Change is Always Possible

Change is not something that happens suddenly or without conscious effort.  Change is an uncomfortable experience for anyone.  For those with autism, change can be more than uncomfortable, it can be downright unsettling.  It takes time to get used to something and the process cannot be related through words, but the end result can always be seen: a parent will accomplish that change through gentle persistence, through maintaining that this current behavior is unacceptable and needs to be adjusted.

I want to relate a memory from long ago.  When I was in Kindergarten, before I knew that I had autism, there were unfenced woods on the boundary of the playground at school.  It was well known and enforced that kids were not allowed to enter those woods.  As a kindergartener, I pushed that boundary.  I ventured a little ways into those woods at times, never out of sight of the school.  And I got in trouble a few times.  This was the same year when I didn’t eat my lunch, as I mentioned in a blog post a few weeks ago.  I was told that it was not safe to go into those woods.  I was carefree as only a five year old could be.

The start of first grade brought some changes.  I started eating my entire lunch and I stayed well away from the woods.  At the time, I couldn’t say what had prompted that change.  The closest association I could make to how I was able to implement and stick to that change of routine was the simple fact that I was not in Kindergarten anymore.  I was now a first grader.  In my mixed “Hi-Five” class with both Kindergarteners and first graders, I felt that I had to grow up a little.  I felt like I was supposed to be a role model now.

Many parents may want their children to change, to gain acceptable behaviors, to fulfill their responsibilities, and to learn how to function in this world.  I am suggesting that a change can come from sources that no parent can anticipate.  Such as simply entering first grade like the example I just gave.  There comes a time, when a child who has autism recognizes that there needs to be a change in behavior.  Once that happens, the change can be sudden to parents, but to the child with autism, it is the end result of an internal process.   No matter how many tantrums there might be, or how many tense evenings pass by, never lose hope.  Your child with autism is changing in his or her own way.  You just can’t see it yet.

I'm talking, why don't you understand me?

I am one of those people who have vivid memories from when I was two or three years old but can never remember where I put my car keys.  When I was three years old, I was nonverbal.  Less than a year prior, I was developing normally until I lost my language skills. At this time, I had not yet regained my ability to communicate.

At this time, I rode a school bus across town to attend a preschool a few miles away.  This bus parked at the end of my driveway and my mom walked me out to the bus to make sure I got on.  This particular morning, I had received some stickers that I was very excited about.  I held them and played with them and had a good old time.  When I was walking out to the bus, I dropped the stickers and they started to blow away.  I remember pulling at my mom’s hands, trying to tell her that I wanted to pick up the stickers.  She didn't understand me and carried me to the bus.  At that point, I got really upset, crying and screaming.  It was plain to me what I was trying to say. I wanted the stickers.  It wasn't like it would take a lot of time.  Why wouldn't she let me pick up the stickers?

At that time, I didn't understand that my mom couldn't tell that I was saying; that my garbled words did not have any meaning to her.  It was at that point when I realized I was different.  That memory has stayed with me at age twenty three, more than twenty years later.  It was painful to experience at the time, and now I want to use it to help others who are dealing with the negative aspects of autism.

I don't know what is Bothering my Child

I am going to take a moment to make a point but it might not seem related to autism at first, so please bear with me.

I'm the kind of person who likes a stable foundation.  That sense of security really helps me to stay comfortable with who I am as a person.  I have mentioned before that those with autism have interests that they spend much time and energy learning about.  In this post, I am going to mention one film that really had an impact on me at a young age because they literally scared me.  I want to say that this fear did not directly threaten me in any way, and the fear I felt was irrational.  I have long since overcome that fear.  That film I am talking about is the Disney movie "Rudyard Kipling's The Jungle Book."

Last night, I found "The Jungle Book" on TV and decided to watch through it.  That is not something that I would have done even five years ago.  You might be thinking, how did I find that movie frightening?  Well, when I was younger I was really fascinated with quicksand.  When I watched one of the antagonists drown in quicksand turned that fascination into fear.  Why did it frighten me?  Because the moment he disappeared below the surface you could not separate the quicksand from the jungle path.  The fact that the very ground could hold a hidden threat was not something that my seven year old autistic mind was okay with.

I first saw this movie before I discovered that I had autism.  I had a few nightmares about quicksand and I would always talk to my friends about the question I so desperately wanted to know: does quicksand have a bottom or does someone keep sinking?  My autistic mind really focused on this fear for such a long time that I stayed far away from that movie.  That fear came back to me at different times in my life.  When I would see a person who looked like the man who drowned, I couldn't help thinking about that.  When I visited New Orleans and went on a swamp tour, I couldn't help thinking about the quicksand in that movie.  My fear and imagination had amplified quicksand into something it wasn't.  I have since learned that this was Hollywood's version of quicksand and in reality it was not as threatening.

The point I am trying to make in this post, is that if a parent to an autistic child notices that their autistic child is bothered by something, and cannot get the child to tell them what is bothering them, it may be something just like this.  In other words, it may be based on something that happened a long time ago and has nothing to do with the present moment.  In order to for the autistic child to get their parent to understand, they would have to tell the entire story, just like I did with this post.  It is not easy for an autistic child to do so, they might try to explain but the parent would not understand.  Things below the surface are hardly as they appear to be by examining a child's face.

