Saturday, February 25, 2012

"I know more than I think you know..."

This is quote listed in the title came to me while looking into a news story about an severely autistic girl, Carly, who reveals her inner world through typing.  This quote is the silent cry that everyone on the autism spectrum is trying to reach out to those who are not on the spectrum, who run the world, and in some cases, claim to know us better than we know ourselves.  I'm sorry if this offends anyone but it is true.  This is the silent cry of many on the spectrum, as spoken by Carly, and as spoken by many others as well, I'm sure.  For a long time, I have considered myself to have a foot in both worlds.  While I am on the spectrum and experience autism characteristics, I am also capable of looking at autism as an "outsider" or someone who is not on the spectrum.  In the work place and at school, I can function without anyone being aware that I am on the spectrum.  It is my hope that this blog becomes as the title states, one of the many Voices from the Spectrum who are striving to be heard.

Thursday, February 23, 2012

A Sensory Example


Those on the autism spectrum experience a very different world than those who are neurotypical (NT) or not on the autism spectrum.  This can extend all the way to the way things are perceived.  Something that quite literally is seen, or felt, or tasted, or smelt one way by an NT individual can experienced differently by someone on the autism spectrum.  The example I am going to use is fleece.

Last fall in The Voice from the Spectrum, I discussed the YouTube videos created by Taylor Morris, who is on the autism spectrum and has since become a model.  In one of her videos, she discussed how physical contact with fleece can literally "hurt" her.  This caused me to recognize something that I had not really thought of.  Touching fine fleece causes a curious sensation for me as well.

A few days ago at work, I found a piece of clothing that was causing me a prickly sensation upon contact and I decided to try an experiment to see if a NT coworker feels the same thing that I do, suspecting that it was not the case.  I have been very open with this coworker about living on the spectrum.  This coworker has always accepted what I say in regard to living on the spectrum and relating to the life of a busy college student.  She told me that she did not notice anything extraordinary about the piece of clothing.  I described the sensation that I felt when I ran my hand over the cloth and this coworker and another coworker told me that they noticed nothing.

Even when prepared for it, hearing that still blew me away.  This fleece, which both coworkers described as feeling quite soft, seemed to grip my skin as I ran my hand over it.  I tried describing the feeling like sandpaper or something similar.  Since I am more sensory in-tuned to such things, I can only assume that the small fibers on the fleece caused the same reaction to everyone, those on the spectrum are just more sensitive to it.

This opens up many possibilities to me.  One thing I want to make clear is that parents of those of the spectrum should not dismiss their ASD child's reaction to the sensations of touching fleece or eating a food that has a texture which causes them to gag.  Since my autism is mild, the touch of fleece with is merely uncomfortable to me, can be downright painful to someone who has more sensory problems than me.  While the material seems to grip my skin upon contact, I find it easy to imagine that a moderate or severely autistic individual might feel like fleece is tearing at their skin.  I urge parents to not ignore instances such as this.  

When I was younger, all I wanted was to be understood by others.  This tidbit about fleece is just another piece of the autism puzzle.

Saturday, February 18, 2012

Junior Positively Autistic Ryans Spectrum Talk 02/20 by Positively Autistic | Blog Talk Radio

As spoken of in my previous blog posts, I cannot stress enough the importance of creativity in the lives of those on the autism spectrum. My own life has been influenced by creative activities in the two following areas: music and writing. In this Monday's broadcast of Junior Positively Autistic: Ryan's Spectrum Talk, I will discuss the importance of creativity in the life of someone on the autism spectrum. Also, I will relate my own creative experience in the areas of music and writing. Tune into this show this coming Monday, February 20, at 1:00 pm eastern standard time, 10 am Pacific Standard time, 6 pm UK time. Feel free to participate in the chat room. Remember that you can call in using Skype, or by calling (619) 393-2848.

