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Sunday, 14 May 2017

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.










18 comments:

  1. A big congratulations to mighty Monty and family. It is not a small deal. Peter, you were so perfect about what a fair comparison should mean. Every progress, whether its mastering the piano or learning to draw a triangle or knowing who ma and dad are, is a big deal. Slow or fast, big or small, each improvement is a big deal. Monty is n=1, so are you, so is Ted and so are all of us. Wishing you and all of us our own unique progress.

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  2. Hi Peter and community,

    First, congratulations on your successes with Monty - he is where he is because of all your (and your family's) efforts.

    Second, just an interesting article on Metformin and autism that just came out. I'm happy to see my fellow Canadians again involved (albeit a different group that the Holland Bloorview team, this time its McGill and University of Montreal):

    https://www.sciencedaily.com/releases/2017/05/170515111614.htm

    AJ

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    1. AJ, Metformin is interesting and I did suggest it might help some people in an old post. It has an effect right at the start of the signaling cascade and so should have numerous metabolic effects.

      There is a problem though, metformin is also a "complex 1 inhibitor". Complex 1 is the most important (rate limiting) of the mitochondrial enzymes and if you have autism with mitochondrial disease, metformin may make things much worse. The only reader I am aware of who tried metformin, had a negative reaction.

      Your trial was in the fragile X mouse model.

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  3. Hi Peter,

    Thanks for the additional insights! I didn't know that, and its good you noted just incase someone with mitochondrial disease considered trialing metformin without realizing the risk. Also, I had remembered you had posted something on Metformin in the past.

    Peter, given how much you (and posters like Tyler) know, have you ever considered having an interview with key researchers in the area with questions suggested by posters (and of course yourself), and posting the Q&A as a blog post?

    I would love to read a Q&A of your questions and comments, and those submitted by knowledgeable posters, with researchers like Evdokia Anagnostou, Dr. Naviaux, etc.

    For example, "what led you decide to conduct a trial of X", for example Tideglusib, or "what avenues are you starting to pursue", or "what do you think of X", such as Bumetanide, Diamox, etc.

    It's just a thought, but I can just imagine the excitement around here if you announced that researcher X agreed to an interview with you and you listed your questions and asked for others to submit theirs. Given your insights, it might be just as informative for them as us!

    Thanks again for your response on Metformin!

    AJ

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    1. AJ, one reader of this blog has done what you suggest:-

      https://autismrc.com/2016/03/19/autism-research-connections-1-a-conversation-with-dr-richard-e-frye/

      I did suggest to Seth that he interview Dr Naviaux.

      It is interesting to read such interviews, but it does not really take you any further towards treating your child. Researchers have a very narrow interest (ie what they are working on) rather than what might help your child. They are not in a great quest to treat autism, it is just a job.

      I decided to focus on my own ideas for the translation of autism science into therapy. Since I have only one case to deal with, it is much easier than being Anagnostou/Naviaux.

      If you have ideas for interviews, contact Seth.

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    2. OK thank you Peter.

      On another note, I found this research paper from a few months ago, and if it hadn't been posted yet, I wanted to share it:

      https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5129651/

      It's a fascinating look at barrier alterations in the BBB and intestinal epithelium in ASD versus controls and Schizophrenia.

      I'm going to delve further into it and will post any interesting findings, but thought the community may also find it of interest if you hadn't read it before.

      "Genes associated with BBB integrity and function are differentially regulated in the brain of ASD subjects"

      "BBB tight junction proteins are altered in ASD and SCZ subjects"

      "Increased pore-forming CLDNs and decreased barrier-forming TJ components expression in the intestine of ASD patients"

      Hope this is helpful!

      AJ

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  4. Hi Peter, congrats to you, your whole family and especially to Monty...I am sure with your guidance, he will continue to do really well. My daughter is going to be 6 soon and it breaks my heart to keep repeating Foundation stage because she is just so delayed cognitively and has zero speech. We are trying several interventions but the gains just don't stick. So we have been advised by several parents to consider Anti epileptic drugs to address probable abnormal brain activity not necessarily outright seizures that might be causing the loss of gains over and over again. Would love to know your thoughts on this? I have asked my neuro for a trial of bumetanide and will buy it myself if she doesn't agree. But is there anything else I could try for cognition? Thank you for your time. - P

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    1. Piracetam or steroids (eg prednisone, prednisolene) can sometimes kick start speech.

      Some may never speak (see Carly Fleischmann) yet can communicate. Try a good AAC program like Proloquo2go

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    2. Many may scoff at this, including myself a few months ago, but after reading about it...We are going to go for Hyperbaric Oxygen Therapy in a few weeks. It's expensive but considering my son's ASD is a result
      of neonatal hypoxia/ischemia we are hoping to see some lasting, real results. Medications, ABA, supplements...they are temporary fixes for him. Everything seems to decrease in effectiveness over time. I want to treat the physical problem.
      See the McGill University CP study. I have read forum posts where parents reported a decrease in epileptic episodes after HBOT as it has a tremendous effect on brain perfusion.

      Best wishes for your daughter~
      MKate

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  5. Also, Reg bumetanide, is there a test / symptom to determine if the child likely to have high chloride? Thanks a bunch. P

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    1. P, there is no test for intracellular chloride. It is a case of taking bumetanide for a month or so and hopefully after a couple of weeks you will begin to see a marked improvement. Some anti epileptic drugs do improve autism in some people, but there can be side effects with such drugs.

      You have a 40-50% chance of your daughter being a good responder to bumetanide. So it is well worth making a trial. You do need to monitor potassium levels and give extra fluids.

      Delete
  6. Thanks for replying, Peter... think I'm going to try bumetanide...any tips on buying it without an rx? P

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    1. Many people buy online from Mexico, Miccil is the Spanish name, just use google.

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  7. Oh wow going to google right now thank you so much.

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  8. How soon do the results start to show (if it works)?

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    1. Hopefully after a couple of weeks you will begin to see a marked improvement. The researchers suggest you keep trying for a month or two to be sure.

      Bumetanide lowers chloride, but it will only be effective if it lowers it sufficiently. In some people it may appear ineffective because it was not strong enough. New drugs that work better in the brain are being developed. If the child has an inflammatory condition (GI problem, allergy etc) this raises the level of chloride and makes it less likely bumetanide will be potent enough. Best to make trials when GI problems/allergy is well controlled.

      Delete
  9. Thank you for sharing a part of your story

    ReplyDelete

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