A view of autism from along the spectrum

This is not a post about recovery from autism. If that’s what you’re looking for, move along; there’s nothing to see here.

Recovery is a powerful concept for me. The word itself evokes ideas of struggling against powerful forces such as addiction or cancer. It makes me think of extremes from the relatively simple recovery from a broken bone, to the more life-changing recovery from losing a loved one to death.

The past year has been full of relapses and recovery for me and for my family. We found ourselves in the midst of crises without a clear path out. We faced decisions that I once considered unthinkable. Nonetheless, we have come through intact. I look back at this period with thanks and gratitude yet still surprised at how long recovery can take.

The Relapse

A little over a year ago, MJ hit what would be mildly described as a “rough spot.” It would be more accurately described as a challenge so significant that it put all of his intellectual, emotional, and social development at risk.

It would take a long time to fully describe the issues MJ faced. Professionals used a variety of labels to but I prefer the simple description: “major difficulties with emotional regulation.” While we saw similar issues in the past, the severity and longevity of the challenges were what placed MJ at such a high level of risk.

MJ, somewhat suddenly, appeared to lose most abilities to cope with any emotional stresses. Many of the triggers were things associated, to some degree, with Aspergers Syndrome or other ASDs. He was not able to be at all flexible if things did not go his way. He was hypersensitive to slights (real and perceived) from those around him. Environments with lots of stimulation raised his level of anxiety to extreme levels. However, unlike when he was younger, it was not obvious from his behavior or mannerisms that he was experiencing anxiety. The end result was a frequent loss of self control that led to self harm, harm to others, or some type physical damage.

The outbursts became more frequent and restraint was sometimes necessary to secure MJ’s safety and that of those around him. We decided late last winter that dramatic steps were required and we hospitalized MJ. He had been hospitalized before and the stays were helpful in implementing medication changes. This time, however, we ended up back at the ER within two weeks of his discharge with the same problems. At the ER, staff told us that there were no child or adolescent psych beds available in the entire state. There were a few out of state facilities that would have been a great fit but there were no openings there either. I stayed up that night in the ER, and methodically drafted a list of options. After lengthy discussion with my wife and several doctors, we implemented a medication change and brought MJ home. We also admitted to ourselves that our family was in crisis and began pursuing help from avenues that we had previously avoided.

MJ stabilized for a while and then regressed. We began to consider whether or not we could keep MJ safe living with us. Just considering alternatives was heartbreaking for me. We looked at residential schools and found several that would probably be wonderful places if MJ’s behavior was not a problem. However the safety issues resulting from MJ’s problems with emotional regulation ruled out all the “positive” places and left us with a very short list of options, none of which looked healthy. I became driven to make less dramatic options work.

Things remained rocky and in the summer we decided to hospitalize MJ again. We chose to go to a different hospital this time, making our choice based on recommendations from doctors we trusted. It was the shortest of MJ’s hospitalizations, yet the one with the most significant changes in medication. I don’t like to pursue hospitalization but the one very positive aspect is that the medications can be changed more rapidly than at home because of the level of oversight.

We continued some slight medications changes after MJ returned home and reduced the amount activities in which MJ participated. It became clear that the extra activities were causing anxiety for MJ. We decided that safety was the number one priority for MJ and the other activities, while they had their benefits, put safety at risk.

During this period, I became so focused on MJ that the rest of my life was left out of balance. The stress and worry had a lasting impact although I would take on just as much responsibility, stress, and anxiety tomorrow if MJ needed it.

The Recovery

Since beginning the school year several days after leaving the hospital, MJ has had his best year ever. He’s had no safety issues and has been able to keep his emotions from escalating. He’s been happy, participating, and even building some new friendships. The few rough spots he’s had have been very minor and he easily worked through them with some very helpful and accommodating staff.

At home, things have been better as well. Our token economy focused exclusively on safety for several months. MJ has done so well that we’ve been able to start working other things in again. Most importantly, MJ’s been happier. There’s been more TV and video games, but we’ve set limits and within those limits, MJ is able to have enough control to keep the anxiety level low. A friend of the family that sees MJ weekly recently said that this is the happiest she’s seen him in three years she’s known him. So with all of the challenges he faces, MJ has made remarkable changes. Meds and the environment helped, but he’s put an enormous amount of work into growing and developing self control.

The only aspect of this recovery that surprises me is the feeling I get when MJ experiences some difficulty. The months of emotional struggles and unsafe situations affected me as well as MJ. When he begins to exhibit some emotional struggle, I find myself bracing for a full blown escalation even though it hasn’t happened in 7-8 months. It’s been difficult to relax and let my guard down.

In the end, the responsibility for recovery is mine. The expectation of “recovery” is often place on the autistic person. As a parent, I often overlook the responsibility that I have to recover from my own issues. It’s working through the recovery that gives me back my abilities to be the parents that I aspire to be.

Back when MJ was a toddler, he showed an intense interest in lights and switches particularly those on cars. Lights on cars were great, and switches to turn them on and off were even better. The pervasive interest was an early sign of Asperger’s that we didn’t fully recognize at the time. We just accepted it as part of his personality.

When he hit five, we began noticing issues with proprioception. OK, we couldn’t really not notice because MJ had several falls and broke his arm three time in a period of about 18 months. We grew accustomed to the sight of MJ wearing a colorful cast on one or the other of his arms. His last break was a major one requiring surgery and several casts. He chose red for the first one, yellow for the second, and green for the last one. He told us that he picked the colors because they are the three colors in a traffic light, starting at the top, and we recognized that an interest in lights continued to be part of MJ’s personality.

We went about six years without any further breaks, until a week or so ago, when MJ wiped out on his bike when he hit a patch of sand on the street. We had the easiest of 3 trips to the ER this year and MJ is now sporting a bright green cast, chosen in honor of his favorite video game character, Luigi.

This weekend, I installed a new garage door opener. MJ picked it out as he knew the fastest and quietest model based all the ones he’s seen in neighborhood. Because of his arm, MJ couldn’t help much with the installation, but he stayed with me almost the whole time, did what he could, and correctly pointed out several of my mistakes. As work progressed, I could sense his growing anticipation of hooking up new switches and programming the remote controls. He was especially eager to test out the LED sensors that stop the door from closing on someone or something and was very disappointed to find that we didn’t have the correct light bulbs to install. When I finally finished, MJ tested the door about 20 times and, with remote in hand, showed it off to everyone he could find.

MJ’s grown a lot and many things have changed, but in some ways it feels like where we were six years ago. MJ’s in a cast and enjoying lights and switches. Some may look at the situation and feel sad. I find it comfortable and even happy. My wife and I know how to handle broken arms and we can also take a household project and turn it into an activity that brings a lot of joy to MJ. Six years ago MJ simply liked to look at the lights go on and off. Today he’s proudly helping to hook them up and program the electronics. It’s simply a big kids way of playing with the lights and switches.

As David Byrne sang with the Talking Heads: “Same as it ever was . . .”

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.