A Secret World: Autism Misunderstood

Today I was looking to expand the blog’s reach. To do so, I 
I was trying to find an old video I posted on Facebook about Autism. Unfortunately, I couldn’t find it; however, I did stumble upon Carly. Carly is a girl with Autism. She inspired me to research the disorder more accurately, should I say the spectrum of disorders. I have friends with Aspergers, a high functioning form of Autism, but like many others, I had preconceived notions about Autism before begetting my research. Let me start by explaining a little bit about Carly’s story.

 

Carly

 

The video¹I found might be old, but in the video, ABC news covers a story about a 14-year-old girl with Autism in Toronto, Canada. Her name is Carly. When I clicked on the video, I thought that she would be your typical kid with Autism. Boy, was I wrong? This girl is amazing. At first, my suspicions were confirmed, but as I watched further, something happened; she opened my eyes to a whole new world. Now I understand why people want to work with autistic children. They are so smart and have so much to teach us. It is just that we have not found a way to unlock the keys to their secret world at this point.

 

Carly did not communicate a word until she was 11. Then one day, she ran to a computer and typed one name, hurt. A couple of days later, or I might have gotten the timeline wrong, she ordered help but then was prompted to finish the word, and she added a p. It took time, but with the help of numerous therapists, Carly could find her voice. She now has a blog where readers can follow her story and get updates about Carly and autism². 

 

 

Hollywood Myth

 

Carly’s story inspired me to do further research, and I came across several interesting things. The first of which is a startling number of stereotypes of Austin. These stereotypes about Autism are often perpetuated in mainstream society in popular formats such as the silver screen. A well-known movie was produced in 1988, which had two popular actors and discussed Autism. It was called Rain Man, and it was produced by the Guber-Peters Company³. The movie starred Dustin Hoffman and Tom Cruise. To give a short synopsis of the movie, Charlie Babbit kidnaps his Autistic brother from a facility after learning that he has been given the majority of the family inheritance. The film portrays Dustin Hoffman’s character “Rain Man” as an Autistic Savant. He can remember numbers extremely well and sticks very near to a schedule. While it is true that some  Autistic people are savants, according to Care2.com, this portion of Autism is highly less prevalent than the movie suggests. Many people with Autism have learning difficulties and need help when it comes to an educational setting⁴.

The Truth About Autism

 

Since I have discussed the Hollywood about Autism above, I feel it is appropriate to outline the basic facts of Autism here. Autism is much like Muscular Dystrophy. Autism does not refer to precisely one disorder; instead, it refers to a group of disorders. Therefore, to be more accurate, there is not a disability known as Autism, rather disabilities along the Autism Spectrum, hence the term Autism Spectrum Disorder. ASDs are not disorders that can be scientifically diagnosed. However, according to the National Institute of Neurological Disorders and Stroke (NINDS)⁵, there are seven early signs of Autism. They are no babbling or pointing by age 1, no single words by 16 months or two-word phrases by age 2, no response to name, loss of language or social skills, poor eye contact, excessive lining up of toys or objects, no smiling or social responsiveness. However, if your child does not exhibit these early signs, there are still later disorder indicators. They include impaired social interaction or imagination capabilities and language deficiencies, such as the repetitive use of language. Autistic children also tend to be very ritualistic individuals, but it does not necessarily exhibit this behavior. 

 

Now that the primary signs of Autism have been discussed, it is essential to discuss Autism diagnosis. This is a two-step process in most cases. The first signs of Autism or an ASD are usually detected by a pediatrician or other childhood doctor with light screening methods. If a child is thought to have an ASD, then the second stage of screening can begin. This screening stage is more complex and involves a team of individuals, not just one specific doctor. Although "While you may be concerned about labeling your young child with ASD, the earlier the disorder is diagnosed, the sooner specific interventions may begin. Early intervention can reduce or prevent the more severe disabilities associated with ASD. Early intervention may also improve your child's IQ, language, and everyday functional skills, also called adaptive behavior.”⁶  The team usually includes individuals from numerous disciplines, including psychologists, neurologists, speech pathologists, and/or pediatricians⁵. When individuals are diagnosed with Autism, they are usually broken into three groups: classic Autism, Aspbergers, and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). The distinction is usually based on an individual’s language skills. Those with highly developed language skills who exhibit signs of Autism are usually classified as having Aspbergers. It is often true, but not always, when an individual with Aspbergers will specialize in a particular subject. As with all Autistic disorders, individuals with Aspbergers struggle in social situations. Another group can be classified as PDD-NOS. This is used as a “catch-all” label for all children who exhibit some Autistic behaviors, but not enough to fit either the diagnosis of classic Autism or Aspbergers. A final, rare group can be diagnosed as having Childhood Disintegrative Disorder. These children develop normally until somewhere between the ages of three and ten, starting to establish Autistic behaviors. All three of these groups are Autistic, but all three of these groups are also not well understood. There are common stereotypes of Autism that need to be debunked. 

