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Friday, 28 March 2014

How is Monty these days?


Some readers are more interested in how Monty, aged 10 with ASD, is doing these days, rather than in all the scientific research.  This is a post for them.

At school things are moving ahead both academically and socially.  In September our American/Greek ABA consultant visited us; one important point she made was that we should get him to interact more concretely with the other kids at school, and not just superficially. 
He has made great strides forward in this area and now greets all his classmates and the staff members by name.  In the playground he is trying hard to join in the soccer games and the other activities.  This works well, the more he engages with the other kids, the more they want to engage with him. 
When a group of girls were having a problem with a particular boy, one girl went over to fetch Monty to help them; and he did, he made the other boy go away.  This is quite a change - to be giving help, rather than receiving it.
We started with cursive (joined-up) handwriting. This actually went much better than anyone expected, and he now even does his school spelling tests in cursive.  It all looks amazingly neat.  Handwriting is a pretty good indicator of how well under control (or not) autism is.  When Monty had problems a couple of years ago, his writing became terrible.

We had a nice surprise letter from school, telling us how happy they are with his progress and how happy he is; this from the same teacher who first noticed how his behaviour changed when he started Bumetanide.  That was the first ingredient of what became his Polypill.

My favourite benchmark is his piano playing.  Here again things are progressing nicely, the special needs piano teacher is now getting me to photocopy the music used by Monty’s NT 13 year old brother, since we have moved to a more advanced level. When we started with this teacher only 18 months ago, Monty was sometimes screaming and even hitting her; completing the 40 minute lesson was a struggle.   Back then the music was very basic; it no longer is.  As for behaviour, he is now a model student and walks his teacher to the front door at the end of the class.
We are still using a scooter rather than a bicycle.  At the weekend, Monty managed to scoot 5 miles/8km around a lake overtaking the walkers and against a constant stream of joggers coming the other way around.  He did it all again three days later.  This is quite an achievement; kids with ASD appear to lack many natural instincts, which we usually take for granted. Whether this will eventually lead to being able to drive a car remains to be seen.

Yesterday I finally had my teleconference with the European Medicines Agency (EMA) regarding Monty’s Polypill.  Rather as expected, we are worlds apart.  In essence, I should do some further observational trials on other kids with ASD.  This is rational, but where are the ASD doctors to do a trial with?  As for the blog readers who now want to trial the prescription-only-medicines in the Polypill, they should apply to the “compassionate use program” of their national drug regulator, to access the drugs their local doctor refuses to prescribe.  This sounds great in principle, but in practice?
All is not lost, elsewhere on this blog we have already identified a handful of clinicians, who could genuinely count as an “ASD Doctor”.  So let’s see if any of them want to put the Polypill to the test, using my provided biomarkers, to identify the target sub-type of autism.  I will refer to my Dean's List.

As I said to the EMA, I am not so concerned since I already have access to the Polypill and, in Monty’s sub-type of autism, it works a treat. So whereas they think I am at the start of the journey (to produce a drug), I feel that I have already arrived.  It would be nice if some people from the public sector would now take some initiative.
 
 
 

6 comments:

  1. Peter,
    It is great to know.
    Yi

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  2. Lovely to know your son is doing so well. I look at your blog every day and to be honest so much of it is over my head - but it pushes me to try harder. The nerd cloud would be a great place to be......
    fi

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    Replies
    1. Thanks for the comment. In the end, it is most important to be happy. Today I was pleased that Ted, Monty's elder brother asked me why Monty is so happy at the moment; "he never used to laugh like this ... are you giving him something to make him happy?". The answer is of course yes, I am. In Ted's class at school there are two ASD boys in the nerd cloud and they are not happy at all. They are high functioning but socially excluded. It is a great pity, because I think this is treatable.

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    2. I also know a lot of HF Aspergers youngsters who are not as happy as my classic Kanner type daughter and would not trade this to be in the cloud. Unfortunately the education system here in Glasgow is doing it's best to wreck this for her and we are embroiled in a battle to make sure secondary provision after the summer is not catastrophic for her mental health. It's not the subject of your blog - but would be interesting to know your views on education one day. The kind of badly funded integration we have here seems to take no account of the neuropsychology of many autisms and looks like a blueprint for long term mental health problems, especially in girls.

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    3. Inclusion is a nice idea and is definitely achievable in nursery school. At Primary school if the teachers want it and the kids are mainly a nice bunch, it can work great. It works great for us, but we have a tiny school with tiny classes and a 1:1 assistant. At Secondary school it stops being cool to be nice to others and what is considered “ normal” behaviour changes completely. This is why I am very happy that I agreed with our school to hold Monty down in a lower class. He is two years older than his peers, this allows him to catch up academically, but more importantly, stay in a more caring environment for two years longer. Also, being older, means being bigger; bigger people tend not to get picked on.

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    4. Hi Peter. I strongly agree with your last sentence - my father has Aspergers and his social skills are painfully bad, but he was not bullied in high school. The fact he was six foot two by age 15 may have had something to do with that! Speaking as a woman who was diagnosed with Aspergers as an adult, I found primary school to be okay but high school was hell. Perhaps if I had had a diagnosis then it would have been better? At any rate, the teenage years are fairly awful for most people but those on the autism spectrum seem especially vulnerable.
      NB - sorry to post as anonymous, but your blog doesn't seem to give me the option of using a screen name and my email address.

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