A view of autism from along the spectrum

I caught up on my blog reading today after a week in which one of my sons needed a level of support beyond what is ‘normal’ even for our family. He continues to get the support he needs and the long weekend has offered the chance for a breather and some reading time.

The Autism Speaks video continues to generate discussion. Much of the response has been negative and with characterizations of the parents that included “whiny” and “selfish”. It’s been in these descriptions that I’ve noticed that something is missing. And before I go further, let me clarify that this post is about the video and the resulting discussion. It is not about Katherine McCarron’s mother.

The thing that’s been missing from the discussion is simple: compassion. Sure the video presented a view of parenting autistic children as particularly dismal. We observed the parents behaving in ways that seem very unsupportive of their children. Many have said that the parents need to stop whining and complaining and get over it because “that’s life.” I completely agree with the assessment that we need to take on life’s challenges rather than letting them get the best of us. However, we also need to recognize that life’s difficult times can include depression, loneliness, and feelings of helplessness that may even be called despair. It includes periods of frustrations, adjustments to those frustrations, and hopefully acceptance. Life dishes up these difficulties to all of us at different times, in different amounts, intermixed with the joy and the happiness. Its best not to judge but to count our blessings for being in a better place.

It seems reasonable that the producers of the video would seek out those parents who were at a low point in the cycle of ups and downs that life dishes out. Its those parents that would exhibit behavior that supports their message. Perhaps the parents were even encouraged to talk and behave in ways that were very different than they would off camera.

We know next to nothing about the parents in the videos other than they are struggling to deal with their child’s autism. My perspective of neurodiversity is that we need to allow room for those that are emotionally strained, people who pessimistic in their outlook, and even those that are whiny. The proper response is to be firm in our own convictions but also offer compassion, for both parent and child.

I know many parents of autistic children who have challenges far beyond mine. Some have spouses that are in denial and unsupportive. Some have families that lay the responsibility for the child’s differences at the parent’s feet. Some have doctors and teachers that tell parents that the problems are all in their head. Many have yet to find a network of people that offer support and are instead surrounded by blame and judgment.

Over time, I hope all parents can provide the love and support that their children need. I also hope we can find compassion for each other during the times that we struggle.

I posted a few weeks ago about how Ross Greene’s book “The Explosive Child” provided me with some renewed energy in working with one of my sons. I finished the book a while ago, incorporated new strategies and have, in some ways, already moved beyond them.

One of the core strategies presented in the book for dealing with explosions is prevention. Greene recommends identifying what triggers them and pre-planning alternate approaches to dealing with the triggers. The general idea is that the child doesn’t want to have a meltdown either, so work with him or her to be prepared for the triggers.

They are good ideas and good strategies. However, I felt that something was missing. If I identify the cause of the trigger, I’m only guessing at it. Put another way, I can probably identify the external cause, but I can only guess at why that external event triggers a meltdown. The real cause of the meltdown is the internal reaction, not the external event. I have two choices for identifying the internal cause, I can guess or I can have my son tell me.

Guessing is pretty easy, and has some short term benefits as I can probably help avoid some of the triggering events. The benefits have limits: I may guess wrong or I may not be able to prevent all the external events.

Somewhere along the line, without fully being aware of it, I decided that I was going to use each meltdown as a window into what my son is actually feeling. I started asking more questions about how he felt, what kind of help he wanted, and what he wanted to do. I gave him options and let him choose if he was able. I let him answer questions if he could. Of course all this was packaged up with the usual techniques of back scratching and cuddling with our dog Stitch. If he couldn’t tell me what he needed, I waited.

I don’t know if this technique will help but it has the potential to teach both my son and me some lessons about the causes of the meltdowns. Hopefully we can then both learn and adapt. Tonight was probably the first time that he was able to tell me what precipitated the meltdown without placing blame on something external. Our next step will be to try to talk about it when he’s calm.

The hardest thing for me is that it’s been absolutely necessary for me to give up all preconcieved notions on how a particular meltdown will work out. It may mean my son goes to bed an hour late, eats oatmeal for dinner, or misses a planned family event. It may mean I go to work late, or not at all. I need to drop everything else and just be present for him.

Or if I can’t do these things, I need to turn to my wife and give her the signal to take over. And yes we really do have signals. Some involve words, others use gestures, and some rely on being able to dial the cell phone ‘hands free’ in the middle of meltdown.

I found an unexpected benefit to this approach. If I’m able to completely give up all my other plans and give my full attention to my son, even a meltdown is an opportunity for quality time. As we work through it together, we’re getting to know and trust each other more and more.

I wanted to write a post with this title for a long time. The recent dialogue over the Autism Every Day video provides an opportunity.

