Wednesday, May 16, 2007
The Autism Shield
One of the quandaries faced by parents with autistic children is how much to say about the condition to family, friends and strangers. When you first receive the diagnosis, in all likelihood, you will know very little about the condition and exactly where on the autistic spectrum your child sits. You will have a CARS score or some such thing, but that's more an indication of severity, rather than an accurate guide as to what your child's abilities might be.
For instance I've heard from a very reliable source that some kids with a high CARS score can communicate better than other kids with a lower score, when you would think the opposite was true. So in a very real sense, you are somewhat in the dark about it and the only illumination comes from reading all you can and from actually starting the journey with your child. One of the saddest things I've heard is of the occasional new parents, who after receiving the diagnosis, come to the autism school my daughter attends, are offered a place in the early intervention program, only to turn it down because they, for whatever reason, cannot accept the diagnosis for their child, delaying the start of their journey.
So it makes it doubly hard to explain to family and friends because one of the first things everyone wants to know along with can it be cured (it can't) is how affected is your child? The only real answer is to wait and see, but in this age of instant everything, no one wants to hear that, so you explain as best you can what might be the case and you talk about your child's current behaviours. But what happens when your child starts behaving, well, oddly in front of strangers? Naturally you want to explain as best you can and very often, other than ignoring any looks coming your way, the best thing you can think of is to say your child has autism, it's like a shield you can protect you and your child with.
Personally, I'm loath to use this autism shield, especially in front of my daughter as I wonder about the effect it might have on her, if she were to ever wonder one day exactly why does dad say that? Not because I'm hiding her condition from her, but I want her to be able to think she is just as good as everyone else. But other parents often do say it and I completely understand the reasons why, it can be a real circuit breaker. But like all things everywhere, the autism shield can be prone to failure.
A friend of mine with an autistic son was at a well known local restaurant for a Sunday lunch. Like any kid in a restaurant, he got restless and wandered off a little way. At least as far as another table, where a man was seated with his car keys resting on the table. The keys caught the little boy's eyes and he reached out and touched them, nothing more and the man snatched the keys up and called out to my friend to control his child. My friend apologized and explained that his son had autism and meant nothing by it. The man retorted that he didn't care, that he was there at the restaurant to have a good time and my friend's son was spoiling it for him. My friend walked over to the table and reached out his arm to shepherd his son back to their table when the man leapt out of his seat and punched him in the eye, no warning, no provocation.
The police were called and the man was given a very stern lecture by a police women who had some coincidental experience with autism, but she reported to my friend that this person simply didn't give a fig. I ought to white hot with rage, but I'm not. I've seen it all before with my own daughter, in a pub bistro on a Sunday afternoon when the bistro manager took objection to her touching a fork on another table in a nearly deserted dining room. The shield didn't work then either.
Autism Awareness Week
The post I've got for you today is in a similar vein to the topic I wrote about, just with a lot more humour.
For instance I've heard from a very reliable source that some kids with a high CARS score can communicate better than other kids with a lower score, when you would think the opposite was true. So in a very real sense, you are somewhat in the dark about it and the only illumination comes from reading all you can and from actually starting the journey with your child. One of the saddest things I've heard is of the occasional new parents, who after receiving the diagnosis, come to the autism school my daughter attends, are offered a place in the early intervention program, only to turn it down because they, for whatever reason, cannot accept the diagnosis for their child, delaying the start of their journey.
So it makes it doubly hard to explain to family and friends because one of the first things everyone wants to know along with can it be cured (it can't) is how affected is your child? The only real answer is to wait and see, but in this age of instant everything, no one wants to hear that, so you explain as best you can what might be the case and you talk about your child's current behaviours. But what happens when your child starts behaving, well, oddly in front of strangers? Naturally you want to explain as best you can and very often, other than ignoring any looks coming your way, the best thing you can think of is to say your child has autism, it's like a shield you can protect you and your child with.
Personally, I'm loath to use this autism shield, especially in front of my daughter as I wonder about the effect it might have on her, if she were to ever wonder one day exactly why does dad say that? Not because I'm hiding her condition from her, but I want her to be able to think she is just as good as everyone else. But other parents often do say it and I completely understand the reasons why, it can be a real circuit breaker. But like all things everywhere, the autism shield can be prone to failure.
A friend of mine with an autistic son was at a well known local restaurant for a Sunday lunch. Like any kid in a restaurant, he got restless and wandered off a little way. At least as far as another table, where a man was seated with his car keys resting on the table. The keys caught the little boy's eyes and he reached out and touched them, nothing more and the man snatched the keys up and called out to my friend to control his child. My friend apologized and explained that his son had autism and meant nothing by it. The man retorted that he didn't care, that he was there at the restaurant to have a good time and my friend's son was spoiling it for him. My friend walked over to the table and reached out his arm to shepherd his son back to their table when the man leapt out of his seat and punched him in the eye, no warning, no provocation.
The police were called and the man was given a very stern lecture by a police women who had some coincidental experience with autism, but she reported to my friend that this person simply didn't give a fig. I ought to white hot with rage, but I'm not. I've seen it all before with my own daughter, in a pub bistro on a Sunday afternoon when the bistro manager took objection to her touching a fork on another table in a nearly deserted dining room. The shield didn't work then either.
Autism Awareness Week
The post I've got for you today is in a similar vein to the topic I wrote about, just with a lot more humour.
Labels: understanding autism
6 Comments:
I read that rice bran oil helps in the diet of kids with autism. It is because of the gamma-oryzanol that is only found in this oil. Gamma-oryzanol is a more powerful antioxidant than vitamin E. Hope this helps someone.
That was a good one Neil. Code words in families are not just fun but very supportive! But then you know all this stuff.
What does autism have to do with a child innocently reaching for some keys on a table?
Hi sportchick, thanks for that. There is a lot of thinking about diet as a way to help moderate autism and I think that someone who eats healthily and gets a good nights rest is well on the way.
Hi tanna, every family knows this stuff and it makes them well connected to each other.
Hi anon, the short answer is nothing. The longer version would be that this is as the story was related to me, there may have been other things going on, or the parent may have said it in the mistaken belief that it may have averted any future problems.
I think a code within families would be very helpful when they're younger.
As for the public incident, we have had too many of those to list. They used to upset me greatly until I examined the situations more closely. Nowadays I take the attitude that as my children learn and grow, their capacity to empathize with people also expands such that is not the remotest possibility in my mind that when they're adults THEY will be the most warm hearted people on the planet.
Best wishes
Hi mcewen, I often think some people's reactions say so much about themselves, both good and bad, Sometimes others can be curious like the time M complimented the mother of a baby how nice her baby was (at least she didn't try to pick the baby up this time). The mother seemed to be following us after that even finishing up in the same checkout line just I was teaching M how to wait our turn, I'm sure she wanted to ask about M.
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