I've been thinking about autism a lot lately, mainly because in the last few months I finally decided to give seeking an official diagnosis one last chance. It was a highly emotional process, one that alternately drained me and made me hyper for weeks, but I did finally receive a diagnosis of an autism spectrum disorder. Since receiving that report (which made me laugh in several places because these supposed oddities have been a normal part of my life forever), I've been trying to figure out what happens now. I have a paper to prove I'm autistic, but what do I do with it? Shove it in a drawer and move on? Frame it and hang it on the wall as evidence of my lifelong struggle to get an official diagnosis?
Within the last couple of weeks, I decided to put that diagnosis to good use. Up to now, I've never had any kind of credibility to write about autism or write autistic characters. I don't have any kind of degree, I don't work with people on the spectrum all the time, and even though I was self-diagnosed (and had several people agree with that self-diagnosis) that didn't prove to anyone that I know what I'm talking about. Thanks to that official diagnosis, I now have the confidence to speak out about a topic that my family is probably sick of hearing me talk about: curing autism.
Warning! The remainder of this post is likely to anger some people. I apologize if you're offended. Curing autism is a controversial topic with people on both sides of the issue feeling strongly about it. My views are not what the media tend to focus on, but they are shared by many other autistics. Feel free to comment at the end of the post whether you agree or disagree, but please keep your comments clean. Foul language or personal attacks will make me seriously consider deleting the comment.
Okay, back to the post.
As I've said, I am autistic. Autism is not a disease, scourge, or even a terrible tragedy in a lot of cases. Autism is a different way of life. Personally, I don't want to be "cured" of autism, mainly because there's nothing to cure. Autism is a huge part of who I am, what makes me...well, me. A lot of autistics feel the same way, including those who are high-functioning and live independently and those who are non-verbal and need someone to help with basic needs. We are not miserable because of autism. Actually, I find autism fun a lot of times because it allows me to see things in ways neurotypicals likely don't.
Note I said "neurotypical" and not "normal." Honestly, I detest comparisons between autistics and "normal" people, becuase it implies there's something wrong with me. There's nothing wrong with me; I'm not broken or in need of a cure. I'm different, plain and simple. Diversity is a great thing. It makes the world the exciting, interesting place it is. It's also the way God designed it. Diversity in race, religion, creed, etc. is widely accepted and encouraged. Now the world needs to focus on and accept neurodiversity. My favorite way of describing autism is that my brain is wired funny. That's really the only logical way I can describe a neurological difference, which is all autism is.
All of this explains why I get annoyed when people call for a cure for autism. The majority of those people are neurotypicals. Many of them have children on the spectrum or know someone who does. But I have to wonder how many of them have actually communicated with their child, either verbally or through some other means like a computer or sign language. Many autistics have spoken out, through writing and verbally, against curing autism. I have to agree with those who equate curing autism with a death sentence for autistics. The best way I can explain it is to offer an example.
As I've said, autism is a way of life and a huge part of who I am. Curing autism, taking it away, would turn my world upside down. It would be like "curing" a neurotypical of having a sense of humor or a left-handed person of being left-handed. It doesn't make much sense, does it? So why do people persist in calling for an autism cure?
I can understand wanting to teach autistics how to cope better in the world and helping them live as independently as possible. I'm all for it. But that doesn't "cure" autism. It just teaches them life skills...the same as every other child has to learn. The big issue here is acceptance. Do you accept autistics and all their differences or do you pity us for something the majority of us embrace?
This leads me to the "charitable" organization Autism Speaks. Let me say right here, Autism Speaks does NOT speak for me or any other autistic. Their literature, commercials, PSAs, etc. make it clear they don't support autistics. They call for getting rid of autism, blame autism for marital problems, and basically imply that autism is a scourge on society. It gives me chills just thinking about the way they make it clear they hate autism. They don't appear to like autistics much better. Watch the PSA they put out not long ago titled "I am Autism" and try to view it from the persepctive of an autistic, someone who views autism as inseparable from their identity. I think you'll understand why that video made me cry and want to put a stop to the hate this organization is spreading. For another perspective on the "I am Autism" PSA, check out this video (also called "I am Autism"). There area remarkably few edits to the Autism Speaks script, which makes the Autism Speaks message all the more chilling.
