A view of autism from along the spectrum

If someone had told me that I would write two posts in a row about Bruce Springsteen, on a blog about parenting children on the autism spectrum, I’d have thought they were crazy.  Maybe I’m the crazy one, because here I go with post number 2.

Last Thursday, Bruce Springsteen and the E Street Band kicked off their latest world tour in nearby Hartford, Connecticut.  In the middle of the day, my wife called me at work to tell me that her sister has an extra ticket and asked for a ‘permission slip’.  I admit, my first reaction was jealousy.  My second reaction was also jealousy.  I fortunately got my act together for my third reaction and said "Sure." 

I left work early so she could meet her sisters at a 200 year old tavern nearby (did I mention that I was jealous?).  She had no idea where her seats would be but was just looking forward to a fun night out. 

Several hours later in Hartford, my wife was wearing a bracelet for her "seat" which happened to be in the standing room only section directly in front of the stage.  My sisters-in-law kept telling her "Don’t tell Shawn!"

As she worked her way forward, she spotted a youth, about MJ’s age, wearing the same contractor’s hearing protectors that MJ wears in noisy environments.  She also noticed the young man flapping his hands.  His face lit up and he began flapping more excitedly as the band took the stage.  In between songs she struck up a conversation with the boy’s mother who, with her husband, had traveled from New Jersey to bring her son to see The Boss.

As the concert started, mom and dad took turns holding their 11 year old son, mom on her shoulders and dad in his arms.  My wife helped support him on his mother’s shoulders and a fireman from New Haven did the same to help dad bear his weight.  

Early in the show, the boy’s mother tried to hold up a banner.  She struggled trying to get into a position in the front row while holding her son on her shoulders.  A woman standing in the front row saw what was happening and took the banner and held it up for her.  The sign said "Your Music Taught our Autistic Son to Speak, Thank You".  Mr. Springsteen saw the banner, read it, and walked over to the young man on his mother’s shoulders and handed him the harmonica he had been playing.  The younger Jersey Boy lit up and he played the elder Jersey Boy’s harmonica for the rest of the show.  My wife observed a few tears, in addition to her own, and noticed that the people nearby moved to form a protective barrier around the family, making sure they had the space they needed for their son.

OK, I’m still a little jealous, but more than that, I’m touched by the kindness that so many people showed to this boy and his family that night. 

The words from song The Long Walk Home played that night sum it up:

Here everybody has a neighbor
Everybody has a friend
Everybody has a reason to begin again
My father said "Son, we’re lucky in this town,
It’s a beautiful place to be born.
It just wraps its arms around you,
Nobody crowds you and nobody goes it alone

– Bruce Springsteen

I imagine tonight, somewhere in New Jersey, there’s an 11 year old boy happily playing The Boss’ harmonica.   Just a couple of Jersey Boys.

This week, 9 year old SJ said that he wanted to write a comment about autism on my blog. I told him that if he had something to write, he could write a post. Here it is, unedited:

I am a kid with autism and I come up with tips on things. This will make hope for autism. Here are a few places that you can use tips: karate, home, movies, and horseback riding. Here’s one: try your best!!! Here’s #2: stop if you need to. Now, for #3 (in case you play a game): quitters never win, and winners never quit.

The cover of today’s issue of Parade magazine found in many Sunday U.S. Newspapers has a cover story on Autism.

The cover headline asks “Is There Hope for Autism?”

Sorry for the language but, it pisses me off that, by even asking the question, the cover implies that the answer might be “No”.

File this under Angry Rant.

A sudden surge in the demands of both parenting and work have kept me from writing lately. Here’s a few of the things I’ve been thinking about during my down time from writing.

Rant: Jenny McCarthy. I admit that I haven’t paid much attention to Ms. McCarthy but there’s one aspect of her views (or at least how some of the media is presenting her views) that I find particularly disturbing: How can one come to the conclusion that autism is “healed” in someone that is only five years old? There is an incredible amount of development that occurs after the age of five. My own children have changed tremendously from the age of five. Some of the manifestations of autism are less pronounced while others are more prominent. I challenge that it is reckless to make conclusions about the future of any child based on their developmental profile at five years old. It’s helpful to make predictions about a developmental track, but unhealthy to assume that some developmental characteristics will or will not be present in the future. That said, I’m glad Ms. McCarthy has found things that help her son.

