Tuesday, October 27, 2009

The Point: What Is The Point?

That's a darn good question.

What is the point of this blog or my story?

My long, reluctant journey into the world of autism began approximately four years ago. The first two years were marred by ignorance and denial, as well as a lot of pain and frustration. The next year and a half began the transformation of acceptance, largely by reading memoirs written by other special needs parents and writing one of my own. The process of writing the memoir was very therapeutic. I was able to articulate my own thoughts and feelings about the experience and support them with the advice and experience of others. For the last six months, I've been sharing my story on this blog.

I began the writing the memoir out of the frustration of just how much the experience sucked. I wanted others to know just how hard it was and, more importantly, point out to new fathers to the club that they are not as alone as I felt during those two miserable years.

The writing occurred in two major chunks. The first chunk was written during the summer of 2008. The second chunk was written from November through December of the same year - after a best selling author told me it was too short (way too short). The first chunk represented my story as I spat it onto the pages. It represented what pissed me off about the "process" and what I thought others should know. The second chunk represented others' interpretations of the same or similar events with some reflection added in. It's half emotion/half substantiation.

Part of what drove me to finish the book was my certainty that there was a need for a book like this from the father's perspective. Now, I'm not so sure. When I look at the memoirs by fathers on the bookshelves, I see some truly heartbreaking and/or inspirational tales.

James Reston Jr.'s Fragile Innocence: A Father's Memoir of His Daughter's Courageous Journey is a heart-wrenching tale. I had no idea while I was reading the book that Reston had been a central figure in the Nixon/Frost story. Even if I had, it would have seemed insignificant compared to his experience with his daughter, Hillary. Rob Rummel-Hudson's memoir, Schuyler's Monster: A Father's Journey With His Wordless Daughter, revealed a story with which I identified in many ways. The steps he took were very reminiscent to my own. The size of the footprints he left were not. At times, I find myself wondering if I could have handled what Rob faced and continues to face. Roy Richard Grinker's Unstrange Minds: Remapping the World of Autism was just so damn well researched that it was hard not to want to quote it on every page.

One book that I haven't read, but should, is Rupert Isaacson's The Horse Boy: A Father's Quest to Heal His Son. There are a few reasons I haven't read it. The biggest reason is that when it was released I had already read over ten memoirs about special needs and autism in a short period of time. I'd also just spent the previous nine months writing my own memoir. I was all filled up with autism and special needs. I couldn't take any more. I needed a break.

The second, and possibly more insidious reason, was that it was competition. I'd never looked at these memoirs in that way but an agent set me straight. After hearing the first two pages of Kicking and Screaming and complimenting the writing (which I enjoyed), she threw cold water on the assumptions I had held dear for over a year. It didn't matter that I was writing from a father's perspective. "Unless you're going to take your son to Mongolia and put him on a horse (referring to Rupert's story), you're going to have a hard time selling it without a platform," she said. I spoke with a few other agents and their take was the same.

Both Rob and Rupert will be hosting a panel at this weekend's Texas Book Festival being held this weekend in Austin, TX. If I wasn't going to the Notre Dame/Washington State football game in San Antonio, I'd be attending the event. I'd like to hear more about Rupert's story despite having not read his book.

A lot has changed since I banged out those first few words of Kicking and Screaming. I'm in a much better place about the situation. I've achieved a level of acceptance I found unimaginable a few years ago. I know another ride on "the cycle of grief" might be just around the corner but I'm an experienced passenger. I know how the ride ends. I'm just glad I don't have to ride it as often as I used to. Also, as I've noted several times recently, Robbie is in a great place. He's achieved a level of speech, self-regulation and social skill that I found unimaginable a few years ago. I'm awed by the progress he's made in such a short period of time. These two realities have taken some of the passion out of my quest. Autism World is home and it's become a pretty nice place. Not a perfect place. But a nicer place than it was not too long ago. It's hard to climb atop the soap box and exclaim, "it's okay!"

The point of this blog hasn't changed. I still want to inform people about Autism World and give those who already know the opportunity to relive some shared experiences. I'd like to provide a better forum for fathers to share their experiences but there are just so many hours in the day. As for getting a book published, I'm not too sure. The competition is stiff. Their stories are compelling. The road of platform creation, self-promotion and publication is not for the feint at heart. These parents are fueled by an endless well of passion that I lack at the moment.

I'm okay with that. Trust me.

Monday, October 12, 2009

The New Stat: 1 in 100

Last week, a friend forwarded to me an article about the latest government study about autism (thanks, Kevin R.). The new study estimates the incident rate of autism to be about 1 in 100 rather than the previous estimate of 1 in 150.

My first reaction was pretty ambivalent. The incident rate in our family was 1 in 2. No study is going to change that. I'm not surprised that the number is higher than previously published but it didn't stir much in me. Many reacted differently than I did. Kent Potter of AutismSpot commented:

Am I speechless? Am I surprised? Am I at a loss for words? Am I dumbfounded beyond belief? Are you nuts? Of course I am not surprised, nor bewildered, and I am definitely not speechless. You don't have to be part of the Autism Community for long before you realize that the "official" numbers have been inaccurate for a long time. Ask most of us and you will likely hear that the numbers still are only a snap shot (or reference point) that is going to be updated again and the results even more "startling" to the general public.

