Monday, March 29, 2010

Pepper and Friends

Today my radio/webcast interview on the Radio Pepper and Friends show will air. This was my first experience with anything that involved a camera, and I must be honest when I say that I was more than a little nervous ahead of time. When I found out that I was doing this I researched Paul's radio show and was almost shaking when I saw that it was also videotaped.

I had 3 days to fret about being on video. It's something I'm going to have to get used to, but I still couldn't calm the nerves.

The day of the taping arrived and I left with Ron Ekstrand, CEO of Touch Point Autism Services, who would be the primary person being interviewed.

We arrived in Columbia about 45 minutes before the time they wanted us in the studio so we stopped at the Chipotle acorss the street. I never ate at one, and never tried any Mexican food at all outside of Taco Bell, but I also had never been interviewed on camera so I tried it. Let me tell you that their hot suace is VERY hot; almost as hot as the jalepeno pepper I bit into at the Big Texan on a $20 bet (I should've asked for at least $100. It was thay bad!).

Walking into the journalism wing (is it a wing, or hall, or what? I don't know anything about college lingo) and finding our way downstairs towards their version of a green room was very nerve-racking. Once we got settled and were told we'd be on in about 12 minutes my nerves started to calm.

The room we waited in had the essentials. There was an overhead projector that was showing what was being filmed right then, there were 4 Apple's (the computer, not food as this was good because my mouth was still burning) with video editing software and what room isn't complete without a Nintendo Wii?

Seeing what was being videotaped helped a lot because it sort of was a prediction tool. I could see what the set looked like, I could see what the host was wearing, and could gauge his style of interview. Quickly, I learned that that my fears of ambush journalism were irrational.

It was time. Sink or swim, stutter or flutter, checkers or wreckers; whatever it would be would be in just a few minutes. The walk to the studio seemed like a mile when in all reality is was just down one hall and at the end of the short hall to the right and down three stairs.

We were quickly introduced and had about 3 minutes to talk with the host before the taping would commence. Mr. Pepper was amazed that I was on the spectrum and when I tried to explain what exactly Asperger's is a stage hand bumped over the cabinet you'll see behind Paul and made a very loud racket.

"Uh oh" I thought, "I'm frozen!" and I was. The noise was so loud and unexpected I could've passed as a human statue. I missed the window that I could've better explained what Asperger's is, and also tell him a quick 20 second summary of my book, but the window was lost at before I knew it he was giving his opening speech.

I knew the taping had begun because in front of me to the left was a clock. It started at 8"00.00 and began to countdown sports style. The show is only 8 minutes and this clock is to keep track. I looked at it once and became transfixed with it so I had to avoid looking at it because watching the tenths fly-by was very visually stimulating. You might be able to see that I never look to my left (your right) during the interview.

Paul went right to me to begin with and I wasn't quite prepared for that question and I started an internal debate while answering that led to me not answering the question. Honestly, I don't know if I did or not or do I know what the question was. The only thing I do know, and I hope the camera wasn't on me at the time, was that I made a quick facial expression at my dismay of fubling the question. Please oh, please don't use that KBIA! I will not watch my interview (I can't stand to hear my own voice. When I hear it, it makes me never want to talk again, "I sound like that?") any how, I will never know if this is on.

The minutes flew by without a second thought. I had to intensely follow the conversation between Paul and Ron because it is hard for me to follow a multiple person conversation. I usually will fall behind trying to piece together what a certain word or sentence meant and I will have no idea what is being talked about right then. Also, I was worried about seeing the monitor or making eye contact with the camera (I know I am going to look really stiff and I wouldn't be surprised if the only thing seen of me is the side of my face!) so I either focused on the host, or some guy that was off stage left.

The conversation flowed onward and then I got asked a question on what I would want to tell parents of those who are on the spectrum. This question was not prepared for and caught me off-guard, but thanks to my fast reflexes I don't think you'll see. I got my points off and said that there are methods and most of all there is hope. I don't use the word hope very often (I never used it once regarding me from about 2004-2009) but from what I've seen in the parent training course of Touch Point there is hope and lots of it!

In an amount of time that was less than what we waited in the Wii room it was over. 8 minutes can seem to crawl by when one is in a traffic jam, but when being interviewed 8 minutes is nothing. Truly, it seems as if it's over before it begins.

I have no idea how I did except of getting the word 'hope' out there. I know I didn't mention this blog, or my book, but maybe this wasn't about me. Maybe this was about hope, and that it is out there and if just one family or parent heard it then I think I'll accept the lack of personal promotion.

Friday, March 26, 2010

Q & A Friday

This question came from a conversation I had over Xbox Live. My friend, Travis, whom I met while in Vancouver, said that the weather in Vancouver is, "the banana boat of Canada". What?!?

