29 December, 2006

The Frenzied Holiday Season

The message boards and news groups dealing with Autism tend to be filled at this time of the year with messages from parents on how frustrating their holiday celebrations were. Between the rushing around to visit with families, the crowds of people that fill every inch of the shopping centers, and the overall frenzied pace of getting ready for visitors, it is no surprise that many Autistics tend to spend the entire month of December in an over-stimulated state of anxiety. Our household was no exception to this.

Between traveling to my parent’s house, entertaining in our own home, and the simple expectation of opening gifts, Connor was a hand flapping wreck. Unlike pervious years, however, I spent as much effort as I could muster (between my own episodes of hand flapping) to watch what was causing the stimulation and stress for Connor (and myself).

So, here are a few of my observations:

Santa Claus – Beyond the bright red suit and snowy white beard (I think those alone are enough to cause most neurotypical peoples eyes to be over stimulated) we have the threat to behave. In the classic song “Santa Claus is Coming to Town” we are warned that we had better watch out, better not cry, and better not pout because Santa is watching us all the time. I am not sure who decided long ago to portrait Santa as a member of George Orwell’s “Big Brother” government from the novel 1984, but I know I find it creepy to think that someone is always watching me, even when I am sleeping, and is going to make a determination of if I am bad or good. Of course in modern child psychology we learn that the old style of discipline through negative reinforcement is no where near as effective as discipline through positive reinforcement.

The lesson learned, for me, is that next year I will have a talk with Santa and instead of warnings about bad behavior and a lack of presents; there will be positive letters of encouragement saying things like “You have been very good about ____, I am looking forward to bringing you a gift!” While this may seem a subtle difference, the way it is received, either by an Autistic or a Neurotypical child is so much more positive and effective.

Scheduling – One of the things that seems to happen in homes around this time of year is that scheduled are thrown out the window as we try to do last minute shopping or realize that we need to do some last minute furniture rearrangement to accommodate more people in our home. Once the schedule is gone, all that is left is a confusing state of anarchy accentuated with frequent surprises. Scheduling surprises are, generally speaking, BAD.

The lesson learned, for me, is that next year, I will have to be extra diligent in scheduling things out and sticking to the schedule. Even making changes to the schedule the day of is better than waiting for the last moment to say “OK, we need to run to the store!” For us, this means we need to be better about keeping a schedule throughout the year… perhaps that can be our New Year’s resolution.

Parties – With the Christmas season comes a myriad of holiday parties and family gatherings. This year we hosted a family gathering of 12 people on Saturday (December 23rd,) traveled 1.5 hours to my parent’s house on Sunday (December 24th) to attend a family gathering of about 30 people, and traveled that same 1.5 hours on Monday (December 25th) to attend another (smaller) family gathering at my parents house. I am not even sure when we found time to sleep. The over the top social interaction, combined with the general noise that accompanies a house full of people causes most people a heightened level of stress… for an Autistic that can not filter out all the sounds, smells, and visual things… it is completely overwhelming.

The lesson learned, for me, is that we need to think about ways to allow the over-stimulated to be removed from everything… a bedroom or even a quiet seat in a corner. On this we did pretty well this year, but there is always room for improvement.

That is about all of the pearls of wisdom I have realized from this year’s holiday season. If I think of more, I will most certainly post it.

I hope that everyone had a good Christmas (if you celebrate it) and I hope you all have a wonderful and safe New Year celebration!

27 December, 2006

Inertia And The New Domain

As an Autistic, change makes me nervous. In fact, I would go so far as to say that change is probably the greatest cause of stress in my life. My mind is seemingly governed by Newton’s first law of motion. For those that may not remember physics, Newton’s first law was that “an object at rest tends to stay at rest and an object in motion tends to stay in motion with the same speed and in the same direction unless acted upon by an unbalancing force.” This law is used to describe inertia and can basically be summarized by saying that an object resists a change to its state of motion. Similarly, I have an overwhelming resistance to changes in my state of existence. That is part of who I am at the core. Now I have realized, as I developed, that the resistance can be a very serious limitation. Therefore, I have come up with ways to develop sufficient “unbalancing force” or to translate outside events into an “unbalancing force”.

One of my greatest enjoyments is having people visit my blog. I keep track of statistics and am amazed by the number of people that stop by and read my writing. What is also truly amazing is that the people visiting my blog are from all over the world. Last week I was reminded of just how important it was to me that there are people reading my blog.

