A view of autism from along the spectrum

If I were a real writer, this would be called a fluff piece.

I found time for a few movies lately and came across two with some very loose connections to autism. At least I saw some connections. If you don’t, please remember that this is a fluff piece.

The first was a movie for the kids. My wife called me late one Friday afternoon at work and asked me to stop and buy a movie called Hoodwinked on the way home. I had never heard of it, had trouble finding it, and was not very impressed with what I could glean from the DVD case. Boy was I wrong.

Hoodwinked tells a familiar tale, the one of Little Red Riding Hood, from four different points of view. We first see Red’s story, than the wolf’s perspective, then the woodsman’s, and finally Grandma shares her tale. All the story telling is done for the benefit of the police and a detective trying to solve a crime. As the character’s tales intersect, we see multiple views of the same moments, each time from the perspective of a different participant.

The movie is a relatively low budget computer generated film. Nonetheless, it’s the most creative CG film I’ve seen since Toy Story. While Pixar has continued to push the limits of CG movies, Hoodwinked relies on a subtler approach to entertain by using clever dialog and creatively allowing the pieces of the story to be revealed. The boys watched the movie at least a dozen times and I enjoyed it each time I watched with them. They even played it a few time with the director’s commentary which is almost as entertaining as the movie.

The autism connection was simply an appreiciation of the approach of showing experiences from different perspectives. Generalizing across different situations is a weak area for my youngest. Interestingly, listening to the director’s comments probably helped him make connections that he would not otherwise have made. The learning opportunities are hardly earth shattering, but they are there, along with a lot of laughs.

The second movie is one for me: Serenity. Serenity is a movie based on a wonderfully written, beautifully acted, and poorly marketed TV series called Firefly that ran on Fox for about half a season a few years back. I never saw it until after it was cancelled and only truly discovered it within the past year, when I got the series on DVD and loved it so much that I had to buy the movie.

I doubt the movie stands on its own without the TV series as a the back story. And the series was admittedly unusual. It’s a futuristic western with a ensemble cast living onboard a spaceship. The crew includes former soldiers, a preacher, a pilot who plays with toy dinosaurs, a woman paid for her companionship, and a guy who never seems to have enough weapons. The crew spends most of their time making a meager living by smuggling shipments past the government. The show is filled with incredibly witty diaglogue, some of which happens to be in Mandarin. OK, maybe I understand why Fox blew the marketing.

The autism connection in this movie centers around two characters. A seventeen year old girl named River joins the crew with her brother. River displays many characteristics that remind me of autism. She’s not autistic. She’s been the subject of neurlogical experiments by the government and her brother, a physician, rescues her and tries to help her cope with the changes brought on by the experiments. Again, this is not autism, it’s fiction!

While it was some of River’s characteristics that first made me think of autism, it was actually the actions of her brother, Simon, that really hit home for me. While he is focused on ‘fixing’ things for his sister, his interaction with her is completely nurturing, supportive, and most of all respectful. Even while trying to protect her and cure her (again, this is not autism), he continually shows her an incredible amount of respect, discussing everything with her and allowing her to make decisions for herself. He treats her as a person. The crew catches on as well and midway through the movie the captain professes that the crew has risked their lives for the belief that she is “whole and not broken.”

While I recommend the movie, start with the series if your interested. It’s not for everyone, but it’s made me a Joss Whedon fan. And a browncoat.

As I’ve mentioned in previous posts, the past few months have been particularly challenging for one of my sons. I’m constantly thinking about ways to help him.

I realized today that there is one thing that I want to help him learn: knowing his limits. This may sound contrary to the popular notion that we should tell our kids they can achieve anything they put their mind to. Dreams are great, but on any given day, in a given situation, with a given set of constraints, we all have limits. Tomorrow we can change these limits, but today we still need to deal with them.

I’d like my son to be able to recognize when he’s in an environment that has become too simulating. I want to teach him to recognize the feeling that we all know as anxiety. I’d like him to realize when he’s getting tired. I’d like him to be able to identify situations that begin to cause him stress. I’d like him know when he’s had enough.

He’s actually already learning to recognize all of these limitations. He probably recognizes them as well as anyone his age. The challenge for him is that the environment exceeds his ability to tolerate it more often than it does for peers.

