something I can show them is more...objectively there, and there is 0 need for them to be told at a time when nothing can be done yet anyways. So I was looking for that sweet spot where it makes sense for me to voice my fears. I think at this point I will wait to about 9 months at which point things will be more obvious and at the same time it will be pretty early on as well.

    ReplyDelete

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