Rambling: I’ve found it very hard to keep up with reading blogs this past year. One of the big reasons is that there are now so many people writing blogs and I’m very easily overwhelmed. I remember when there were only a dozen people blogging on autism and it was much more manageable then. Another reason is that, while much of what I read is worthy of further dialog, it’s too hard for me to stay involved in a conversation via blog comments. Reading blogs is something I’m able to do only about every other day at most and that’s not often enough to keep involved in a conversation in this format. Lastly, I’ve done so much reading of books and blogs over the past few years, I’ve felt the desire to be more immersed in my children’s autism and less immersed in reading about autism. As John Mellncamp sang “I know there’s a balance, I see it when I swing by”.

Rant: It frustrates me that my school system too often treats autistic children with behavior challenges as “emotionally disturbed” (an official IDEA identification related to special education). The root causes of behaviors can be completely different with autistic children relative to those that are emotionally disturbed. There may be overlaps in both these conditions and the causes of behavior but effective approaches in dealing with behavior must be based on correctly understanding the cause of the behavior. I’ve seen too many educational placements for autistic children fail because the programs approach behavior issues using methods designed to be effective with emotionally disturbed children and not with the causes of behaviors in autistic children.

Rambling: Paraprofessionals are the unsung heroes of many exceptional educational placements. It’s the paraprofessionals (often called ‘aides’ where I live) that are on the front lines, and have the ability to make a program succeed or fail. They receive far less training than teachers and other professionals but are the first adult our kids turn to for help. Our boys have been fortunate to have some exceptional aides that have made a world of difference. One of them reads this blog and I hope she knows that I count her in this group.

Rant: OK, there’s some bad aides out there too. Some are slow to change their ways and fail to adapt to the individual child. As an aid can contribute to making an educational placement successful, they can also be a cause of a placement that fails.

Rambling: Should I be concerned that this blog got the most visitors ever in December, when I hadn’t posted in almost two months? Maybe the material I don’t write draws more people than the material I do write. At least the material I don’t write has fewer spelling and grammatical errors!

A few months ago, I wrote about people in Connecticut that were making a difference for individuals on the spectrum. MJ participates in a program called the FOCUS Alternative Learning Center that is run by one of the people I wrote about. FOCUS is a lot of things but is most simply described as an extended day program for kids on the spectrum. It’s a place where kids can be themselves, surrounded by supportive staff and their true peers, not the neurotypical peers that are usually thrust upon them. The kids at FOCUS often describe one of their biggest challenges is that other people don’t understand them. The FOCUS program is filled with people that understand them.

I immediately thought of the FOCUS program, and the adults and kids involved, when I saw the following on TV tonight. It’s so relevant that I’m going to risk being a shill for a credit card company and post a commercial on my blog.

I had the privelege a few months ago to listen to a panel comprised of teens and young adults with ASDs speak to a large group about what it is like for them to be autistic. The audience consisted of parents, teachers, and other teens and young adults. MJ, my 12 year old with AS began participating in some of the panels over a year ago.

During the question and answer portion of the presentation, a woman stood up and said, “I work with very young children. Can you give me some tips in helping them to make eye contact?”

I laughed (but not out loud) and rolled my eyes (I was in the back, so no one saw). I then smiled and thought about how far I’ve come since I said to the boys “Look at me”, in an effort to engage them. Five years ago, I might have even asked the same question as this woman.

It was Dr. Steve Gutstein who first pointed out the hilarity of asking for eye contact when what we really wanted was ‘joint attention’. My perspective on eye contact began evolving the day I first heard him speak.

After hearing Dr. Gutststein, I dropped the phrase “look at me” from my vocabulary. I didn’t replace it with anything for a long time and instead took sole responsibility for determining if I had my sons’ attention.

As the boys grew, I wanted them to take more responsibility for their part in interactions. Instead of reintroducing “look at me”, I began to use the phrase “listen to me”. I gradually replaced that with “I need you to show me know that you are listening to me” and “I can’t hear you well when you face away from me when you talk.” There are lots of ways for them to show me joint attention besides direct eye contact.