I really don’t care that his limits are ‘different’. I’d just want to help him recognize them so he can adapt / avoid / adjust or whatever works for him. He has helped me learn a great deal about my own limits. This past weekend, my family did some errands and visiting and spent a lot of time in the car. On Saturday’s trip, I found myself listening to a radio station that my wife chose while hearing periodic shouts in the back seat along with music playing from a game boy. We had lots of stop and go traffic mixed in with rain to add further stimulation. We arrived home and I was feeling more than a little agitated. I realized I was at my limit and I told my wife “I need to punch out for a while”. I had some downtime and got back to my ‘happy place’. We did the same routine on Sunday. This time my wife drove and I brought my iPod. It was a much better trip.

I would have never recognized my own limitations in this situation if it hadn’t been for my son. Without realizing it, he taught me to recognize when my environment gets to be too much. He helped me learn that those limits are OK and that I can chose how to adjust.

Its time for me to help him learn the same thing.

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.

I love gadgets, but I’ve never been enamored with cell phones. I’ve had a one for about 3 years, but I’ve never gotten as much use out of as I’d like. I got very weak coverage at home, no coverage at work, and dropped calls as I drove between the two. With the large number of challenges the family has faced over the past few months, it was no longer good enough. I needed to be reachable, no matter where I was. What follows is how I made it work.

Here’s what I wanted: a phone and service with great coverage at a good price. I wanted it to work in every room in my house and every part of my office. I didn’t care about cameras, mp3 players, downloadable video or anything else that didn’t make it a better phone. The only exception was Bluetooth to use with a wireless headset, primarily for my wife who uses her phone a lot.

I could have just read Consumer Reports and bought the highest rated phone from the highest rated carrier. That’s where the search eventually finished. In the meantime, I personally tried 6 different phones from three different carriers, often side by side. I compared these with several other phones and carriers used by friends and family.

I started with Cingular, my previous carrier. My experience confirmed what Consumer Reports said, that static is a very common. My old phones had lots of static, and a new, highly rated phone from Motorola had just as much. It gave me coverage in just about every room at home but little to nothing at my office. I sent the phone back.

I then ordered two different phones from Sprint. For some reason, Sprint’s phone selection is much more limited than Cingular and Verizon. As it turns out, the ones I got were not rated very highly for coverage. I had one from Samsung and one from Sanyo. They were OK, with good (but not great) coverage at the office and fair coverage at home. There was no static. Maybe different phones would have met may needs.

I went to Verizon last, only because I was able to get discounted rates from other two carriers. I got a pair of Motorola 815 phones and they do everything I need them to do. I get coverage in the center of my office building, all the rooms in my house, and no static. The comercials are right, it’s all about the network. At least where I live, the Verizon coverage is measurably better than the others. I sent the other phones back to Sprint.

My had the new phones just in time. Within a week of getting them, we were making multiple trips to the ER followed by daily hospital visits when one of the boys had a two week stay. The cell phones became invaluable.

New Motorala cell phone: $50. Activation fee: $25. Borg-like Bluetooth headset: $50. Being able to connect with my wife as we split the parenting duties: Priceless.

Here in New England, digging out usually refers to what we do after one of the Nor’easters roll through. Even the worst snowstorm I’ve seen required only about a day and a half to dig out. This storm has taken longer.

My family is digging out of what has been a particularly intense storm. I haven’t blogged about the details, because as my boys get older, I recognize that I need to be able to respect their privacy, even if I’m not concerned with my own. I also hate to dwell on the low points of parenting.

Nonetheless, I’ve come to call the family scene of the past few months ‘crisis mode’. It’s a situation in which all the normal rules get thrown out and we make up new ones as we go along. There’s no maps, the roads are unfamiliar, and the GPS doesn’t work. Most families get into this situation at one point or another. It’s not unique to families dealing with autism.

Oddly enough, parenting children with autism has prepared me to weather the recent storms. I learned how to be flexible, in ways that I didn’t think were possible. I learned to face the crisis with a strength that I didn’t know I had. The storms feed on the winds of emotion but we can still act with our own emotions in check. We bundle up and head out, turning away from the wind and the icy snow it carries. We’ve been here before and we’ve learned that no matter how deep the snow gets, we still pick up the same shovel. The tools are the same, it just takes more work to finish the job.

The Nor’easter metaphor seems out of place as the day lilies and the herb garden come back to life. It’s been nine days since it last snowed in Connecticut. And seven days since we dug the path out from our own storm. We’re all together again. We spent part of the day nurturing the plants in the yard back to life after winter. We spent the entire day nurturing each other. The boys may not have realized it, but I did.

A few months ago, I wrote series of posts on the topic of disclosure of our children’s diagnoses of ASDs to themselves, their schools, and others. I advocated for full disclosure to our children, at the level they can understand.

