A view of autism from along the spectrum

We finally made the trip to Disney World that we’d been planning for about a year.  Things have been rather challenging the past few months and we considered canceling up to a week before we left, but we decided to go ahead.  It was a good call. 

I’ll write a post soon with some tips for those going to Disney with kids on the spectrum but today it’s all about me with Things I Learned in Disney:

• A balance between intense planning and lots of flexibility on my wife’s and my part we’re the keys to setting the kids up for a successful trip.  Without either the planning or the flexibility, we would have had problems.  Come to think of it, that’s not very different than setting the kids up for success at home.
• Disney’s accommodations for guests with disabilities in the parks made a huge difference in our family’s ability to experience the parks and rides (more on that in another post).
• It’s possible for my kids to exceed my expectations.  It was great to be reminded of their potential.
• A good hotel pool has most of the sensory benefits and none of the over-stimulation of a water park.  I was amazed at how much of a positive impact the pool had on the boys.
• While, Disney does a LOT of things to make your vacation a great experience, there are still times when I felt treated like cattle.  I thought of Temple Grandin quite often.  There are so many places that they apply techniques similar to hers: making you feel comfortable, even happy, while waiting in a long crowded line.  However, there’s a lot of other places, where you’re not kept so comfortable.
• Even an introvert like me can have a lot of fun striking up conversations with strangers in line.
• It’s sometimes warmer in Connecticut than it is if Florida.  Unfortunately, that sometimes happens when I’m in Florida.
• I can handle being disconnected from the internet for 10 days.
• Did I mention that I thought of Temple Grandin a lot?
• Lizards are cool and the kids got a kick out of seeing wildlife different than they do at home.
• I need to teach my wife not to make a toast to a great vacation until after we arrive home.  12 hours after she made the toast, we were sitting in an airport, with our flight canceled and very few options for getting back to the airport from which we left. 

We made it home a day late, survived a detour through a different airport and awful traffic in NYC.  We were a little tired but all in one piece. It’s was great to have things go so well after the challenges of the past several months.

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.

My last post criticized the publishers of Parade magazine for inferring that there is no hope for Autism.  Much of my writing on this blog is intended to be hopeful, but it is unrealistic to expect us to be hopeful all the time.

I’m not suggesting that we give up hope, but I propose that parents of autistic children should not feel burdened to always feel hopeful.  No parent should feel such a burden.  Parenting, like all aspects of life, has it’s ups and down, it’s emotional highs and lows.  The emotions that I feel as a parent include joy, hope, anger (usually followed by guilt!), love, disappointment, happiness, and frustration.  If we characterize one of the emotions we experience as hope, we must recognize that we sometimes experience a lack of hope, which some may call despair.

None of these emotions are, by themselves, good or bad, and I propose that it is healthy to allow ourselves to experience all of them when they occur.  Trying to fight them or push the negative emotions under the surface usually results in more serious problems. 

Of course, acting on the full strength of these emotions can also lead to problems.  Making decision in the throws of joy may result in setting completely unreasonable expectations and set us up for a significant let down.  Decisions made during times of frustration or despair could cause harm to ourselves, our loved ones, or our relationships.

When it comes to emotions, both the positive and the negative, I’ve found it best to "ride them out".  Riding out the negative ones is harder and tolerating the pain associated with them can be very challenging. 

While I consider experiencing all these emotions to be normal, we must also be continually watchful that the emotions do not consume us.  Experiencing depression or despair that does not pass is a sign to look for professional help.  Continually shifting between extreme emotional highs and lows is a similar indication.  Some studies have shown that parents of autistic children may be more likely to experience depression or other mental health issues than other parents.  We should all be alert and get help quickly when we need it.  We owe it to ourselves and our children.

As you can tell from the tone of this post, it’s been a tough week. I am experiencing some despair that the current educational placement for one of the boys may not work out.  I know that the remaining options are inappropriate and fighting to build a new placement from scratch would require an intense amount emotional stamina, perhaps more than I have.  It’s a tough situation, but my wife and are devising multiple strategies to help and enlisting the advice and assistance of others we trust.  The hardest thing for me to do is avoid dwelling on the pain that would be caused to MJ should another change of school be needed.   The easiest thing to do is simply to be there for MJ when he needs me, today, tomorrow, and everyday. 

Yet, in the midst of all the worries, today I was also able to experience the joy of watching 9 year old SJ ride a bike, without help, for the first time in his life.  I’m hopeful, that by spring time, bike riding will provide another opportunity for physical development, and shared family time.

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.

As I wrote a few weeks ago, MJ has been participating on a panel of adolescents, teens, and young adults speaking in public about their experiences on the autism spectrum. MJ spoke as part of another panel last week. As I wrote about last time, someone who appeared to have very good intentions in mind, asked another “wrong question”. A couple told of a nephew with autism and their sadness that he couldn’t communicate with them and asked something along the lines of “how can I help him speak so he can communicate with us?”

The moderator occasionally tosses some of the questions to one of the parents of the younger panelists. I happened to be sitting next to the couple and could hardly contain myself from jumping up and answering. Instead, I waited patiently (ok, not very) while the moderator passed the question to other parent to answer. The mother talked about getting to know the child better and being supportive, gently working her way up to the real answer:

“You need to change your view of communication. It’s not just speaking. There are many ways to communicate and while you are waiting for nephew to speak, you’re missing the ways that he is communicating with you. Find out the ways that he communicates and learn to understand what he is saying, even if he doesn’t speak.”

I could tell the couple was disappointed in the answer. I leaned over and spoke a few words of encouragement. They obviously cared about their nephew and wanted to learn (or they wouldn’t have even been there), but their expectations were off. Hopefully they will continue to learn and grow and adapt to their nephew rather than expecting him to change for them.

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’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).