Aspies For Freedom

I'm sorry, I spent the last 17 years being autistic. I was not aware I needed someone else to tell me of the enormous hardship I've apparently endured.

Imagine this. If I were to say "I wish my cousin was not Jewish" it would stun you. "I wish my friend was not black" "I wish they could be normal like me."
Stunning, isn't it. In a different way.

And how do you, someone who doesn't know how that feels like, think you should inform me, someone who does exhibit explosive frustration from time to time, about this. You really think you lecture me about that? Yes I have explosive bouts of frustration, but frankly, everyone else around me seems morally numb by comparison and I wouldn't want that either.

Those who wanted to get rid of jews or blacks or gays or whatever did so for relatively shallow reasons. Blacks look different, jews have different beliefs, and homosexuals behave different.
But all these people, and those who persecuted them had the same kinds of thought processes on a fundemntal level. In other words, tey could understand, not each others' viewpoints, but each others' method of thought.

Autistics on the other hand, have the most fundemental difference of any group ever labeled 'deviant' or 'defective' or whatever other unflattering label they were given.
We do not look different, we do ot have different beliefs, and while we act different, that is oly derrivative of the fact that we funementally think differetly from others.
Most can respect a asic difference such as skin color, religion, or sexual orietation/preference (whichever you believe in), but they expect all people to have certain similarities that are fundemental, comon to all.
In the case of autistics, this is ot true. We are different from others to the very core. The very methods by which we think and feel are different from NTs.

I haven't seen the video in question, but I'd be willing to bet that the majority of the pain felt by these mothers stems from the fact that they are expecting their children to think and feel in a way that's, well, neurotypical. When their children are incabable of doing that, the mother's try to teach them, but find themselves about as cabable of doing it as someone who tries to teach a duck to bark. Ducks can't bark, they're ducks, and nothing you can do will change that.
At the same time I also believe that the majority of these children's acting out and tantrumming (is that even a word?) is a reaction to those around them treating them as if they were just like ayone else, and reacting punitively when they discover otherwise.
Again I say, how would a duck react to being punished for quacking. It would probably quack louder and more obnoxiously, and it would become agressive.

NT's who expect us to think and to feel in the same mannar as them are often agast at the simple fact that we can't.
The general attitude is that, basic differences such as race, religion, creed, and sexual orientation are a fact of life, but at the most basic level, eveyone thinks the same way. This means that someone who thinks differently at a basic level must have some kind of disease. And a disease is something that must be corrected.

I propose an experiment.
Put an NT in an alien envyronment.
-Tell him that by his nature, all decisions should be made based on a linear cost/benefit/risk analysis
-Tell him that feelings, especially love, are maily expressed through actions explicitely affecting someone's life, and that verbal and physcal affetion is seccondary.
-Put a big spider on his arm and tell him the only thing he should be feeling is a kind of gleeful curiosity and wonder.
-Tell him that his feelings and his thoughts should not normally influence each other in any way unless he deliberately tries to make them.
-Find an NT attacked by a dog as a child and tell him he shouldn't be afraid of dogs because of that isolate incident.
-now... punish him when he doesn't do those things, and see what happens!
I bet he becomes emotionally unstable, agressive, and will act out in front of others in ludicrous ways. Just as an autistic does in the reverse of that situation.

So why can't the NT think the way I do!? And why does his behavior become so outlandish whenever I try to teach him!? He must have some kind of disease!!!

No, he is not diseased, he's just NT, and there's nothing I can do to change that. Consider the vice versa of that statement.

I got another one, tell him that he must read for at least an hour a day, on an extremely specific topic, for example, dictators of the antebellum period. He may not stray from that subject, nor may he read less then an hour a day. Change up the topic every seven years or so

Then are you employed by or involved with Autism Speaks in some other capacity?  Are you the parent of an autistic child?  It would seem fitting for you to share some information about yourself & your interest in this subject.

Reading this thread -- as well as other posts from aspies on this board, I find myself wondering if part of the problem here is a difference in perspective.    

Greenlion, I think it's impossible for NT like you and I to truly comprehend what it feels like to be autistic.   I understand "on paper" what it means to be autistic, but there is no way I will ever be able to truly see the world through the eyes of someone with any form of autism.  From our (NT) perspective, it's natural to see autism in terms of the problems that it brings.  

