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glider18
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15 Feb 2010, 6:12 pm

Over a year ago while waiting for my next gifted class to arrive, I began browsing through some of the online educational videos our school subscribes to. I found one that offered a look into the lives of four children with what was called "childhood behaviorial" issues. I watched the ADHD boy as a psychiatrist analyzed him fighting his way through homework, a girl with an "attachment to home" issue that made her fear leaving her home, a boy with Conduct Disorder who had stolen cars when he was in grade school, and an autistic boy. The autistic boy---clearly Kanner's Autism---oh sorry, that label is gone now, let's say severe autism. You know the type---worthless---no hope---no future---stupid (Hey!, that's not my opinion, that's the world's opinion). He was in his teens and had never spoken a word. All he did was jump up and down on the couch, grab for his mother, flap his hands often, and move his head so much that you would swear it would fall off. He was gone---you know "not at home" so to speak. That brain must be empty of anything worthwhile (again, not my opinion, but the world's opinion). He was so far gone he couldn't even read. Put a book in front of him and its thrown across the room. Try to read to him, and he wasn't even listening---you know, nothing going on in that brain. What a nightmare.

One day, his mother happened to have her computer keyboard on the couch where he was sitting and hopping around. He grabbed the keyboard and began typing. His mother expected to look at the monitor and see something like " hwelktn hgv;ketjo hgljg ke," but instead, you know what she saw? Intelligible typing---accurately spelled and in complete sentences. He talked to his mother for the first time---by a keyboard. When no one thought there was any learning going on in him, he had understood language for many years. But he had not been given the opportunity to talk in a way that he could talk. One must imagine what conversations had gone on around him all these years when no one thought he understood. He probably heard some terrible insulting type of comments about his severe mental state. Had it not been for the incident with the keyboard, where would he be now? But now his future is changed because of adaptation. He isn't worthless, he has hope, he has a future, he isn't stupid---in fact he is quite smart. He just needed a way to be understood by the world in a diverse way---a different way.

There are many stories similar to this one. It is far from unique. The reality is the world fails to understand what is considered different than the norm. Anything different is considered defective. But what is the norm? In our human world it is the largest group of human beings as distinguished by psychological type. And strangely, this group we call the "norm" is not as big a percentage as we think. In fact, at least one in three people on this earth has a mental condition that can be diagnosed as a disorder. Within that multitude of disorders we find autism, one of the most mysterious and least understood of the conditions. With a prevalence of approximately one in a hundred (there are of course varying estimates here), the autism spectrum should be more understood than it is. But who cares? Well I care, and you should care, but does the world care?

The world believes that if someone doesn't fit the norm, then he/she must be defective. That is arrogance. The world believes that if someone doesn't fit the norm, then he/she should be corrected in order to be made more like the norm. That is arrogance. The world believes that if someone cannot be made more like the norm, then he/she has little, if any, contributions to make to the world. That is arrogance. Or should I say---ignorance.

I have read numerous posts on the WrongPlanet talking about prenatal testing to determine if one's child will be autistic. The suggestions indicate that parents may choose to abort such a pregnancy since the child is going to be born with something that many consider undesirable. Doesn't this sound ridiculous? We had better keep an eye out on the world---isn't this where the world is heading? Is it the wish of the world to rid itself of autism either by abortions or so-called cures?

What if the world finds a way to cure autism? Is the world so arrogant to think that it would be better off without those of us that are autistic? Is it arrogant for the world to interfere with us with autism and try to become our voice? We have a voice and we need to use it. We have rights. We are not stupid. We need to have confidence in ourselves and contribute to the world in a positive manner.

We have two distinct groups of us here at the WrongPlanet---those who don't want a cure (including myself), and those who would take a cure. Even though I am anti-cure, I cannot say that those of you who want a cure aren't entitled to one. I am anti-cure when it comes to myself---not you. But, I believe it is safe to say that most of us here at the WrongPlanet believe we have a voice and that we are more than capable of using it. And I also believe most of us believe we don't need anyone else speaking for us---especially if they quiet our voices in the process.

Let us think about what autism is. Sure, I can see issues and challenges---I mean we live in a world that operates under the norm of NTs. But we are not a disease. A disease is something like a common cold. Are there any benefits to coughing, sneezing, a running nose, and having a fever? Not really. Take a look at other conditions---are there benefits? Now look at autism (and there are other conditions too). Are there benefits? Well...autism can cause us to become experts in interest areas. And we can apply those interests to benefit the world. We often pay attention to small details which can benefit the world. There have been plenty of contributions to the world as a result of our autistic brains. Because of our potential to contribute positively to the world, I see us as a difference with challenges rather than a disorder. And for that reason, autism should be accepted and not considered for annihilation. To annihilate autism for the sake of hoping to make the world more like the norm is arrogance and ignorance.

