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Category Archives: “Fixing” Autism

Autism

retrieved from saypeople.com via google (no association at all)

 

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Letter of Reflection

Dear Students of University of Michigan,

My name is Alexandria Spicer-McQueen and I am a fellow student here at the university. During Fall 2011 semester I enrolled in English 416: topics in disability cultures autism, culture, & representation, and in this class I learned so much about Autism Spectrum Disorder to say the least. We learned many different things from terministic screens to “curing” autism. Through this class I learned more about how everyone in this world is different, whether white or black “normal” or not “normal,” whether you are able-bodied or not, whatever the case is people are different and that shouldn’t be an excuse to ridicule, dislike someone or even treat them different.

The different things I learned about this disorder were fascinating. A lot of people are misinformed about autism and this class opened my eyes and see that I was one of those people that knew nothing about autism besides that it was a disorder that affected the brains of children and prevented them from learning and communicating. Boy was I wrong. I’ve learned that even if a child has autism doesn’t mean they’re mute to the world, and it doesn’t mean that they will never learn or communicate. I didn’t know this at all. Another thing I learned to pay attention to during this class was that children grow up. I never thought about adults with autism and now I do because my friend’s little brother has PDD-NOS (Pervasive Developmental Disorder—Not Otherwise Specified), and I’ve always been curious about his disorder and how it will affect him when he grows older. The questions I have no answer to many people don’t as well and this class made me want to know more because I don’t think a lot of people like the unknown.

The final project for this class was to make a PSA and I chose to focus my PSA towards the student body because as college students there is so much that we do everyday we don’t really get to do anything outside of class work in the context of learning about new things own our own leisure. So I made up a student group named after my business and WordPress blog Black Circus, and made some events up to inform and educate students on Autism Spectrum Disorder. My goals for this sort of PSA is to get students to become involved in the cause and be aware of the things in this world because no one knows if their future child or children will have autism, so this is a way to become prepared to face that chance.

The one thing I learned about autism while doing my PSA was how easy it is to put together something like this and share it. All one has to do is put it out there and be committed and with my PSA I bring different options of learning about autism that I feel is very affective. I bring forth two informationals and movie nights and an interactive learning trip with a school for autistic students. All these events bring forth something different so my audience can participate and stay active and smile the whole way through these events.

Thank you for listening to what I had to say and I encourage you to come to these events and become aware of autism.

 

Sincerely,

Alexandria

 

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Blog Carnival: Adults Gone Missing?

Theme: Adults on the Autism Spectrum: Where Art Thou? Are They Not As Important?

Blog 1:  

The autistic community tends to forget the adult aspect of the issue.  With so many advancements in technology, people tend to forget that they can help adults as well as children.  Yes, children are the focal point of today’s autism argument, but adults are in need and could benefit from this technology.

 

Blog #2:

Resources and knowledge is lacking when it comes to autistic adults.  Often times there are not many options when it comes to this often forgotten group.  It’s hard to help and properly care for these people when people don’t know how to.

 

Blog #3: 

Adults with autism often have a limited voice in today’s media.  This is due to the lack of knowledge and ignorance on how to approach the issue.  Often “experts” try to take the helm, but fall short since they more than likely don’t have the first hand experience.  If autistic adults are ever to be helped, then it is up to everyone to allow them to participate in discussions concerning them.

 

Blog #4:

Adults with disabilities remind those without disability. It reminds people that life is unpredictable and that anything can happen to anyone anytime at any place. Life can be cruel and this can tie into the fact that adults with autism are getting the end of the stick when it comes tom services and funding. Thankfully some parents think of the long term plan for their children and plan accordingly and supporting foundations that remember the adult diagnosed on the ASD.

Blog #5: 

The population of autistic adults is steadily growing.  It is up to the community at large to come up with proactive ways to help everyone cope with the various issues associated with this population. Committees and family involvement are two primary methods of helping. Whether it’s having meetings with everyone in the area, or tackling the issue head on, raising awareness is key to the success of individuals being able to accept and potentially remedy these issues

Blog #6:

 Guest post on Aspie Teacher’s blog by Michael Drejer talks about being employed and having Asperger’s syndrome. He explains how it is possible to get a job, and the pro’s and con’s that comes with it for the one with Asperger’s and for the companies that hire these disabled persons. He reminds people with autism that just because you may be disabled does not mean that you cannot have a job. Take advantaged of it and do what you can to live a great and successful life.

Blog #7:

Like the previous blog this blog talks about working and having autism. Tracey Daigneau, M.Ed., Director of Day Services at New England Village talks about how New England Village has created True Meaning Jewelry which promotes autism awareness as well as employs autistic individuals as well. This line of work gives these special individuals pride in what they do as well as who they are.

Blog #8: 

With taking care of autistic adult come a lot of hard times and well as easy times. Here a woman takes us through a day of her changing world when taking care of her 23 year son who is autistic.