So, this week's question is:

Do you take speech literally, and if so how do you deal with it?

The banana boat of Canada threw me for a loop because I had never heard of it. I instantly began to think if they grow bananas in Vancouver or if Vancouver grows a lot of crops. I don't think they do either, but anytime I meet a new figure of speech I can easily get lost.

I talk an write in a lot of non-literal examples and because I was exposed to them at an early age I feel as if I became equipped to understand them. Don't get me wrong though, if there is a new quote, like banana boat, I will essentially become paused in the conversation to visually see the sentence and then obviously I know the line is a figure of speech. The hard part though is trying to decipher what the actual meaning is because I am not going to ask. Many times I'll just nod in an empty agreement to make it look like I understand when I am actually clueless.

In my police presentations when it comes time to talk about this potential literalness I use this example, "If you have a room full of people on the spectrum and you look outside and say that it is 'raining cats and dogs outside' you are going to have a room half full of those scared, and the other half disappointed. The first half is going to be scared to see cats and dogs raining down on the pavement, and the other half is going to be disappointed that there are no cats and dogs raining onto the pavement'"

My example is an extreme one I give, but the message needs to be driven home because lines such as, "Are you pulling my leg?" and "Do you have something up your sleeve?" can lead to some unneeded confusion.

I know I am lucky that I have the ability to understand what these odd and seemingly obscure lines mean so long as I've been introduced to them before. New ones though are difficult. I'm still struggling with what the Banana boat means so don't mind me as I nod in agreement as I try to figure out what it means. Who knew the English language was full of codes and that one would need to be a cryptologist to be able to navigate life?

Thursday, March 25, 2010

Parent Training

Last Thursday, after the radio interview, (radio interview story will be published on here Monday morning. You can listen, or watch, Monday morning at ) we went to the Touch Point office in Columbia. The weather was perfect on this Thursday as Winter was giving was to Spring, but instead of enjoying the perfect weather outside two families were going through what could be the most important two weeks of their lives.

Touch Point's 2 week parent training is, in my opinion, the most important thing any family can do. Being as intensive as it is allows the parent to fully understand their child's behavior. The child goes through the training as well in exchange sessions that begin to reshape behaviors. Why 2 weeks and not do this once a week with a therapist? If a parent doesn't understand what to do, and what to avoid, all progress could be lost because the parent may unknowingly reverse all the ground made by the therapist.

Let's go back to my "concrete" concept. Concrete starts as wet cement, and each time a child goes to therapy the therapist shapes the wet cement. If the child gets home and the parent has no idea what to avoid the parent will reshape the cement back into an undesirable state.

For true progress to be made the parents must understand all the concepts behind the "why" of behavior. The two families at the parent training class that day understood this as this Thursday was their penultimate day.

"I had no idea" and "Wow!" were two quotes the parents, and grand parent, said when asked about their experience. The knowledge learned in the parent training class is unmatched and the true value of it can't be monetized.

The families in this parent training course mentioned the resistance of the school districts and unwillingness to assist. This is sad, but I have heard that story almost everywhere I have gone. It's a shame because there are methods that work, there is hope, but hope can't be found if a parent isn't pointed in the right direction.

I'm sure I will blog about parent training many more times in my blogging career. It's worth it though and needs to be repeated because parent training is the best way to begin avoiding concrete issues that require jackhammers.

Here is a photo of my visit to the Columbia office with the families and staff.

Finally, if you don't want to take my word for how well parent training works, take a look at this video. This video was originally produced for the 2009 Festival of Trees gala event. I usually have a great last line in my writings, but all I need here is the link;

Wednesday, March 24, 2010

A Tale of Hope

I just returned to the office from my trip to the Park Hill School District. My article yesterday said that I was going to talk to teachers and I was only partially right. The majority of those in attendance were parents of those that are on the spectrum. This was fine by me as parents are the first line of defense.

Getting to the Park Hill Day School proved to be an adventure all within itself. I had to make my obligatory stop at a truck stop in Kingdom City to get some Red Bull Cola, and from then on I made no more stops. I arrived in the Kansas City metro area at 4:10 with 6:00 being what time I had to be there. Thank goodness I have a rule about being 90 minutes early when going to something important because I needed every one of those minutes!

Call me rigid, but streets should be logical. If a road has one name it should not change names while going in a straight line. Kansas City isn't as rigid as I am and I went around and around looking for Green Hills Rd. At one point in time I found it, only to find that it was only Green Hills Rd for one turn. Literally one turn; perhaps 100 feet.

I was told this road name change was new and that my Garmin wouldn't know where to go. Regardless of that I listened to my Garmin and went on road after winding road. I found a one lane bridge and a road closure, but I didn't find the road I needed. After an hour of winding about I looked at the printed directions and figured I needed to find route 152.