Remember that we with autism are an important part of the world. We are part of a diveristy that is required for the world to be successful. And even though we have challenges, let us remember that all people have challenges. What is a strength for the norm may be a challenge for us, and what is a strength for us might be a challenge for the norm. We need to work together so that all or our strengths can benefit the world.


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Callista
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15 Feb 2010, 6:24 pm

The assumption that someone who cannot speak cannot learn to read just doesn't apply when it comes to autism. I wish more teachers realized that. Written words helped me understand language; and apparently they helped the teenager in your video; who knows how many other people could've benefited, who were written off as not being able to learn? This kid managed it on his own--how many more would have learned to read if they'd been given lessons? How very short-sighted to assume "can't" and not even try teaching.

However... autism should not be justified by the "benefits". Autism isn't a disease because it isn't a departure from the homeostasis of the human body; but it is a disability. Denying the disability associated with autism, or trying to distance yourself from it by saying you have skills x, y, and z is simply an instance of anti-disability prejudice. We don't have to justify our existence by saying autism has benefits. That it does should be immaterial. Quite simply, we have the right not to be mistreated; we have the right to decent education; we have the right to work jobs we can do; and we have the right not to have our brains tampered with for the benefit of those around us.


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Last edited by Callista on 15 Feb 2010, 6:28 pm, edited 2 times in total.

millie
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15 Feb 2010, 6:25 pm

It's pretty sad, Glider.
LAst night in my country on one of our best current affairs program, they ran a full hour on disabilities services in our country for individuals and families who require respite or live-in accommodation or a level of home support that requires more concentrated and stimulating care than can be offered by struggling and ageing parents and/or families.
Families, individuals and so many are being forgotten, let down and pained.

My sister rang me this morning in tears. Her HFA son is really dependent on her at present. She is amazing as a mother. And she is struggling. There are not enough services available to her. She needs someone to help here and there..to come in and clean or help her with some of the daily tasks that get put to one side because she is spending all her energy on looking after and helping her beautiful son.

The program last night compared the services available in Britain compared to those available in Australia. The British have passed through a lot of legislation that means the rights of carers and the rights of families and the rights of those with pronounced impairments are more fully addressed. I am not saying it is great in Britain. I do no know enough about it there. But apparently it is far better than Australia is at present. And what is happening in Australia is that government is adopting a more privatized approach, whereby individuals and families and charities are asked to foot the bill for services that in my view, should be paid for by government.

Yes, I am a supporter of the welfare state........



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15 Feb 2010, 6:29 pm

I think of how this applies to my daughter. She has Rett Syndrome, which has left her non verbal. She has no control of her hands, is wheelchair bound, must be fed, changed, and cared for in every way. She also has seizures.

Most people would think that she's not "there", but she is so very aware. I can see it in her eyes.

Recently, I found a blog written by someone with my daughter's condition. This woman retained enough control of her hands to type. These girls (It is a mutation in the x chromosome, so it primarily affects girls) feel trapped by their bodies. So many people would assume that my daughter is "profoundly retarded", but they have no way of testing. They just assume because they cannot test. With eye gaze, she has shown preferences, that she knows her colors, animals, family members, and many other things. It's not always reliable (she won't look when distressed), but to me, it's a very good indicator that my little girl is not what some "professionals" believe she is.

People are so arrogant to believe that because they aren't capable of measuring it, it must not exist.



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15 Feb 2010, 6:32 pm

You probably already know this, but there are communication systems that let someone use eye gaze to communicate; mostly low-tech stuff, but some high-tech. It works by having them look at whatever they mean to communicate. Have you talked to a speech therapist about teaching your daughter to use something like this? Even if she can only manage it sometimes, it'd be a benefit if it worked. Most likely it'd have to be simple to avoid choice-overload.


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glider18
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15 Feb 2010, 6:55 pm

Callista wrote:
...However... autism should not be justified by the "benefits". Autism isn't a disease because it isn't a departure from the homeostasis of the human body; but it is a disability. Denying the disability associated with autism, or trying to distance yourself from it by saying you have skills x, y, and z is simply an instance of anti-disability prejudice. We don't have to justify our existence by saying autism has benefits. That it does should be immaterial. Quite simply, we have the right not to be mistreated; we have the right to decent education; we have the right to work jobs we can do; and we have the right not to have our brains tampered with for the benefit of those around us.