I made a point of not watching this video when I first read about it in one of Wade’s posts. I figured that I could read a lot of blogs in the 14 minutes it would take me to watch it. Heck, if I wasn’t such a lousy proof reader, I could even write something on my own blog in 14 minutes. I read a few more blogs tonight, including Kristina’s and Susan’s and figured it was time to see what all the fuss is about.

Based on what I read, I expected to see 14 minutes of people talking about suffering and struggling. Because I was looking for the negative, I noticed the mothers that smiled and had positive things to say. And when I heard the more negative emotions, I recognized that I’ve felt all of them at one time or another. Every single one.

I then realized that I wasn’t watching the perspective of the parents. I was watching the perspective the editor of the video. The one that chose which ‘sound bites’ to include and which ones to leave out. Recognizing how much work goes into professionally editing and producing a movie such as this, I know that we have seen very little of what what these families experience on a daily basis. I’m sure they feel a spectrum of emotions, and we’ve only seen a few glimpses.

I keep very low expectations for any type of media coverage on autism. It’s not that I expect the coverage to be bad, but rather that I expect it to cover only a very small part of everthing that I’ve come to know as autism. How much can really be said about autism in 14 minutes? Not much. Even less when you consider that your audience includes people that know very little about autism and that you must include interesting and engaging settings, custom graphics, etc. If this video was the only current dialogue on autism, I’d be concerned. It’s not. It’s part of the story, but its not the story.

In a recent post on coaching, I described how I often find motivation from others that helps me to work at becoming a better parent and hopefully a better person. I’m often aware of taking input from others in this manner. Many people have coached me, most without even knowing that I thought of their input and advice as coaching.

Sports anologies are very cliche, I know. But to me the word coach has such a rich meaning that I’m going to risk overdoing the metaphors.

After writing my post on coaching, I caught up on some blog reading and a particular post got me thinking about how I process the blog writings of adult autistics. I recognized immediately that the coaching anology didn’t fit. However, another came to mind.

I’ve heard stories about young major league pitchers being ‘taught’ by a more senior player. As the stories often go, the senior pitcher doesn’t take on the role of a coach. Rather than giving lessons, or motivational speeches, the senior pitcher simply allows the junior to closely observe all that he does. Rather than saying “Do it this way”, he explains in great detail “Here’s how I do it.” It’s up to the younger player to figure out how to integrate what he sees into his own particular style.

There are quite a few adults with autism that take the same approach as those senior pitchers. They share their experiences, insights, successes, and struggles. As a parent, I find the opportunity to read, listen, and observe to be incredibly valuable. I repeatedly find insights that help me better understand different aspects of autism. I may not not be energized and charged up by the experience, but I’m left with insights that remain long after an energy burst would have subsided. These insights help me better understand what my sons’ experience but are not yet able to describe. I recognize that my sons’ experiences are their own and I can’t expect anyone else to be able to describe it for me. However, I do know that my insight is growing and I have the opportunity to use this new found knowledge it in whatever way I think will help my sons.

To those of you taking the time, effort, and risk of sharing your insights and experiences: Thanks!

My youngest son has a developed a lot of language skills since we first suspected and later diagnosed autism. At age seven he is, at times, articulate and, at other times, incomprehensible. Sometimes the frustration is apparent on his face as he tries to get out the words. Other times the most complicated words and ideas just roll off the toungue. This is about one of those times when it all just flows.

Rock, paper, scissors became a favorite game a year or so ago. My son has shown a creative sense of competitiveness in some recent variations. He played a few rounds with his 19 year old brother before dinner a week or so ago. The last round before we ate went like this:

“Rock, paper, scissors, shoot!” Big brother throws rock. Little brother makes spinning motion with his hand and yells “Tornado! I win! Tornado beats everything!” Big brother puts a stunned look on his face as he realizes that he was beat by a 7 year old who is smart enough to change the rules when he needs to.

We ate dinner. Big brother later admitted to spending a fair amount of this time figuring out how he could throw something that beats tornado. After dinner, big brother was ready and challenged little brother to another round. The round went like this:

“Rock, paper, scissors shoot!” Big brother makes places his forefinger and thumb in a circle and yells “Black hole! It’s pulls in everything, even tornados.” Without missing a beat, little brother makes a whooshing sound and with perfect enunciation shouts “No, I have a black hole suck-a-lator and it just sucked up your black hole”. The stunned look reappeared on big brother’s face. We all laughed and listened to my youngest explain the relative strength of tornados, suck-a-lators, black holes, and the all powerful black hole suck-a-lator.

This is a moment that I will play back in my mind when I get concerned during the other times in which my son struggles to get out the words out or is forced to repeat things because I can’t understand him.