I participate (somewhat infrequently) in several mailing lists, news groups, and forums. On one particular news group last week, there was a post that really upset me. Someone was attempting to hype their e-book on Autism. Now, I have nothing wrong with people who write books on Autism. In fact I have considered it myself. But what I do have a problem with is when someone publishes an e-book with claims like:

“Give Me 17 Minutes And I Guarantee To Reveal The 31 Signs of Autism, Plus Proven Strategies That Show You How To Awaken The Maximum Potential Of Someone With Autism”


“You Too Can Learn The Carefully Kept Tactics That Give You The Advantage Over Autism!”

And finally:

“[Title removed, as not to give the author any free press] Will Answer All Your Autism Questions!”

Although I am troubled by the author’s attempt to paint their book as a panacea for all the challenges and troubles of Autism, what truly bothers me is that the author directs this snake oil towards the unsuspecting and vulnerable parents who are just starting to be introduced to the world of Autism. The introductory text at the very top of the web site for the e-book states:

“Are You Worried & Scared That Someone You Love Has The Signs & Symptoms Of Autism?”

As I have mentioned before, one of the main reasons I created this blog was because my wife and I felt very alone when we were first trying to get a handle on just what Autism was and how it would change our lives and I wanted to help prevent others from feeling that despair. (See my blog entries entitled “Let There Be Light!” and “Let There Be Light! Part II”.) Seeing someone who is clearly trying to prey off of the vulnerability and feeling of being alone is everything I am against.

So, the “unbalancing force” created by my anger at this author built within me. A change in the state of my environment was inevitable. Now I should mention here that one thing I do to mitigate the turmoil and stress caused by change is to identify things that make the change seem extremely desirable. In this case, it was the potential of reaching a much larger audience and, in theory, overshadowing the snake oil vendors that simply want to take the $37.77 (yes that is really how much the author is charging for their miracle book) from people who really just need to know that they are not alone.

I set a course and just needed to find a path. One step in that path is to make accessing the Autism: Deal With It! blog simpler to find… and that step is where we are today and why http://autieblog.blogster.com has been moved to http://www.autismdealwithit.org. More changes, some behind the scenes and some rather obvious ones, will be coming over the next month or so… So update your bookmarks and stay tuned!

09 December, 2006

The Pumpkin Story

When I look back at my childhood, there are a number of events that stand out as examples of Autistic behaviors. One particular event that stands out is the story of my sister’s cat, Pumpkin.

Growing up, we always seemed to have cats around the house. I never had a problem with the cats; they did their own thing and purred when I pet them. In fact, sometimes they were a lot of fun to watch.

At one point, due to nature and various other reasons, we found our house without a cat. That ended when my sister selected her own kitten, Pumpkin. Pumpkin’s name was chosen for a very obvious reason. The orange colored hair that made up most of Pumpkin’s body did, in fact, resemble a pumpkin.

Pumpkin never really bothered me, so I never had any feelings of ill will towards her. Actually I am not really sure if Pumpkin was a girl or a boy, but I do know that it is customary to reference cats as females. That is one of the many odd things about the English language.

Several weeks after Pumpkin came to live with us, my mother and sister noticed that she (or maybe he) had not come around in a couple of days. My sister became some what frantic, fearing the worst had happened to Pumpkin. I was not really that concerned, as cats tend to come and go as they please. Cats are very different from dogs in that way.

The house I grew up in was in the foot hills. This meant that our back yard, which faced into the hill, was flat for about 30 feet, and then it became a 15 foot slope upwards to the fence line. At some point over the previous 10 years in the house, my parents had installed a round above ground pool which actually was set into the hill so that the top of the rail on the far end was at the ground level of the slope. Next to the pool was a rather large metal shed.

I was playing around behind the shed and happened to look into the pool. After so many years of use, the pool was now in rather bad shape. My parents had explained that the rains from the previous winter had soaked the hill side so much that it was starting to cave in the wall that was set into the slope. This left the pool unusable and it now was about 2 feet short of being full and contained a rather thick layer of emerald green algae. I knew that beneath the algae was a world of insects and tadpoles. I will tell you all about tadpoles and the green tree frog invasion some other time.

While looking into the pool, I noticed that Pumpkin was in it. She (or he) didn’t move at all and I figured that, since cats can not swim and there was no movement, she (or he) must have fallen while walking on the railing, been unable to get out, and drowned.

