Monthly Archives: January 2006

Glass half-full: The gifts of autism

From the Asbury Park Press Online (New Jersey, USA) is this incredible article by the father of a 10 year old autistic girl. Though I usually try not to put long excerpts of posts/articles, Chris Collins’ words really hit home with me. (The emphasis in the excerpt below is mine.)

Lessons

During the last seven-plus years, we have learned more about love, appreciation and the things that really matter in life than we could have ever imagined. Nikki is an amazing human being who teaches very strong lessons each and every day.

One very significant characteristic of autism is that she only sees the world in a literal sense. There is no sarcasm, exaggeration, substitution or lies. Everything is what it is, and what a wonderful influence and lesson that has been for our family.

One recent day, while on vacation, my wife and I were casually talking about the possibility of every finding a cure for autism. My 12-year-old son, Christopher, quickly interrupted and with tremendous conviction and emotion said, “I hope not. I want Nikki to stay exactly the way she is.”

We as a family have no illusions and do not labor in the belief of a miracle cure. My wife and I know it is a very difficult road ahead. Every day brings new challenges in the world of autism.

Nikki will most likely live with us for the rest of our lives. She will never have close friends or ever be interested in the fun things that are so important to little girls.

We know that the stares and the embarrassment over her peculiar behavior in public places will be there forever. We know that every public venture or event could have the potential for unknown adventure.

We also know that having Nikki has been a gift that far exceeds anything that we could have ever hoped for in life.

Perspective

Although a major characteristic of autism is the need for sameness, a day does not go by that Nikki does not do or say something new that makes us stop and think about how special her perspective on her surroundings is.

She’s a little girl who loves Christmas but couldn’t care less about gifts. It’s the lights, the decorations and the warmth that she feels in the house that make her so happy. One year it took until June for her to open the last of her Christmas presents.

As a family, we have chosen to appreciate that gift and live our lives, thankful every day for an autistic child to be part of our lives. We have made the conscious decision that we would not let autism slow us down, but rather allow it to make the ride of life more rewarding.

Really, I wanted to emphasize the whole thing. I think I would get along very well with Mr. Chris Collins and his family.

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Weird connections: Chelation and Mayonnaise

Putting away the groceries last night, I happened to glance at the ingredients label on a jar of mayonnaise as I was putting it into the refrigerator. One ingredient jumped out: calcium disodium EDTA (use to protect quality).

Until a couple of weeks ago, this probably would have meant absolutely nothing to me. However, that chemical name was still fresh in my mind from recent discussions of autopsy results from the death of a child (Abubakar Tariq Nadama) during chelation. Apparently, Disodium EDTA was mistakenly used instead of, you guessed it, Calcium Disodium EDTA.

Not sure what this means (probably nothing), it just seemed that this weird connection was worth mentioning.

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Teenagers

Clicking through links on the Autism Bloggers Ring (see the bottom of this page for the links), I found myself at Our Aspergers Teenage Boy. In a recent post, Mom reports:

Tommy is getting smart-mouthy. This is normal teenager stuff that gets treated differently because of his Aspergers. He is also starting to fight doing schoolwork.

I’ve written a bit before about how it is hard to tell sometimes whether things that come up are because of Z’s autism or because he is a teenager. Mom’s post above, expecially the bolded part (my emphasis, btw) got me thinking:

We expect our NT kids to “act out” and rebel at some point, because it is ‘normal’, but seem to try to stop our autistic/Aspie teenagers from “acting out” because we want them to be ‘normal.’

Just seems kind of odd. Definitely a delicate balancing act we parents (all of us) have to perform.

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Coming out of the “autism closet”

A couple of days ago I came across Processing in Parts, “musings and writings by a young autistic adult.” The most recent post, simply titled Parents, raised an interesting question – How do you tell your parents that you are autistic?

When I am with my parents, things tend to go fine as long as we stick to concrete, neutral topics. Computers, science fiction, facts about nature — these are all ‘safe’ things to talk about, that do not tend to lead to confusion and argument. However, occasionally someone will bring up one of those ‘shinyrobot, why are you like this?’ topics…and these tend to prompt some rather uncomfortable exchanges. I know my parents only want to help me, and that this has been their goal from the very beginning. However, I would dearly love to find a way to bring up the subject of my neurology / diagnosis with them. I am not ashamed of who I am, but since I have absolutely no idea how my parents would react, I have hesitated.

I can hear some of you already shouting at the screen, “How could her parents not know she’s autistic?!?!?”

Read the whole post, you’ll get a bit of an idea. It is encouraging to know that even in the face of such a terrible situation, shinyrobot is making her way in this world. Gives me that much more hope for Z.

On a slightly different aspect of this topic…. If I had read this post out of the context of an autism blog, my first thoughts (as I’m sure would be true of many others) would have been to think that shinyrobot was trying to figure out how to tell her parents she was gay. (Hence, the title of this post.) I guess there are some parallels, in that both ‘conditions’ are seen by some (many?) as neurological dysfunctions that should be ‘cured.’

Am I equating the two – not by a long shot. But I couldn’t help but notice, and comment on, the similarities of the situations.