I agree, that is a very good point. This is something I am learning about and struggle with. Autism is such a spectrum that it does truly seem handicapping with many. Not everyone appears to have interests/talents associated with autism.

Help me with how to deal with parents of these types of autistic children (or grown-ups for that matter) that come up to me and ask me what hope they have (in pertaining to autistic individuals without apparent interest/talents). I truly need help with this.


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millie
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15 Feb 2010, 7:05 pm

glider18 wrote:
Callista wrote:
...However... autism should not be justified by the "benefits". Autism isn't a disease because it isn't a departure from the homeostasis of the human body; but it is a disability. Denying the disability associated with autism, or trying to distance yourself from it by saying you have skills x, y, and z is simply an instance of anti-disability prejudice. We don't have to justify our existence by saying autism has benefits. That it does should be immaterial. Quite simply, we have the right not to be mistreated; we have the right to decent education; we have the right to work jobs we can do; and we have the right not to have our brains tampered with for the benefit of those around us.


I agree, that is a very good point. This is something I am learning about and struggle with. Autism is such a spectrum that it does truly seem handicapping with many. Not everyone appears to have interests/talents associated with autism.

Help me with how to deal with parents of these types of autistic children (or grown-ups for that matter) that come up to me and ask me what hope they have (in pertaining to autistic individuals without apparent interest/talents). I truly need help with this.


I also agree with this. I live every day with a disability and because I am hyper-verbal, that disability was overlooked and misunderstood and not comprehended fully for 45 years of my life. Some are far, far more disabled than I am and struggle far more. I cannot work with people, I have a history of self-harm that is no longer a problem (thank GOD,) and I need at least 6 hours a day at home in my own environment and with my own routines ON MY OWN WITH NO-ONE BUT ANIMALS, in order to maintain a level of internal peace others actually can take for granted.

I can't make sweeping judgements about how it is for someone else who may be more severely impaired by their ASD than I am.
I like to try to stay positive and ALSO respect the different experiences each of us have, and some feel downright debilitated and pained by their ASD to a crippling degree, as do their families and their loved ones.



glider18
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15 Feb 2010, 7:23 pm

I understand where you are coming from Millie---especially with the needing of time on your own. If I don't get my time, I get really upset. My alone time (what I sometimes call "recharging time") is often spent at the Hammond organ, on my HO scale models, or upstairs working on my novel project on the computer. I just have to have time alone. I am glad your self-harm is no longer a problem---been there done that. Like you, I cannot understand what it is like for people with more severe ASDs. I really need help in addressing positives in the more severe.


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glider18
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15 Feb 2010, 7:30 pm

veiledexpressions wrote:
I think of how this applies to my daughter. She has Rett Syndrome, which has left her non verbal. She has no control of her hands, is wheelchair bound, must be fed, changed, and cared for in every way. She also has seizures.
Most people would think that she's not "there", but she is so very aware. I can see it in her eyes.


I am sure she is very aware too. Rett Syndrome is an ASD that I am not too familiar with. You seem like a terrific parent---she is lucky to have you.


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15 Feb 2010, 8:35 pm

re. severe autism: You could always refer them to the people with severe autism you meet online. Granted, by default these people can communicate in words; but there are plenty of parents taking care of such kids (including adult children) you could probably refer them to. Autism Hub has quite a few such parents.

The "s/he will never..." reasoning is very defeatist, and often incorrect. What about, "Can s/he be happy?" This is a question that can always be answered with a yes, regardless of ability; and really, isn't this what truly matters? If you can have a life that you enjoy, that you spend doing things that are interesting and rewarding, does it matter whether you can do everything all the other kids can do?

There is a lot of prejudice against people who "will never..." etc., but this is getting better; as they grow up they will be more and more accepted, in part due to the efforts of their parents and of older autistics, in part because of the greater disability rights movement gaining acceptance. Things will get better. People will be able to live with dignity even when they need aides.

I've never heard of an autistic person who didn't gain skills as they got older (except for those with physical problems like epilepsy holding them back; or those locked away and give no opportunity to learn--but then, institutions do that to anybody). As time goes on, given a good environment and decent teachers, autistics tend to pretty much astonish everyone around them by learning. (This will change as we learn to expect them to learn. Stupid stereotypes.) That includes even the kids who started out with the "will never..." stamped on their foreheads. Complete independence isn't guaranteed; increasing independence is.

The near-guarantee that kids learn as they grow--including autistic kids--combined with the increasing acceptance and inclusion of disabled people makes a much brighter future for today's autistic children than autistic people have ever had the chance to have before.