   If I understand correctly, most people on the autism spectrum would love to have a cure for their sensory sensitivities, most would like to be able to read facial expressions and body language as well as NT do, and most would welcome a pill that would instantly teach language and communication skills to children that are having trouble learning to speak.  If I understand correctly, however, many of the people on this board see these problems as co-morbid conditions, rather than central aspects of autism.  

   Someone correct me if I'm wrong here, but I believe that most aspies and other autistics see their autism as being a more central and fundamental part of who they are.   I think that most would still see themselves as autistic even if they suddenly gained skills in reading facial expressions and body language, suddenly lost all of their sensory sensitivities, and suddenly gained the skills necessary to more consistently interact successfully with other people.  

From our perspective, curing what they are calling co-morbids would almost amount to a cure for autism.   From their perspective, they would simply be autistics that would have lost some annoying limitations that go along with autism.  

Maybe the closest you and I can come to seeing things from their perspective is to imagine having a cure for whatever we are not good at.   I have a terrible memory, for example.  I would love to have a pill that would have no side effects and that would improve my memory.   In my eyes, I would still be me -- just a better version of me.   But, I would be afraid to take a pill that would completely change who I am -- even if said pill would turn me into someone that is great at everything that I am not good at.   I do, after all, have strengths that I am proud of.  

Similarly, I'm sure that most aspies are bothered by their limitations, but they are also (justifiably) proud of their skills.  

  I don't pretend to know what the right answer is, but I do know that everyone (whether NT or autistic) is entitled to respect and understanding.  All too often, autistics are treated with cruelty by NT that do not understand them and are not willing to accept that which they do not understand.  How confusing and strange must it be for them to then read that empathy and compassion are supposedly among our strengths?

If you're thinking about it this way, think about the burden that neurotypicality puts on society. How many valuable person-hours have been lost because people were chatting with each other instead of doing something productive? A lot, I'd bet.

But there are two sides to it.  Thinking that you might be that parent, it is understandable to think of them, but many of us were the kids.  A lot of us had people trying to force us to be normal, and in our case, those are the memories that bobbed to the surface.  That's just what's going to happen.  Throw in the bridge comment, and you've got a lot of anger and a lot of fear, and quite rightly.  We have already had autistics being murdered because they were seen as nothing but a burden.  We don't want any more.  

We all hear about the negatives of autism, almost constantly.  Because of this, there are people out there who say that our lives are not worth living, that to kill us in cold blood would be a mercy.  Is it any wonder that we focus on the positives, that we try and convince people our live ARE worth it?  There are enough people dwelling on their misfortunes already.  

And of course, the positives are never apparent from just sitting in a pew. How could they be?  Many times, people make assumptions about me, simply from the way I walk into a store and buy a bag of pretzels, and it strongly affects the way they treat me.  Some of them have been pitying, more of them simply mean.  They simply do not want someone like me walking around their store.  Afterall, I might by something.  

Is my presence an emotional burden for them?  It is entirely possible.  I walk awkwardly, hunched over, my elbows always bent.  I often mutter to myself when selecting merchandise, and to top it all off, I have long hair and an unshaven beard.  But why should this be such a burden to them?  These minor aspects of my physical appearance earn my a deep and lasting contempt, in spite of my gifts, my humor, and my freely giving personality.  

I deserve to be thought of better.  I deserve to be treated better.  Yes, some people feel genuinely bad when I am around.  You'll have to forgive me if I'm a little less sympathetic than I could be.  

We do not mean to belittle the difficulties, but it's so rare that the positives are acknowledged, what do you want from us?  Doom and gloom gets very tiring after a while.  

Talk is cheap--it's a basic fact of life.  If you cannot show your source, those inclined to disagree will question it.  Before you posted this, as far as we knew, your knowledge of autism came to you in a dream.  There is no authenticity contest, no "intense personal story" contest.  Our ideas about autism are shaped by our experience of autism--this isn't an attempt to subvert reality, it's plain obvious!  By contrast, you are trying to tell someone else about their experience.  I know exactly how much pain is in my life, thank you very much; I don't need someone else to tell me.

Amy,

   You sounded a little annoyed in your response to my post.   If I said anything to offend you, I am sorry.  I am trying to understand your position better, so here are a couple of questions.  

