A view of autism from along the spectrum

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.

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.

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.

I’ve written before that parenting, at it’s core, is not much different whether you are parenting a child on the spectrum or a neurotypical child. However, parents, like ogres, have layers and some of the outer layers are very different depending on the type of child you are parenting. Here are three aspects of neurotypical parenting that I don’t miss:

Birthday Parties – kids on the spectrum don’t get invited to as many birthday parties as their peers. I don’t mind because far too many children’s birthday parties turn into incredible exercises in excess. There’s too much sugar, too much parental indulgence, and too many presents. There are exceptions, but no where near enough. Interestingly, while MJ and SJ have been invited to fewer parties, the ones they’ve been invited to have been more low key.

Little League – I had a lot of fun coaching LJ and MJ in little league. To clarify, I had a lot of fun until the players’ parents started getting emotionally invested in how their child performed. That transition for parents begins around age 8, and once a few parents go down this slippery slope, the fun begins to get sucked out it. I once saw a coach climb an 8 foot fence (his players were blocking his way out of the dugout) to run onto the field yelling because an 8 year old player on the other team appealed a play to the umpire. I saw another coach come onto the field and argue a call with an umpire after a close play at home plate. The coach was lucid enough to point out the marks left by the opposing player sliding into home but not lucid enough to recognize that the player was still lying on dirt next to home plate, injured. Having the call go ‘his way’ was more important than the health of the player. There are a lot of parents that make child’s sports a learning opportunity, but there are nowhere near enough of them.

Adolescent and pre-adolescent fashions – A comfortable t-shirt (no tags!) and some sweat pants or other athletic style pants or shorts are about all that’s needed for MJ and SJ. Back to school shopping does not involve any trips to abercrombie or Hollister or long hours at the mall. MJ and SJ are largely oblivious to logos, name brands and other fashion statements. My wife and I actually need to put a little bit of work into the clothes selections so the clothes don’t stand out too much (in a negative way).

Several months ago, Kristina posted a series of questions in a post at Autismland. One of the questions resonated with me and I’ve thought back to it regularly. Her question, and I’m paraphrasing, was “What’s different between parenting a child with autism and a neurotypical child?”

My initial response to this particular question is exactly the same response that I would give today: “It’s not that different.”

Parenting, at it’s core, involves two primary responsibilities. I’ll refer to the first responsibility as providing and second as nurturing and I’ll describe them in more detail below. Effective parenting stems from balancing the two. The process of balancing these responsibilities is the same whether the child is autistic or neurotypical.

The first responsibility, providing, is more complex than it sounds. It encompasses not only providing for physical needs such as food, clothing, and shelter, but also emotional and intellectual needs. It also includes protecting our children from harm in all of the realms. It means keeping them healthy and educating them. It also means protecting them from making big mistakes, sheltering them from dangerous situations, and advocating for them in a variety of situations.

The second responsibility, nurturing, is similarly complex and also covers the physical, emotional, and intellectual realms. Nurturing is how we help our children grow so that, over time, they depend less and less on others to meet their physical, emotional, and intellectual needs. Nurturing means teaching our children to eat, use the toilet, dress themselves, and interact with others. It also means teaching them to make decisions, and to live with the consequences of those decisions. It includes developing their skills to assess risk in new situations and to advocate for themselves in a variety of settings.

Balancing these two responsibilities is complicated no matter what the child’s strengths and weaknesses are. Almost every choice we make as a parent implicitly includes a decision about this balance. We make these decisions dozens of times each day. The decisions varying from the trivial of ’should I let my child win while playing checkers?’ to the more significant of ‘What is the best school setting for my child’.

I’m a parent to both autistic and neurotypical children and can say from experience that the decision making process does not vary from child to child. The variation is in the parameters upon which the decision is made including:

• What are my child’s capabilities in regard to this particular situation?
• What are the possible negative outcomes and what are the risks that go along with these outcomes? Is the impact of a negative outcome a short term one or will it be long term set back?
• What are the possible positive outcomes and how significant is the benefit of these outcomes? Positive outcomes can include both the obvious successes as well as the learning that comes from making mistakes.
• What are the possibilities for me to step back if things go better than expected or intervene if things go worse.
• What are my own capabilities to provide and nurture in this situation?

Because the paramaters vary, the appropriate balance between providing and nurturing will vary from child to child and from one situation to another. But the process is the same and it is the process, not the outcome, that defines parenting.

Since reading Kristina’s question, and continuing to reflect on my response, I find that I now continually make decisions in the context of striking the appropriate balance. I’ve always considered this balance in an indirect way, but it’s become more of a conscious, rather than subconscious, part of my decision making. I consider this balance when SJ walks through a parking lot from the car to a store and does not want to hold my hand. I think of it when I ask MJ to do something that he doesn’t enjoy. It comes to mind when LJ discusses his plans for work and college. I think of it when I decide how to introduce a new activity or responsibility any of the boys. Basically, I think about it all the time.

