Thursday, October 27, 2011

An Autistic Journey

Parenthood is a momentous occasion under the best of circumstances.  A new parent is filled with the warm glow that only comes from the arrival of a new baby, as well as the incurring responsibility of caring for that child for the following years through adulthood.  What happens in the case of autism is the new parent finds out gradually that something is not quite right.  Their child is not talking, and the child's doctor says to his parents that their child should have started talking months ago.  A cold, empty pit forms in the new parents stomach: something is wrong with their baby.

Sometimes the autism is identified promptly, and measures are taken immediately: speech therapy commences, cognitive therapy begins, and parents wills are tested.  Sometimes, though, the autism is not identified promptly.  Doctors disagree over what is wrong with the child.  The parent is crying inside in a loud voice: please...just tell me what is wrong...I don't care what I have to do... 

This is what happened to me.  I was misdiagnosed when I was younger and when things continued to go wrong, I was tested again by a different doctor, and the autism which had eluded diagnoses for so long was properly identified.  Then my medications were adjusted, and the slow recovery began.

Even after autism is diagnosed, the long road continues.  The autistic child has to learn the ways of an unnatural world where his instincts work against him.  All he wants is to be heard and understood.

What parents need to understand is that your child is not sick.  Your child is a foreigner to the human race. He plays by different rules; what means one thing to you means something else entirely to him.  He has to learn an unnatural language, new sets of behavior, and norms and rules that may be normal for parents, but are not normal for an autistic child.

He fights because he doesn't understand.  He has a language already and wonders why he can't talk to his parents.  Gabbling, moans, and screaming all have meaning to him.  They address thoughts, emotions, and sensations.  He is confused and might be scared that no one understands him, but he has to change his ways and to learn the ways of the world.  It is not easy for him.  He doesn't mean to make it hard for his mom and dad.  He wants nothing more than to understand and to be understood.

The best comparison is that it's like trying to force a child to speak English and learn American ways: this child has spoken another language his whole life and is accustomed to a different culture.  I am not questioning the methods parents use.  I am trying to help them to understand what their autistic child is going through.

Over a long road, the autistic child learns the way of the world, but he doesn't like it.  It feels all wrong for him.  He has figured out by now that he does not see eye to eye with his parents, his teacher, his classmates.  He might be hostile about it.  He might be angry about the injustice of it all.  I know I was.  I thought: why me?  Why did I have to be different?  Why doesn't anyone understand?  Is it going to be like this forever?

Bullying from others increases the feeling of loneliness.  The insults that come so easily from one child's mouth shatter the self confidence of the autistic child.  It is a small wonder that I was depressed by the time I was diagnosed with autism.

Stability is not found easily or painlessly.  Neither the parent nor the child chose this lifestyle, but with understanding comes stability.  Now the autistic child feels like he is not alone.  People understand how smart he really is.  They understand it is normal for him to have insufficient knowledge in one area of life and near genius capabilities in another area.  If he finds the right support and conditions like me, or Dani Bowman (a sixteen year old autistic girl who owns an animation studio) or like Taylor Morris (an autism advocate and model who has numerous videos on YouTube intimately describing her autism), he will find more than he or his parents ever imagined.  He could even become the next Albert Einstein or Bill Gates (who are both suspected to have autism).

Those who understand their autism enough to tell their story should not stay silent.  Every account brings everyone involved with autism closer to understanding the complexity of the spectrum.

Tuesday, October 25, 2011

I Smile when I'm not Happy

I wanted to expand on a topic I mentioned in my last blog post.  I feel like I need to pay closer attention to this in greater detail.  I mentioned yesterday that the facial expressions of people with autism may contradict what we are actually feeling.  I mean this in a literal sense, I may smile when I receive shocking news and I may frown when I am pleased.   Based on socially accepted norms, this can make relating with people difficult.

I am aware that some people may take offense if they tell me tragic news and I smile in response.  So, I find myself fighting to hide that smile to try to be sensitive to other people's feelings.  It is not natural for me, but it is better than trying to explain to someone who does not understand.

For example, there was a tragic accident this past weekend that affected people that attend Oakland University.  Two students were killed and another injured in a deadly car accident in Metro Detroit.   I raised the subject with another classmate earlier today, because I knew that he had known one of the victims killed in the car accident. As we talked, I felt myself start to smile, and I tried to keep it hidden.  I had brought up the subject and I did not want to appear like I was making fun of the situation.  It is way too much to explain in casual small talk.  I think that he noticed that I was trying to keep from smiling, but thankfully he didn't say anything, which I am grateful for.  I am really sad about the tragedy, regardless of whether I may smile about it.