I find myself struggling with following through on that.

My wife and I have been open with both our boys and we talk freely about ASDs. It’s been pretty simple up until now. While my youngest had his diagnosis change from autism and PDD-NOS at a young age, the older of the two always had a diagnosis of Aspergers. Until now. A recent evaluation led to a change in diagnosis to PDD-NOS.

Personally, I don’t get hung up on the differences between the various ASD diagnoses. There’s a lot of characteristics to consider and I believe as long as you can ‘get in the ballpark’, you’re on your way to helping and understanding.

However, 10 year old boys are not always so flexible. He’s talked to his class at school about Aspergers and has even been involved in media coverage of Aspergers. He also has a very clear understanding that he and his brother have different diagnoses. He can’t necessarily tell you what the difference is, but his sense of identity definitely includes the label of Aspergers and he knows that his brother’s includes PDD-NOS. I wonder how hard it will be for him to lose a name that he has associated with himself for so long. It is a loss. I’ve said in a previous rant, Aspergers is just a better term to identify with than PDD-NOS is. Not the diagnosis, just the term.

I have thoughts of not telling him for a while. The label really doesn’t mean much to anybody else and he’s going through some difficult times. We’re currently very focused on establishing some stability for him. Why do anything to impact the stability we’re trying to build?

I know myself well enough to predict how it will play out. I’ll choose disclosure, as I always have, and I will do all that I can to use it as an opportunity for learning and growth. We’ll talk about the different characteristics of Autism, how the labels overlap, and how they are somewhat artificial. And then I’ll tell him that if he want’s to still wants to use the term Aspergers in describing himself that it will be perfectly OK.

Since my wife and I got involved in a parent support group, we’ve found that many of moments of ‘bonding’ between parents have been during discussions of their child’s special interests. Some of the special interests seem so unusual that it can be a huge relief to parents when we meet others whose children share the special interest.

I offer the following list in the spirit of sharing, and with a little concern that someone may misinterpret this list as belittling or making fun. I’ve been known to have a laugh over some of the special interests but no more so than I have over my own quirks. For the most part, thoughts of these special interests put a smile on my face, because they are part of who my sons are. My wife and I have gone out of our way and put both time or money into every item on the list. It’s usually a lot of fun.

So here’s the list, in roughly in order of the ages in which they appeared, with interest of both boys intermixed:

• Light switches - This was the first interest that we noticed and was the first sign that clued in a family friend that my son may have an ASD.
• Watching a sing along video tour of Disneyland.
• Wheels on Cars - Big pickup trucks with “deulies” were a big favorite.
• Backup lights on cars - This was an obvious growth on lights and cars. It’s also the only special interest that brought safety concerns. Watching a 4-5 year old run to the rear of vehicles as they were backing up in order to see the lights is rather frightening
• Buzz Lightyear - There was a period where my son put his Buzz Lightyear Halloween costume on every single day.
• Playing a handheld Wheel of Fortune game, even though my son couldn’t spell. I met a mother who was very relieved to hear my boys interest lasted longer than the game did and we had to replace it. Her son had gone through two and was on the third.
• Electricity - after we built a house my son used an electrical outlet tester and found several outlets that the electrician wired wrong. He later fixed the microwave. OK, he actually just unplugged it and plugged it back in, but it started working again and we were ready to buy another
• Fire Alarms - Within seconds of walking into a room or building, my son will know where the fire alarms and emergency lights are located. The sounds of the alarms also causes a lot of anxiety
• Books - Although the books change from time to time, there is usually a favorite that travels everywhere and often gets put under the pillow at night.
• Elevators - We go out of our way for an elevator ride. On a business trip, I once took a picture of the elevator in the hotel and emailed it home to my son. He was thrilled.
• Our golden retriever, Stitch. There’s also been a long term interest in Snoopy.
• Light Sabers - We have two boys at home and probably a dozen toy light sabers. We have every color, ones that light up, a double sided one, one that can be made into dozens of shapes. This week we got an interactive TV video game in which you hold a light saber and duel with characters on the TV.
• Trains - A trip last year on Amtrak from Pennsylvania to Connecticut was a thrill for my son. He looked out the window for five hours straight, mesmerized.
• Railroad crossings - The ones with gates on both sides and lots of lights are best.
• Color Laser printers - a current interest. I’m asked to buy one at least once a day. It’s also becoming a significant distraction in educational and therapeutic settings.

The opportunities for gaining insight into my boys’ thinking continues to come at the times when I least expect it.