Last year, Autism Speaks recieved more than sixty-five million dollars. The president of this supposedly charitable organization was paid over four hundred thousand dollars. The chief science officer was paid over half a million dollars. Those are ridiculous salaries for people working for a non-profit organization. Half a million dollars is definitely profitable. For a simple break down of where the 2008 money went, check out this video. If you prefer looking at detailed tax forms, here's one on the Autism Speaks website.
As far as I can tell, very few actual autistics are helped by Autism Speaks or involved in running it. In fact, the organization was asked why there aren't any autistics on the board. The response? Autism Speaks feels it would be "inappropriate" to have anyone on the spectrum helping run the organization.
How on earth is an autistic helping run an organization called Autism Speaks "inappropriate"?
This organization has also been known to sue or threaten to sue autistics who speak out against them or parody anything they produce. The saddest example of this I've come across to date is a 14-year-old girl on the spectrum who created a site called NT Speaks. It was a parody of the Autism Speaks site, and therefore perfectly legal since parodies are protected by law, but Autism Speaks sent a letter to this girl threatening to sue her. This letter scared her so much she took her site down and destroyed the code behind it. Autism Speaks had no legal leg to stand on, since what she'd done was legal, but that didn't stop them from throwing their corporate weight around to scare a teenager.
It wouldn't surprise me if I get a letter threatening to sue me for libel because of this post, but I feel it necessary to warn anyone who wants to help autistics that the autistic community is not helped by Autism Speaks. As a member of the autistic community, I actually feel rather threatened by this huge, frightening organization that claims to be speaking for us while doing us a great disservice by perpetuating myths about autsim.
There are a great many autistics writing about their experiences, opinions, etc. all over the internet. If you want a true view of autism from people who live it every single day of their lives, I'd recommend checking out Autistics.org, Aspies for Freedom, the Autism Self Advocacy Network, or any of the myriad blogs and personal websites maintained by autistics. Be warned, you may not like what you find, but you can be assured they're the true views and opinions of real autistics.
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8 comments:
Okay, I admit I am ignorant of this. Yes, I've heard of Autism. But what IS it, EXACTLY?
Like, when you say your brain is wired funny....how?
Thanks for this. You may also like to read
http://www.aspergerjourneys.com/
by a woman who was diagnosed with Asperger's in adulthood.
I am also very fond of Asperger's Square 8, by Bev
http://aspergersquare8.blogspot.com/
She has videos and cartoons that illustrate her thinking.
Miss Mae, in addition to the two blogs above, -- check out "Born on a Blue Day" by Daniel Tammett and "Look Me in the Eye" by John Elder Robinson. Review here
http://www.psychologytoday.com/blog/aspergers-diary/200807/look-me-in-the-eye-my-life-aspergers
Thank you for writing this piece. This is a viewpoint I had not heard before. I'd love to hear more about what it is that makes you "non-neurotypical" and how you feel you are different from neurotypicals (love that word!) and also how that has been a positive in your life. Just one more question - Autism is considered a disability. Do you think that label should be discontinued? Used only for for people with autism that function below a certain level, or something else?