Despite a healthy pregnancy, our oldest, LJ, came into the world in crisis. There was fetal distress. There was an umbilical cord tightening around his neck. There was a ‘crash’ c-section and a spinal that didn’t take, There was the searing pain of an unanaesthesied abdominal incision. There was screaming. There was a newborn boy with blue skin, a dangerously low heart rate, and no breathing. There was a doctor’s voice calling out an Apgar score of three. There was also a team of professionals that resuscitated LJ and pulled him through those first few dangerous minutes. It was not pretty, but LJ and Lee both recovered beautifully.

Nine years later MJ came into the world following a high risk pregnancy. A pregnancy can be labeled high risk for many reasons, and there were a half dozen factors for which MJ’s qualified. As the day of a scheduled C-section approached, I decided to observe the surgery rather than just standing to the side. I wanted to see MJ emerge into the world in a safe, controlled delivery. However, when it came time, Lee was struck with fear as the memories of LJ’s delivery were too much to put aside. I immediately gave up my viewing position and sat next to Lee, holding her hand and providing comfort. It was where I belonged and where I chose to be.

The delivery went very smoothly and Lee was able to smile rather than scream. The doctors called out some Apgar scores that were high enough for me to know everything was OK. The doctor handed MJ to me to take to Lee. We had a few moments together but I was soon soon directed out of the room with MJ so the pediatrician could begin his checks. I handed MJ to him and found myself an observer again as the wheels in my mind began to spin. Everything looked OK but, perhaps due to months of hearing the term high risk pregnancy, I began wondering if everything was ok. “How do I know MJ is OK? He looks ok, but maybe it’s too early to tell.” At that moment, I realized that there was no way to know if he’s ok or or not. I could know that some things were ok, but I couldn’t know about everything. The realization of that moment is imprinted on my memory forever.

Three years later, Lee’s pregnancy with SJ had a few high risk factors, but there were fewer concerns than with MJ. The level of anxiety was so much lower that, as we drove to the hospital at 6 am for the last of the c-sections, I swung by Dunkin Donuts for coffee. We laughed with the nurses who tried to make me feel guilty for having a coffee as my wife was preparing to give birth. SJ’s delivery went smoothly for all and I carried SJ to the nursery where his oldest brother was waiting. It was a great day.

As I look back, it’s the moment after MJ’s delivery, when I realized that I couldn’t know if everything would be alright, that stands out. It was both liberating and frightening. I recognized that the future held no guarantees and that I better accept it.

Some might think that when MJ and SJ were diagnosed with ASD’s, I got my answer to the question of whether or not they will be OK. Some might think that the answer I got was “no”. Nothing could be further from the truth. Their future may be more clear than the day they were born, but it still cannot be predicted. The answer is not tied to autism.

In the eleven years that have passed since I first asked the question “Will my son be OK?”, I’ve recognized that it wasn’t even the right question to ask. Instead the questions to ask are “Are my kids OK today?” and “Am I doing things to make tomorrow the same or better?”

Yes, and Yes.

My intermittent breaks from blogging have been a very tangible indication of the cycles that my life takes. When I started this blog almost two years ago I would have felt a fair amount of guilt for not sticking with it diligently. Not so any more. I’ve become more willing to accept the cycles. It’s easier to roll with them than to fight them.

I wrote a few posts about some of the difficulties MJ has had over the past several months. While the times have been challenging for me, I know that they are much harder for him. I’ve been working at teaching / coaching / guiding him to navigate his way through the challenges. Some of the solutions require some personal growth for MJ, while others require that we continue to adapt the environment to his needs. Others require careful medication management. All of these require that my wife and I stay on top of our game if we want to make a long term difference.

Parenting has consumed a tremendous amount of emotional energy over the last few months. There’s been very little energy left at the end of the day for either writing or reading blogs. I made a choice to conserve the energy that could be spent talking about autism on-line and instead keep that energy in reserve for parenting. It’s one of the ways that I’ve learned to adapt to the cycles. A wise man named Jimmy once wrote, I’ve had good days and bad days and going half mad days. None of the days last forever but it’s good to have some energy in reserve if needed.

I’ve seen so many changes in MJ over the past few months. While the challenges have been immense, so has his growth. The biggest indication of growth is that he is also learning to roll with some of the cycles. There’s a long way to go, but he is learning. Watching my boys grow is one of the greatest feelings I’ve known.

That’s enough of a rant for now. It’s time to get back to writing. As a wise man named Harry once wrote, All my life’s a circle.

This week, Lee took MJ and SJ on a short visit to a friend of a family member. The woman they visited knew that both boys were on the spectrum. During the visit, the SJ asked the woman for a drink of water. While in the kitchen, she asked SJ if she could “Say a prayer over him to help him get well.” SJ promptly replied, “No, thank you” and returned his attention to his drink.

When Lee told me what happened, I laughed at both the well intended, but misguided, efforts of the hostess as well as SJ’s perfect response. SJ demonstrated exactly the kind of self advocacy that I want all of my kids to have. He was direct. He was polite. I don’t know exactly what he was thinking when he heard the request. It’s safe to say that SJ did not stop to ponder the question of whether or not his autism makes him not well. I’m sure his response was not based on the concept of neurodiversity. I expect that his motivation was much more simple. Nonetheless, he was direct, and he was polite. I can think of a better way to start advocating for what he wants.