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15 Feb 2010, 8:39 pm

glider18 wrote:
I understand where you are coming from Millie---especially with the needing of time on your own. If I don't get my time, I get really upset. My alone time (what I sometimes call "recharging time") is often spent at the Hammond organ, on my HO scale models, or upstairs working on my novel project on the computer. I just have to have time alone. I am glad your self-harm is no longer a problem---been there done that. Like you, I cannot understand what it is like for people with more severe ASDs. I really need help in addressing positives in the more severe.


Instruments are great for recharging. I'm increasingly spending time with a bamboo flute I picked up in Okinawa. I played with my Dad's organ a lot when I was a child, and also messed around a bit with sax. I've always had an appreciation for music.


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15 Feb 2010, 9:26 pm

Thank you for the replies. I appreciate them.

ViperaAspis---bamboo flutes sound interesting. I find exotic instruments to be quite fascinating.

Callista---thank you very much, I believe these will provide excellent answers for when I am asked these challenging questions during my music ministry where I talk about autism---that is if you don't mind me using them.


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15 Feb 2010, 9:33 pm

Callista wrote:
The "s/he will never..." reasoning is very defeatist, and often incorrect. What about, "Can s/he be happy?" This is a question that can always be answered with a yes, regardless of ability; and really, isn't this what truly matters? If you can have a life that you enjoy, that you spend doing things that are interesting and rewarding, does it matter whether you can do everything all the other kids can do?


not to NTs, because it seems most of their world consists of doing what they're "supposed" to do, not what they really want to do. people want others to conform and be as miserable as they force themselves to be.



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15 Feb 2010, 9:55 pm

glider18 wrote:
The world believes that if someone doesn't fit the norm, then he/she must be defective. That is arrogance. The world believes that if someone doesn't fit the norm, then he/she should be corrected in order to be made more like the norm. That is arrogance. The world believes that if someone cannot be made more like the norm, then he/she has little, if any, contributions to make to the world. That is arrogance. Or should I say---ignorance.

-----

Let us think about what autism is. Sure, I can see issues and challenges---I mean we live in a world that operates under the norm of NTs. But we are not a disease. A disease is something like a common cold. Are there any benefits to coughing, sneezing, a running nose, and having a fever? Not really. Take a look at other conditions---are there benefits? Now look at autism (and there are other conditions too). Are there benefits? Well...autism can cause us to become experts in interest areas. And we can apply those interests to benefit the world. We often pay attention to small details which can benefit the world. There have been plenty of contributions to the world as a result of our autistic brains. Because of our potential to contribute positively to the world, I see us as a difference with challenges rather than a disorder. And for that reason, autism should be accepted and not considered for annihilation. To annihilate autism for the sake of hoping to make the world more like the norm is arrogance and ignorance.

Remember that we with autism are an important part of the world. We are part of a diveristy that is required for the world to be successful. And even though we have challenges, let us remember that all people have challenges. What is a strength for the norm may be a challenge for us, and what is a strength for us might be a challenge for the norm. We need to work together so that all or our strengths can benefit the world.


Reminds me a lot of Gattica, especially the bit about aborting a fetus because of known 'defects.'

I saw a flash animation on the subject of abortion and genetic engineering that I found quite moving.

This is it.


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16 Feb 2010, 3:34 pm

OP, I couldn't agree more with that. So so true. I just wish more people would realise it.

About the whole prenatal testing thing, I can't believe it's legal. They're basically saying that people who have conditions have no right to live... Like Hitler with the Jews. The stupid f'ing idiots calling themselves scientists that do this research are the ones who don't have a right to live.

After all, Bill Gates and Einstein have/had traits. We don't know if they certainly had anything on the spectrum, but we know they had traits, and we must not forget that a diagnosis is only based on traits; there's no autism brain test. Now imagine a world without Einstein and Bill Gates. Odds are you wouldn't be on this site right now, you might not even have a computer. Remember Gates made the OS for the first IBM computer.

And who do you think wrote the program you're viewing this site on? Someone with a logical mind who's good at computers, that's who. Like me, and many many others on the spectrum. Same goes for your phone, your Xbox, your TV, even the firmware on the chip that makes your digital clocks work.

BitTorrent, the world's biggest filesharing network, was created by Bram Cohen - an Aspie, too. The "filesharing is stealing" crap aside, it also has many legitimate uses and has made Bram Cohen a millionaire too.

We have an importance in the world. It's as simple as that. If you're gonna start wiping us out, you might as well do the same for all other minorities - it's just as bad.