29 Marbles

I found this bit of wisdom in the book Never Eat Alone by Keith Ferrazzi. Though geared at self improvement, this quote struck a chord with me as a parent:

The trick is not to work obsessively on the skills and talents you lack, but to focus and cultivate your strengths so that your weaknesses matter less.

The story of Tony DeBlois is an example of this in action. His mother recognized that Tony had serious weaknesses/disabilities to overcome, but also realized that his strength in music could make much of that weakness irrelevant.

I think all of our kids have their own strengths. Much of it may be hidden from us as parents*, or their strength may be something that we don’t quite understand or appreciate as worth cultivating.

But it is by cultivating these strengths, in all of our kids (and ourselves), that we can help them be successful in whatever they ultimately decide to do.

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* Ferrazzi also gives this observation from Machiavelli: “Everyone sees what you appear to be, few really know what you are.”

Like most postings on Pat Sullivan’s blog, Autism on Good Morning America really got me thinking. In this case, it was the last sentence that sent the wheels spinning (emphasis is Pat’s):

Much like TREATING cancer, diabetes, etc., TREATING autism through ABA appears to be big business. CURING it however, yields little but vehement criticism.

What does it mean to “cure” something? From dictionary.com is the following (as cited from the American Heritage® Stedman’s Medical Dictionary):

cure (kyr)
n.

1. Restoration of health;
   recovery from disease.
2. A method or course of treatment used to restore health.
3. An agent that restores health; a remedy.

The key seems to be “restore health.” For physical ailments, the meaning of this is well known and understood.

But what does it mean in the context of a disorder that is diagnosed based on observation and behavior and is, at its most basic, simply a deviation from the societal norms of behavior and social interaction? Is “changing behavior to be normal” [God, I hate trying to find the right words cause that one just doesn't work] the same as “restoring health.” It seems to me that yes, it is.

Of course, all this goes back to the question, “What is autism?” For if you don’t really know what the disease is, how can you say you’ve cured it. Is it possible that there is more than one cause of autism? Are autism and mercury (or heavy-metal) poisoning different problems that just happen to present the same*? Is there only one cure, or can there be several?

If, as the transcript of the Good Morning America segment states, the boy is indistinguishable from his peers, isn’t it fair to say the ABA treatment cured him of autism?

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* If you haven’t already guessed it, this is kind of what I believe.

Recommendation: You should add this book to your must-read list.

I’ve long been fascinated by genius. Or, more specifically, the process of genius and figuring things out. My book shelves are full of these kind of books, mostly about scientists, mathematicians, and the like. This past weekend I finished Some Kind of Genius, which chronicles the musical achievements of Tony DeBlois from his first toy organ at the age of two and public performances at five that astounded the audience through his training at elite musical schools and his several CDs.

From an early age, Tony’s skill was apparent. He could quickly and easily play back anything he heard. He could even improvise and improve. As he got older and in more and more rigorous training, he could listen to his teacher and play back what they just played even as the teacher continued to play. He also has composed original tunes, played with several bands and organizations, and sings. As someone who dabbles at the piano and has a hard enough time just playing a single song, I consider this ability genius.

From the book is this description of 15 year-old Tony’s audition at the Berklee College of Music in Boston:

Janice arrived with Tony at the audition and took him directly to the piano. The members of the committee stood around the piano, anxious to hear him play. Gathered for this audition with Lipman were Rob Rose, director of Berklee’s special programs; Dave Weigert, chairman of the piano department; Paul Schmeling, of the piano faculty; Bob Doezema, guitarist/composer and assistant director of the summer program; and famed saxophonist-turned-educator John LaPorta, one of the legends of the school.

They had all sat in this space countless times before, listening to hopeful young musicians from all over the world. Berklee, the planet’s top college of contemporary music since its founding in 1945, boasts an alumni list that is a veritable who’s who of jazz, rock, electronic music, and other genres, and students know that getting accepted means they’ll get the best training available in their field. Berklee alumni include composer/producer Quincy Jones, saxophonist Branford Marsalis, film composer Alan Silvestri, guitarist Al Di Meola, modern big band leader/composer Toshiko Akiyoshi, pianist Diana Krall, saxophonist Bill Evans, singer-songwriter Melissa Etheridge, members of Aerosmith, and many others.

Tony started the audition with a short classical sonatina, then moved on to one of his favorites, George Gershwin’s “I Got Rhythm,” complete with his improvised insertion of the Flintstones theme, which revealed his clever and original approach to the piece. Those brief moments were a revelation. The committee realized that they had a formidable talent on their hands, a rare, special boy whose playing contrasted sharply with the rest of his behavior.

Did I mention that Tony is blind? And autistic?

When I started reading Some Kind of Genius : The Extraordinary Journey of Musical Savant Tony DeBlois I was expecting (hoping?) to learn more about how Tony DeBlois‘ mind works, more about Savant Syndrome (which I’ve written about before). Indeed, there is some basic information about Savant Syndrome in general and discussion of Tony’s particular skills.

From Dr. Darold Treffert is this description of why savants may have the skills they have while the rest of us don’t:

I’ve come to believe in the collective unconscious not as psycological myths that are handed down by generations but as actual wiring, instinctual, which I call software installed. It’s clear that some of these prodigious savants are knowing things they cannot have learned. It had to come installed.

