A view of autism from along the spectrum

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.

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.

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.

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.

I’m always looking for new insight and new perspectives that can help me become a better parent. About a week ago, I picked up a book and rediscovered some energy and enthusiasm that’s been eluding me.

I find the most helpful sources of motivation come from people presenting ideas that differ from my own in incremental ways. I use my own perspective and experience as a base, adding new ideas and approaches over time.

The people that provide the most valuable influence on me are those that have qualities of a coach. The techniques used by a coach are different than those we typically associate with similar roles of a teacher, parent, or boss, although a true coach might be found in any of those roles. A coach guides us by drawing strength from inside ourselves and using it to build change one step at a time. A coach lets his enthusiasm seep out and impact those around him (or her!). A coach leads and points the way, but it’s up to us to follow and make the journey on our own. A coach teaches us but the impact remains after the coach is gone.

I’ve listened to quite a few professionals who speak to parents of autistic children. A few have left me significantly more energized and enthusiastic about continuing my quest to become a better parent and help nurture my own children. The first I encountered was Dr. Steve Guttstein. A two day seminar with Dr. Guttstein gave me some fresh insights and charged me up for connecting with my kids in some new ways. I left a one day seminar with Dr. Tony Atwood and Carol Gray with renewed strength in my role as a parent. I’m finding a similar sense of energy from Ross Greene’s book “The Explosive Child”. I feel like a baseball player getting tips from a batting coach. I’ve got a good swing already, but a change here, and a tweak there, and maybe I’ll improve my batting average.

Well, beat the drum and hold the phone - the sun came out today!
We’re born again, there’s new grass on the field. . .

Oh, put me in, Coach - I’m ready to play today

- John Fogerty - Centerfield - 1985

(As I wrote this I remembered it was Opening Day. And in case you’re wondering, the Red Sox won!)

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!