As I observed the phenomena that grew for days, I recognized that the term to best describe it is Mob Advocacy. There have been many facets of this phenomena.  I’ll call the three most prominent aspects The Good, The Bad, and The Ugly.

The Good

The best thing about the mob advocacy is that it put a large amount of pressure on the St. Lucie County school district to address the mistreatment of Alex Barton.  Prior to the mob getting involved, it seems that local officials did not take the issue very seriously.  The incident happened on Wednesday, and Alex’s mother appears to have filed several complaints that did not have much impact.  The police and the district attorney did not file charges and the teacher, Ms. Wendy Portillo taught her class on Thursday and Friday as if nothing happened. 

However, on Saturday, a news story ran on a web site.  It was picked up by a blogger with a lot of readers.  Other bloggers posted about it, and others sent emails to get the word out.  A few found the email addresses of the teacher, principal and the school board and published them.  Many sent emails to all of these people as well as the Governor of Florida.  By Monday it was one of the top stories on many websites that have nothing to do with autism.  By Tuesday, the school principal received over 700 hundred emails and the superintendent received over three hundred.  Alex and his mother appeared on CBS’ The Early Show, and Mis Portillo was removed from the classroom and assigned to the district offices. 

The story is far from over, but it appears that mob advocacy resulted in the school district giving the incident the serious attention it deserves. 

The Bad

You’re probably expecting "The Bad" to refer to the hateful remarks that became part of the discussion. I’ll save that for "The Ugly".

The Bad aspect of Mob Advocacy is that while many people played a role in garnering attention there is very little true advocacy we can do.  We can demand that Ms. Portillo be fired, chastise the school district for allowing this to happen, make arrogant statements indicating that we know what the most appropriate school placement is for Alex.  The reality is that this type of advocacy, coming from people who do not know the situation, is hollow.

I don’t know Alex, Ms. Barton, Ms. Portillo or any others involved.  I don’t know what Ms. Barton wants to come from this situation and if I could truly advocate, I’d want it to be for what she wants for Alex.  Outsiders like myself can propose solutions, but in the end, we’re too far away from the details to know what is best for Alex, what the appropriate consequences are for Ms. Portillo, or how to repair the damage of the lesson taught to Alex’s classmates.  After sending emails to the school officials, I emailed Ms. Barton and expressed my sentiments about the difficulty I felt in advocating appropriately for Alex.  I wrote that the best I could hope for was to "give you a little more leverage to advocate on Alex’s behalf."  It’s something, but it doesn’t seem like enough. 

The Ugly

It must be part of human nature that when large groups of people come together, in person or simply uniting behind a cause, ugly things will happen.  Many people wrote horrible things on-line about Ms. Portillo.  Others wrote extremely insensitive things about Alex and autism.  Others blamed the entire situation on Ms. Barton’s parenting.  These people and their comments were a small minority, but they added an ugliness to the discussion that was not needed. 

Bev at AspergerSquare8 wrote a beautifully honest and candid post expressing frustration with the ugliness that began to permeate the dialogue:

“I have made terrible mistakes in my life. I have harmed people. I have done my best to make amends for those wrongs and not to repeat the hurtful actions. I know that if my worst moments were shown to the world, were discussed on numerous sites, some with nearly a thousand comments now, I would not want to continue living. Yet I believe in redemption (not in a passive sense, but through hard work toward change) and I hope that others, including Portillo, do too.

When people start coming to my blog and talking about revenge and sending people to hell, it is time to take a break.”

In encourage you to read her entire post.  She has truly set the tone for continuing the Advocacy, but rising above the Mob mentality.

The theme of blink is that our minds are very effective at coming up with conclusions about the world around us in very short periods of time.  In many cases these conclusions, which are often derived subconsciously, are uncannily accurate.  Other times, our minds are influenced by experiences and prejudices that lead us to come to grossly inaccurate conclusions. 

Mr. Gladwell brings autism into his book when he describes situations in which we quickly form conclusions about people and their intentions.  He briefly presents Simon Baron-Cohen’s term "mind-blind" that describes the inability to read the non-verbal cues of others.  He also presents research and anecdotes from Yale psychologist Ami Klin which support the concept.  This material is all presented in the context of several tragic incidents during which he proposes that police officers became "mind-blind".  He postulates that their "mind-blindness" was caused by extremely high levels of stress due to events such high speed car chases or simple personal prejudices that escalated benign situations into something fatal.  He goes a step further and proposes that these police officers ignored lots of input from their environment because of their intense focus on a particular aspect of the situation.  Their focus narrowed so much that some assumed a suspect pulling out his wallet was pulling out a gun and others became became unable to hear what their fellow officers were saying to them.  Many officers involved in shootings report that they did not even hear the sound of their gun fire, although they knew they fired it and observed the results.  

blink’s coverage of autism is certainly superficial, and I admit to feeling some discomfort, almost offense, as Mr. Gladwell described the police officers in extreme situations as being "temporarily autistic".  I stifled my feeling of offense and continued reading because the first three quarters of the book convinced me that the author had some insightful things to say. I gave him some latitude and looked a little deeper for both his meanings and some fresh perspectives.  Fortunately, I found two views that made continuing worthwhile.

The first is that there is an aspect of "mind-blindness" that goes beyond autism.  All people, at certain times, disregard one form of input from their environment in favor of another. We may ignore people’s expression when we are confident that we know what they are going to say or do (even if we are wrong).  Many married women will attest to their husband’s inability to hear while they are reading the paper or watching TV. Most drivers have had the experience of finding themselves "not remembering" a part of a trip over familiar roads because they were on autopilot and didn’t observe their surroundings on that part of the trip.  We are always choosing to focus on certain aspects of our environment and ignore others.  Mind blindness is just one manifestation of this phenomena.

The second thing that I took away from the Mr. Gladwells writing is that we have the capability to improve our ability to make the quick and accurate  conclusions that he describes.  He presents several situations in which people learn to make more accurate conclusions about everything from recognizing fake pieces of art, to being able to predict the success of a marriage by observing a very short discussion between the couple.  In all the situations, people are able to become better at making accurate conclusions through a very simple technique: practice.  If practice can help a police officer distinguish between fear and aggression in a potential suspect, can practice help an individual learn to read nonverbal communication in others?  Based on the large number of autistic adults that have developed skills in this area, I’d have to say yes.  Reading nonverbal cues in others may require a lot of effort and energy for some autistic individuals, but I’ve met many adults that have shown the ability to develop these skills.  All people, autistic and non-autistic, are lacking in some skills.  Depending on the skill and the individual, improvement may be difficult but there is always the potential for growth.  Mr. Gladwell points out that the obvious way to achieve such growth is simply to practice.

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.

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 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.

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!

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.

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.

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.

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.