In this thread:

http://www.aspiesforfreedom.com/phpBB2/v...86&start=0

You wrote:

I interpreted this to mean that you consider language and communication problems to be "comorbid" conditions, and that you support speech therapy.   I would say that speech therapy is an attempt to "cure" language delays and other communication problems.  

Regarding sensory sensitivities:  In this case, I was referring to the fact that many autistics find certain sounds, sights, etc, to be very upsetting.   Just speaking for myself, if I found certain common sounds to be very upsetting to me, and a treatment were available that would have no effects other than eliminating the discomfort I experienced in the presence of those sounds, I would welcome it.  On the other hand, if ridding myself of my sensitivity to those sounds meant radically changing the person that I am, then I would not want it.  Is that how you feel about it?  

To put the question in a slightly different way:  Suppose you have an autistic child:  

1.  If your child is having great difficulty learning to speak and communicate, would you give him good language skills if you could?

2.  If your child has so many food sensitivities that it is difficult to give him a healthy diet (because he will only eat a small number of foods), would you change some of those sensitivities if you could?  

3.  If your child found the sound of an automobile (or some other common sound if this is not a good example) to be so upsetting that he screams and cries when he hears one, would you want to do something so that he would not find these sounds to be upsetting?  

4.  If your teenage son was depressed because he felt socially isolated, and you had the opportunity to teach him social skills that would enable him to make friends and get along with others well enough to be successful at a job, would you do it?  

To put it another way, what I am trying to learn in this thread is this: What traits, exactly, do you consider to be comorbid conditions that should be treated, and what do you consider to be things that you wouldn't change because you consider them to be core aspects of who you are?  

I am also curious about how you feel about "forcing" therapy (speech therapy for example) on young children.   All parents force their children to learn things that they may not care about.   We do it because we realize that young children (NT or autistic) do not yet know enough about the world to make wise choices for themselves.  So, do you agree with the practice of forcing a three year old to go to speech therapy?  Is that, in principle, any different from forcing children to go to school?

I'm not sure if you meant that to reply to me or to Greenlion.   In case you were responding to me, I just want to clarify one thing:

I do not consider autistics to be defective.  If I thought you were defective, I wouldn't bother asking your opinion about anything.  It is because I respect you that I am trying to understand your point of view better.  

I have an autistic son and, as I said in another thread, I am very proud of him.   I wouldn't even consider trading him for a NT child.   Like all parents, I simply want to understand the best way to make him happy.   That is why I am posting in this thread -- because I value the opinion of adult autistics.   I want to understand what you would want to change about yourselves and what you would not.   As a father,  this is information that I need in order to help my son to grow up to be happy.

Sorry, I meant "force" in a somewhat nonliteral way.   When I said "force", I didn't mean anything like locking a child in a room when he/she wants to get out.   I just meant taking a child to speech therapy when he/she is too young to understand the purpose of the speech therapy or the potential benefits it can bring.  What I meant was something closer to "take the child to speech therapy without asking him in advance if he wants to do it".  In the case of a three year old with a severe language delay, there is no real way (that I know of) to give him the information he would need to make the decision for himself whether or not he wants it.   So, one can just go ahead and take him to speech therapy and continue it as long as he is willing to participate.  

  If my son ever started to hate speech therapy, I wouldn't continue taking him -- I would just try to find a different approach to teach him language.  

I would not support any therapy that involved anything aversive or unpleasant to the child, and I can't imagine why anyone would think that such an approach would bring benefit.

DW_a_mom, I hope you are right -- I hope that today's children are learning to accept people that are different.   I was only the tiniest bit different from other kids but that was enough to get me bullied mercilessly throughout school.  

  If kids today are learning to be more accepting of autistics, that's the best news I've heard in a long time.   Any autistics here that are in school now and that want to comment on that?   Are you bullied for being different?