Once I found 152 I was set and quickly found the school. Much to my dismay I had essentially driven all around the school except for the only road that went to the school. Embarrassment aside it was time to go into alias mode.

The school served a small dinner before hand, but I usually don't eat before a presentation. A teacher that saw me speak at the MNEA conference last November was talking with me and introduced me to a couple families. One family had read my book and it was weird for me to know that they know my story. I guess I'm not exactly an "open book" but you can read about me in an actual book.

When 7:00 came it was time to give my presentation. I had my power point presentation ready to go and 35 people filed into the small library. With the somewhat tight quarters I was about off guard to begin with. I've grown accustomed to large rooms and it took me nearly a dozen minutes before I was comfortable. I don't think anyone noticed, but I felt a little uneasy.

Due to the uncomfortable start I was a bit off on my examples I give to back up my concepts. My power point presentation is normally 35-50 minutes, but last night I finished it in 23 minutes. As I ran out of slides I was in a internal panic because it was supposed to be 35-50 minutes. I had stated at the start of the presentation that there would be a Q&A session at the end, and I was hoping (almost praying) that people had questions. The hoping (and prayers) were answered.

What ensued was nothing short of magic. The questions came fast and furious and through my answers, and questions from the parents, the air got much lighter. The parents understood my concepts I flew through in the presentation and they tailored their questions to match my concepts.

I fielded questions about sensory issues, relationships, friendships, and at least 10 other issues that I can't recall right now, and everyone in the room was transfixed on the conversations. One of the students that attend the school asked a question, and perhaps it was the most meaningful one of all that anyone can relate to, "Have you ever had a friend that you thought was a friend, but they weren't really?"

During the questions there was laughter, a few tears, and a lot of information was shared. Time was flying by and at the end of the question there were three new hands up waiting to ask a new question. At 8:20, 1 hour after I began the Q&A, the school principal came in to conclude the evening, and rightfully so seeing how we were 35 minutes over.

As the principal thanked me the attendees all applauded and one parent stood up and said, what could be the most meaningful line in my life, "Above all else, Aaron, you have given us hope".

I struggle when people ask me how my presentations went. If people say, "thank you" I take that as them thanking me. People thank others all the time for the smallest of life's events so those type of comments mean nothing to me. This comment though; this comment of "hope" froze me. I can't diminish the meaning of that line. There is no way to misconstrue that word. I am horrible when trying to judge if people enjoyed a presentation, or were bored. I knew exactly what they took from my presentation from that one line.

I am thankful I am able to bring hope to people. I'll be honest and say that I don't quite understand why I do, but I am certainly happy I can. What I am really thankful for is his line of bringing them hope in turn brought about a hope I have never felt before.

My writings were born from a deep depression I was in. I hated everything and was very bitter. I always wondered why everything was the way it was. In other words I had the "why me?" syndrome. Now though, through this parents single sentence of hope, all the nights of worry, all the anxiety, all the rage, and all the sorrow was worth it.

I am now feeling a sense of retroactive hope. My experience, as rough as it once was, was worth it. My passion has grown by a unmeasurable margin as I now know I have an effect on people. I always thought each presentation was a fluke, but now I'm beginning to see that it isn't.

So what does this all mean? It means that I am hopeful that I will be able to raise awareness, and hope to one classroom, town, city, and county at a time. For this, I am hopeful.

Tuesday, March 23, 2010

A much needed second line of defense

Later today I will be driving to the Kansas City area to give a presentation to teachers and parents of the Park Hill School District. This got me to thinking about a random article I wrote in late 2007 where, at the time, I said teachers were the first line of defense. Now I believe parents are, but only just. Teachers still play a potentially vital role as the second line of defense.

If a child is comfortable at home, and maybe even home itself is "Kansas", the parents may have a hard time seeing Asperger's. I'm sure my parents had a hard time judging my social skills because I had no shortage of words when in a conversation with them. That being so, how could they have seen that I lacked the ability to socialize with my peer group?

My social circle in school was either giving an answer to the teacher when called on, helping another student out by giving them the answer, or talking to the teacher at recess. I know the teachers I had commented to my parents regarding this lack of sociability in parent teacher conferences, but at the time Asperger's wasn't widely known and wasn't in the DSM.

Let's flash forward to today. Asperger's and the autism spectrum are more widely known. The numbers of those affected are now 1 in 100. 1 in 100! I believe I sort of fell through the cracks when I was younger, but today there should be no reason for it. How can this be achieved? It's simple, educating the teachers.

Teachers may see children more than their parents during the school year. Teachers will see children play and behave around other children much more than parents will, so shouldn't teachers be equipped to know what the warning signs are?

