A view of autism from along the spectrum

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.

A sudden surge in the demands of both parenting and work have kept me from writing lately. Here’s a few of the things I’ve been thinking about during my down time from writing.

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!

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 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.

While doing some casual surfing this evening, I found link to an article titled Top 5 Things Every Extrovert Should Know About Introverts. It’s on a blog about self improvement written by Brian Kim.

The themes in Mr. Kim’s post are very similar to those that many of us write about in relation to autism: acceptance, understanding, and avoiding judgments. He describes, in general terms, that introverts think differently than extroverts (just in case the extroverts reading the post are lacking in Theory of Mind).

Since I first heard the term neurodiversity, I understood that it applies to all of us, not just those on the spectrum. Mr. Kim has shown that he understands about neurodiversity, even if he’s never heard the term.

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’.