To the contrary, I could be blissfully happy and not show it at all on my face.  It happens in many different situations when people ask me if I am feeling alright when I really am.  I don't intend to turn the world upside down by saying this, I am trying to say that facial expressions that are natural to an autistic person in a given situation may be seen as socially offensive by others.  I hope that my words raise awareness of this issue.

This is not something that is intuitive, even to me.  I was not even aware that I did this until recently.  I used to think of myself as a bad person because I smiled at other people's trouble when it was not the case at all.

Monday, October 24, 2011

What having Autism Means to Me

In this post, I am going to try to introduce a topic that delves deep into my autistic mind.

People with autism are different.  We should be viewed as a separate type of being from those who don't have autism and make up the majority of the population.  Let me elaborate on this point: there are certain rules and behaviors that are acceptable to society known as norms.  People with autism have our own social rules that are naturally acceptable to us.  From the onset of autism at a very young age, we are thrown into a world with norms that are not natural to us, and we are forced to learn those norms. 

Even with that knowledge, I find myself in situations where I unintentionally offend someone by not reading body language, or someone may unintentionally offend me by kidding with me in a way I take literally.   A world that is natural for those with autism would be a very different world than the one that exists now.

The acceptable social norms make it difficult for me to identify my reality because my reality contradicts many aspects of socially accepted behavior, or what people expect of other people.  Taking sarcasm literally, showing no visible signs of listening while really listening intently, facial expressions contradicting what is expected by a particular emotion (such as smiling when receiving shocking/sad information, which I tend to do a lot), not maintaining eye contact while speaking, etc.  I appear to be normal on the outside: a young man in his early twenties, slightly overweight, with nothing too extraordinary to behold.  What is within on the inside is so vast and different that most people will never see or understand...unless I write about it, which I have been doing for the past few months.

What I am trying to do here is to cross-section natural autistic behavior with conventional social norms.  I admit this is not an intuitive concept.  I could write about this my entire life and only scratch the surface of the topic.  That is what I am going to try to do in the future, apart from writing my fantasy series.  I will do the best I can because I believe this is important to understand in order to increase the efficiency of autism education and maybe, just maybe, reduce the symptoms of severe autism to those of mild autism.

I don't really believe in a cure for autism anymore.  The world needs people who think differently.  The great innovators like Einstein and Edison were thought to have had autism.  I believe that a "cure" for autism may eradicate those types of thinkers out of society.

This is not a topic I can relate through small talk at the supermarket.  This runs much deeper. This is my reality.

Saturday, October 22, 2011

Meet Sarah Stup

I this post I would like to talk about the accomplishments of Sarah Stup, a writer with autism.  Her autism is more severe than mine.  While I was nonverbal for a few months, Sarah cannot speak at all.  Her only means of communication is through her writing.

Sarah is a critically acclaimed author who has published many books, poems, essays, and other work for both children and adults alike.  By simply learning to write, she has broken communication barriers.  Her accomplishments are nothing short of extraordinary.

To learn more about Sarah, visit her website and watch the following video

Meet Dani Bowman!

I would like to take time in this post to talk about the outstanding achievements of a teen with autism.  Sixteen year old Dani Bowman has achieved many things in her short life.  When she was eleven, Dani founded Powerlight Studios, an animation company in La Canada Flintridge, California.

Dani worked with Joey Travolta in the 2011 OUCARES Film Camp offered at Oakland University this past August. She taught animation to the autistic participants to help them make a short animated film.  I went to the Film Premier for this film camp and watched some of Dani's instruction.  Her knowledge of animation is nothing short of extraordinary.

What Dani has done here is an example of an individual with autism who has reached their full potential.  I have talked in previous posts of the achievements those with high functioning autism can achieve if their gifts are nourished.  Dani is living proof of what I have been talking about in this blog.  We who have autism can accomplish so many wonderful things if people take the time to understand us.  Under the right conditions, we can literally change the world.

For more information about Dani, visit the website for Powerlight Studios:

Wednesday, October 19, 2011

A Strategy to avoid Sensory Overload

In this post, I want to discuss a strategy that I used to combat sensory overload.  Recently, I was exposed to a tense conflict between people in a classroom setting.  I played no direct part in this conflict, other than as a bystander sitting in my chair. I could not remove myself from the situation without getting up and walking out of the classroom. I found that the situation overstimulated both my sight and my hearing.  I was facing a potential sensory overload.