Of course teacher should be equipped, but there's so much disinformation out there that getting them the right information is key. The signs, like myself, were very subtle, but with the right information the ball could have started rolling to get me some sort of social therapy.

With my presentation today I open up another branch of society that I have touched. I may have fallen through the cracks in way, but I can't blame my teachers because the information wasn't there. Today is another story. All the information is out there and I hope to help fortify this second line of defense today.

Monday, March 22, 2010

The Handshake

I will admit that I understand the concept of eye contact and why it is important. That being said I will now tell you that I have no clue, none what so ever, on why the handshake ritual is so important within our society.

"A man walks into a bar..." No, this isn't one of those tasteless jokes, "A man walks into a bar, sees a friend he hasn't seen in a while, and greets him with a handshake." See, that wasn't a joke (more like a horror story in my eyes!) Why though would he shake hands? I don't get it.

It's not that I just don't understand the concept, but I'm also afraid of the handshake. Each person's right hand is different and has a different texture and feel. As someone extends their arm to me I panic inside. "What is it going to feel like?" and "Will it be sweaty?" are two questions that instantly plop into my mind. I then start to think about what to do after. If I instantly and rapidly brush my hand against my pants will they take that in offense?

Avoiding a handshake is a stressful and difficult undertaking. The problem is if someone extends their right hand (oh, why is it the right hand? A left handshake is considered rude unless the right hand is injured) I can't simply avoid it. To not shake hands when one party has initiated the ritual is considered to be the ultimate insult. Why does this handshake have so much power?

One website regarding handshake protocol says that the handshake is the most important part of any meeting as the first impression lasts the longest and that the handshake is the basis of the first impression. Really? Do people really judge a person on their handshake? To me this seems to shallow.

According to wikipedia (the world's trusted source of information. Notice I did not say 'most trusted' or 'least trusted'. Use your own discretion on what to call it) the handshake may date back to the 5th BC century. If that's so shouldn't we as a society have moved on?

Another tip on handshakes says that a handshake should be firm, but not too strong, yet not weak as to avoid showing a sign of weakness. Also, depending on the person's home country, one must tailor their handshake. Central Europe has a light handshake, whereas American executive business is a strong, firm handshake. But not too firm to show that you see yourself in a higher esteem than the person you are meeting. Confused? I will admit I'm not as to be confused one must at least grasp the concept and I see this in the same understanding of trying to read a paper with size 1 font from 10 miles away.

I can read about the handshake, another person can tell me about it, but the importance still makes no sense. Shouldn't a person be remembered for their words and deeds and not of a 1 second event? I've known that actions speak louder than words, but weren't those actions supposed to be accomplishments?

There's been one time in my life I refused a handshake and the person got very vocal about it. I've learned that rejecting a handshake is nothing short of a declaration of war. The path of least resistance tells me that I must shake hands, but I have done, and will continue to do it reluctantly.

To close, a handshake to me is very much like a roller coaster. When I see a person start to reach out their right hand the feeling is the same as when a roller coaster is going up a steep incline. The anxiety builds as the cars near the acme. "What's it going to feel like?" is constantly asked and just as one can't get off the roller coaster at that point I can't avoid the roller coaster. Yes, a handshake is very much like a roller coaster, and I HATE roller coasters!

Friday, March 19, 2010

Q and A Friday

Today's question was answered on the "Radio Pepper and Friends" show on KBIA in Columiba that will air on March 29th. This show is also aired in video on the web and my story on that will be posted on the 29th.

My answer to this question was brief on the show, but I wanted to expand upon it here:

If you are so rigid with routine how are you here in Columbia today?

While my routines are rigid they are only rigid towards whatever the event of the day is. In other words, whatever the rules of the game are for that day I am able to adjust. As Community Education Specialist I can expect that there will be travels involved. Yesterday my morning rituals were intact as I stopped at the gas station to get apple chips and a drink, and I arrived at the same time as normal. Once the travel stage began though the order of the day changed. Where as I would walk over to Taco Bell at 11:30 on a normal day I did not.

I think I am really lucky when it comes to being able to adjust somewhat. I can't adjust individual items in the routine, but if the rules of the game change I am able to change up. However, if I ever go back to that radio show, I'm sure I am going to have to stop at the Chipotle across the street before the interview.

What also helped was that I had a 3 day notice regarding this. I'm sure if I was told at 9:30 at night that we're going to Columbia in 5 minutes I would be a bit panicky. But who wouldn't be?

My final analogy of this is this; I am able to adjust my routine based on the game that is at hand (I view all things as a game because games have rules and rules are good). If I have something scheduled somewhere it is very much like adjusting from playing a game of Monopoly and going to chess. Then if I have something after that it's like going to Checkers.

It's been a good week here in this world of blogdom. I've got 22 followers now in just 2 weeks and I hope the articles I've got in my head for next week furthers the quality of this. Have a good weekend and check back on Monday for the next entry.