This level of memory may also explain why it appears that we come with tons of software installed that we don’t use. It’s not because we’re lazy but because it would cause the same situiation as when I try to use all my software on my computer at the same time – it would crash.

It’s almost as if some of these chips have a survival value to us if something happens to us. I think we tend to look at ourselves as being born with a tremendous piece of hardware, the brain, and a blank slate, and we become what we put on this disk. But I think savants come with this installed and they have access to it that we don’t.

As impressive as Tony’s story is, though, for me the real story of Some Kind of Genius is that of Tony’s mother Janice. From well before Tony’s birth, Janice’s life seems to have prepared her for the challenge, responsibility, and adventure of raising Tony and his brother Ray. And from the account she gives in the book, she more than lived up to the challenge.

For parents of an autistic, or blind or other “disabled,” child this is a story of inspiration and what can be achieved if the desire is high enough. Almost all of us will see a little bit of our own story in Janice and Tony’s. The struggle to understand what is happening with your child. The desire to have the best life possible for your child, by figuring out what they are good at and helping them excel. And the fights with the system to make sure your child get what they need and deserve. It is also a story of sacrifice. All “special” parents know nothing is ever easy and getting what your child needs sometimes means sacrificing for yourself and possibly others, all too often leaving “casualties” along the way.

For everyone else, this is an inside look into what special needs kids and their parents must go through to get what is appropriate for them. My only complaint on this front is that Janice and co-author Antonia Felix almost make it seem too easy, too matter-of-fact. An “insider” will understand what was going on in the background of this story, but those unfamiliar with the struggle of “special” kids and parents will likely not quite catch it.

The most uplifting part of Tony’s story is his acceptance by the world of music. In almost every case (at least the ones documented in the book), the professional musicians and music educators that Tony works with see him as a musician first, a nice guy next, and only then as blind and autistic. This, I think, is the hope of all parents, special or otherwise: To help their children find their place in the world and make it their own.

ps. If anyone reading this happens to know Ellen DeGeneres, could you please pass on to her Tony’s desire to meet her and appear on her show?

[Disclosure: The publisher offered the book as a complementary copy in hopes that I might mention it here.]

Tagged as: Autism, Savant, Savant Syndrome

An interesting article from Amy Nelson, PressBooth - Autism Spectrum Conditions a Social Minority Group raises a very interesting concept for thought and discussion. I have to admit, I’m not quite sure what I think of it.

Like all things surrounding autism, how an individual looks at this problem will depend a great deal on how that individual answers the question, “What is autism?” I’m going to have to think on this some more before posting any thoughts on it, but I figured I’d post this and see what others think.

This description of the Relationship Development Intervention ® (RDI®) program was on a press release for an upcoming conference, Going to the Heart of Autism, in San Diego:

The RDI program represents a new generation of autism treatment through which [Dr. Steve] Gutstein has worked to translate research findings into a systematic clinical approach to address the core problems faced by all individuals on the autism spectrum. It is different than “first generation” intervention programs because it is geared toward remediation. A primary assumption of the RDI program is that through focused guided participation in challenging activities, families can increase the flexibility and complexity of neural pathways of people with Autism Spectrum Disorder.

“The RDI program represents a completely new way of thinking about and treating the deficits that are common in all individuals on the autism spectrum,” said Gutstein, co-director of the Connections Center. “We are challenging families and professionals to think beyond achieving mere functionality as a successful outcome for individuals with ASD; our reference point for success in the RDI program is fostering loving relationships and enhancing quality of life.”

For $150 (or $125 if you register on the site and buy before 30 September), you can purchase the DVD Going to the Heart of Autism – The Relationship Development Intervention Program.

The DVD includes 30+ video clips of parents and families participating in RDI activities. An excellent tool to introduce and educate teachers, therapists, grandparents and friends to RDI. Topics are dynamically presented for a general audience, but would also be appropriate for someone on a post-doctorate level.

Anyone out there have any first hand knowledge or experience with this?

Kev points to Getting the Truth Out, a site that he says provides a “much more realistic look at autism” than the recently relaunched Autism Society of America website.

Some thoughts on the site from Kev:

In places, for us parents, its not an easy read.

In other places it feels like we as parents have to accept that whilst we know our kids well we don’t know autism as well as autistics.

In still more places, this is a read full of hope and confirmation that difference is not equatable to bad or something that requires curing.

I’ve not had the chance to go through the whole site (it is set up as a linear pager turner and takes about an hour to go through, according to Kev), so I can’t really comment on the site (yet). But it looks like it is definitely worth reading in detail as I try to figure out this thing called autism.

This was the reaction of a friend’s autistic teenager as he watched the Autism Epidemic series that NBC broadcast last spring. How do you tell him that he is autistic?

As our autistic kids get older, it is one more thing we must all address (along with the birds and the bees and everything else that comes with growing up). But how best to do it?

Bonnie has some thoughts and suggestions at An Impression of Autism from a kid on the Autism Spectrum:

I personally do not believe in keeping the diagnosis a secret from family, school or the child. It is all about awareness and making the person with autism understand more about themselves to help them as they grow and become more independent. This all depends on the level of the child.

She recommends some books, from many perspectives, as well as some other ways in which to raise the issue.

The problem also applies to how we inform siblings about their brother’s or sister’s autism, and some of the resources Bonnie mentions address that as well.

Good stuff from someone who’s gone through it.