Take it or leave it, but I find flawed logic in that statement. You peak of burdens placed on us and on society, but you do not state your theories as to the nature or the cause of these burdens. Granted you would have far different words to say than these, but I would like to take the opportunity to state the nature and causes of these burdens myself.
You describe how an autistic boy behaves during church. You wonder what it must be like for the parents, how will the child fare when they’re gone. But once do you ever stop and ask “why is he behaving this way?” without simply saying, “because he’s autistic.” Now that is a true answer, but it’s true in its crudest, most simplistic form. Might I explain in far greater detail?
The autistic child needs certain types of stimulation and order in order to feel comfortable. Foremost, the autistic child needs an environment that promotes freedom of activity. They must constantly be challenged to expand their horizons of interactions and activities, but what you never, ever do is order them to behave in a certain way. The autistic child craves affection and approval just as much as the NT child. But unlike the NT child, who is satisfied to accomplish these tasks through doing what is expected of them, the autistic child must always have these things on their own terms, and no one else’s.
The church environment is the antithesis of what an autistic child needs. All forms of order and behavior are dictated by the church and by the priest, and these forms must always be followed to a T. That kind of environment is like torture to the autistic child, and the bizarre behaviors you see there are a direct result of that.
You NTs do that too! Under great stress you fidget, you pace back and forth, you become irritable, and you become very anxiety ridden. What you se is the autistic reaction to that same stress imposed by the church environment.
Do you think that child behaves like home? Or on a playground? Perhaps in those places he may seem a bit odd, but I highly doubt that he would be acting so inappropriately in those environments where that stress is not present.

I would beg to differ there.
Truth is relative to perspective. Only fact is absolute. “Communists are evil.” Is true to some people and not to others. “two plus two equals for” is factual no matter how many people don’t believe it.

Again I ask, what is the cause of that burden?
I believe it is lack of understanding. One parent may have an autistic child, and know nothing about autism. He or she will look at their child’s odd behavior and try to correct them, turn them normal, which will trigger a cascade of more inappropriate behavior. It will spiral out of control in a cycle of trying to correct inappropriate behavior, which will only trigger even more. The torment for both child and parent will be unbearable.
This lack of understanding and the endless cycle of hysterics that results from it is what drives some mothers to jump off bridges with their autistic children in their arms.
Another parent can have an autistic child while understanding autism. This parent will know what each individual quirk of their child will mean, how to respond to it, and how to teach them to find better ways to express themselves. They will know to give their child the control over what happens to them that they need and desire, while at the same time continuously prodding them to go outside their stubborn want for sameness. And this understanding will lead to fulfillment in the lives of both the child and the parent.
So in an absence of knowledge, yes, autism is an unmerciful, and impassable burden. But with the required knowledge, it merely requires a different method of rearing.

I’m truly sorry about the general attitude toward you about that issue, but again I thin most of it due to a misunderstanding.
If a so called *cure* for a condition can only be administered with express permission by the one –in sound mind– afflicted with the condition, than I would be all for its development! However, things simply don’t work that way.
People inevitably try to assert their own brand of ethics on other people. It’s already happened in my case, and I almost never was because of it. A doctor spent months psychologically picking away at my mother, trying to convince her to abort me because he told her I would be limbless and vegetative. She almost did, until she finally got away from that doctor and realized he was using brainwashing tactics on her. A second opinion & checkup revealed that I was perfectly healthy.
That is an unfortunate fact, and the development of a *cure* for autism will lead to countless mothers taking it without ever considering whether or not their child would’ve wanted it had they been autistic. Even worse, it will lead to countless more mothers being psychologically and morally forced into taking the cure.
The development of a cure will not lead to the will to choose whether or not you want to be autistic. It will in fact lead to that will being taken away.

On a final note, consider this.
Do you really think humanity has the wisdom or the right to decide what someone will or will not be born as?

I think that I am still trying to understand where most of you think the boundary is between acceptable therapy and an unwanted cure.   Here's a hypothetical example to show you what I mean.

    Suppose I have two sons -- one is autistic and the other one NT.   The NT has a hard time finding an interest that he is willing to devote any time to.   He'll stick with something for a few minutes, but can't seem to find an interest that is special to him.  

   Furthermore, he cares far too much about what other kids think of him.   Making friends and being social is all he cares about -- to the point where his studies suffer.   He's poor in math and has a poor memory.  

   In other words, let's imagine that my NT son is weak in the very areas that many autistics are strong.  

    So, I take him to a psychologist to try to help him not to be so desperate for social interaction that it hurts his schoolwork.   I hire a tutor to help his math skills and his memory.   I spend hours trying to help him find an interest -- something that he enjoys doing enough to devote time to it and be good at it.  

