Going Through School with Asperger's Syndrome: A Personal Story

All throughout school I was usually one of the smartest students in my class.  I did really well on tests but I had trouble focusing in class.  I always struggled with group work.  And if my homework took more than an hour then I wouldn't finish it.  During my high school years I knew that there was something about me that made me different than my peers but I had no idea what it was.  When I was sixteen I was diagnosed with Attention Deficit Disorder but that wasn't it.  Then finally at the age on nineteen one of my friends told me about something called Asperger's Syndrome and shortly after I was diagnosed with AS.

Now, I know what you're thinking, what is Asperger's Syndrome?  Asperger's Syndrome is a pervasive development disorder.  What does that mean? It's an Autism Spectrum Disorder.  Asperger's is on the high functioning part of the spectrum.  Normally children are diagnosed much younger than I was.  Symptoms normally start to present themselves at the age of three.  Like Autism, there is no known cause and no cure for Aspergers, there are only ways to manage the disorder.

This video from PBS show Arthur does a very good job at describing what Asperger's Syndrome is. 

The symptoms of Asperger's Syndrome varies from person to person but there are signs.  This is a list of signs that children with Aperger's may exhibit: (the ones in maroon are the ones that I experience)

- Not picking up on social cues and may lack inborn social skills such as being able to read body language, start or maintain a conversation and taking turns talking.

-Disliking any change in routines.

-Being unable to recognize subtle differences in speech tone.  Such as not understanding a joke or taking a sarcastic comment literally.

-Have a formal style of talking or a vocabulary that is advanced for their age.

-Avoiding eye contact or staring at others. 

-Have unusual facial expressions or postures.

-Being preoccupied with only one or a few topics in which the child will be very knowledgeable about. (I went through a lot of these: The Wizard of Oz when I was four; Pokemon when I was about seven; Harry Potter between the ages of nine and thirteen; Right now, my current obsession is Doctor Who)

-Talking a lot about a favorite subject. 

-Have delayed motor development.

-Have heightened sensitivity and become overstimulated by loud noises, lights or strong tastes or textures.  

(I have answered yes to all ten questions in the video)

Because of Asperger's I had a really hard time in fifth, sixth and seventh grade. In fifth grade I had transferred from a parochial school in Providence to a public school in North Providence.  I didn't take to the change well.  It took me nearly two weeks to make friends.  In sixth grade I had really awful teachers.  These two teachers did the opposite of everything we learned about in class.  They had "problem students" face the wall either in the front of the class or in the back of the class.  The students who needed extra help (I was one of them) were ignored or in my case, belittled in front of the entire class.  That year I would have an average of three and a half hours of homework a night.  I could never finish all my homework and I was usually punished for it.  I would lose my recess privileges and I wouldn't be allowed to talk to my friends at snack time.  By February of that school year, my teachers had stopped attempting to teach me anything and I had stopped attempting to learn from them.  Because of that, I nearly failed sixth grade. 

 

In seventh grade I was relentlessly bullied for being "slow."  I was called: slow, retard, SPED, poor, lesbian and just about every name in the book.  Thankfully, there was a teacher aid for a boy in my class and she was told by my teachers to help me out as well.  Because I couldn't deal with what I was going through I had behavioral issues at home and in school.  I fought with my best friend, threw a notebook at one of my classmates, and I told another classmates to hit me.  After several calls from the school, visits with my teachers, and almost being suspended (for throwing a notebook at a classmate) my mother decided to send me to another school for eighth grade.  

About two years ago I started going to a support group at The Groden Center in Providence.  The group consists of young adults who have Asperger's Syndrome.  It's a way for us to learn about how to interact in society and to meet other young adults who are having the same experiences.  I still have issues in school (it took me nearly five hours to write this) but with a little push I'm able to get things done. 

The thing about Asperger's Syndrome is that in some instances you would never know that the person with AS has it.  Sometimes people with Asperger's need someone "safe" that they can go to.  Someone that they feel comfortable talking to and who accepts their little quirks.  Sometimes all someone with AS wants is someone who understands them one hundred percent.  I hope you were able to learn a little bit from my post. 

I found a video that I wanted to share

It's the year 2013 and Georgia Schools are still segregating their high school proms.  One group of students have decided to plan their own integrated prom.   They reserved the venue, handed out flier and hired a DJ.  I find it really disgusting that schools in the south are still racially segregating proms and other school events.  

"Gaming for a Cause." Social Justice Event

On Saturday, April 12, 2013 I attended the "Gaming for a Cause" event that was put on by The RIC Otaku and G.A.M.E.R (Games and Merriment Enthusiasts of RIC).  The event was put on to raise money for a charity called "The Able Gamers Foundation."  Able Gamers makes video game accessible to all people regardless of physical ability.  