I still occasionally coach them to face me and reinforce the value of looking toward someone when you are speaking or listening. But I don’t think I’ve said “Look at me” in years.

I finally got to see X-Men: The Last Stand (the third movie of the series) last night. I was never a big comic book fan but I’ve always loved a good epic story. The X-Men movies, and even the few episodes of the animated TV series that I’ve seen definitely fit the bill of an epic. Brett Miller wrote several posts on his 29Marbles blog about the movie last year and includes references to some other sites as well. He includes a good summary of the movies in one of the posts.

The general premise of the X-Men series is that many humans are born with a mutated gene that makes them “different” than the rest of the population. The difference generally includes a special ability or power. Themes addressing “being different” run through all the movies. It is this theme that has generated comparison with autism. The comparison between the X-Men and autism can’t be taken too literally but the beauty of the themes comes through in the details. The creators have done a wonderful job of letting these details shine in the ambiguity of the moral choices that run through the movies.

In the third movie, a cure is discovered to reverse the effects of the mutant gene. Some mutants want to destroy the cure while some want to take it. Some neurotypicals (I mean non-mutants!) want to force the cure on all the mutants, and others simply want to make it available. The parallels between the perspectives on a cure for autism are obvious.

There were two parts of the movie that I found extremely thought provoking (Spoilers ahead!) In one scene, we find one of the characters injured and her power is left in control of her subconscious, rather than her conscious mind. This leads to destruction and death as the subconscious mind lashes out with little control. One of the leaders tries to heal her by altering her mind by building walls between her conscious and unconscious mind. Another character intervenes as he perceives it to be an attempt to change her from who she is, even if she is injured. The scene speaks to me of the dilemma of using any type of neurological medication, and how the intention can be anywhere along the spectrum of curing, healing, helping, changing, or destroying part of a person.

The second theme that struck me was the one that impacted mutant characters who considered taking the cure. We saw characters make both choices and saw two of them struggle while coming to terms with a choice. It’s too simplistic to assume one choice was right and another wrong. Perhaps each choice could be made for the right or wrong reasons by anyone. At what point is it right to accept our abilities and limitations and at what point is it right to change them for other abilities and limitations. We can make these changes, to varying degrees, through medication, education, psychotherapy, diet, exercise, surgery, and a variety of other choices available to us. Are some choices good and others bad? What are the criteria for deciding?

If you haven’t seen the movies, and stories based on comic books do not sound like your type, consider watching them anyway. The theme of diversity runs through all movies from the opening scene in the first movie where one child watches another taken to a concentration camp because he is “different”. It’s an epic, it’s a morality play, and it’s way beyond what most people expect from a comic book.

If I were the kind of person to give unsolicited advice, I’d offer some to Bob, Suzanne, and Katie Wright. If I were that kind of person, I’d probably post it on the internet and make an attempt to mix witty humor with philosophical insights into the human condition. I’d make sure that most of the advice was appropriate for many people, not just the Wrights. I’d probably organize the advice into a list because lists are so neat and tidy. Of course, I’d have to number the items on the list to give it the impression that some items have more value than others, as designated by a higher or lower number. I’d have to present it as a “Top 10″ list, both because it’s been funny for David Letterman for 25 years and also because all ‘best’ blog posts are Top XX lists (just check digg). I’d title my list Shawn’s Top Ten Pieces of Advice for the Wright Family. But I would only do this if I were the kind of person to offer unsolicited advice.

Shawn’s Top Ten Pieces of Advice for the Wright Family

10. Breathe In, Breathe Out, Move On

9. Remember that the term “Dysfunctional Family” is redundant. For all of us.

8. While I normally welcome events that may slow down the ongoing assimilation of the world by Autism Speaks, family fights are an exception. I’ve seen and experienced family relationships severed, temporarily and permanently, over similar disagreements of principle. The losses are always tragic. Make sure yours are only temporary.

7. Your issues are not much different from any family running a business. The needs of the family and the needs of the business are not always in agreement. When this happens, choose wisely. When you or someone in your family chooses wrong, refer back to item 10.

6. Your 15 minutes are over. Please exit stage right.

5. Money doesn’t buy happiness, and wealthy grandparents can’t always ‘fix’ things. Besides, the most important things to fix are inside ourselves.

