A Breakthrough

I've mentioned before that Big Guy's diagnosis of Asperger's Syndrome wasn't officially given until he was quite old; nearly seventeen.

There were many reasons why this happened, the main one being that Asperger's Syndrome was a little known diagnosis 15 years ago when Big Guy was getting ready to enter the public school system.  As a result, he was misdiagnosed with ADD.  Medication helped his focus during school, but did nothing to address his other behaviors.

While I'm glad we were finally able to get the correct diagnosis for our eldest child, I feel it came at a time when we'd lost many opportunities for intervention.  Many of his behaviors became so ingrained that it's been a challenge to change them.  Big Guy also resented receiving this diagnosis, especially at a time when his self identity was just beginning to develop.  Whenever I tried discussing the topic of Asperger's or autism in general, he would grow very defensive and uncommunicative.  It's been a struggle, to say the least.

However, something happened recently that makes me believe Big Guy has started to accept his diagnosis.

About a week ago, the other family members were gone and I invited Big Guy to go out to eat with Little Guy and me.  As we pulled out of the driveway, he casually said, "I finally figured out why it bothers me so much when you change your mind about our family schedule; it's because of my Asperger's Syndrome.  I was reading about it online, and the article said that individuals with AS have a hard time with unexpected changes."

I was stunned; you could have literally knocked me over with a Q-tip.  Had my son just a) admitted he had Asperger's Syndrome  b) actually researched his diagnosis and c) was now talking about it openly with me?
I tried not to overreact or make a big deal about this development - it was really difficult, as I wanted to shout "hallelujah" at this breakthrough I'd waited so long for.  Instead, we began a 30 minute discussion about Asperger's Syndrome and how it impacts his life.  I asked my son if he'd told any friends of his diagnosis - the answer was one.  He said that he's told the others about certain "quirks" of his, but not that they're part of an autism spectrum disorder.  I asked Big Guy if he's bothered by having the Asperger diagnosis, to which he replied, "It doesn't bother me...but I don't like telling other people because they seem to make a big deal out of it."  I went a little deeper, asking my son if he views Asperger's Syndrome as a disability.  He thought a moment, then explained, "Perhaps in some ways.  But in others, I feel it gives me an advantage, such as my near-perfect memory."  We talked about his late diagnosis, and I shared my regret that it hadn't come sooner. 

All in all, it was a very open and productive conversation.  While I don't expect Big Guy to run around sharing his diagnosis with everyone, I feel he's finally come to terms with it and now accepts that it's part of who he is.  I'm hoping this acceptance will allow my son to continue to better understand his behavior and open the door for him to seek help and support when he needs it.

Are You Happy?

How does one express and feel happiness?

The answer to this is happiness is expressed in a myriad of ways and differs according to each individual.  However, I think I'd be safe in saying that the universal sign of happiness is a smile.

Individuals with autism spectrum disorders have an extremely hard time reading nonverbal social cues, including facial expressions.  This is something we've been working on extensively with Little Guy, trying to improve his ability to recognize what emotions are "written" on another person's face. 

Unfortunately, I've recently discovered our plan has backfired - Little Guy now believes that a person is only happy if they're smiling.  In other words, if a person isn't smiling, they're not happy.

This has created some issues, especially with his friends.

We recently had one little boy over to play.  This child is naturally sober and doesn't tend to smile often.  Little Guy happened to pick that day to be focused on the "smile to show me you're happy" mode, and the results were disastrous.

Within five minutes of playing, Little Guy asked his friend why he wasn't happy.  The friend tried to explain he was happy, to which Little Guy asked him why he wasn't smiling.  Over the course of the next several minutes, I heard Little Guy repeatedly asking his guest "why aren't you smiling" and say "please smile and show me you're happy."  I could feel the other child's frustration rising; even if he was happy to begin with (which I'm sure he was), that emotion had quickly fled under the demands that he produce a smile to prove it to his friend. 

I took Little Guy aside and said he was bothering his friend by constantly demanding he smile.  My son grew confused and sadly said, "I just want him to be happy."  I tried to explain that just because a person isn't smiling doesn't mean they're not happy and told him to stop asking his friend to smile.  My intervention helped the situation for a few minutes, then incredibly I heard Little Guy start in again.  I quickly reminded him of our conversation, to which he replied "Oh, yeah" and then stopped asking his friend to smile.  It took a few more reminders before my son finally quit pestering his poor friend, and we were finally able to enjoy the last few minutes of the play date.