-Connections-
"In Service of What?" Kahne and Westeimer
"Gaming for a Cause" definitely fit the description of a charity that was given in the reading.  According to Kahne and Westeimer, a charity's moral domain is giving, the political domain is civic duty and the intellectual domain is an additive experience.  While, "Gaming for a Cause's" political domain wasn't civic duty (we were playing video games the entire night for crying out loud!) it fit the moral and intellectual domains pretty well.  The event was an event that was set up to raise money to donate (give) to a foundation.  The additive experience of the event was having the opportunity to maybe play a game with a complete stranger and perhaps make a new friend in the process.  Attendees could, if they chose to, participate in one of three pay-to-play tournaments (a $3 fee), or try to win a prize in the raffle (tickets were sold 1 for $1 or 5 for $3).  However the attendees didn't have to participate in either if they didn't want to.  The Otaku and G.A.M.E.R were able to raise $354 for the Able Gamers Foundation through the event.

"Safe Spaces."
At one point during the event, one of the RIC students who has a developmental disability came to the event.  Everyone who was a part of the event welcomed the student with open arms.  He participated in one of the card games, "Apples to Apples, and then he had an absolute blast playing "Dance Central 3" for Xbox 360 and Kinect with the other attendees. It was really wonderful to see everyone welcome a student with a disability so wholeheartedly and make him feel welcomed.    

I would also say that the event was a completely discrimination-free zone. There were students of all different races, backgrounds, and genders in attendance.  The members of Otaku and G.A.M.E.R had created a space where everyone could hang out, play video games, eat pizza and get the chance to talk to someone that they may not have spoken to otherwise.  

"Citizenship in Schools."
  While the event didn't necessarily have much to do about the inclusion of children with disabilities, the foundation that the event was raising money for does.  The Able Gamers Foundation tries its best to allow all children the opportunity to play video games.  Able Gamers tries alternate solutions for a child who might not be able to play video games due to physical limitations.  Such as mounting the controller to a table or wheelchair for children who cannot hold or use a controller normally and provide a full audio description of what is going on in the game for a child who is blind.  Able Gamers is able to give children the opportunity to take part in something that many children take for granted, playing video games.

This article talks about how video game companies are starting to create games for disabled children.

With the introduction of motion controls in video games, Nintendo Wii and the Kinect for Xbox 360, video games have found their way into physical therapy and rehabilitation. For the past three summers I helped out with a program at Sargent Rehabilitation Center in Warwick Rhode Island.  One of the programs that I helped out in was a physical education class for children and teens with profound autism.  While there I found out that the children play the Nintendo Wii as part of their classes and therapy.  They play games such as Wii Sports, Wii Resort and Just Dance.  These games are a way to help the children to improve their motor skills, hand eye coordination as well as social skills if they're playing with another student. 

This link talks about how video games help children with autism learn social skills. 

"Citizenship in Schools: Reconceptualizing Down Syndrome." -Quotes-

I found the text: "Citizenship in Schools: Reconceptualizing Down Syndrome" to be a rather interesting read.  There were a few quotes in the text that really stood out to me.

"Now we know that people with disabilities can learn and have a full, rich life. The challenge is to erase negative attitudes about people with develop­mental disabilities, get rid of the stereotypes and break the barriers for people with disabilities. (Kingsley, 1996, p. 6)." (Page 72)

Upon reading this quote I recalled an article I read in the Providence Journal a few years back.  The article was about a young woman who had Down Syndrome (sadly I couldn't find the article online).  She lived in her own apartment in Providence with the help of several aides four of whom were local college students.  The article really hit me because the young woman the article was about had been in my Girl Scout Troop back in 2000.  She earned all the same badges and patches the rest of the troop.  She wasn't given watered-down, easier activities than the rest of the troop.  She was even able to give a presentation on Down Syndrome to a younger troop.  

Then a few weeks ago I came across this video about a young man with Down Syndrome who owns his restaurant.

 These two examples go to show that just because a person was born with Down Syndrome, it doesn't mean that they can't live fulfilling lives.



