I have moved over to WhittereronAutism.com. Please follow the link to find me there. Hope to see you after the jump! :)

Thursday, July 26, 2007

Is it all a big lie?

One of the many failings of autistic people, from society’s perspective, is their apparent lack of interest in people. They appear to lack many of the attributes of sociable behaviour. [translation = check out DSM IV] Part of the matter lies in some people’s human nature, mine, for instance. For instance, when my children were evaluated for autism, I was not particularly surprised that they didn’t know their own last names, address or telephone number. [translation = they only knew this information if they were prompted to sing it, and I don’t think the ‘experts’ knew the right tune.] What did surprise me, was that they did not know MY first name, MY favourite colour, or MY favourite food. [translation = how outrageous!]

At the time, which seems several centuries ago, I assumed that they just couldn’t find the right words, [translation = speech delay] or it was one of those touchy subjects that invoked a meltdown. [translation = triggers] The implication was, that I was off their radar, as were my personal preferences. [translation = of no interest] To have someone, an expert, explain that you do not exist in your child or children’s world, is sobering.

So many clues had been available to me, such as when they had to draw their mother at school, but wouldn’t. [translation = major meltdowns] I chose to see this as ‘couldn’t,’ because I knew that holding a pencil and touching paper was abhorrent. [translation = tactile defensiveness and poor fine motor skills]

I am aware now, of the many excuses I made for my self, but at the same time, the clues had to be balanced against the other evidence, such as their ability to name every dinosaur that ever set foot on the planet. [translation = and pronounce it correctly] Their enthusiasm for their admittedly narrow interests, was all encompassing, and misleading to a dim witted parent. [translation = none required] How could I be off their radar when their constantly required me to carry them? [translation = both at the same time until the last two years] They couldn’t be undemonstrative when the hugs were so often and demanded with such desperation?

The whole subject of autism was a locked box to me. [translation = steep learning curve]

I am prompted out of my reminiscing daze by my youngest autistic, speech delayed son.
“Do wimmins have wallets?” from the child who loves the letter ‘w’.
“Some women do.”
“Do you have a wallet?” A personal question, directed at me, a social question.
“I do!”

Now he opens the box for me. I hereby declare that it is safe for me to drop off the planet and join the dinosaurs.

And on the subject of "lying."


Heidi said...

You hit the nail on the head again. With Sami, I couldn't understand why the paediatrician was so concerned about his language at age 2 1/2, because to me, he had a huge vocabulary. Ok, it consisted of only animal names, but still... He could name 100 different animals but he didn't know how to ask for a cup of juice. Autism is like this - just when you think you have figured something out, it transpires that you still have so much to learn.

Anonymous said...

My Dr knew the eldest was delayed at 18mths.. I knew afterwards she'd asked me all the right questions.

She told me at the age of 2 something was wrong. 2.5 we had our first dx of Mild Pdd... that's another story.

The youngest I knew was speech delayed at 18mths but we didn't have behaviours yet.

It's a weird one. And never assume they don't like people and aren't social. It's quite often the opposite. Mine are very social... even when the little one is ignoring you until he's use to you being in his space.


Joeymom said...

Joey had no name for me when he was very little. It was very strange, but I wouldn't say I was comletely off the radar- I was just a given fact. There was no need to have a name for me. I was. That was enough.

One reason we had some trouble getting Joey help is that he IS social and sociable, just in a very limited way. Joey loves people and loves the world. Fortunately, the world has reacted by loving him back, for the most part. His doctor nearly freaked when she saw the diagnosis- the comment was something to the effect of, "but he's such a sweet, loving little guy!" She's fought some monumental battles for us since then, especially against insurance who don't want to pay for any therapy or interventions.

Anonymous said...

Our son is so echolalic and it started right when we started getting concerned about the speech delay. It took us several months to realize that it was in fact echolalia and part of the speech problem.

Fortunately, we have been his number 1 favorite toys for quite some time.

Anonymous said...

Thank you for visiting my blog today. I blog I believe you were meant to see.

How wonderful to have found you and your fellow commenters (bloggers). My daughter, Amy, is 7. She was diagnosed with autism in October 2003. A relief after 18 months of assessing, examinations and wasted fuel. I have blogged about her on my page.

I enjoyed reading your latest blog. It rings so many bells with me and I look forward to visiting this blog again.

Crystal Jigsaw

Sarah said...

This should be required reading for at least some physicians.

It's never just a list of criteria. It's far more complicated than that.

Liv said...

Oh, how we could commiserate. My son has been undergoing his annual testing in speech this week. I too have wondered sometimes how it is that so many social constructs baffle him, but he knows everything ever said or written about anything Thomas the Tank Engine. And yet he loves, loves big. Things (thankfully) have improved dramatically at my house in the past year. This sometimes strange blessing has taught me so much.

Anne said...

It took me a long time to learn that if I wanted my child to know something like me favorite color or favorite food, I would have to say it. If I wanted him to know that something bothered me, I would have to say it. It seems like it would be easier than it is -- we expect people to just notice this stuff.

Jeni said...

Autistic kids unsociable? What? Not the two little ones who live with me? Ok, Princess Maya sometimes gets very selective about the venue in which she will be sociable, but overall, she is quite friendly. Kurtis -well he's just too little to know any better just yet. When we go to the grocery store - or Walmart - anyplace with a cart that Maya can be seated in -she starts scanning the aisles immediately and as soon as she sees another patron, you begin to hear "Wan' see the people?" or "Wan'see the kids?" Repeatedly! And we tell her "Well, look - you can see them."

Mary P Jones (MPJ) said...

I have been on vacation, fallen behind in commenting and am now following my own rigid path to catch up. I couldn't bear to just skip a post, so you are getting your comments a month late...

I never had any doubt that my son loved me and knew me, even though he couldn't express it. He tells me what my favorite things are by the way. And apparently, I am as enamored of his favorite cartoon as he is...

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