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More intriguing insights on autism from Temple Grandin

When I first started researching autism on-line back around 1993, I remember a discussion between autistics and parents of newly diagnosed autistic children in which the autistic participants were complaining about being treated as if they were animals that merely needed to receive the proper training. (An ABA discussion, perhaps, I don’t really remember.) And the parents saying something along the lines of “we just want our kids to be normal, or at least be able to function in a normal world.” *

This on-line discussion came to mind when I read Sentient Developments: Temple Grandin: Animals are autistic, in which George Dvorsky provides a summary of some key points from Temple Grandin‘s latest book, Animals in Translation : Using the Mysteries of Autism to Decode Animal Behavior, as well as the Scientific American review of the book, from which the following is excerpted:

In Animals in Translation, co-authored with science writer Catherine Johnson, Grandin makes an intriguing argument that, psychologically, animals and autistic people have a great deal in common—and that both have mental abilities typically underestimated by normal people. The book is a valuable, if speculative, contribution to the discussion of both autism and animal intelligence, two subjects on which there is little scientific consensus.

Autistics, in Grandin’s view, represent a “way station” between average people, with all their verbal and conceptual abilities, and animals. In touring animal facilities, Grandin often spots details—a rattling chain, say, or a fluttering piece of cloth—that disturb the animals but have been overlooked by the people in charge.

She also draws on psychological studies to show how oblivious humans can be to their surroundings. Ordinary humans seem to be less detail-oriented than animals and autistics. Grandin argues that animals have formidable cognitive capabilities, albeit specialized ones, whereas humans are cognitive generalists. Dogs are smell experts, birds are migration specialists, and so on. In her view, some animals have a form of genius—much as autistic savants can perform feats of memory and calculation far beyond the abilities of average people. Some dogs, for example, can predict when their owner is about to have a seizure.

Almost the opposite of those discussions I mentioned.

I’m sure there are many people who will read this and have an immediately negative response to comparing autistics to animals, all but outright saying they are less than human (“way station” between ‘normal’ people and animals). To them I would say, “Stop trying to reading so much into it.” (What I would really mean is, “Stop being so normal.”)

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Early detection and intervention is key, and yet…

The article Some autistic kids’ parents dispute criticism of nontraditional treatments addresses familiar themes about the validity (or not) of ‘alternative’ treatments for autism such as chelation, special diets, hyperbaric chambers, etc. Nothing really new.

But there were a couple of paragraphs in the story that caught my eye (emphasis mine):

Joseph was born healthy at 5 pounds, 14 ounces. He developed normally, his parents said, until he was about 10 months old, when he began to flap his hands, a common behavior with autistic children.

He started talking and interacted well, but then his language regressed. He had tantrums. He’d lie on the floor, pace or jump.

His parents, both lawyers, felt Joseph was being stolen from his body. But several pediatricians said not to worry.

It is disturbing to think that one parent could find “several” pediatricians consecutively that don’t seem to understand the early indicators of autism. This doesn’t seem to present a very good image of the state of the level of knowledge about autism in the medical profession.

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Autism Research Could Lead To Lab Test

This article, Autism Research Could Lead To Lab Test, is interesting in many aspects. The one that jumped out at me, however, was the implication that autism isn’t something you have, it is something you can get (emphasis below is mine):

The study also might lead to a lab test that could detect if someone is at risk of having autism. Right now, the only way to diagnose autism is through behavior. The discovery that too much of a particular protein in the body linked to autism could lead to a blood test for this disease.

‘If we know that children are at higher risk and we have a way to screen for it, we can certainly intervene much sooner,’ she said.

Just like cancer or heart disease, where some people are more susceptible to “catching” it than others, no matter how much/little environmental influence there is. (I think we all know people who have smoked all their lives and never gotten lung cancer, while there are those who seem to ‘catch’ it for no reason at all.)

Perhaps this is a first step along the way of showing that nature/nurture – genetics/environment link between autism and environmental triggers?

Of course, it also brings up questions of what it means to ‘cure’ autism, or even prevent it. Is a child “at risk” of becoming autistic when they are 6 months old, or are they already autistic but just don’t know it.

I won’t even go into the questions/issues related to pre-natal testing for autism. At least not right now….

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Is it the genes? The environment? Or both….

Watching Discovery Health this afternoon, I heard the following quote:

Genetics loads the gun, but environment pulls the trigger.

The show was about teenage obesity. A teenage boy was unusually big for his family – neither his parents nor siblings had weight problems. His problems were attributed to some genetic influence somewhere on the family tree. As the story went on, an expert on obesity made the statement that genetics contributes about 30% to the problem of obesity, while the environment (ie, what we eat, how much/little we exercise) contributes the remaining 70%. Which, of course, led to the quote above.

I couldn’t help but make the connection between this and the question of the enviroment on autism. It has been said in various places that the recent rise in autism cannot be attributed to genetics alone (because of the relatively slow process that would be). The argument has also been made that thimerosal can’t be the cause of autism, since not every child that received shots with thimerosal has become autistic. Obviously (at least to me), there must be a middle ground.

So many things have changed in the environment in which we live today. The widespread increase in obesity can be linked to some aspects of this change. But not everyone is affected.

If the gun isn’t loaded, pulling the trigger doesn’t matter.

I think that this is also the case with autism. Is it thimerosal? Maybe. Is it something else? Who knows? Is it something we can change? I guess that depends on what it is? Is it something that we would change if we could?

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Autism Blog – My Son’s Autism

A few days ago, I posted about an article about Jonathon Lerman, an 18 year-old autistic artist with an exhibition in Toronto. Turns out the organizer of the exhibition, Estée Klar-Wolfond, is also the mother of a 3 year-old autistic son.

Check out her blog, My Son’s Autism.

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