 

There are several common misconceptions when it comes to ASD. The most common misconception is that people who are autistic have trouble making friends. This, however, is far from the truth. Autistic people may struggle in certain social situations, but that does not limit them from maintaining friendships and other relationships with their peers. What often limits this is a misunderstanding of difference. Autistic people are just like you and me except that they express themselves in different ways. If we want to change the way people view Autism, we must increase autism awareness and knowledge⁷.

Another common misconception is that autistic people lack empathy; however, this is far from the truth, intact the extreme opposite is often true. Many people with Autism often feel too much empathy and get overwhelmed by the people around them. Perhaps the empathy problem can be better understood if the people who interact with autistic individuals are more patient and change how they present stimuli to autistic people.

Communication in today's society is crucial; if one does not know how to communicate, their ideas can be lost on those around them; however, verbal communication is not the only way contact occurs. A large portion of communication comes from body language and other methods. This principle also applies to the autistic community. If people wish to understand Autism as a whole better, they must realize that traditional communication methods are not always possible or feasible. For example, some individuals with Autism remain non-verbal or a large portion of their lives, i.e., Carly; however, this does not mean they have nothing to say; they are human with wants, feelings, desires, and dreams. Autism, just like disability, in general, is given a negative reputation by society simply because people do not know how to unlock the secret world of Autism. in other words, I believe that Autism is not a disability. Instead, it is a reflection of society's inability to think outside the box. Autistic people may be some of the smartest individuals gods created, and it may be a society behind in the times⁷. 

 

Autism is highly prevalent in the U.S. however; it is not only an American problem. The following graph shows that Autism is a growing problem worldwide and needs to be better understood as a whole. Such organizations as Autism Speaks⁹ and others do a great job of promoting Autism research and Autism awareness. Still, through word of mouth and further knowledge, the world of Autism will one day no longer be a mystery.

 

 

 

COUNTRY China	NUMBER 1,100,000	DATA SOURCE Peking Health Science Center (estimate based on official 2005 rate of 1.1 in 1000 children affected)
India	2,000,000	Action for Autism India (based on an estimated rate of 1 in 250)
United States	1,500,000	U.S. Centers for Disease Control and Prevention ADDME Study 2007 and Autism Society of America
United Kingdom	650,000	National Autistic Society 2006 (based on the rate of 1 in 100)
Mexico	150,000	Based on estimates by the Ministry of Health of 2 to 6 per 1000
Philippines	500,000	Autism Society of the Philippines
Thailand	180,000	An estimate of the Minister of Mental Health 8

 

 

 

Footnotes 

1.https://www.youtube.com/watch?v=oa3X4ASf0wA
2. http://carlyvoice.com/home/ 
3. imdb.com
4. Care2.com
5. http://www.ninds.nih.gov/disorders/autism/detail_autism.htm
6. http://www.nimh.nih.gov/health/publications/a-parents-guide-to-autism-spectrum-disorder/what-is-autism-spectrum-disorder-asd.shtml 
7. http://www.care2.com/causes/dubunking-7-common-myths-about-autism.html#lxzz2SjFo0bOY

Eight .https://www.youtube.com/watch?v=oa3X4ASf0wA9. autismspeaks.org 

 

It’s Like We Want Our Cake and We Want to Eat it too Without Having to Work For It. Sorry, Life Doesn’t Work That Way!