I have hardly mentioned this fear to anyone.  I want to try to use this to help parents to better understand their autistic child.  It may be complicated but it is not impossible.  Never give up hope.

The Autism Communication Barrier

In this post, I would like to take a moment to talk about communication barriers.  There are many such barriers present in our day to day lives.  For example, there are barriers between the way that men and women communicate.  There are barriers between those who live in different regions, cultures, sub-cultures, and nationalities.  Autism has a separate communication barrier entirely that is different among the individuals on the spectrum.

In can be very difficult for someone with autism to communicate because, in addition to the communication barriers that everyone faces every day, we have the autism communication barrier.  The barrier is different for every individual on the spectrum.  We might take statements literally, not read sarcasm or irony, and we might not see humor in the same way that others do.  Through our black and white thinking, we may have trouble comprehending situations where there is more than one correct answer.  In other words, we expect there to be a clearly defined right answer and wrong answer for everything.  Even though I am armed with that knowledge through experience, it is still difficult to handle situations where there is considerable gray area involved, such as controversial topics and political topics where there are strong conflicting viewpoints.

 In addition to that, there is the sensory issues to consider.  I have heard that when individuals with Aspergers Syndrome are very focused on what they are doing, they might be completely unaware of what is going on around them.  To my understanding, they can literally be deaf to everything around them and only see what the task that they are preoccupied with.  In some cases when I am dealing with a sensory overload, I might stop listening to someone who is speaking in order to deal with the overwhelming sensations.  Someone with moderate to severe autism might be so caught up in the swirl of sensations that is their reality. They might be completely unaware of what is going on around them.  All their actions are based off of reactions to those sensations that dictate their reality.

This description is by no means exhaustive. What I have tried to give here is a brief overview of what I consider to be the autistic communication barrier.  Some of those are communication barriers that I encounter in addition to all the other communication barriers that exist between genders, nationalities, and even sub-cultures.  While communication can be difficult for everyone in some situations, try to keep in mind that those with autism are dealing with extra barriers in addition to the difficult barriers that everyone experiences in this diverse world.

On the Subject of Diversity

In this post, I want to share a recent achievement of my friend, Dani Bowman.  Dani has autism like me, and is very successful with what she loves most.  Dani founded Powerlight Studios at age eleven and now at age sixteen she has accomplished great things as an animator and an autism advocate.

Dani recently made a video about diversity where she talked about the emergence of a new type of diversity concerning those with disabilities.  She suggests that autism should be treated as a form of diversity, much like differences between cultures, nationalities, and races.  Autistic people are diversified from those who are not on the spectrum.  As Dani most rightfully says, "diversity is something to be celebrated."  She also believes that the world would be boring if everyone was the same.  I could not agree more.

When I was struggling with my self esteem in middle school, I used to imagine what my band class would've been like if everyone in the class was like me.  My imagination did not present me with very promising images at that time.  I was not comfortable with who I was as a person.  I knew I was different, and I wanted to be accepted and liked.  I thought that since I was different, I was somehow preventing myself from receiving the acceptance I desired.  I was wrong.  This is why I am so passionate about raising autism awareness.  I don't want any autistic child to feel alone like I did.  I am sure that Dani believes the same thing.

Check out Dani's video about diversity by clicking the following link. http://www.youtube.com/watch?v=vUInV7VFqfI&feature=share

We are Just Different...

Autism has its advantages and disadvantages, just like anything else.  We are not superior or inferior to anyone.  We are just different, that's all.  Whatever sensory issues or other weaknesses we might have are equally compensated by something else.  Someone with autism might feel uncomfortable sensations while being hugged, but he might know everything that can be learned about cats.  He might be able to perceive what a cat is feeling by its posture or other factors; much like Temple Grandin has proven she is capable of doing with horses and livestock. 

I believe that there is always trade-offs: meaning for a good characteristic to be present, something equally negative also has to be present to balance out a person’s abilities.  If social skills are a weakness to someone with Aspergers Syndrome, then some other area of their life is enhanced.
 
The thing people fear in autism is nothing more than the unknown.  When a parent is faced with an autism diagnosis for their child, they often do not know what to expect from that child.  Parents receive many messages: they have doctors telling them that their child will never live a normal life, and also have others telling them their autistic child is unusually gifted.  The fear of the unknown magnifies whatever issues might exist in the eyes of a parent. 

We who have autism are our own separate category.  We are not inferior or superior to anyone just because we are different.  We cannot be compared to someone who does not have autism.  We can only be compared to others are like ourselves. Most especially, we who have autism should be compared to those who are on the spectrum and lead successful lives.

Some Words for my Readers

In this post, I want to take a moment to address my readers.