Now, here's a question:  By doing these things, am I trying to make my NT child autistic?  Of course not.  The goal would be to make him a NT adult that isn't harmed by a lack of special interests, poor math skills, poor memory, and obsession with social interaction.  

Similarly, what if I take my autistic son to a speech therapist to improve his language and give him social skills training so that he will be able to interact successfully with others and make friends if he wants to?  What if I teach him how to stim in a way that satisfies his sensory needs without getting him bullied by cruel NT high school kids?  By doing these things, am I trying to make my autistic son NT?  Not at all!  Instead, I'm just trying to help him to grow up to be an autistic adult that has as many strengths as possible and as few weaknesses as possible.  

In both cases, would I not be doing what all parents do -- trying to help my children grow up in a way that I believe will give them the best chance at happiness as an adult?  

To put the question another way:  what if I were to forget the labels "NT" and "autistic" and simply say that I will do my best to help any child I have to improve in areas where he or she is weak?

I don't think it's that simple.   How many children are there (NT or autistic) that actually WANT to go to school?   Virtually every child that I've ever known would rather sit at home and watch TV or play video games than go to school.   That being the case, should parents simply let their kids watch TV all day if that's what they want?  

Children don't have enough life experience to know what knowledge they will need to achieve their goals.  I keep thinking about my 8 year old cousin who desperately wanted to be a medical doctor, but didn't want to take science or math in school.   No matter how many times we tried to explain it to him, he just would not accept the idea that a medical doctor needs to understand math and science.  

Like most kids, I didn't want to go to school when I was a boy.   Thankfully, my parents took me to school against my will and helped me to get a good education even though I didn't want it when I was 7 or 8 years old.   Today, it is no exaggeration to say that every single good thing I have in my life I have because of my education.   My parents were wise to make me get an education against my will, and today I am much happier because they did.  

I believe that teaching should always be done in a way that is fun for the child.   Just because a child doesn't want to go to school (or therapy, or whatever) doesn't mean that the lessons can't be made fun once the child gets there.

I wonder if your opinion is affected by personal experience with bad teachers?   In my experience, most teachers don't really understand autistics that well and so the lessons are frequently poorly planned and/or poorly executed.  I remember one teacher that quickly became angry at my autistic son for not following directions.  She was genuinely shocked when I became angry at her and not my son.   I told her to get out of my house.  To this day, I don't think she understands what she did wrong.  My son has receptive language delays, and I highly doubt that he even understood what she was asking him to do.  Even if he did, she gave him no reason to want to do as she asked.   :mad:  In my experience, there are far too many teachers out there that try to teach autistic children as if they were neurotypicals.  There are also too many stupid teachers that think that an autistic child can't learn or is ***.   Many, many times I've had to explain (usually to no avail) to a teacher that my autistic son is smarter than most typical children, and is quite capable of learning.  I believe that it is the responsibility of every teacher to make the lessons fun for the child.   Teachers do a poor job of this with NT children, but I believe that it's far worse for teachers of autistic children.  

To get back to my hypothetical example (the NT child that doesn't want to learn math), I would simply tell him that he's going to have to learn math whether he wants to or not.   However, I would do everything possible to make it fun for him to learn math.   I just don't think that a good parent lets children sit around watching TV all day just because the child thinks that would be more fun than learning.

So, just to be clear: when I say that children should have to learn whether they want to or not, I am absolutely NOT advocating the kind of miserable learning experiences that most of you have had.  I regard those bad experiences as the result of an incompetent teacher.

Also, one other quick clarification:  I totally believe in the right of every child to determine the ultimate course of his or her life.  So, if that NT child wants to go into a profession that doesn't involve any math and involves nothing but social interactions all day long, I would completely support him in that.   As long as he is a child, though, I would want to give him as many skills and abilities as possible so that he will be ABLE to make his own choices as an adult.   The biggest tragedy, I think, would be for a child to grow up and be unable to pursue the career that he/she really wants because that career involves skills that he/she didn't want to learn as a child.  

When my autistic son grows up, I completly support his right to follow the life that he chooses for himself.  I believe that it is simply my job as a parent to give him as many skills and abilities as I can so that he will have the broadest possible range of choices as an adult.   I'm not trying to turn him into a NT adult -- I just want him to grow up to be a happy autistic adult.