"How absurd to be judged by others at all,especially by those who have never experienced a disability or who are unwillingly providing us with support or who don't listen to the voices we have. (p. 12)" (Page 73)

Both of the quote I have put so far talk about how people with Down Syndrome should be treated like people who do not have it.  Just because someone was born with Down Syndrome doesn't make them any less a person.  Later on in the article Kliewer talked about a high school freshman with Down Syndrome who went from a segregated school to a public school.   He mentioned that before the student entered public school she had poor motor skills, low self-esteem and would often "act-out" in class.  Then after she entered the public school all of that changed.  Her motor skills improved, her communication skills improved and her behavior improved.  I particularly enjoyed reading the little excerpt of one of the student's newspaper articles:

"Knock it off! Knock it off! Becky is a girl who has cerebral palsy....She's not allowed in school because of her handicaps. I think her school should just knock it off and let her in. She needs an education. Just because she is handicapped doesn't mean she can't learn. She's just got to do what she can do, which can be just about anything. Becky is smart enough to fight back, just like I would if I wasn't allowed in school. I have Down Syndrome and I can still do anything I want to do. If I wasn't allowed in school. I wouldn't have learned to do all the things I do now. I have Down syndrome, but I am not handicapped. (Durovich, 1990, 
quoted in Harris, 1994, p. 296)" (Page 93)

-Things to consider:-
I honestly think that the quote above can easily sum up the entire article quite nicely.  Just because a person was born with Downs Syndrome it doesn't necessarily mean that they are handicapped. 

"In Service of What?" Kahne and Westheimer -Hyperlinks-

As I read this article, I discovered that I have been unknowingly participating in Service Learning projects since I was in the fourth or fifth grade.  When I was in the fourth grade, I became a Girl Scout.  Nearly all Girl Scout badges and awards had some element of community service to them.  For one of the Interest Projects I earned my troop painted a room in the church where our meeting were held.  Then every year we participated in something called Project Undercover where we donated socks and underwear to under-privileged children throughout Rhode Island.  I helped a fellow troop member with her Silver Award Project.  She helped to teach younger girls about staying healthy.  We got teach them easy healthy recipes, how to properly wash their hands, and exercises that they could do every day.  While in Girl Scouts I got to work with several girls who had profound Autism, Down Syndrome, and other disabilities. 

 I was a Girl Scout for well over ten years and I couldn't tell you how many hours of community service I participated in.  One of the quotes from the reading that stuck out to me was: "In addition to helping those they serve, such service learning activities seek to promote students' self-esteem, to develop higher-order thinking skills, to make use of multiple abilities, and to provide authentic learning experience."  I know that for me, the years I spent in Girl Scouts complete validate the quote.  I was able to develop those skills as well leadership, responsibility, and many other valuable skills at a young age.  I know the troops that I was in didn't make community service projects seem like work.  Usually  we did projects with younger troops.  Whether I was an entire day dedicated to staying healthy or just a little craft project.

 My Community Service Patch

 My Patches for participating in Project Undercover

The Junior Aide Patch I earned for working with younger troops.

Throughout high school I was in several school clubs that actively participated in community service and service learning programs.  From ten through twelfth grade I was a member of the North Providence High Math Peer Tutors where I would go to one of the middle schools every Thursday and work with students in math.  It was a program very similar to the VIPS program only it took place after school.  I was a member of the Wind Ensemble where we would go to the other schools and put on concerts for them.  It was similar to what the music director in the reading did with his upper-middle-class students.  I was also a member and officer in my school's chapter of Students Against Destructive Decisions.  The club's goal was to do our best to educate our fellow students about the dangers of substance abuse.  Then there was Senior Project.  For my Senior Project, I worked with the middle school band.  I participated in their after school band sessions, performed in their concerts, went on two of their field trips and I got to teach a few music classes. I was supposed to complete a minimum of sixteen mentoring hours  but in the end I completed well over forty hours!  I even went after I graduated!

I think I did my most rewarding Service learning projects through the martial arts school I attend.  I'm a certified black belt at Mastery Martial Arts and for the past few summers I have been helping with a program at Sargent Rehabilitation Center in Warwick, Rhode Island. Once a week during the summers I have been working with one of the Instructors in a program for teens and young adults who have suffered from brain injuries and another program for children and teens with profound Autism.  It really is amazing to watch the children progress in the program, especially the children with Autism.  During the first week or so we usually have a hard time getting the to do the movements and stand still but then by the end of the six week program they can stand still on their place marker, go through the movements with ease and even look us in the eye!

-Things to think about-

I know for me, doing volunteer work and service learning projects is almost as big a part of my life as going to school.  I've been able to use my past experiences as tool when I go to Kennedy Elementary School for the Service Learning Project through VIPS.  Has anyone had similar experiences?  Has anyone had no prior experience with Service learning project before the one we're doing for class?        