I am less worried about the cause of autism than with doing my part to raise autism awareness.  Many causes of autism can be debated, such as vaccines for example, which is a controversial topic to many.  Scientific evidence has been presented that proves that vaccines are not associated with autism.  That is good enough for me.  Whatever trouble I had with autism in the past is long gone.  I am now focused on using my powerful writing skills and intuition to help others struggling with autism.

I am writer, not a scientist.  I would rather take action using the insights and talents I have then to debate what might cause autism.  I have received confirmation that my words have helped many people.  The Voice from the Spectrum has been read in different parts of the world, including parts of Europe, China, Russia South Africa, Peru, and Australia.  Autism is not a condition that is affected by international borders.  I cannot imagine the impact my words are having that I don't know about.

Later this week, I will be launching a second blog: "OUCARES-Did you Know..."  This blog will report the activities of a center for autism at my school Oakland University.  I encourage readers of The Voice from the Spectrum to read posts from my OUCARES blog.  This blog will also be posted on The Oakland Press website and I will continue to share my posts on Facebook from both blogs. 

I also wanted to say that I am set to graduate from college December of 2012. By that time, I plan to have a book ready to submit to a publisher.  This first book will tell my story in greater detail than I can achieve through blogging.

Finally, I want to thank my readers of The Voice from the Spectrum.  I want nothing more than to make a difference and I appreciate everyone who takes the time to read my posts and allows my words to impact your lives.  Thank you.

Just Fly Away

In this post I wanted to talk briefly about something that came to my mind earlier.  It was actually based off something that happened at work today.  I stock shelves at a local grocery store.  How many people can remember going to the grocery store and seeing a bird flying around the store?  When I went to get some water up front, I came across some coworkers who were discussing how to get the bird out of the store.  The bird in question was sitting on broad windows facing the parking lot.

This bird kept on flying from one window pane to the next trying to find a way out of the store.  It was cheeping frantically.  It could see the way out through the glass but didn't understand what was in its way.  All it wanted to do was fly away.

It doesn't sound like much to a lot of people, but I know exactly what it feels like to face a barrier that I don't understand, which keeps me from what I desperately want.  That was what it was like growing up with autism.  I was like that bird, facing barriers that I didn't understand.  Barriers that no one could explain to me.  All I wanted was to be understood.  It was no wonder I felt sorry for the poor bird.

This is just something to think about.

Some Past Eating Habits

Prior to my autism diagnosis, there were some habits that became ingrained when I was just starting school.  For one thing, when I was five years old in kindergarten, I was in the habit of not eating my packed lunch. Instead, on a daily basis, I put my lunch back in the bin that would be returned to the classroom.  Even if I was hungry, I would not eat because it was just what I did at the time of day.  It was an ingrained habit.  There was no logic behind it besides: well, I've done it all year, things just won't feel right if I don't do it today as well.

Eventually, I overcame that habit.  I think the fact that I started first grade contributed as much to that change of behavior as the scolding my mom gave me.  My rationality was: oh, this is first grade, it is not kindergarten any more, so this change of behavior is okay.  Since it's a new year, bad things won't happen if I make that change.  Now that eating habit was overcome.  I now ate my entire lunch from first grade onward.  Now I was belligerent about eating the crusts off of my sandwiches.  I just refused to do that.  This particular habit was not something that I overcame until I was in middle school.

I hope that my experience in this matter helps parents who are struggling to get their autistic child to eat the food that they need to grow.

Autism Success: Not so Far Away

Many parents faced with the prospect of raising an autistic child often experience a feeling of despair.  Some might feel like their life is over.  They have been told by doctors that their autistic child will never live a normal life.  I am telling my readers that this is wrong.  There is not enough known about successful individuals with autism to really judge what an individual with autism may achieve, or not achieve, in their lifetime.  There is too much emphasis placed on what someone with autism cannot do, rather than what they can do under the right conditions.

Think back to the old cliche phrase: it ain't over 'till it's over."  There is no way to judge what any child will achieve in their lifetime based upon the dismal words of professionals.  Assuming that an autistic child will be unsuccessful based upon the judgment placed upon the child at a young age is the worst thing that a parent can do for their autistic child.  I understand that professionals do not want to give any parents "false hopes" of what their child might achieve.

Think back to the greatest stories that litter the news and inspirational books throughout the world.    These people have been told, for example, that their cancer is untreatable and are faced with the prospect of months to live.  Sometimes, this dismal foreshadowing comes true.  In these cases, individuals allowed the despair of the situation to dictate their actions.  Others tell inspirational stories of people who have lived far beyond the life expectancies placed upon them by doctors.  All of these individuals have triumphed through positive human spirit.  They focused, instead on what they were told couldn't be done, but instead of why can't I do it?  This positive human spirit who has allowed many individuals to "beat" their cancer can also be applied to autism.

Parents, I implore you not to place limitations on your autistic children.  You never know what they might be able to accomplish under the right conditions.  Many individuals are writing success stories about rising far beyond any expectations that were placed upon them.  Dani Bowman, who I have mentioned in previous posts, takes her love of art and applies it to her animation company Powerlight Studios.  There is a lack of understanding of autism that places limitations of autistic children.  Take away those limitations, and watch your children surprise you.