Friday Oct 05, 2007
Is it really 2 months since I last posted to this blog: blame Facebook - too much fun to be had.
A couple of things I wanted share: I wanted to share a great article on this morning's BBC Radio4 "Today" programme; it's purportedly about the recent rise as autism in literature, but is also a good insight from a parent (who has written a book about his son) and Prof. Simon Baron-Cohen. Its starts about 8:30 into this link
Talking to a friend last night reminded me about an approach to helping the Asperger's kids that we did some work on a couple of years ago. The concept is "Social Stories". You can find various references (and books) about it - such as Polyxo.com (great name!) or The Gray Center , which is the resource we used. It's essentially about helping the autistic child to plan & rehearse for problematic social situations. What is particularly interesting is the very prescriptive approach to the structure of the stories. But it seems to work very well - I have met other parents who say it has been enormously helpful with some difficult situations.
Thursday Jul 26, 2007
One of the things that seems to be significant with all Autistic Spectrum Condition (Apsergers, austism, ADHD, dislexia... ) is diet. Before I go on - this is an area that is based on some inconclusive science -there has not enoguh large-scale research. Moreover, it is clear that a number of people see this as a bandwagon for commercial gain - try
this google search. There is some good stuff in here, and some useful books, but some phrases like "reverse autism"... "cure for autism" ... sound alarm bells to me.
Firstly - let's recognise this is a condtion, not a disease. Of coure, severe autism is very hard to deal with - but mostly this is about differences from what we accept as normal - so words like "cure" are deeply offensive. (As an aside, I reccommend the "Institute for the Study of the Neurologically Typical": which holds a satirical mirror up to "normals".)
A more significant caution, is that this is an area touched on by Dr. Andrew Wakefield (of MMR & Autism infamy). But that is a whole other issue.
Research into autism & diet seems seems to have a little more substance, and I'll describe our empirical experience. But you need to make up your own mind.
With those caveats said, it seems that diet can play a role in reducing some of the symptoms or side effects. Principally, it is to do with gluten and casein, proteins from cereals and dairy. As I said you can find a lot of the background on the web, but the theory seems to be that is that when these proteins are broken down into peptides in the gut of someone with ASC, these peptides can enter the blood, rather then being broken down into amino acids. They then act like morphine in the body; and can be detected as opoids in the urine ('Leaky Gut' and the Gluten- / Casein-Free Diet')
We first came across refrences to this Luke Jackson's excellent book "Freaks, Geeks and Asperger Syndrome" . Our minds were made up, when we showed Luke's list of physical symptoms to Calum; we knew about the bad skin and bad breath, but Calum said he felt most of them, such as gut pains.
This was shorty after Calum was diagnosed. Over the summer holiday, we started Calum on the Gluten & Casein free diet (it takes several weeks). When he returned to school in September, all his teachers were asking what we had done: he was calmer, more focussed, less voluble in class (and has continued to be so).
Let's be clear: Calum is still Calum,and still has Asperger's (and we love him for that). But some of the distracting effects had been reduced.
It really came home to me a few months later, when I was editing some video of Calum, taken shortly before we changed the diet. In the video, you could see his eyes had dilated pupils and were darting around at random: compared to how he is now, he was "high".
I'll say yet again - you need to form your own opinion. We know what we have seen, and we are not unique. I will reference some further research papers that I have been reading:
Monday Jun 18, 2007
A couple of comments that I received to my last post to this subject made me feel that I need to add some interesting and positive thoughts about ASC.
- This entry on wikipedia - People speculated to have been autistic is a good collection. OK - it's Wikipedia, and as they say themselves "This section does not cite its references or sources." (actually, it does), but it's a thought provoking (in a fun way) read.
- This led me to what looks like a great "Aspie" web site / forum at Wrong Planet- managed by an "aspie" with his own feisty views.
- Did you know that Simon Baron-Cohen (researcher) is first cousin to Sacha Baron-Cohen (comedian of Ali G & Borat fame)? Sounds like an internet myth - but I think the name kind of validates it. It also makes me wonder.....
Thursday Jun 14, 2007
What I am going to write about in this post is a parent's perspective and experience of having a child with Asperger's Syndrome.