Junior Positively Autistic Ryans Spectrum Talk 02/20 by Positively Autistic | Blog Talk Radio

Overcoming Barriers


Over the course of my life, I have overcome many barriers to achieve all the things that I have accomplished and reach the point I am at today.  In this blog post, I am going to discuss many of the barriers that I have vanquished.  We all hear that those on the spectrum have to overcome many challenges to live a successful, independent life.  However, I feel there is great uncertainty involved with this.  For many parents and individuals on the spectrum, looking to the future is like trying to peer through a vast fog, beyond which nothing is known for sure.  It is my hope by listing my challenges that I have overcome, I will pave the path for many parents who are looking for a glimmer of inspiration.

My first barrier I faced was a speech barrier.  When I was two years old, I lost what speech skills I had then obtained.  Gradually, my mom worked with me by talking to me and playing music.  Eventually, I was able to regain my verbal language skills.  My second barrier is what I will call my "shyness barrier."  Even after I regained my speech skills, I never really talked to anyone besides my parents.  Over time, I came out of my shell and made friends, some of which I know today, almost twenty years later.

The next barrier I overcame was the academic barrier.  Prior to eighth grade, I had nearly been held back a grade on more than one occasion.  It was a true achievement, not to mention surprise, to make the A/B honor role, with mostly special ed classes.  Through high school, I had to break through the wake of my depression I had experienced in middle school and gain more self confidence.  Continuing the honor role after moving out of special ed in science and history helped me to recognize that maybe I was as smart as people told me I was.  Throughout high school, I also made many friends and expanded my social boundaries.  Admittedly, many of these friends had no idea what I had experienced just a few years previously.

When I graduated from high school into college, I was doubtful my academic success would continue, since there is no special ed in college.  My first semester proved me how wrong I was.  I started college with a 3.84 GPA.  The lowest grade I received during the first academic year was an A-.  Now I have nearly completed college and have still received all A's, B's, and a handful of C's since I first started college.

When I started this blog, I broke a barrier as well.  Prior to that time, I considered knowledge about my autism to be private information.  Only family and a handful of friends knew that I was on the spectrum.  Sharing information and insight of my condition to faceless people I would never meet, was frightening initially.    Over time, I became more comfortable.  Right now, I know that I am making a difference because you have taken the time to read my words.  I hope that by sharing the challenges I have overcome, I might instill hope in others who really need it.

Advantages of a Gluten Free Diet

A friend recently gave me the idea to write about the advantages a gluten-free diet may have in the behavior of an individual on the autism spectrum.  A gluten free diet is defined by the exclusion of the protein gluten, which is a protein found in foods containing wheat and rye.  Following such a diet can be difficult and expensive, however, studies have proven that the implementation of a gluten free diet can have reduce autistic characteristics.

A gluten free diet, while difficult to maintain, has many mental and physical advantages.  Eating gluten free food goes great lengths towards losing weight and achieving digestive health.  This kind of diet is the only treatment for those suffering from Celiac disease.  It has been shown to reduce varied other conditions ranging from arthritus to seizures.  To view my research source, click the following link for a comprehensive link to listed benefits: http://www.glutenfree-diet.org/benefits.htm

As with every other aspect of the autism spectrum, no two individuals on the spectrum respond to a gluten free diet in the same manner.  Varied results have been reported, ranging from mild improvement to a dramatic reduction of autistic behaviors.  Other benefits have been observed by combining a gluten free diet with other diets.  For more information, click on the following link to view my research source: http://www.autismweb.com/diet.htm.

To make this clear, I am a writer, not a professional.  To find out if a gluten free diet might be appropriate for your child, it would be best to consult your child's doctor.

Saturday, February 11, 2012

A REMINDER

To close out this week, I wanted to remind my readers to check out my new blog radio, Junior Positively Autistic, Ryan's Spectrum Talk, on Blog Talk Radio.