Thursday, March 18, 2010

How Are You?

I am going to assume that the subject line of this blog entry has no real impact on you. "How are you?" is just a three word question easily answered. Only if it were easily answered by myself.

I've had trouble with this question for the longest of times. Early on in life I observed people asking this question and by the time the person answered the asker was already several feet away. Is this an empty question that doesn't have a meeting? Is this question version 2.0 of the word hello? When I get asked this I debate these questions.

When I get asked this I panic. I still haven't come to a conclusion on if it's just a different hello, or if the person actually wants to know how I am doing. Once I have processed the question and got past the debate I then start to think whether or not the person actually wants to hear how I am doing. Often times I don't even know how I am doing!

I can't simply say fine. I've tried, but if I am not fine how can I say I am fine? Questions must be answered truthfully, and this desire to give a generic answer is part of the reason I squirm in place when asked this question. I realize that the 3-7 seconds of pure awkwardness would not happen if I said, "fine, thank you" but I can't turn off the part of the brain that is going to debate if they actually are asking, or using hello version 2.0.

As those seconds tick by at an amazingly slow pace I begin to panic. I try to find words, but they are all in hiding. "Ummm, I guess, well, I uhhhhh," is my common response up until the point that I state just the fact, "uhmmm, I, I, I'm here?" I often answer in a form of a question as if to be asking if this answer is acceptable.

I can't expect the world to avoid asking me this question. As uncomfortable as it is I find it a bit humorous that I can't adjust to just lying and saying, "I'm fine". Each person has a different expectation from this question and I am not fast enough, or apt enough, to figure out if the person means it or not. But all this is fine; and if you ever need a quick laugh just ask me this most fearsome question and watch me squirm. Go ahead, you know you want to.

Wednesday, March 17, 2010

St. Particks Day

It's that day again. Yes, it's that day of year when I can prove just how big of a non-conformist I am. Today is Saint Patrick's Day and for as far back as I can remember I have been confused, and sometimes scared, of this day.

In 1st grade, when it was March 16th, the teacher said that "Tomorrow is a holiday". Holiday? So that means no school, right? Whilst I'm sure the teaching staff would have loved that, this holiday had no merit to warrant a closure of school.

So why is it a holiday? On top of that, why did the teacher ask everyone to wear green? I was instantly hostile to that idea because I don't understand; Why do I have to wear green? On top of that what authority on this Earth gave people the right to pinch someone who isn't wearing green?

As I got older and became more fierce with my, "DON'T PINCH ME!" on Saint Patrick's Day I began to understand that today is about celebrating the Irish. That's great, but why do I have to wear green? I am not Irish (I don't think), never been to Ireland (I want to though), and hate to be told what color to wear.

Today I still don't know what today represents. If it's supposed to celebrate the Irish why don't we have a holiday for every country? According to Wikipedia there are 241 countries that qualify under the International Organization for Standardization so we could have a special holiday at least every other day. Think about how fun that would be! When it comes time for Sir Ernest Shackleton Day celebrating Antarctica everyone can wear tuxedos in honor of the penguins and eat ice chips all day.

Perhaps celebrating every country might hinder productivity, but I still just don't get the big deal about today. While some towns might dye their rivers or canals green, and some people will be celebrating at a pub, I will continue my silent protest in my black pants and reddish/purplish shirt without a trace of green on me.

(Please note that I don't have anything against the Irish, the color green, or penguins. This is one of two clothing protests each year, the next one will be on October 31st. You'll just have to wait until Halloween to hear that story.)

Tuesday, March 16, 2010

A Song From the Past

A couple days ago my friend Ryan talked me into playing Project Gotham Racing 2 over Xbox Live. I hadn't played the game in 5 years, but since Microsoft is shutting down the servers for all Xbox 1 games I felt compelled to play it one last time. All the time playing it I stated how much better Toca Race Driver 2 was, but this blog entry is to not debate what Xbox game was better, but rather what happened when I played the game and heard one song.

Music has a mysterious effect on me and when I heard this particular song from PGR2 it took me back in time. The memories that flashed from it were a shock and almost overwhelming. The problem is I can recall every song I've ever heard. Granted, I may not know the words because in a lot of songs I can't heard the words over the instruments, but the tune is enough. This one song I heard though was the first song I wrote to.

To assist in my writing I listen to music. The majority of "Finding Kansas" was written to the classical music that was on Gran Turismo 4, but the PGR 2 song had the lines, "You don't mean anything to me". I realize how false that was, to me, as I wrote the chapters Emily and Linda, but it helped get the emotions out.