4. I’m really glad the New York Times doesn’t consider the disagreements in my family newsworthy. (OK, that one wasn’t advice, but I really meant it.)

3. When it starts to feel like everyone is against you, you are probably your own worst enemy. I’ve been there and done that. Refer back to item 10.

2. The African proverb “It takes a village to raise a child” is dead on. However, don’t stand around waiting for the village to help your child. Instead, participate and help someone else’s child. And fund raising alone doesn’t count as participating in the village.

1. Don’t pay any attention to the advice of bloggers.

MJ is always happy when he is making something. It can be building a Lego, baking cookies, or a number of other activities. A week or so ago he told me he wanted to make a video. The subject was his often performed rendition of the Christmas song Dominick the Donkey performed by a pair of nutcrackers. It was his video, so all I did was film it, letting the setup to him. I still laugh every time I see it.

Wade’s recent post on the Combating Autism Act got me paying more attention to this often discussed (except in House of Representatives) piece of legislation. After ranting a bit in the comments to Wade’s post (Sorry Wade, I’ll keep future rants on my own blog!), I paid a little more attention to what has been going on.

I was pleasantly surprised at the amount of information that was so readily available. I was able to see Rick Santorum and Joe Barton on CNN via YouTube. I heard an interesting interview on my iPod. Heck, even the House and Senate have a wealth of information on-line. I was unpleasantly not surprised at the state of politics I found therein.

Growing disillusioned while conducting my research, I thought back to a time when politics wasn’t so petty and ego driven. To a time when people in Washington cared about doing what was right. To a time when people not only did the right thing, but also engaged in witty banter while walking down hallways. Yes, I thought back to a time when Aaron Sorkin was writing weekly episodes of The West Wing. To a time when 44 minutes of drama was enough to resolve political gridlock (88 minutes over two weeks for a particularly difficult issue). My thoughts eventually took me to this question: What Would Aaron Sorkin Do?

Now I’m no Aaron Sorkin, but I can’t help but think of a few scenarios that he might use to address the current situation. Since he’s a little busy with another writing gig, I’ll pass them on without his review.

• In a last minute attempt to save face, Rep. Joe Barton holds a press conference. He states that he sent an email last week to his entire committee indicating that he is willing to release the Combating Autism Act for a vote but no one replied. Senator Ted Stevens joins Barton at the press conference and goes on to explain that the email was never delivered because the internet tubes are clogged. The committee agrees to release the bill to vote as long as Senator Stevens agrees stop referring to the internet as a “series of tubes“.
• Sorkin updates the story from The West Wing season 2, episode 17, in which an elderly Senator filibusters in order to get a bill passed with money for autism research. In the West Wing version, Senator Stackhouse from Minnesota reads recipes for 8 hours, preventing the Senate from adjourning for a weekend recess. As the filibuster eats into the weekend, the White House staff realizes that the Senator has an autistic granddaughter and rounds up support for adding the autism research money to the bill. Sorkin would make some adaptations as House rules preclude a filibuster. Changing the storyline to keep Barton from going home for Christmas would be interesting.
• In a third possible scenario, Representative Duncan Hunter, Chairman of House Armed Services Committee, submits a bill to the house floor for a vote. The bill allocates $1 to fund upgrades to the US military base in Qumar. Before the vote, a Fellow Californian, and Chairman of Appropriations Committee, attaches an amendment consisting of the entire Combating Autism Act.
• House Republican leaders show up in Barton’s office and tell him to let the bill go or lose their votes for any leadership position for the next session. Again leveraging the script he penned for The Stackhouse Filibuster, Sorkin has President Bush, within earshot of reporters, saying of Rep. Barton “He’s a curmudgeon. A grouchy old crank,” The House leaders and President Bush also force Barton participate in the annual Big Block of Cheese Day. He is assigned to sit down with Mike Bernoski and actually listen to what he has to say.
• In my last scenario, Barton realizes how out of touch he is and releases the Combating Autism bill. In a press conference he says “If 244 Representatives cosponsored the Combating Autism Act and only 14 cosponsored my NIH Reform Bill, maybe something is wrong with the bill or my politics.” Nah, that one is too idealistic for even Sorkin.