Monday, May 08, 2006


In the last post, I wrote about the dangers autistics may have of being taken advantage of by those who may be ethically challenged. Then I saw a story out of Toronto that illustrates the physical peril autistic children may find themselves in without appreciating the danger. The caretaker of a 12 year-old autistic boy only left him alone for a few minutes. That was enough time for the boy to fall to his death from the apartment building they were in.

What was the young man doing by the window? Did he have any idea that there was any danger? That we have no way of getting the answers makes the questions all the more frightening. And now a family must deal with an inconceivable loss. I can’t begin to imagine their pain.

As parents, we struggle with what is the right thing to do for our children. My wife and I can “child proof” the house we live in to some extent, but can we “child proof” the world? And what happens when we’re not there to watch over our son?

Looking at the words I just typed, I have to admit that it all sounds terribly melodramatic. I can’t help thinking, however, that the melodrama has become quite real for the family of a 12 year-old boy in Canada. And I am so fearful because we seem to see these news items too often.

Thinking about all of this, I went back to re-read a couple of posts I wrote last October, trying to explain why some of us go to lengths others see as extreme. This is part of what I wrote back then:
Yes, I’m desperate. I’m desperate to help my son achieve a measure of independence. I’m desperate to prevent my son growing up to be nothing more than a victim. I’m desperate to see my son grow up with no barriers to hold him back. In other words, I’m a normal parent.

Of course, I meant “normal” in the sense of “ordinary” or “typical,” and not as a synonym for “neurotypical.” I think the basic yearning to keep one’s children safe is common to most parents, including parents who are, themselves, “on the spectrum.” If I was to write that same post today, I might drop the word “normal,” but I would otherwise say the same thing.

Zilari left an interesting comment to my last post, respectfully pointing out that danger avoidance can be taught without the need of a “cure.” In general, I can’t disagree. That kind of education is necessary for all children, particularly autistic children. The effectiveness of that training, however, is sure to vary from child to child, just as similar efforts with neurotypical children vary in result.

Moreover, I’m certainly not suggesting that danger avoidance is the only reason to seek a cure/remediation/abatement of symptoms/whatever term may seem appropriate. Intervention is a decision that can only be made for individual children by weighing a variety of considerations, including all known risks.

I pray that I’m not doing anything to change the person my son really is. That being said, I will gladly join in any effort to change the world to be a friendlier and safer place for all of its inhabitants. Considering, though, that mankind has tried to recreate Eden or create a utopia from the beginning, I don’t think it imprudent to do whatever I can to help my son reach a point at which the world is not a confusing and scary place ⎯ a point at which he recognizes the good and the bad, the beautiful and the dangerous, and all the nuances in the world around him.


Blogger Zilari said...

Thank you for taking my comment as I intended it: that doesn't always happen, and whenever I post anything anywhere I try to make sure I'm fully prepared to explain, back up, and stand by what I stated in case of a misunderstanding. But despite being "prepared", it is always pleasant to be properly interpreted the first time. :)

I completely agree with the notion of a sort of compromise: do whatever we can to make the world better, but at the same time try to equip people with survival tools necessary to operate in a less-than-ideal world as this world evolves. Autistic people can do very well when equipped with autistic survival skills -- like being allowed to learn as we learn best (though it might look a bit different or exhibit less consistency than a parent might look for initially as a sign of progress), and being taught to self-advocate when necessary, and of course, how to avoid certain forms of danger.

5/8/06, 11:48 PM  
Blogger kristina said...

The decisions we parents have to make our for our kids' welfare, safety, education, future----and maybe they may not like them, but we have to do what we as parents have to do.

5/9/06, 1:13 PM  
Blogger María Luján said...

Hi zilari
You say
like being allowed to learn as we learn best...and being taught to self-advocate when necessary, and of course, how to avoid certain forms of danger.

I agree completely. But how EXACTLY? under what conditions? In my personal experience, idea of danger and self advocate (as much a child of 5 years can advocate for himself) appeared as concept not so difficult to adquire after I detected and treated a lot of comorbilities in my son. To learn any skill you need the ability of attention . For my child comorbilities treatment gave him the tools to begin to pay attention.
Really this situation is a tragedy and you presented it with a lot of sensibility. Thank you for your post.
kristina, I agree with you.
María Luján

5/9/06, 8:03 PM  
Anonymous Anonymous said...