I was happy; I was able to figure out what had happened to Pumpkin. I knew I needed to tell my mother and my sister about it, they would want to get Pumpkin out of the pool and probably bury her. (On further reflection, I am pretty sure Pumpkin was in fact a girl.)

My sister was inside the house, in the living room or family room. (I can’t remember which one it was called; we only had one room like it so it probably was both a living room and a family room.) So I went into the living room and told her that I had found her cat, Pumpkin, in the swimming pool. I thought, at the time, that she would be happy to know that Pumpkin was no longer lost. Instead of happy, however, she started to cry and to yell at me. I could not really understand why she was so angry with me, as I had nothing to do with Pumpkin’s death. My mom came into the room to see what the yelling and crying was about. I felt sure that she would stop my sister from being so angry with me. But that was not really the reaction she had. She didn’t yell at me like my sister did, but she did talk to me in a rather mean way and scolded me for telling my sister the way I did.

I was completely confused. My sister and my mother were both upset that I had found Pumpkin and told them about it. I am not sure of what I should have said. No matter what, I did find Pumpkin and Pumpkin was in the pool. Changing how I said it would not have changed the facts and it didn’t really make any sense to try to make it more confusing.

Over the years that followed my finding of Pumpkin, there were periodic references to how I told my sister about it. Most of the time, the incident was used as an example of sibling rivalry, specifically as an incident where I was being mean to my sister. As an adult, I am now a little better at understanding why my way of saying it was wrong. It is unfortunate that I did not have the same understanding when I originally found Pumpkin, as I could have prevented my parents from thinking that I was being mean to my sister.

Recently I attended a really good seminar on parenting Autistic children. The presenter spoke for a little while on the “Theory of Mind”. Basically, the “Theory of Mind” is based off of an experiment that showed that Autistics do not think the same way as other people. Specifically, they do not think of things from other people’s perspective. Even further, the tendency is to believe that everyone’s frame of reference and understanding of a situation is the same as the Autistic’s. The classic example is called the “Sally - Anne Test”. I won't bother to repeat the whole description of the test, as it can easily be found by searching Google for "Sally - Anne test"

The fact that I didn’t understand how my sister would react or why she was angry with me is a good example of how the inability to understand another person’s perspective can cause misunderstandings and frustration from all sides.

I struggle with this difference in “Theory of Mind” even today. I frequently am frustrated by people at work who do not understand my solution to a problem or my perspective on an issue. It actually causes me a great deal of inner anger when I have to explain things. The good news is that I have gotten pretty good and dealing with this.

OK everyone else, please stop reading, this is just for my sister (who I know has read my blog in the past and I believe still reads it from time to time):

I am sorry, sister, for not understanding that the way I told you about Pumpkin hurt you. It was never my intention and I was simply excited that I could help you find your cat.

08 December, 2006

A Thank You!

I wanted to take a moment to thank everyone who reads my blog. I would also like to thank those that have provided comments, either with experiences or in support of me. It is wonderful to read how others have identified with my experiences.

One thing that I have come to realize is that no matter where we are from, be it the United States of America, South Korea, Belgium, or any other place in this world, we all share a commonality that transcends race, ethnicity, and culture. It is truly a heart warming realization.

Autie-dar (Kind of Like Radar)

One of the funniest phenomenons my wife and I have experienced since we were introduced to Autism is the acute awareness that I like to call autie-dar. If you’re reading this blog, you most likely have already experienced autie-dar yourselves; you just didn’t use my clever name for it. So, I hereby give you, my loyal readers, expressed permission to use the term autie-dar to describe the phenomenon.

Oh, what is autie-dar? Well, it is kind of like radar! (I know you already got that from the title.) More specifically, it is the ability that parents of a child on the spectrum develop which allows them to identify an Autistic child out of a busy crowd. I attribute this phenomenon to the fact that many signs of Autism, once you know what they are, tend to stand out. I can’t even begin to count the number of times that I have caught glimpse of a child doing a little hand flapping or looking at things from different angles. While these actions, on their own, are not definitive indicators of Autism, they are great clues, which can be put together with observations of how the child is reacting to the stimulus around them or interacting with their environment, that act as prime signs of someone on the spectrum.

Of course, nothing about autie-dar can replace a diagnosis by a qualified professional. It is important to remember this when you do see someone who shows the signs of Autism. Another thing to keep in mind is that some parents may be in denial or may even be hostile towards people suggesting that their child is on the spectrum. So, if your autie-dar goes off, smile to yourself or your spouse, even lend an understanding hand if the situation allows it, but please keep your discovery to yourself.