I have noticed that a strategy that is used by autistic individuals to combat sensory overload is to either cover their ears and eliminate their hearing sensation, or to close their eyes and eliminate their sight sensation.  By closing my eyes, or covering my ears I could prevent the over-stimulation of one sense or the other.  I did not want to make myself uncomfortable by drawing attention to my sensory overload.  In order to handle this situation without making it obvious to others, I leaned forward, closed my eyes, and placed my thumbs on my temple.  The pressure on my head combined with the action of voluntarily shutting down my sight, I was able to avoid a sensory overload.

Saturday, October 15, 2011

Autism and Anxiety

Having autism gives a different perspective on reality.  I can't really say that it's a better one, but it's a different one.  While thinking differently has its benefits, it also has some costs.  For instance, many people with autism have problems with anxiety.  I am one of them. 

Before m medications were changed, I used to have trouble falling asleep.  I was often filled with irrational fear.  I could not stop myself from wondering: what if someone broke into the house?  What if the house caught on fire and we couldn't get it?  It went on from there.  I was a smart person with a vivid imagination and a sometimes narrow focus of concentration; therefore, I was prone to anxiety.

Ever since I was my medications were changed, I have had an easier time falling asleep.  Even on the nights when I forget my medication, I can still fall asleep without difficulty.  For a child dealing with an anxiety problem, the advice I can give is see what the child's psychiatrist has to say.  Maybe an adjustment of medications is necessary.  Maybe there is another issue.  I am not a professional; I am just a writer who has a good grip on my own autism.  The anxiety that occurs with autism can seem irrational, but I know that if I am in that state of mind, that worry is all I can focus on.  I cannot really see around it even if I tell myself that the fear I am feeling is irrational.  What ultimately calms me down is different every time, but it is possible for me to calm myself down. 

Earlier I was worried about what kind of impression I made to some people I just met.  I was worried about that during my entire twenty minute drive home.  It did not affect my driving; it was just a nagging feeling that something was wrong even though there was nothing really home.  When I got home I sat down at the table and read a "Star Wars" book for about twenty minutes.  Once I set the book down, I was calm.  The nagging feeling that something was wrong had dissipated.  The fact that I was actively involved in a task, like reading, really makes all the difference.  There is always hope, no matter how hard it may seem.

Thursday, October 13, 2011

OUCARES Film Premier

In this post I would like to talk about an upcoming event in Metro Detroit this weekend.  On Saturday October 15 at 7:00 p.m. the Oakland University Center for Autism Research, Education, and Support (OUCARES) will be hosting their 6th annual Film Premier. 

In late August, I wrote a post about a film camp offered by OUCARES.  I witnessed many of the wonderful experiences offered for children and teens with autism.  Acclaimed actor/director Joey Travolta led a professional film crew to give these autistic children an opportunity of a lifetime.  Travolta and his crew taught these kids to write, act, direct, and edit their own film.  This Film Premier is a red carpet event where these kids will be recognized for their accomplishments. Travolta will serve as honorary chairperson for the event.

For more information, visit the OUCARES website:

Some Famous People with Autism

In this post I want to talk about two videos I recently found on YouTube that portray famous people who are thought to have autism.   These are all people who have revolutionized the world through their different thinking.  Some are confirmed autistic and some are only suspected to have had the condition.

It is important to think of the positive possibilities associated with autism rather than with the negative aspects of the condition.  All I really want to say in this post is: do not disregard what people with autism may be capable of.  Great things can happen if talented people who think differently find what they really love to do with life.  Always hold onto hope.

To view the videos attached to this blog post, just click on the respective links posted below.


Saturday, October 8, 2011

Learning to Drive

The goal of every teenager in high school is to get a driver's license.  At that age, it means freedom.  It means that they are no longer dependent of others to go where they need to go.  I was no different.  I wanted my license at sixteen, but it was at that age when I started driver's ed.

My parents were taking a cautious approach to my learning to drive.  They did not want me to get inattentive when behind the wheel.  I understood that concern, so I did not press them too hard. Many people with autism do not have the focus or the cognitive skills to drive. After taking driver's ed and a year of driving experience, I finally received my license at age eighteen.  Today, I drive myself wherever I need to go whether it's to work or to school.  I never really give it a second thought.  I am not a perfect driver, but then again, few drivers are ever perfect. Overall I am a good driver which is enough for me.