"Cinderella Ate My Daughter" Orenstein

This was an interesting read for me.  When the whole Disney Princess franchise came to be I was about eleven years old and I was totally not into it.  Sure, I have seen every Disney Princess film at least once (my friends dragged me to "The Princess and the Frog" when it was in theaters) but it wasn't what I was interested in as a kid.  "Sleeping Beauty," "Beauty and the Beast," "Snow White," "Cinderella," "The Little Mermaid," and "Pocahontas" just weren't movies that I wanted to watch.  My younger sister, who is ten years younger than me, on the other hand was swallowed up by the Disney Princess Franchise.  She had every Disney Princess dress-up costume, several Princess Dolls, every Disney Princess Movie, the sequels to the movies, the sing-along movies, books, you name it, she probably had it.  So when Orenstein mentions that there were 26,000 Disney Princess items, it doesn't surprise me seeing that my sister must have had almost two hundred Disney Princess items and there was an almost endless amount of items that she didn't have. 

 One day when she was about four, my sister told me that she wanted to be a princess when she grew up and she asked me if I had wanted to be a princess when I was four years old.  I told her no and that when I was four I wanted to be a firefighter (see the picture below).  She cocked her head in a confused manner and said: "Oh, when you were a little boy?"   That conversation I had with my sister about eight years ago describes what Christensen talked about in the text "Unlearning the Myths that Bind Us" and the secret education.  The two terms that describes a person who fights fires are: "firefighter" and "fireman." The word "firewoman" is not in the dictionary.  At the age of four my sister had it in her mind that only little boys could want to become firefighters (or firemen) when they grew up and little girls could only want to become princesses when they grew up.  One of the lines that really stood out to em was when Orenstein said: "The boys seem to be exploring the world, while the girls explored femininity."  My mother used to work at an early childhood center and in the dress-up corner the boys would have policemen costumes, firemen costumes and Superman/Batman/Spiderman costumes when they girls would have princess dresses. Why can't they have a police woman costume, or a fire-woman costume?

Me dressed up as a firefighter for Halloween 1994 (age 4).  

   

The part of the article that really stood out to me was the part titled "Pinked."  There was one theme in that that I don't think is true.  She mentioned that when she was going through the Toy Fair one of the vendor mentioned that: "I guess girls are just born loving the color pink."  I am female and pink was never my favorite color and I never had a fondness for pink things.  My parents painted my childhood bedroom pink when I was about three years old and while my room was all the rage with my little girl friends I didn't particularly care for it.  I didn't hate it but I didn't love it.  My room stayed the soft pink color even after we moved out of the house almost seven years later. 

My Pink bedroom and me in 1997

-Things to Think about-

I don't think that girls are born to love the color pink.  I think that because society has automatically thrust the color upon little girls it has become a learned trait that starts from infancy.  "It's a Girl!" balloons are always pink.  This also goes back to the secret education that Christensen talked about.  Orenstein also pointed out that there was a time when pink was associated with boys and blue was associated with girls.  Pink was a variation of red which was considered a powerful and masculine color. 

Going on about Christensen, a personal experience

The other day at work I had a little boy, probably about four or five years old, in my aisle at the market I work at.  He looked at me, turned to his mother and said: "Mommy, I can't tell if that's a boy or a girl."  I wasn't offended by it at all.  I could see why the boy was confused.  I am almost the exact opposite of how various forms of media depict young women.  I have short, almost messy dark hair as opposed to the long, pin-straight platinum-blond that you see in the media.  I don't wear any make-up at all.  Young women in the media are almost never seen without make-up on.  While young women in the media have thin, perfectly sculpted eyebrows, mine are rather bushy and unkempt.  Unlike in the media, I am not well endowed.  Unless I wear almost form-fitting shirts, I appear nearly flat chested (I'm not afraid to admit I'm flat chested).  The average cup-size in America is a 36C and I will admit to being a 32A (a size that is made for girls who are still developing).  There are almost no girls in the media who are like me.  Honestly, when was the last time a shorter-haired young woman appeared in a children's show, cartoon or otherwise?

 (A recent picture of me)

Several of my friends were outraged at the comment made about me, (My aunt went as far as saying: "What kind of a moron is he?") And I explained to them that children are honest, sometimes brutally honest. They don't have the filters that adults have and therefor they will say whatever happens to be on their minds.  Most adults wouldn't go up to an androgynous person and ask: "Are you a boy or a girl?"  But a young child would.  I'm sure that if the child was a little bit older and had to ability to read my rather long name (my younger brother called me Kaela until he was five because of the length of my name) he would have been able to deduce that I am female.  He wasn't trying to be rude.  He was just trying to figure something out in the only way he knew how.  By asking a question that few adults would dare to ask.