Going back to a couple nights ago I was taken back to that February night in 2005 when I first started to write. For me, hearing the song in the present, I had a hard time realizing what year it was. All the emotions that poured out onto my keyboard when I firs wrote was reawakened. This got me thinking about other examples and it sort of scares me just how much power music has.

I think we all have this ability for a song to take us back to a different time, but is it common to become so overwhelmed because it's like that different time is in the now? Every song I heard at the VooDoo Lounge at the Rio hotel in Las Vegas is remembered, and every time I hear one of them I am instantly right back there at the SKUSA SuperNats.

I am very private about what songs I like. I will not tell you what songs I heard in Vegas, or what songs I write to now, or even what tracks of classical music I preferred on Gran Turismo 4. If I do, in my mind, it will be as if you know everything about me. Music is remembered more so than any other sense for me, and while corrupt politicians have skeletons in the closet, I have music hidden away, and I can tell you, I fear you knowing my music more so than the politician fears his skeletons.

Monday, March 15, 2010

Lunch and Learn

Last Thursday I went along with the Community Liaison to a doctor's office. Touch Point has a grant through the Lutheran Foundation to go to offices and put on a 'lunch and learn'.

Going to the office I would've thought that doctors would have extensive training on all things autism. With the rates of autism near 1 in 100 I really thought that medical doctors would know the difference between Asperger's and classic autism. I was wrong.

The nurses and the doctors, when asked "how much autism training have you had? all responded with either "none" or "very little" I've been out with Matt, the Community Liaison, at initial visits as well and those responses seem to be the norm.

During this lunch and learn Matt let the staff know about the services of Touch Point and some of the 'red flags' of autism. With me there I was able to expand on the red flags and to give my personal story. Questions abounded and this was great because this meant that they wanted to know more. It's not that they don't want to know about autism, it's just that they have received no training or education on this issue.

At every book signing I've done at least one parent has come up to me in tears and told me that, "The Doctor just doesn't understand. He told me that 'it may be autism, but let's wait a year'". I've had 6 signings in two states and this sentence has been repeated each time. It shouldn't be!

In those 2 hours of lunching and learning at this office the staff said that they learned more about autism in those hours than in their entire life. I had no idea the impact of just a brief run through would have so much power. The staff said that they either had a nephew or cousin with an autism spectrum disorder, but didn't know much more than that. Seeing me sort of dispelled the typical stereotype because autism can look much different depending where they are on the spectrum.

My experience educating that office was very powerful for myself. Parents being told to not worry about a possible autism diagnosis is NOT acceptable. I must say thanks to the Lutheran Foundation for the grant because I felt like the doctors and nurses want to know about autism, but just haven't been told.

There's a lot of offices out there, but through one lunch at a time perhaps the number of parents that are told to, "not worry about it" will decrease. Hopefully someday no parent will hear those words.

Friday, March 12, 2010

The first Friday Q and A session

Unless there's a major event here at Touch Point, or in my life, I'd like Friday to be the day I answer some common, or hopefully some uncommon questions. There's one question that's been asked so here it is:

Have I ever lived with social anxiety so great that just being around was much like much like you described regarding the sound of drums? If so, how did you overcome it?

I've never been up to that level, but only because I will do anything and everything to avoid the situation. I will easily get into fierce panics though and I get a very high internal stress response. One thing that panics me is when there's a group and everyone introduces themselves. The anxiety I have as the "hello, I am..." getting closer and closer to me as it goes around the room is almost suffocating. The really bad part is that there is no escape from this. I can't simply walk out of the room because if I did that every time it would look too odd.

When I go to the video game store it takes a good hour of internal debate to get up the nerve to do so. I weigh my options on is it "better to get the game now and risk a painful experience, or order it on the web where it may take 3-100 days to get to me". Just yesterday I walked in and I NEVER give the staff at this store any reason to talk to me, but they always try. ALWAYS! I don't know why, do I have a sign that says, "hello, could you please make me as uncomfortable as possible?" I don't know why I go back.

The only thing socially that will start to get to the drums level is prolonged open-ended eye contact. When I worked at the bank, race direct, or was working at the video game store I had no issues with eye contact. Now though I do, so to avoid the possibility of a drum-like situation I avoid eye contact.

Is this a good thing though? Is it good to avoid those situations that may create anxiety? Will I get better at socializing if I never socialize? I look at it this way. I know my limitations and know that I don't want to experience a drum-like response. However, just like the great debate between get game now or game through unreliable shipping methods, when the desire is there I will try. I haven't really had that desire so to this point I have simply not put myself in those situations.

So I guess I can't answer the part of overcoming it because I have just done everything I can to avoid those situations.
I doubt that there will be any updates over the weekend, but I do encourage anyone that may have a question to either message me or comment on any given days entry as I'd like to have Q and A Fridays a staple of this blog.