A disturbing trend inspired me to write this blog. Please note: This blog may offend some of my disabled community, but that is not my goal! The goal is to express the idea that we are a minority that claims to be treated equally, but we cut corners more often than not. Because we cut corners, two things have occurred. People view us with unnecessary sympathy, and people end up taking advantage of disabilities. 

Let me first explain how this blog idea came to mind. I watched The Tonight Show earlier this week. Jay Leno mentioned the following in this monologue; Recently, out of Florida, black market disabled people have been hired to help people skip lines. Initially, I thought it was a story that Jay was making up for a good laugh because it got one. However, upon further research, I found it to be true. Several articles have been written about the issue. Two of which are going to be footnoted below. This blog will address that, but it will also address much more critical issues. 

First off, I think it is rather funny that people are such in a rush to hear, “It’s a small world after all...” sung to you over and over again that they would be willing to give up more of their hard owned money to a disabled person to use the sympathy that society offers them. I mean, really?! How much would it hurt to learn some patience? I mean, yes, these lines are pretty long...but the ride’s not going anywhere! All they are losing out on is their hard-earned money. If you don’t spend enough money at Disney world or places like that in general, why must you need a reason to shove unnecessary money?

Enough about that, and now down to the nitty-gritty of this blog. I am a disabled individual. I have Cerebral Palsy, and I use a motorized wheelchair. So I am privileged enough to skip the lines at amusement parks, airports, and other places. For a while, most of my life, I thought nothing of it. After this recent scandal, I got to thinking. Was Carlos Mencia, right? Carlos is a Mexican American Comedian who makes fun of every individual shamelessly for those who don't know. I am a huge, standup comedy fan. People sometimes tell me I should be a sit-down comedian.

I try, but my speech issues often get in the way. I still make people laugh hysterically with my lobster jokes, etc. Anyway, back to my point. In one of Mencia’s bits (please see the link http://www.youtube.com/watch?v=jQawDUmcdCQ it is hilarious and politically incorrect but it is fantastic, listen to the disabled kids' response to him), he comments about being behind a handicapped individual as he called them, and thinking to himself but not having the guts to say, why do handicapped people get to skip the lines? He was specifically referring to those who were in motorized wheelchairs or scooters. He did not have any beef with those on sticks or crutches. I thought it was hilarious at the time. I laughed my ass off, and people around me didn’t understand why. Let me explain.

Mencia may have a point. Just because we are disabled, do we deserve special treatment? I mean, to be honest, we are sitting on a chair. Our feet do not hurt from standing in line for hours. Do you know who should get to skip the lines? The 80-year-old grandparents with their grandchildren who can barely stand but do it anyway. Not I who has never stood without help a day in my life. Because oh my goodness, what if my finger gets tired from sitting in a 45-minute line? Now some may argue that they are doing it to make it easier for our caregivers and us. To this point, it might be easier to give caregivers more space on and off rides, but what does this have to do with skipping ahead of the 45 other people that paid the same price I did to get in? This principle can also be seen in other places. 

Just the other day at Wal-Mart, I saw an individual, no lie, steal one of those in-store scooters because they did not feel like walking. To put it politely, this person was significantly overweight. I know they were not disabled because I followed them and watched them get out of the scooter to reach on the top shelf to grab a large container of...wait for it...wait for it...OREOS! ...OREOS! This situation got me thinking also. No one ever calls disabled people out on anything because they are afraid to offend them. Like we are some fragile human being that cannot be told off or corrected. Our non-disabled people, and this is an honest question, so afraid of our difference that they fear being shunned by the rest of their peers if they call us out? For being obnoxious or inappropriate behavior? Let me give you an example. I go to college, as I’ve said before, with a large population of disabled people. A majority of these disabled people do not walk around with chips on their shoulders. However, a large portion does and walk around as if they own the university. They will run non-disabled people off the sidewalk. It’s probably happened to you, and none of the non-disabled people say anything to the disabled person. They can be heard muttering to their friends, though. 

