Notes from the edge

A parent's experience of Asperger's Syndrome

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.

[4] Comments
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Comments:

Another parent of a child with Asperger's and in all honesty I am probably somewhere on the spectrum myself... I can't begin to tell you how much I appreciate what you wrote here - in US, mainstream view of autism is somewhere along the lines of autism being something worse than death itself, to be cured at all costs... I really can't subscribe to that myself and I really fear the day when something like prenatal diagnostic test for ASD becomes available. In spite of being firmly pro-choice, I look at that as genocide waiting to happen :-( Finally, I suspect you might have read Simon Baron-Cohen's works on ASD already, but if you did not run into this little pearl before, I think you'll enjoy it: http://www.geocities.com/CapitolHill/7138/lobby/disability.htm

Posted by Me on June 14, 2007 at 10:16 PM BST #

No, I'd not read that specific article - very interesting- thanks. I especially like the "Folk Psychology" / "Folk Physics" analysis. And I wholeheartedly agree with the thrust - quoted from the article: "Rather than conceiving of autism as a deficiency, it instead considers if autism might be better characterised as a different cognitive style...... Using the term "different" rather than "deficient" may seem unimportant .... But this small shift could mean the difference between whether the diagnosis of autism is received as a family tragedy, akin to being told that the child has some other severe, life-long illness like diabetes or haemophilia, or whether the diagnosis of autism is received as interesting information, akin to being told that the child is right or left-handed. " PS - I'll be adding some observations about the impact of diet at a later date.

Posted by Jon on June 15, 2007 at 09:20 AM BST #

I too really appreciate what you've said here... My 4yr. old is just beginning the process for ASD diagnosis (specifically we believe Aspergers), she's had developmental/medical concerns since she was an infant & the puzzle pieces really just 'fit'. We need her to be in a preschool more suited to her needs (less kids, more teachers, etc. ;)) so decided to start the process now. The most 'entertaining' of her issues is that she's had all the states & capitals memorized for some time now, not reading - just by shape, she's also working on the countries & oceans via a globe & flags via a book... she just loves all things geography. She has a lot of the more unpleasant aspects too, including some self-injury & extreme OCD & sensory issues but for the most part, I extremely think at least with her that this is not 'devestating', in fact I would prefer her to 'mainstream' & 'normal'. She is so interesting and amazes me everyday even in the uneasy times. I get so frustrated that at every turn it sounds like such a terrible, terrible 'disease' and I just wish there were more positive stories out there... so thank you for what you wrote. :)

Posted by Chera on June 17, 2007 at 11:19 PM BST #

I hope you enjoy the latest post - http://blogs.sun.com/edgenotes/entry/asperger_s_positive_aspects - and that it will give you more confidence about the postive aspects. Asperger's people aren't "wrong" - just different.

Posted by Jon on June 18, 2007 at 09:14 PM BST #

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