Have a great weekend, I know I will with the F1 and IndyCar openers this weekend (those races shouldn't make me angry like last weekend's NASCAR race!)

Thursday, March 11, 2010

The Race

I've had about 5 book signings and at each one I hear words that chill me to the core. At each signing at least one parent has said that they don't know what to do because everything points to their child being on the spectrum, but the school says they'll grow out of it and their doctor tell them that they should check back in a year or two. If this were a race would you want to start one lap, ahem, on year behind? I thought not.

Those that aren't familiar with autism are probably afraid of it. They may not understand that there is hope and that there are therapies that can work wonders. There's a race though and to wait a year will make all headway a bit harder to gain.

Let's use this analogy; the young mind is much like wet cement. When working with wet cement if there's a mistake made it is easy to make adjustments and to make it like the original plans had it. However, say you are making a sidewalk, and it is not smooth and is allowed to set, it will take sledgehammers and jackhammers to correct the mistake.

Much like the sidewalk the earlier it is fixed the easier it is. The same rule applies for early intervention for those on the spectrum. The data is there to prove that those that receive early intervention are much better off.

Last July I had the opportunity to go through Touch Point's parent training class. Before this I was unaware of just how big the gains could be for a child, but from day one to the last day the children in the class made gain that I never would've imagined. Months later one parent told me personally that their child no longer tested on the spectrum.

There is a race going on and it is on two levels. For the children on the spectrum the race is to start positive therapies before the cement cures, on the other side of the race is to raise awareness of the fact that there is hope and there are therapies and autism isn't something to be afraid of, it's something that can be worked with. Yes, there's a race and it MUST not be lost!

Wednesday, March 10, 2010

Awareness is the Start

For the first time in my life I am taking pride in the work I do. When I worked at the video game store my job was about me and trying to break the region Game Informer sales record. When I worked at the racing school is was about me being paid to drive fast. Now though my job is about telling my story and trying convey that there is hope and to bring about awareness.

In my presentations I am amazed at how much little people know about autism. I guess I shouldn't be because I am just as uniformed on how the "normal" person works.

At one of my recent presentations someone asked me if I could simply, "ignore the drums". For me, the sound of drums is a violation of every sensory nerve in my body. Within 2 seconds I can feel the sound throughout my body and it feels as if I am being burned throughout my body.

I use this sensory story about the drums in most presentations and to the person who hasn't experienced this I know it's hard to understand. I've been asked the "ignore" question a couple of times and I take it as they think I have the choice. Trust me when I say I wish I had the choice, but where I am lucky is that I am able to voice what it is that creates such a brutal pain.

This is why awareness is key. The autism spectrum isn't a choice and for some on the spectrum they will not be able to express what is causing the pain. To the uninformed it may seem like a choice, but it's not.

I don't want to simply raise the awareness of the fact that more and more people are on the spectrum (they are), or simply that eye contact is difficult (it is), but I want to raise the awareness of what it feels like. From this I hope that I get the chance to express that there are therapies that work, but these options have got to be utilized as soon as possible. There's a race going on, a race against concrete. Tomorrow I will post on the importance of this race and why this race must be won.

Tuesday, March 9, 2010

Inappropriate Attachment to Objects

Yesterday, while giving a presentation to police officers going through the first day of C.I.T. training I gave my normal presentation. One of the topics I cover is the title of this entry, "Inappropriate Attachment to Objects" and I use the example of the soda can I wrote about in the chapter, "Small Things" from my book. While that story is quite strong, and may seem like an isolated example, I can experience this everyday.

Right now, sitting on my desk, is a box. Inside the box is my Rosetta Stone software that was going to be used to learn German so I could do my research project, "Relocation Theory". That project has been shelved until an unknown time and I'm okay with that as it would seem my job at home is much more important right now. However, inside that box, is the USB headset with microphone that is used so the program will know if the user is pronouncing whatever word they're trying to say correctly.

There are many headsets with microphones, and my dad has already supplied me with a replacement, but it's not the same. The replacement sounds a little bit better and is much more comfortable and yet something is missing. Much like the can I mention in my book the object has more meaning than just it's physical presence. For me, this headset represented the "what could be" aspect of my project. It also is tied to many late nights learning German and being somewhat creeped out by the expressions of the people on the pictures on the computer screen.

In my presentations to officers I stress this concept of the soda can because the attachment could be to anything for a person. I think we all have some sort of relationship to items because people keep family heirlooms and relics, but those should have meaning. For us on the spectrum it's items that you may see as trash, or a tool for daily use, but for me it can represent a person, friendship, what could be, what could have been, and every emotion in between.

