A view of autism from along the spectrum

A recent experience has me rethinking and challenging some commonly held beliefs regarding autism and empathy.

MJ received a phone message this week from a friend who was clearly distraught over the loss of something important to him. When MJ called him back, he quickly stepped into a role in which he was offering support and advice. At one point I heard MJ say “I know you’re upset and I don’t want to hang up until I know you’re feeling better.” Clearly MJ was expressing empathy.

I relayed the experience to my wife later and she responded that she’s seen MJ often express empathy, but almost only when the other person was in a worse situation than MJ. Once again, my wife had made a very perceptive observation on something I had overlooked.

This observation struck a chord with me and I realized that I, also tend to express more empathy when someone was in a more serious situation than I am. I do it at home and I do it at work. I took it a step further and realized that this is a fairly typical behavior. The examples are countless. We complain about our busy days, but if a neighbor or family member is ill, we find a way to help. I’ve seen colleagues overburdened at work, but if a another asks for assistance, most are likely to stop their own work to help out. We donate to charities because there are people who need money more than we do. In the days following the 9/11 attacks (in an area of the country not directly impacted), I noticed that almost everyone behind the wheel of a car began driving incredibly politely. The change in behavior was obvious and observed by many. The selfish acts of cutting people off and running red lights and stop signs disappeared. Instead people waved each other into the flow of traffic and patiently waited their turns at intersections. People knew that every other driver was carrying a similar and weighty burden and deserved to be treated as such. Prior to, and after that period, it would be easy to conclude that most drivers completely lacked empathy for each other.

So perhaps the autistic demonstration of empathy is not all that different from the neurotypical expression. Perhaps the perceived lack of empathy does not reflect the capacity for empathy but rather reflects the ability to understand another’s situation. If one cannot understand another’s situation, empathy is unlikely to be displayed. If the situation is understood, perhaps empathy is present more than we expect.

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.

This past holiday weekend provided a reminder that the places in which our family fits in has changed over the years. Fortunately, although one changed for the worse, another changed for the better.

We attended a large party on Saturday and MJ was looking forward to it all day long. This was not a typical family picnic, but was a very large party with tents, an inflatable slides and a trampoline for the kids and a band for the adults. MJ was very excited, until we got there. When the band started, it got very loud. Strike 1. We knew some family and a few others at the party, but not many. MJ was unable to connect with the cousins and family friends that were running around playing (or maybe he didn’t want to) and was mostly standing around, looking bored and lonely. Strike 2. Lee and I spent almost all of our time watching MJ and SJ. SJ was playing but, for safety’s sake, we didn’t want to let him out of our sight. Strike 3. We did not fit in here. We went home and had a ‘movie night’.

On Monday’s holiday, we faced a choice of what to do. We have extended family with a house on a lake about 40 minutes away. The lake has always been a gathering location for family on the three summer holidays. When MJ’s meltdowns became an issue a few years ago, we began staying away, knowing that the being closer to home in a more controlled environment was for the best. Since then, MJ has matured, and the number of people gathering at the lake have diminished as kids have grown and moved away and some of the older generation has passed on. We decided to try it again.

What a joy it was! We packed some food, I got down my kayaks from the racks for the first time in three years, strapped them car and off we went. We found a welcoming group of about 20 when we arrived. The boys wanted to kayak immediately, so I sat SJ in the kayak with me and put MJ in his own. We paddled for a mile or so, stopping to walk barefoot on an island across the lake. SJ took a few tries at paddling and MJ made the whole trip with enthusiasm and absolutely no complaints about the physical work required. When we returned, the boys swam and played in the water. Their older cousins took them out on a pontoon boat, patiently giving them each a chance to drive. We shared snacks, caught up with family and introduced Stitch to ‘the lake’. The boys were enthusiastic and the others around them were accepting. It was a beautiful day. I wish I had a picture of us returning from our kayaking excursion as being out on the water with MJ and SJ was the highlight of my summer. And to top it off, we had place on shore where we ‘fit in’.

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.

My blogging is always been erratic, but I feel a writing binge coming on. I’m going to ride out this desire to write while it lasts.

The binge has it’s roots in many places. The past two weeks with the boys have been incredible. I finally saw X-Men III. Posts that I’ve had in my head since I started blogging over two years ago. Katie. The yearly planning of the parent support group my wife and I run. Emails I’ve exchanged with other parents this summer. A much needed break from focusing on my job. A sense of reflection stemming from an upcoming birthday (A Pirate Looks at Forty-Four).

The first post of the binge goes up before I go to bed tonight, before the pirate turns forty-four.