Click the following link to view the show:

http://www.blogtalkradio.com/positivelyautistic/2012/02/13/ryans-spectrum-talk

This past Friday, I performed a test to gain a feel for radio broadcasting on blog talk radio.  It went over so well, that I was told that I should share this test as a preview since I did such a good job.  That is a good sign, considering how performing radio talk shows is a new experience for me.  To see this preview of what I might talk about, click the following link:

http://www.blogtalkradio.com/positivelyautistic/2012/02/10/junior-positively-autistic-ryans-spectrum-talk-test-1

Creativity is a More than a Want...It is a NEED


Valentine's Day is approaching and the demands at my job are rising.  I find myself getting worked up from what needs to be done. However, my responsibilities at work are not the source of my restlessness and unease.  Imagine that you feel like something is wrong, like something needs to be done, and like something you are doing is not good enough, I feel all those things from time to time.  The source of those feelings?  Simple.  I haven't been creative enough lately.

I know of a solution is to solve that problem, to put my mind more at ease.  The solution is simple but by no means obvious.  In order to think clearly at work, I need to write.  More specifically, I need to find some way to release my creativity that is building up inside me.  Simply jotting words down on a page is not enough.  I have to listen ti myself and find a way to express what needs to be said.  Without fail, I always feel better afterwards.  This doesn't effect just work, it impacts my peace of mind.

This is how important it is to find a way to express creativity.  Writing is the answer to my problem in order to regain my peace of mind.  The answer will probably be different for other individuals on the spectrum.  Someone might find peace of mind through singing or painting or other means.  I used to look for external sources for the answers to my restlessness when the answer was on the inside all along, waiting to be expressed.

Wednesday, February 8, 2012

Positively Autistic Ryans Spectrum Talk 02/13 by Positively Autistic | Blog Talk Radio

Starting next week, I will be hosting my own online radio show, "Junior Positively Autistic: Ryan's Spectrum Talk!" This show will air every Monday at 1 pm eastern standard time, starting on February 13th. Feel free to join me in the chat room or call the following number (619) 393-2848 to give me your thoughts on the air. You can also call in via Skype. I'm really looking forward to another opportunity to share my insights and experiences of living on the autism spectrum. Remember that those on the spectrum can literally change the world under the right conditions. There is no better time to begin that change than now!

Positively Autistic Ryans Spectrum Talk 02/13 by Positively Autistic | Blog Talk Radio

Saturday, February 4, 2012

Check out this Online Autism Radio Show!

Here is a message posted by my friend, Joe Westlake, earlier this week on Facebook:

“Join us live for the Positively Autistic Radio Show this upcoming Wednesday which is one every Wednesday… Positively Autistic: Marilyn and Joe’s Poetry Hour.  This is a show that runs weekly, by poet and host Marilyn Ann Francis, and co-host Joe Westlake.    Join us from 6m UK time, 1 pm EST and 10am PST.  Please feel free to join us in the chat room, and don’t forget you can call in to talk to and read poetry.  This show is all about poetry and Autism Awareness.  Call in on 1-619-393-2848.  For more information, visit: www.positivelyautistic.com”

I have tuned into this show a few times and read a few of my own poems this past week.  I encourage my readers to tune into this show Wednesdays, 1 p.m. eastern time, 10 a.m. pacific time.  This is another great example of the achievements of those on the autism spectrum.  Listeners can call in to the show through the number listed above or through Skype.  If you don't want to talk or can't get through, you can participate in the chat room.  This displays great examples of what those on the autism spectrum can achieve under the right conditions.

Blind Boy with Autism Sings Heartwarming Song

My grandparents recently brought this inspiring video to my attention.  This ten year old has autism and is blind.  I cannot begin to imagine how he views the world.  Despite his challenges, rocking on stage while he is introduced, this boy sings an inspiring song, bringing light to the fact that those on the autism spectrum can accomplish extraordinary achievements under the right conditions. Things that people off the spectrum can accomplish only through years of study and hard work.  There are two sides to every coin.  This boy might live in a dark world that is dictated by his senses.  Try listening to that song with your eyes closed.  Would you be able to tell that he has autism based on the way he sings?