Whoever said, "One man's trash is another man's treasure" might have been on the spectrum as this saying is true. Yes, it may be true, but perhaps treasure isn't a strong enough word for this headset that's about to go away back to Rosetta Stone was more than treasure to me, it was tied in with every positive emotion I could experience. But now it's going to find a new home where the person who may own will see it for what it is. It won't represent the possible freedom of an adventurous research project 6,000 miles from home as it will be a headset. Just a headset.

Monday, March 8, 2010

An International Event

I lived out a dream two weeks ago when I got the chance to go to the Olympics in Vancouver. What started out as a question in jestwhen I asked a friend over Xbox Live if he'd give his spare ticket to me, turned out to be an event that may define the next part of my life.

By no means did I have the $1,600 the airlines were asking for a flight to Vancouver during the Olympics, but I did have 25,000 frequent flier miles so the ticket was free. Everything worked out perfectly to get me there. Now I state this not for the fact that I had a great time (I did) but because as wonderful as the event was, and as amazing as the pictures I took were

(amazing, right? I took that photo!) those events are better suited for my book. What was truly amazing wasn't any of those events, but what happened at a Rotary club meeting.

I stayed with my friend who still lives at home and the day after the only event I attended his dad asked me if I'd be interested in speaking at their weekly meeting. An Olympian was scheduled, but she had to cancel for one reason or another. I instantly said yes not knowing what a Rotary club was, or how long I'd have to speak.

When it came time to go to the meeting I was elated as, being the speaker, my lunch would be free. Hey, it's the small things in life that keep us going. Anyways, I still didn't really know what the Rotary club was except that this club is the Arbutus club and that there are more than 32,000 clubs worldwide.

During lunch, the table I was at asked me a few questions about where I was from and I was able to respond, but not in as much detail as I would've liked. The number of people was way down, according to what they told me, due to the Olympics. That was okay as this was my first presentation without power point in a long time (I hate going to a power point presentation, but giving a presentation without one is rather difficult).

I had from 1:05 to 1:30 to speak and I was advised not to go over my time and it'd be okay if I finished at 1:25 as the attendees usually have meetings at their respective businesses afterwards.

With only 25 minutes, and no power point to go off of, my first five minutes would be the most important. To begin I started with my story of being diagnosed and from then on I can't remember what I covered exactly. I do remember that the members who were there were listening as when I covered a point heads nodded, and when I told them of some of my "classic Asperger moments" there was laughter. What's a classic moment? I used the story of when my former girl friend wore this outfit and I looked at her, pointed, and asked, "What is that?" Later I asked, "What planet is that from?" Oops!

Anytime I present I don't know how I'm going to be received. Well, I guess anytime I'm anywhere I won't know even after the fact. I thought it went well though because I had 10 minutes of questions afterwards and it was 1:35 when the meeting was concluded. Afterwards a couple people continued to talk with me and I was just glad chairs or unconsumed food wasn't hurled my way (don't you just love my catastrophic thinking?). I don't think this group, as a whole, had much first hand experience with someone that is on the spectrum. I think most people now know the word autism, but don't know much when it comes to what it is and what it feels like.

I don't have any intention of having this blog be triumph story after triumph story. This story though has an amazing ending as a couple days ago I was informed that this chapter of the Rotary Club is strongly considering making autism a priority in there donations! I only had a half hour and the group wasn't that big, but I made an impact. I was oblivious to this while I was there, naturally, but the impact I made was great.

People train all their lives for the Olympics for the chance to win a bronze, silver, or preferably a gold medal. While I may not be an athlete, and have not trained for anything, my Olympic experience turned out to be much better than winning a medal as I, in that room on a damp Vancouver day, let people who knew nothing about autism feel what autism is like. While the athletes that soared through the air wowed spectators and television viewers the world over with their gravity defying moves (curling excluded) I simply helped a room with about a dozen people in it better understand autism. I may not have had the fanfare, a medal, or my anthem played, but hearing that they may support autism efforts is by far better than any material item anyone could offer.

Friday, March 5, 2010


"Just another voice in a crowded room?" you ask. If that were the case I would not be here as a blogger. I chose my blog title, "Life on the other side of the wall" because I am able to let the world know what it is like to be behind this wall known as Asperger's which is part of the Autism Spectrum Disorder.

I am the author of the book, "Finding Kansas: Decoding the Enigma of Asperger's Syndrome" and have recently finished my 2nd book that doesn't have a title yet. On top of that I was recently hired by Touch Point Autism Services to be a Community Education Specialist. While I must admit the company suggested I do a blog all content here is my own and, I've always wanted to say this in one form or another, the views and opinions expressed by me may not be that of Touch Point Autism Services.

Over the course of the next few weeks, months, and hopefully years I hope to open your eyes as to what's new in the world of autism, and to also let you in on some of the daily issues I face being behind this wall.

So welcome to my blog and I hope you will have as much enjoyment reading this as I will have providing it to you. Enjoy!

Aaron Likens