What do all these examples have in common? Disabled people come in two varieties, so I’ve found it. Those individuals that are okay with their individuals and those who are bitter about them and use their disabilities to their advantage, i.e., they will skip the line in Disney World. Still, they will complain if not treated equally in the next minute. If we want to be treated equally and taken seriously as a group, we cannot pick and choose what areas of life we are treated equally. You may see skipping the line at Disney World not as a big issue but in places like this that we forcibly set ourselves apart from others. Either we want to step in line with the rest of society or have no problem outside the community, along with having our impressive entrance to the ride. We can’t have it both ways. It is almost like we cannot reach exceptionally far, but it’s almost like we enjoy the special seating we get in life. If you ask any minority, who has fought for equal rights, they will all tell you they never want special seating. They fought t sit among everyone else. Not apart from them.



Footnotes: 
1.) http://b1027.com/wealthy-hiring-disabled-to-cut-lines-at-disney/

2.) http://www.huffingtonpost.com/2013/05/14/skipping-lines-at-disney_n_3275836.html

Supposed Hero: Not Really, I’m Just Rolling with the Punches--Literally Rolling

So this blog will have no footnotes, no scholarly research. It comes about as a result of the conversation I had today. While enjoying the sunny weather, let me first say that even in Edinboro, Pennsylvania, sunny days are rare in the summer. It is nearly the latter half of May, and we just had snow a couple of weeks ago. So when it is sunny out, I must take the opportunity to enjoy the weather. I was doing so earlier today when a not very unique occurrence happened. 

I met this gentleman named Dan. He was fishing for bluegill in a very muddy Edinboro lake. He was overall a nice gentleman, and we chatted about the outdoors and hunting, feeling in particular. Then we got more into detail about what people do. He asked me where I live, and I told him that I live in an apartment building right up to the street. He then asked me if I was from the area. I responded with, “Hell no! I hate cold weather! I’m originally from Florida but grew up in North Carolina and Maryland.” As most do when I respond that way to that particular question, he gave the following reply, “Then what brings you up here?” I said, “School.” We then discussed how the Edinboro University of Pennsylvania is one of two schools left in the country that provides personal care 24/7 in some capacity. I explained that I don’t use personal care services anymore because I live off-campus, but they help. 

Dan then asked me what I was going to school for. When I told him that I was getting my Master’s Degree, he started a familiar path. He said, “You are so great for what you’ve gone through” compliment. I know that this is not meant to be patronizing and that many non-disabled people could not imagine being in a disabled person’s shoes, but it gets frustrating after a while. For those who are not understanding, I am not downplaying what I’ve done or achieved. I am merely downplaying the role that my disability has played in it. To put it another way, people compliment persons with disabilities for everyday acts like they have done something extraordinary. That would be the same as me going up to a person and approving every time they tied their shoes properly, which some of my friends still have trouble with. 

The compliment is well-intended, but the able-bodied community does not realize that most disabled people do not see disabilities as a disability. They see it as a label that they must overcome. There are hundreds, perhaps even thousands of disabled people that can contribute to society. Fewer are given a chance. Those of us who are granted the equal great opportunity wanted to be that--an equal opportunity. Our accomplishments are made no more significant by the fact that we have a disability. People who may read this may disagree. They might say that I or persons in my situation have greater obstacles to work over everyday pieces. Is my argument, don’t we all? In this case, a basketball player friend of mine will call Lucy an outstanding basketball player. She has just received a contract to play overseas. Which I am very proud of her for. However, many pressure and no varieties put on this individual because she’s tall and overcame cancer. This individual, who is a great person, does not see her overcoming cancer as something special. She sees it as a blessing, and it has given her perspective and has it be her obstacle. It is no different than the single mom going to school with four kids who work for me as an attendant. She has barriers, as well. However, when you are disabled, they no longer become obstacles. They are significant hurdles. My ability to overcome them is no different than my friend Lucy’s or my friend, who works for me. Those of us who are given obstacles in life is given them because we are strong enough to overcome them, and we are meant to overcome them because we are told to test ourselves. Perhaps for something more significant and not to be praised as if we are better than everyone else. 

My point in closing is that everyone has obstacles, whether financially, physically, mentally, spiritually, or other types of hardships. I hope this blog does not sound arrogant or ungrateful because that is my not intention at all. It is merely to show that just because disabled people’s obstacles are sometimes visible, it does not make them any greater or less than anyone else’s obstacles. Blocks are put in place to make us who we are meant to be and not make us stand out as something extraordinary. If we do, that should be by our own doing and not by an obstacle put in front of us. We have no control over.