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.

tagged as: Autism

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.

tagged as: Autism, Chelation, Calcium Disodium EDTA

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.

tagged as: Autism, Asperger's Syndrome, Teenagers, Parenting

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.

tagged as: Autism, Asperger's Syndrome

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.")


tagged as: Autism, Temple Grandin, Animal Behavior, Savant