This is a huge issue for some kids. I can still feel the sense of panic that I experienced on the many times my boys have put themselves in harms way. We've had a few very close calls, but they've all worked out OK. Fortunately they've done a good job of learning from most the situations.

5/9/06, 9:42 PM  
Blogger Zilari said...

Maria: I don't know what comorbidities you are talking about. If you mean, if a child is physically ill you have to treat that, then of course I'd agree (for instance, if a kid has an ear infection, your main priority would be "treat the infection" as opposed to "teach the kid to add and subtract RIGHT NOW".)

But "comorbidities" are not autism. (says I, the autistic person with a great immune system and absolutely no bowel problems, etc.)

I discuss some of my thoughts on education in my blog; it's not the sort of thing that's amenable to a quick, short answer. There is no one way ALL autistic kids should be taught or one perfect environment. It differs between individuals.

5/9/06, 10:11 PM  
Blogger María Luján said...

Hi zilari
I was talking about comorbidities that can affect learning and cognition (nutritional defficiencies-even in an apparently healthy child, GI issues, celiac disease and malabsorption, etc).
You say
But "comorbidities" are not autism. (says I, the autistic person with a great immune system and absolutely no bowel problems, etc.)
and I agree with you. For me, as many times I have tried to explain, comorbidities can be at an individual level the result of autistic genetics plus epigenetics and environmental insult. For me, they do not define autism but can be at an individual level the result of being genetically "autistic".

I agree with you in the need of individualized teaching for children with autism. For me each child with ASD is different and the needed individual approach also.
María Luján

5/9/06, 10:26 PM  
Blogger mommyguilt said...

Wade - This is something I struggle with on a continual basis now that SmallBoy is coming up on his 10th birthday. On the higher end of the high functioning end of the spectrum, with Asperger's, there are a lot of things he CAN do for himself and WILL do for himself, that any other 9 1/2 year old boy would do...ride his bike around the block, yet, my fear keeps me from letting him go to the park that is IN SIGHT of my house.

I keep asking myself how he can be expected to learn independence if I am too frightened or protective, if you will, to let him experience these things. We are trying baby-ish steps towards independence, and, will grow through them, I'm certain, but AAAARRGGHHH - it is such a balancing act, the letting go and still holding on.

5/10/06, 4:47 PM  
Blogger Ian Parker said...

I agree with Kristina's comment.

And while we haven't had any close calls yet, in some cases the skills required to avoid danger have to be explicitly taught, rather than waiting for the child to implicitly learn them.

This to me is one of the values of my daughter's IBI program. They are explicitly teaching some of the core skills my daughter needs to survive and become independent. She also has plenty of time for implicit learning, but some skills cannot be left to chance. Our goal at IBI is not to have my daughter fake being NT - I’m not sure why everyone assumes that this is a goal of IBI? Instead it is to learn these skills – things like being able to successfully turn a doorknob, walk up and down stairs (okay, admittedly not the best examples in this particular post), and a whole host of skills that I may take for granted but that she has not yet learned, but will benefit from as a foundation upon which to explore the world further, often on her own terms. I can see that my daughter is capable of benefiting from more than one approach to learning, and we are taking advantage of this, with different approaches each having their own place and time.

5/10/06, 6:53 PM  
Blogger Mamaroo said...

Wade, I agree we must do what we can to give our kids the tools to function in this world and be SAFE. How these skills are taught and how much is actually learned depends on the individual.

I live on a busy road and am constantly making sure the doors are locked. So far my little guy has not tried to open the front door and will only go in the back yard which is fenced in. What has given us a scare (and this happened with my poor Mom babysitting yesterday) is how Roo likes to go hide. I know his favorite hiding spot is up in my room in this one corner I have by my desk. My Mom doesn't know this and I forgot to tell her. She said she almost had a heart attack yesterday when she came up from the basement getting some laundry (I know, I am really lucky to have such a great Mom...doing my laundry when she is here also)and she couldn't find Roo. She called him, but he didn't answer (never really does, despite our effort to teach him). Luckily Brother-roo was able to fill grandma in on Roo's favorite spot, but for a good 30 seconds my poor Mom was panicking running around checking all the doors and imagining the worst.

So, I will keep trying to teach him to answer us when we call him and many other skills and danger awareness as best as I can.

5/12/06, 1:33 PM  

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