I made a business trip last week to Central Florida. Yes, it was one of those rare business trips that takes me to somewhere to which I would actually travel for pleasure. The days leading up to the trip included much talk of a vacation to Disney World and of Dad bringing back T-shirts from this trip. My 7 year old indicated that he wanted nothing to do with either the vacation or the T-shirt. When asked why he didn’t want to go to Disney World, he replied adamantly: “It’s boring!” Subsequent conversation revealed that, in his view, a proper vacation must be to somewhere that has a subway. He continued to make it very clear that he didn’t want me to bring him a T-shirt, or anything else from Disney World.

I made an evening trip to Disney with some colleagues for dinner and shopping. As soon as I cast my eye on a tye-dyed T-shirt featuring the alien Stitch surfing a big wave, I thought I had a really good shot at bringing back something he liked. The boys named our golden retriever after Stitch and the pattern on the shirt was very appealing. While I didn’t want to force a souvenir on him, I also knew that I was bringing back something for everyone else. If he didn’t want it, it would be no big deal.

We’ll of course he loved the shirt. He insisted on wearing it the next day and was mad when it wasn’t washed when he got out of bed the following day. The real clue to his thinking came when we talked about going to Disney World. Instead of not wanting to go, he said he now wanted to go “about 25%.” That’s his very precise way of saying “part of me wants to go.”

I still don’t understand my son’s thinking that Disney World is boring but I truly appreciate how he let me know that he was starting to be open to the idea of a vacation there. I’ll continue to try to understand his thinking.

And before anyone says “Are you crazy taking two kids on the spectrum to Disney World”, know that I’ve done it with one, although we didn’t know at the time why he was so sensitive to the loud noises. A successful trip will require an IVP, Individual Vacation Plan, with all the appropriate accommodations and supports. And besides, I think I get sensory overload in places like Disney long before the boys do!

It’s been a difficult few weeks. We make progress. We celebrate. We slip back. We start again.

Tonight I crawled in bed with my youngest for a little nighttime cuddling. I listened to him as he put so much effort to transform thought into speech and finally say “The groundhog saw his shadow.” I asked him how many more weeks winter would last and he responded, “Six, but I don’t care about that.” His mind had already moved onto something else.

But my mind stayed on the groundhog. Something about it lingered on. And then it hit me. I feel like Bill Murray in Groundhog Day. I don’t think any other idea has come closer to how the ups and downs have felt lately.

For those of you that haven’t seen it, Bill Murray plays a weatherman who relives the same day, February 2, over and over again. Every day he tries something different, trying to break the cycle. And every morning he wakes up to the same song on the radio, and starts all over again.

I’ve been trying to help one of my boys break out of a negative cycle. The cycle has had some impact at home and a lot of impact at school. Working with him takes an incredible amount of energy some days. Other days it comes easily. Over time, it can be draining.

In the movie, Murray’s character tries all sorts of things to break the cycle. He goes through days of selfishness and days when he spends his time helping everyone he meets. He spends many days learning to play piano and yet on a day of extreme desperation, he drives his car off a cliff. After each, he wakes up in the same bed and breakfast in Punxsutawney, PA.

Like Murray, I’m trying all sorts of things to break the cycle. Some days are as joyful as learning a new piece of music, regardless of whether or not we make progress. Some days are marked by hope, others by moments of desperation. One of the most poignant aspects of the movie is that every day, despite what happened the day before, Murray’s character gets up and tries again.

I expect the answer to breaking the cycles for my son will have a lot to do with growth, much as in the movie. My son will eventually tap into his own extensive capacity for learning and will make some permanent progress. The adults around him at home and school will also need to grow. We will need to shake off some notions about the meaning of his behavior. We’ll also need to learn more about how he reacts to stimuli in the environment. We will need to learn that his stimuli may be things that we still don’t even recognize. We’ll discover the antecedents to the behavior and will wonder why we didn’t see them earlier. We’ll need to be truly open minded and learn from one another as we identify what environment is “appropriate” for him to learn.

And the most important step will be starting over again tomorrow.

After about 8 days of working hard at changing behavior during the nighttime routine, we did it! We got through without even a hint of a meltdown. No frustration, no escape tactics, no emotional disregulation. Just a ‘typical’ nightime routine.

Tomorrow is another day and I know we have more work to do but we’ve made progress.

If the baths on time
I can tuck him in by nine
Kiss my wife goodnight and write my blog . . .

OK. There will be no more quoting 30 year old songs by Bachman Turner Overdrive (And don’t even get me started on Village People.)