Hi E.A.: I've read your blog with interest. It has enlightened me. Occasionally I run with a boy who is autistic when I go into the nearby city to run with the crowd. Once in a while his mother or grandmother asks me to see to it he makes it back to the starting point and they will tell him to stick with me if there are only a few runners that show. Well, I'm not uncomfortable at all doing that. He's a fast runner and I struggle to keep up. So, being acquainted with this boy my question is showing my ignorance. Is there degrees of autism? I apologize for not reading up on this and will depend on you to answer my simplistic questions. Also thank you for all your supportive comments on my writing. Larry
Miss Mae, the official definition of autism is that it's a spectrum of neurological disorders that affect social interaction and communication abilities. Clear as mud, right? LOL :)
Autism affects the way a person perceives the world. I'll give examples based on my own personal experiences. I have a lot of sensory issues. Most people love the feel of silk and think it's soft. I can't stand it because it feels sticky to me. The pizza sauce most people love because of the perfect blend of flavors tends to taste like straight oregano or rosemary to me. A lot of people on the autism spectrum have trouble in crowds because there is so much sensory input it's overwhelming. The scents of dozens of people, multiple conversations, movements and colors creating a confusing swirl of input is a great way to guarantee I'll shut down and essentially space out. Remove all the normal filters that allow you to focus on a single conversation and block out everything but what's important to your little section of the crowd, and you can imagine how overwhelming the massive amounts of information coming in can be.
When I look at a scene, like a painting, I tend to see the brush strokes, the small spot in the corner that the artist missed, etc. The things most people ignore or don't notice are the things that tend to stand out to me. I'm very detail-oriented and the smallest inconsistencies or inaccuracies can drive me nuts. Other times I can get so focused on the little things that I miss the bigger picture, like the hidden picture puzzles. I have yet to see the hidden picture in all of those little designs.
I also have communication issues. I'm capable of speech and do talk most of the time, but the words may come out in an odd order or I'll say the wrong word for what I actually mean. Sometimes there's a long pause in the midst of a sentence because the words get stuck and I have to figure out how to say them. Just the other day, I became non-verbal for a while, typing out what I wanted to tell my mom because just trying to figure out what to say caused me to shut down. Obviously, I was having a bad day.
Each person on the autism spectrum has their own sensory issues and communication difficulties. Some can talk 'til the cows come home and never stumble over a single word, but they may miss the subtleties of facial expressions or other non-verbal communication. Some might love the feel of a fleece shirt but find the softest of wool something akin to sandpaper. The common saying is that when you've met one autistic, you've met one autistic. Each autistic is different, but all share some of the same "symptoms" of the disorder.
Here's a link to an article that explains what autism is and describes some of the signs: http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=211
Liz, thanks for the links! These look like a couple of sites I'll be visiting more often. :)
Kara, I fell in love with the term "neurotypical" the first time I saw it. As for what makes me different from NTs, I gave a few examples in my response to Miss Mae above. As for feeling different, that's hard to explain. Aside from knowing I don't always perceive things the same way as everyone else, I've always known I was different. I never felt like I fit in anywhere, no matter the group, even though I had several friends. I can't count the number of times my friends had to explain jokes to me because I didn't get them even when everyone else was laughing. I still have trouble getting jokes, but I've learned that my brand of humor doesn't always fit with what everyone else thinks is funny.
As for positives, I can look at a problem and see a solution that might not occur to an NT, which comes in handy during the "what if" phase of writing a new story. I've come up with some pretty wacky (but good) plots that way! I've also developed a lot of compassion for people over the years, thanks to being an "outsider" my entire life. I also have trouble lying, which is a good thing that sometimes gets me into trouble. If you ask my opinion of something, you're likely to get my true opinion whether it's favorable or not. Tact is not always around when I need it. LOL :)
You asked about using "disability" in relation to autism. Some autistics are disabled in terms of normal society. I'm one of them, but it doesn't bother me unless people dwell on the disability aspect rather than my abilities. Now, I'm not as severely affected by autism as some, but it does affect every area of my life. It's a part of who I am. Do I consider myself disabled? Not really. I'm differently abled, something I'm sure a lot of autistics would say (and have said) about themselves. As you can tell "disability" is one of those terms that's subjective, depending on who you ask.
Hey, Larry, I'm glad to answer your questions! As for them being simplistic, I've been known to ask some of the most simplistic questions around, so don't worry about it. Asking questions is one of the best ways to learn anything.
There are varying degrees of autism from low functioning to high functioning. I feel like I ought to say more here, but I honestly don't know what to add. If you have any other questions, feel free to ask them here or send me an email.
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