How Music has Helped Me Part Two

In my previous post, I talked about how my mom used music to help me regain my language skills at age two after the onset of my autistic characteristics.  In this post I am going to talk about how music helped me a second time, when I entered high school.  In this case, instead of helping me cognitively, music helped me socially.

Entering high school is a nerve-racking experience for anyone.  After my horrible time in middle school, I did not have high expectations for high school.  I started pre-camp for marching band in the first weeks of July.  At first, I went into marching band thinking it would be just another activity I wouldn't like. I was surprised to find that I really enjoyed marching band, more than anything else I had in a long time.  July 2002 is about the same time I got my tonsils removed, so I missed most of pre-camp that year.  When I got back, I couldn't really play my brand new clarinet I had bought from a pawn shop, but I did sit through sectionals and talked with the other band members.

I was told that I made a good decision by playing in band: I found out where the girls were.  I was the only boy out of fourteen clarinet players.  None of the band members knew what my middle school experience had been like.  I was just another freshman to them.  I remember being told that I was one of the hardest working freshmen.  I had never had a peer compliment me like that before.  It was at that point when I left middle school behind me completely and became a freshmen "clarinetee."  Marching band really helped me socially through high school.  As each year progressed, I met more people and became more social.  Apart from the musical experience, I really gained some life-long friends.  I quoted in the school, yearbook my junior year of high school that marching band was the best thing that ever happened to me.  It was.  It really was.

How Music has Helped Me: Part One

There was a time between the age of two and four when I was nonverbal.  When I say nonverbal, I mean that I did not have the necessary language skills to communicate.  The loss of the language skills I had developed prior to my time could be seen as the onset of my autistic characteristics.  When I say nonverbal, I do not mean silent.  I babbled on incoherently whenever I tried to say something.  My parents could follow what I was trying to say to an extent.

My parents enrolled me in an early educational program at age two.  This way, they could try to restructure my language skills.  What happened to me is common in some who have autism.  I am not going to place any blame.  It's not going to change the past.  I just know that there is probably someone out there who has a child who stopped speaking and doesn't know what to do.  Keep in mind that there is always hope.  Don't ever give up.  I don't know what works for everyone, but I do know what worked for me.

When I was nonverbal, my mom used to play music for me from Sesame Street and different tapes that gave the alphabet, and so on.  She used to play this music for me over and over again.  This repetition caused my autistic mind to memorize those songs, even though I did not have the language skills to speak the words myself.

As I mentioned already, I was nonverbal, but I was not silent.  My use of language directly resembled my thoughts, which existed through feelings rather than words.  By memorizing this music, over time, I was able to speak again.  In the summer of 1991, I started to say the word "mom."  My mom was so excited she grabbed the video camera.  Just out of high school, I remember watching that tape and understanding the true significance of what had taken place.

Saturday, October 1, 2011

Taylor Morris Part Three

There is a lot more emphasis placed on the disadvantages of autism than of the advantages.  It is true that many people who have severe autism require life-long care.  I believe that higher functioning autism such as PDD-NOS and Aspergers Syndrome can become an asset when it comes to certain situations.

In this video by Taylor Morris, she talks of the advantages of Aspergers in her case.  When you watch the video, you will hear her say that she is very good at geography, math, and Spanish.  In my case, I have some advantages at math, I have some advantages at writing, but I don’t have many advantages at Spanish.  I took two years worth of Spanish and I know enough Spanish to be dangerous.  I agree with Taylor though, I believe that people with high functioning autism can find both their passion and place in the world with their skills and interests. That is what I hope to do with my writing someday.

Here is a link to Taylor’s video where she discusses the advantages of having an “Aspie’s Mind.”

Taylor Morris Part Two

In my last post, I discussed what Taylor had become as an autistic advocate and  model.  It was through these insights that she has become the accomplished person she is today.  Now, I would like to talk about who she was before these wonderful things happened to her.  She was just like any other autistic child coping with sensory issues and striving to figure out how she was going to fit into the world.

This video is definitely something I can relate to.  After watching it, I look at some of my behaviors in a new way.  She has an amazing grasp of what it means to be autistic.  The way that she explains it really names some of the feelings that I was not able to identify before viewing this video.  Even though I have an understanding of what it means to be autistic, I am only familiar with myself.  I can always gain new understanding from someone else.  Every person with autism is different.

Here is one of the first videos posted by Taylor Morris on  This video discusses her viewpoint on having autism and more details about her story before her success as a model.  It also discusses how autism has affected the way that she lives her life.