I know my son will eventually grasp this concept with time, work, and practice.  I just hope for patience on my end as I guide him through this, and that his buddies will also be patient with him as he tries to improve his social skills.

Different and Alike

This is Big Guy and Little Guy:

One might automatically assume that because they share the same diagnosis and belong to the same family, they would have fairly similar personalities.

While they share some similarities, there are vast differences between them.  That is the nature of a spectrum disorder; a trait which might be severe in one individual could be very mild or even totally missing from another person - even if they're from the same family!

Here is a list of disparities between our two Aspie boys:

BIG GUY                             LITTLE GUY
Withdraws                             Acts out
Repetitive behavior                Sensory issues
Black/White views                 Echolalia
Obsessions                            Perseverance
Introverted                             Extroverted

This list demonstrates the similarities our boys share:

• Social issues
• Sleep problems
• Anxiety
• Aversion to physical touch
• concrete thinking
• Enhanced vocabulary
• Near-perfect memory
• "Gifted" range intelligence

I think it's important to recognize that while those who have been diagnosed with an autism spectrum disorder share certain behaviors, they are affected in different ways.  We've certainly seen this within our family, as our two ASD boys express themselves in their own, unique ways.  Our greatest successes have come as we've learned to appreciate our sons as individuals, rather than define them by their diagnosis of Asperger's Syndrome.

With Flying Colors

I know I left you hanging in regards with how things went on our California trip.

I apologize.

However, it gives me great pleasure to say that this "little guy":

came through with flying colors!

Our trip was absolutely WONDERFUL.  Although we had a few spectrum issues here and there, I can honestly say that Little Guy couldn't have handled it better.  The only lengthy outburst we had was at the beach, and that happened because Little Guy was unexpectedly knocked over by a wave.

While planning this trip, we put several strategies into place to help prevent problems.  First, we stayed at the same hotel we stayed in last time we visited Disneyland.  The familiar surroundings provided Little Guy with a sense of security about his environment, and made putting him to bed much easier.  I also brought our son's favorite foods and snacks, not knowing what would be available in the park.  This eliminated stress on my end as well, by having items on hand I knew Little Guy would eat.

We also utilized the "Superman" hat:

Many of Little Guy's issues are sensory based, and his anxiety level skyrockets in noisy environments.  This hat literally saved the day as it provided a necessary filter for our son, allowing him to be more relaxed in an easily overstimulating environment.  We allowed Little Guy to dictate much of the schedule, riding the attractions he wanted and taking train rides around the park if he seemed to need a break.  We were also able to use Fast Pass and other ways to eliminate waiting time in crowded lines; this was HUGE in keeping Little Guy regulated.  I think the longest time we had to wait in a line was 20 minutes.

All of these measures combined to make our vacation flow very smoothly.  We had such a good experience at Disneyland that we hope to return soon! 

Autism Awareness Month

April is Autism Awareness Month.

In anticipation of this event, last week my husband and I were able to give a presentation about autism at Dixie College as part of their Disability Awareness Week. 

It felt great to share our story -  as well as information and statistics about autism spectrum disorders.  The audience was comprised of students, faculty members, and a few personal friends, with the group's smaller size encouraging a discussion-type atmosphere.  Also in attendance was a family with four sons, each of whom have a diagnosis of Asperger's Syndrome.  Of course, I quickly felt a connection with the parents, a feeling which seemed reciprocated as I noticed them nodding at each other in agreement with my statements several times during the presentation.  In speaking with them afterwards, I learned that their oldest, whom is more severely affected by AS than his brothers, will graduate with a bachelor's degree from Dixie College next spring.  What an accomplishment!  It just proves that with encouragement, support, patience, and understanding, these individuals can accomplish great things :)

As part of spreading awareness, I've decided to step up my blog efforts and publish at least 15 entries this month.  These might address facts or statistics, express my opinions, or simply just illustrate the daily life of our family.  Please check back often...and please, feel free to share this site with others - especially those whose lives are affected by this diagnosis.  This can often be a difficult and lonely road to travel; knowing others who are experiencing the same issues can help make it seem a little easier.