Thought for the day - Living your own life

A consistent, recurring theme for parents of autistic children has long been, "You know your child best." While this is not always easy for parents with a new diagnosis to accept, or understand, those of us who have been doing this for a while recognize what it means.

Listen to the doctors, the teachers, the experts. Read whatever you can find. Try different approaches to helping you and your child. But in the end, do what YOU as the parent believe is best, based on your knowledge of your child. Specific programs - whether it be ABA, chelation, mainstreaming in school, etc - will never be successful if they are blindly implemented without your or your child's individual needs being used as part of the decision.

A while back I picked up Deng Ming-Dao's 365 Tao - Daily Meditations. As its name suggests, it has one Taoist meditation per day. I'm not a Taoist (I don't think), and came upon the book after reading another by Deng, Chronicles of Tao, itself a very interesting story. (To be honest, I'm not really sure if it is fiction or not - it is presented as a true story - but in the end it didn't really matter; it's a good book.) I have found that many of the meditations in the book are very useful and, indeed, practical. I've marked each of the pages with the appropriate date (there is a chart in the back of the book that does this, but I like having the dates on the page), and have referred to it off and on for many years now.

Yesterday's entry, Retrospective, resonated with me as I was thinking of those common themes of parenting, especially parenting an autistic child:

You could labor ten years under a master
Trying to discern whether the teachings are true.
But all you might learn is this:
One must live one's own life.

Too often today we try to live life like others expect us to, this is a nice reminder that our lives are our own, and that they are ours to live. Which brings to mind something I saw on a young man's t-shirt last weekend at a local Yugi-Oh tournament:

The only way to know who you are is to go somewhere you don't have to be anyone else.

"In My Language": The video that caught CNN's eye

The spark that caught CNN's eye about Amanda Baggs (see my last post if you don't know what I'm talking about) was her video "In My Language" posted on YouTube. While it is easy enough to just go to YouTube to watch it, I would like to share it here as well.



tagged as: Autism, Amanda Baggs, Anderson Cooper, Sanjay Gupta, Intelligence, Neurodiversity, Autism Advocacy

Why don't more people understand this yet?

One of the dangers of being too close to a topic like autism and autism awareness is that you sometimes forget that not everyone has caught up with you in their perception of that issue. Even people you think should know better by now.

An example that recently struck me was how many people still don't realize that "low-functioning" autistics can be very intelligent.

In her new book Strange Son, author Portia Iverson describes her initial reaction to the idea of an intelligent "low-functioning" autistic:

“There’s a boy I think you should know about,” Francesca Happe began, gesturing for me to sit down. “His name is Tito.” The renowned psychologist from England, whose specialty was autism, continued: “He’s eleven years old and he lives in India. He’s quite autistic, but he can read and write and he’s very intelligent.”

She smiled at me and paused before going on, as if to gauge my reaction.

“Tito is a wonderful poet as well,” she continued. “He’s even published a book, an autobiography with some of his poetry in it.”

“And he’s autistic?” I asked in disbelief, thinking I must have misunderstood.

“Yes, he is definitely autistic. ... There is only one Tito in this world, and no one else like him. He is his own disorder,” she replied with certainty.

I knew that no one had ever heard of such a severely autistic person being able to write and communicate independently. But wasn’t there even a remote chance that there could be others who looked and acted just like Tito but couldn’t communicate? At the very least, couldn’t Tito provide an extraordinary window into the most severe kind of autism?

This exchange between Iverson and Happe occurred in Spring 1999 and serves as the starting point of the story that Iverson tells in her book. Not to spoil the ending, but by the end of her story (circa 2003), Iverson comes to the conclusion that to me today seems so obvious: Tito is not one-in-a-million, he is not "his own disorder."

Fast forward several years to two days ago. From his blog, Dr. Sanjay Gupta of CNN describes a recent meeting he had with Amanda Baggs, author of the ballastexistenz blog:

Amanda is obviously a smart woman who is fully aware of her diagnosis of low-functioning autism, and quite frankly mocks it. She told me that because she doesn’t communicate with conventional spoken word, she is written off, discarded and thought of as mentally retarded. Nothing could be further from the truth. As I sat with her in her apartment, I couldn’t help but wonder how many more people like Amanda are out there, hidden, but reachable, if we just tried harder.

Trying harder starts with getting the word out. But how to go about it? I'm glad that Dr. Gupta has written about Amanda, and that Anderson Cooper had her on his show last night (I've not seen it yet). Too much of the coverage of autism is doom and gloom, maybe this will help to get the word out to a few more people.

But I have the feeling it is going to be a long, hard trail, because even those that should know better by now obviously don't know yet. Dr. Gupta captures this problem well in his closing paragraph:

I am a neurosurgeon and Amanda Baggs opened my eyes about the world of autism.

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There is also a story about Amanda posted on CNN Health.
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Update: From Anderson Cooper's website on CNN, it looks like he may have more with Amanda on tonight's show (22 Feb 07).
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tagged as: Autism, Amanda Baggs, Anderson Cooper, Amanda Baggs, Intelligence

Diagnosis: Autism - nothing new on 60 minutes

A quick follow up to 29 Marbles: Autism on 60 Minutes - 18 Feb 07 . My first thoughts after watching the 60 Minutes piece Diagnosis: Autism on Sunday night was, "Wow, this was a non-event."

Maybe it's just me, and the fact that over the past year I've been soaking in just about every autism story, theory, etc and reading several autism related books, but the show didn't seem to shed any new light on anything.

Of course, if I were the parent of a recently diagnosed child, or (gasp) the parent of a 6-12 month old who wasn't responding when I called his name, it would have been a different story. But what exactly would I have learned?

Every child is unique

Yesterday, abfh wrote something that captures perfectly how I feel about being a parent - not just of an autistic son, but of both my kids (emphasis is mine):

Children are always different from their parents and from one another in a great many ways, and each child is uncharted territory. No one ever knows how well they can deal with parenting any child. It's always a matter of gaining experience on the job, observing how the child grows and learns, and loving the child enough to let the natural process of growth take place, unconstrained by the parents' needs and assumptions.

This has now found a place in my trusty notebook of things I want to have handy. If anyone asks me how I "deal" with parenting an autistic child, I'll simply show them this.