There is a mass of stuff on the 'net about this: there are the medical and academic articles (which can be quite grim): I added links to some of what we think are the best sources in a previous post, including references to some of Dr. Temple Grandin's articles.
At the other extreme are sites offering everything just short of a cure (as if there was such a thing). These sites are becoming increasingly prolific. As the incidences of all types of Autistic Spectrum Disorders increases, while the cause is still uncertain, more and more parents are becoming desparate. Clearly there are some who see this area as a business opportunity. This is exacerbated by the fact that there is no real mainsteam "treatment", which leaves parents prey to what could optimistically described as "alternative medicine".
Somewhere in the middle are the support and self help groups, such as the UK's National Autistic Society and the Asperger's Syndrome Foundation. We also found inspiration from the books and TV programme of Luke Jackson - explaining what it was like from a teenager's perspective.
It may be best if I explain this in the context of our son Calum, so you can see specifics, and real examples.
Asperger's Syndrome
As a child at kindergarten, it was suggested to us that Calum had hearing problems - he would often ignore the rest of the class and prefer to read. When tested, his hearing was fine. At infant / junior school, some teachers became aggravated at the way he would speak out in class; also, his handwriting was illegible.
Eventually, he was referred for diagnosis at about age 9 . Having run some tests, he was diagnosed as having Asperger's Syndrome.
Asperger's is described by the experts as being on "on the Autistic Spectrum". Spectrum seems to be the right word - in the rainbow sense, not a range. As well as classic autism, there are other versions such as Pervasive Developmental Disorder, OCD and some versions of ADHD.
From research we've done, conferences attended, talking to professionals, and to adults with AS, it sees that:-
- Autistic Spectrum Disorders (ASD) are not disorders (I prefer Autistic Spectrum Conditions - ASC). It's simply that these are people whose brains are wired differently.
- The common area seems to be with processing information, especially sensory - auditory, visual, touch....
Calum is 80-90%% typical Asperger Syndrome - if there is such a thing. You can read some of the symptoms in this document:. The key areas are:
- Issues with Social Interaction & Communication
- Imagination & Flexiblity of thought
- Difficulties with Sensory Stimuli
- Motor Difficulties
- Organisational Difficulties
But Calum is not a problem - he is justeccentric; which is pretty typical. And this is nothing new - people who are suspected to have Aspergers include Einstein, Bill Gates.... (Plus many of the geeks and nerds you will have ever come across.)
In Calum's case we see:
- High cognitive (logical) thinking; low intuitive (emotional). (Most/all AS kids have to learn how to read emotions from peoples' facial expressions as if they were learning a foreign language).
- That also leads to poor social skills; poor listening skills, knowing what is appropriate when, etc.
- High functioning (high IQ) - this often means they learn how to compensate social and other issues using cognitive strength.
- Can be obsessive about interests - hobbies etc. (for example, in Calum's case it's reading - we have to search him for books when we go out, remove his lightbullb at night etc.)
- Auditory processing issues - can't filter in noisy environments. A classic thing with ASD kids is that at the end of class, in the hubbub, they don't hear the teacher say "and tonight's homework is....." ( If you want to get their attention, you need to start the sentence with their name)
- Poor fine motor skills -e.g. illegible hand writing
- Hypersensitivity (to some things). Calum is not too bad here. We are lucky - some AS kids can't stand being touched, hugged...
- Conversely, poor body awareness: "why are you wearing that heavy jumper in this 85 degree heat.? Aren't you hot?"
- A "tick" or "tell" - tugging, scratching.....
- Taking things literally. Again , Calum is not too bad here, but many AS kids don't "get" jokes; they take things literally - (we even have dictionary of idioms for AS kids! Expressions like "it's raining cats and dogs" can be very confusing!)
- They don't "get" team sports. I thinks it's a combination of the auditory processing and the lack of intuition,
If these sound like problems, they are not. As I said, most people simply see Calum as eccentric and not a little entertaining; he is knowledgeable; and has an extensive vocabulary. This is a kid whose History teacher admits that he often knows more than she does, but who cannot tell you what day of the week it is or who else is in his class at school. He's not quite a nerd, but you can see his ideal career will be a professor or a librarian....
More about Calum, strategies we have adopted, and what we are still learing, in a later post.
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