To watch this video, click on the following link:

Friday, February 3, 2012

Autists are "square pegs" in a world filled with "round holes"


“Autists are the ultimate square pegs, and the problem with pounding a square peg into a round hole is not that the hammering is hard work. It's that you're destroying the peg.”
― Paul Collins 
 I saw this post on Facebook earlier and it reminded me of something that is frequently on my mind.  As mentioned in previous posts, I grew up watching the film "Apollo 13."  If I were given a few hours of sustained concentration, I could probably recite that film word for word.  That being the case, it should be known that I am reciting all the background information for this blog post from memory using what I can recall from the film and my interests in space travel from when I was younger.  I ask everyone to bear with me as I build this up to my point. 
One of the problems facing the astronauts on their journey back from the moon is something that we all deal with on a daily basis without really thinking about it: carbon dioxide.  This is the waste gas that is exhaled every time we take a breath.  Under normal circumstances on the Apollo missions, both the command module, which was the section of the vehicle that the astronauts use to re-enter earth's atmosphere, and the lunar module, which was the part of the space craft that landed on the moon, each had these filters to recycle carbon dioxide exhaled by the astronauts.  In a confined space 100,000 miles from home, the carbon dioxide exhaled by the astronauts has nowhere to go and would replace the oxygen, if not for the filter.  The Apollo 13 mission was far from normal.  The astronauts and the ground crew below had to push the capabilities of the space craft to the ultimate limit.
What happened in this case is the astronauts were forced to shut down the functions of the command module to conserve power for reentry and spend their trip to earth within the lunar module.  There were three crew members that traveled to the moon using the Saturn V spacecraft.  They were the flight commander, the lunar module pilot, and the command module pilot.  Under normal circumstances, the command module pilot stays in the spacecraft orbiting the moon while the other two crew members descend to the surface in the lunar module.  This being the case, the lunar module was designed to accommodate only two people.  The Apollo 13 circumstances exceeded this capability, so the carbon dioxide filters in the lunar module were saturated by circumstances the designers never expected them to face.
This brings me back to the quote above.  The given alternative for the astronauts was to use the carbon dioxide filters from the command module in exchange for the saturated filters in the lunar module.  However, both filters were designed by two different companies.  The filter in the command module was square and the one in the lunar module was round.  With the lives of the astronauts at stake, the crew on the ground had to find a way to literally fit a square peg in a round hole with the lives of the astronauts at stake as the slowly suffocated from excess carbon dioxide.
The ground crew bellow was given the task of building this filter to ACCOMODATE for the difference in specifications.  This was a high stakes craft project using nothing but the items the astronauts had access to in their space craft.  Once the design was complete, mission control relayed the instructions for the filter to the astronauts and walked them through the construction process for the make-shift device that saved their lives.
In a metaphorical sense, this is what individuals with autism face on a daily basis.  Ranging from a parent who has a child with Aspergers Syndrome, to another parent who has a nonverbal child with severe autism, the concept is the same.  Those children are square pegs in a society designed for those who are round, so the world functions around base assumption that everyone is round.  Trying to hammer an autistic child into a situation that they are not able to handle does not solve the situation.  My mission while raising autism awareness is to show people that those with autism are not disabled or incapable of functioning in a world made of round holes.  With the right thinking, experimenting, and accommodations using what people have available to them can make these situations work.  Given that this Apollo 13 filter was built by the brightest scientific minds of the day, not everyone has access to reasoning capability like that.
Parents of children with autism: can anyone really claim to know your child better than you do?  You have been through everything with them as you try to understand how to accommodate their individual needs with the resources you have.  Through the human spirit of becoming greater than you are presently, I guarantee that it can be done.  I am living proof!