Blog #9: 

 Another aspect that can be covered with respect to the issue of autistic adults is the factor of gender.  There is a tendency to pay closer attention to the needs of males over those of females.  Females with AS are atypical in their interactions than “normal” females especially in regards to the ages and genders that they typically interact with.  Seeing articles with an accurate portrayal of female autistic people are rare.

 

Blog #10: 

Jason Ross creator of Drive Mom Crazy writes about how he first coped with being diagnosed with autism and how he had to get into the community with a encouraging push from his mom. He talks about his life with autism and the many things he was able and still is achieving being diagnosed with Asperger’s.

Every last word used is IMPORTANT!

 

“Awe-inspiring Mysteries” and the “Cure”

When it comes to the cure I think much like Michael John Carley in his article “Articles of Understanding: GRASP, and the word “Cure.” Sure “curing” autism may be a good thing but in whose eyes? When I think of “cure,” I think of parents working hard, maybe even a little too hard on “fixing” their child that they forget to focus all the energy and time into their child. What’s even more interesting in this article is the debate on what words should be used in the culture of autism. The culture of autism, in my opinion, has a little bit more important than the medical culture because it’s outside the hospitals and the doctor’s that autism really takes its part in the world. It’s a culture and it’s sensitive just like any other culture; it’s a world inside a world, if you understand what I’m saying. In class my professor was telling us the difference between words and how if the first letter is capitalized or not really makes a big difference. It’s like race and like sexuality, people have to be careful not to offend someone by using derogatory words so asking before you assume is always a good idea. Carley states, “And GRASP feels that it is these individuals who should be dictating what words are used to describe them—not the doctors and researchers. Even if we at GRASP are completely wrong as to the medical accuracy of such words, do Caucasian people get to tell African- Americans what words should and should not offend them? Should Latino women get to tell Asian men what they have a right to get upset about? Words hurt. And almost every one of our folks admits feeling unwanted to some degree when a well-meaning person tells them they hope there’s eventually a cure for what they have.” (10) It’s really the individual that decides what they prefer to be addressed as. All these things play a big role in this culture, and if us outsiders (those not affected by autism) want to understand this world completely we have to take account for these things.

He is "normal." He has his own world just like you and I. He is "normal."

“I won’t profess to you, as someone with AS, that I clearly know what’s going on inside the head of what might be your non-verbal daughter or son sitting there in their own world. But I do feel there’s more going on inside that head than we, myself included, usually give their credit for being. We just don’t see it, so it’s hard to believe. Furthermore it’s not on a level we understand (yet), and because we love them, this hurts. Obviously, we want to bond with those we love, not think of them as, at best, awe-inspiring mysteries.” (Carley 4) With parents being so engrossed in finding a cure they forget or may not realize that though their child has autism, their child may be happy in their own world. But because, in the case of a non-verbal child, there is no communication so how can they know? It’s hard to think of someone you love not being able to communicate and experience things the “normal” way so of course some parents will do anything to fight autism and find this “cure.”

This passage made me think of society today and not just in the United States. There is a long history that continues today; that what we do not understand something we persecute it. Not necessarily that parents are persecuting their children but I think of it as when someone is so blinded by something they do not understand something that they take things into their own hands. In the case of the “cure,” priorities may become jumbled and things that should be most important (the one affected by autism) lose its place in line. I would also have to agree that finding a “cure” could not be labeled as disability studies because when I think of disability studies I think of focusing on the disability, how it works and who is affected by it, etc. When I think of “cure” I think of focusing solely on “fixing” the probablem. I don’t think of getting to know the disability like it was your best friend. “Cure” isn’t your best friend, it’s more like your mom, dad or doctor.

This leads me to the video “Fixing Autism.” I believe this video says a lot and is very powerful. The creator doesn’t really want to “fix” his daughter and it’s clear that many will not understand that because they cannot see in between the lines, which I think is so important to understanding this culture of autism. However, I think of this video as a PSA that should be instilled in everyone’s mind whether affected by autism or not. It’s very informational and the simple creativity the creator used was amazing! It made me want to share it like my professor shared it with our class.

We had a blog post to read called “Defining Curebie-ism” and it was an interesting read. It is very controversial, and when I read some of the comments, I really couldn’t finish because it is just that controversial. What I did learn though is that a “curebie” is defined as:

“a fanatical desperation to destroy a child’s autistic traits in their entirety. Autism takes on a separate and distinct identity in the curebie mind; it is personified as a demonic foe that must be defeated at all costs. The child ceases to be seen as a sentient person and instead is treated as if he were a battleground for a cosmic struggle between good and evil. Jonathan Shestack, co-founder and president of Cure Autism Now, exemplified this mindset when he wrote that autism parents do not have a child but “a shell, a ghost of all the dreams and hopes you ever had.”

This alone is enough to see the emotions and anger that can spark in this world of autism because it is a sensitive thing to people. As for me I don’t really have an opinion on this article besides, “Wow!” That’s really all my feelings summed in one word. It’s a very bold and blunt opinionated blog post. You have to read and decide for yourself really how you feel about it and what is your take on it as well.