Later in his blog post, Kent ventured into the area that's bothering me the most:

There is tremendous danger in spreading false or inaccurate "cures" or "fixes" when it comes to the world of Autism. I can't begin to tell you the number of times I have been told, "I had a friend, who had a sister who did ______(fill in the blank with anything you want...diet, pill, drops, therapy) and it cured their child of Autism. You should try it with Sam." Thank you, these are well intentioned offerings of insight and hope and I understand you are trying to help. This typically will lend me the opportunity to correct the confusion and help the kind person understand that the world of Autism is not a one size fits all. (my emphasis added).

I suppose that's the root of my ambivalence. The breadth of the autism spectrum is so broad that an incident rate feels meaningless to me. The challenges for those with severe forms of autism versus those with higher functioning autism or Asperger's Syndrome are so different that I'm beginning to wonder why they're even mentioned in the same sentence. The differences are a constant source of strife within the autism community that seems to grow every day.

As I was wondering how to approach the new statistic, John Elder Robison published an article on Psychology Today called "The 'Cure' for Autism, and the Fight for It". It articulated my concerns better than I could. John is probably one of the best known people on the spectrum today, so I take his opinions quite serious. From the Psychology Today article:

"Autism is the one medical condition I can think of where no one can agree on the legitimacy of any of its so-called advocacy groups....Autism's impact on people varies tremendously. Some people are totally disabled which others are merely eccentric. It's no surprise that the individuals at the two extremes would have totally opposite views of their condition.

The "High Functioning" (HF) autistic group says, "We don't need to be cured. We just need tolerance and understanding."

The "Highly Impaired" (HI) group says, "Enough with the understanding! We need some cures, fast!"

Parents of affected kids say, "I want my kid to have a good life, whatever that means or takes."

To a large extent, those points of view are mutually exclusive. HF people tend to see the HI desire for a cure as an indictment of their very being. "Get rid of autistic disability" morphs into "get rid of people like me," in their minds. From the HI perspective, the desire for tolerance and the HF statement that, "we are fine the way we are," seems to be a callous dismissal of their (HI) very real disabilities." (my emphasis added).

I encourage you to read all of John's article because it's excellent.

No wonder there's so much infighting in Autism World. We're fighting two completely different battles (at least). For some autism activists, though, it's a zero sum game. They only see their battle. They only win if others lose. If that means trying to discredit someone fighting a different battle, so be it.

1 in 100? 1 what in 100? I think we're quickly moving past the need for autism awareness. People are aware. What most people aren't is informed. Who can blame them? There's so much contradictory, vague and false information floating out there that I have a hard time considering myself as informed. Unfortunately, people residing in Autism World are part of the problem rather than the solution in this regard. If we can't recognize or respect the differing opinions within the community, how can we expect those outside of the community to do it?

Sunday, October 4, 2009

The Streak: It Continues

The school year is six weeks old. After the first two and a half weeks, I posted about my "Charlie Brownish hope" concerning Robbie's progress. Nothing's changed. It's rare that 'nothing' is newsworthy but this time it is.

Last year when things were going poorly, Robbie changed classrooms. He'd had problems going to school and when he arrived he failed to do any work. To address some of his issues, his new teacher implemented a scorecard to track his work completed during the day. There were five categories. If he completed at least four, he earned a sticker. When he'd accumulated five stickers, he earned either free computer time, free choice time or no morning work. Joy and I also added the stipulation that if he failed to get four "smiley faces" (that indicated he'd completed the work), he couldn't use the computer when he got home.

For the most part, he earned at least four "smiley faces" but there were a few two and three "smiley face" days. He also earned all five on many occasions.

Joy and I decided to copy this approach at home with his morning preparation. His morning scorecard included five categories as well. The categories were: wake up , brush his teeth, get dressed, get in the car and get out of the car at school nicely. If he failed to get four "smiley faces" for his morning preparation, he wasn't allowed to use the computer when he got home from school. Like in school, he almost always earned at least four "smiley faces" for his morning preparation. Five was very common. However, there were still a few days when he'd lost computer time because he didn't wake up and go to school nicely.

These two scorecards were very effective tools. Towards the end of the year, if he failed to get four "smiley faces" he wouldn't even bother telling us when he got home. Instead, he just went straight to him room.

This year? Both scorecards have disappeared. They're obsolete. He goes to school nicely in the morning without hesitation. He does all of his work at school without a problem. He even does homework, which we assumed was going to be the monumental battle of second grade. If we were keeping score, he would have earned five "smiley faces" for both scorecards every single day of the school year.

It's as if a light switch was turned on. This wasn't a gradual change. It literally happened overnight. Roughly twelve hours before the bell sounded for the first day of school, Robbie had one of his biggest and longest tantrums we've seen in a while because he didn't want the teacher he'd been assigned. A call from one of his classmates saying how happy he was that Robbie was going to be in his class flipped the switch. Since then, school just hasn't been a problem. To say we're overjoyed would be a significant understatement.

In September, I posited that the changes could be attributed to Joy's efforts on teaching him the cause and effect of his behavior at school and summer school, a change of medicine, or the quality of his new teacher. It's like a combination of all three.

A few weeks ago, someone stated, "I think Robbie's outgrown this Asperger's (Autism) thing". As much as I want to believe that, I know it's not true. A few years ago, I might have let myself fall into that trap. Now, I realize I can't afford to. There are still plenty of signs to debunk that claim. Nonetheless, we appear to have crossed a very big chasm. What that means is we can now drill down and focus on other areas, especially the area of social skills, that will make or break Robbie's success as an adult in society.

I'm not going to lie, though. I think those chances have tripled over the last month. That might be a trap, too. But it's one I'm willing to walk into.