An amazing thing has happened on a newgroup that I'm on...an abservation was made about the conflict between autistic posters and NT's.
There is a lot of anger out there and it's being broken down logically. Good questions are being asked and it will be very interesting to see how this turns out.
Here is my response: (The other poster's comments are in bold)
Absolutely, I agree with [another person] that some autistics can be just as guilty of abusive behaviour as NT's. As many apparent autistics made my killfile my first day here as apparent NT's did.
I'll be the first to admit that and I apologize if I have come across this way (I know I have).
Looking at it from both sides: (an exercise of "theory of mind" - empathy - for me here, so please let me know if I'm off base...)
Parents, particularly NT Parents - They want to help their kids, first and foremost. They don't have the luxury of knowing what may be going on in their child's mind, perception or experience and thus have to rely on the information that is currently available. If they are on the Spectrum themselves, they may have a better idea.
Unfortunately, given that the information is provided by people mostly NT professionals) who *also* don't really know what the underlying story is with autism, that information is lacking in a lot of areas - in particular the core issues (sensory perception, experience, sensitivities, etc.)
This leaves parents in a sticky spot - what to do for their children with the information they've been given? One needs to believe the professional, university trained types who make money doing this stuff, even if they don't understand it completely, right?
By normal logic, one would say yes, so that is where many parents are coming from.
Then we have the "bad press" given to us by the media. Parents also have to deal with the stigma, misinformation and supposed devastation in this case. Hence, why we get the parents who come out and say self-esteem damaging things like "My child has been stolen from me" or "love the child, hate the autism" or "This is a Tragedy/epidemic/devastation (take your pick)"
Now, the stolen away thing is because of the one little factor of autism which generally shows up at around 18 months or so - the "regression", named such because of a child's developmental progress that seems to halt in its tracks and go in reverse. Again, this is what the parents see.
Perhaps this is because of the ordinary initial wiring of the brain that goes on between birth and about 5 years of age. At the age of 18 months, big changes are happening. Expectations are changing and ways of perceiving the world are being hardwired due to experience, etc.
Perhaps 18 months or so is when most children's brains are wiring for social development, etc.
Perhaps the autistic brain wires itself differently at this time. Who knows?
Some researcher might find this out one day and publish it. Until then, I'm just theorizing based on what I know of developmental neuropsychology (fascinating stuff, by the way!).
Parents also have to deal with the frustration of not being able to communicate with their child for a number of reasons, the primary one being that they don't know how...just as much as their autistic child might not know how to communicate with them either.
It must feel like taking in a person from another country into your home who doesn't speak your language, has very strange customs and is having a hard time with acclimatizing oneself to the new environment.
There is also the frustration of certain behaviours which are unusual (stimming), abnormal (eye contact) and sometimes unhealthy (smearing faeces - ick).
Yes - I can see a lot of frustration going on with parents! Yow!
Now we look at the autistic individuals - Here we have a group of people who know what autism is for them. They live it every day. Autism is who they are. They can't change it and neither can anyone else. They know how they see things, experience things, feel things and usually know why they do what they do.
Looking at what I read here every day, none of these people are stupid, out of touch, mentally unaware of what's going on or unable to communicate their feeling, needs, etc. in writing at least. Most of what is written here may be angry, but highly intelligent.
For myself as a highly intelligent person (at least I'd like to think so), there is nothing more maddening than to be written off as "stupid", "unaware", "retarded" (yes I know...the dreaded R word), "defective", etc. It's even worse when people think you've been taken away from them or call your autism an epidemic. It's quite insulting to an intelligent person, actually...so I can see why the anger is happening.
For myself, I feeel a lot of anger based on my own experience. I know from my own experience that the "recommended" therapy for autism (in thise ABA) didn't do a whole lot for me other than make me suppress who I am and what my coping skills are. I also know that the reason for this is a major lack of understanding on the therapists and researchers' parts of the "big picture" when it comes to autism.
They diagnose and treat autism based on what they *see* - which is a bunch of wierd behaviours and can be trained out.
Unfortunately, behaviour modification will work on changing anyone, because it is targeting the base functions of the brain - instinct. Training a non-verbal child is much like training a dog. Without the ability to communicate, one has to resort to appealing to the instinctive reactions to reward and punishment to "program" the desired behaviours.
This is why ABA and similar therapies "work" but do not entirely "help" the autistic child.
I grew up angry because my basic needs were not being met by those who were supposed to provide them: my parents and society. They couldn't help it because they just didn't know, but my anger was still there. (Still is)
Then there are all of the therapies...some of which are dangerous (chelation comes to mind), which anger most of us even more. Then you hear of all of the news stories of parents or professionals killing autistic people. That's bound to boil some autistic blood and generate even more anger.
If I had a nickel for every absurd "theory" I've seen about autism, I'd be one rich person! It's irritating, really, because these theories are being generated without anyone even bothering to ask *us* for insight.
This then leads to another irksome thing: Autism societies. They claim to "help" autistic people but they constantly ignore or even push those of us who are willing to add insight out of the picture. Granted some of us are not too "diplomatic" about it and I think that should change.
On the same token, I think it's time these folks started listening up. "You want to help? Listen!"
Many here are writing quite coherently. Many here are sharing opinions. Many here could really help a society if they would just *listen*. It's annoying being ignored for so many years.
Then you look at intelligent people again who know that they think, feel and experience differently. They research and find that others in history are similar. Autism is not such a new thing. It wasn't really seen as a medical "problem" until the mid 40's.
These intelligent people also know that, aside from their challenges, they have a lot of gifts. I know I have a lot of amazing abilities, passions and such. Would I want to see people like me cease to exist?
Would I like to see them genetically engineer people like me out of the world?
No. And I don't think other autistics do either.
There forms a natural divide at this point, between Autistics and NT's. NT's want to eradicate autism. It is a disease, a problem and it impede's their child's "progress" though life. People have to take care of them, it costs money to do that, etc.
They want to research, find cures, stop it before it starts, etc. A natural thing to do when one perceives something as a horrible disease, right?
I don't know about you, but I'd like to see things like cancer, Huntington's Disease and many other painful or debilitating afflictions be eradicated. I don't want cancer, thanks! If I were to get cancer, I'd be totally devastated and want to eradicate it from my life too.
NT's equate Autism with things like cancer. It's natural for them to do so. Autistics, of course, are intelligent, perceptive and often proud of their talents, gifts and such. They live as Autistics every day. The idea of eradicating autism is as abhorrent as someone wanting to kill offf an entire race of people fromthe planet.
To them, the idea is Genocide. Plain and simple. No one wants to be the target of genocide, do they? I know I don't! It may sound absurd, but it's true.
Nobody wants to be treated like they were the evil of the earth that must be eradicated, do they? I know I don't!
Autistics are *very* aware of what people think of them.
That's why you see such angry comments. It's like there is a war going on - NT's versus Autistics
This is what makes the whole autism community so unique!
Cancer patients and their families all want the same thing: get rid of the cancer. Now. It's painful, horrible and often fatal. Bad.
Diabetics would also like to see the end of their diabetes. Their families agree. No more needles, pills, watching one's diet, worrying about blindness, amputation of limbs or early death? Awesome!
Then you have autism....
Parents and society want it to disappear just like cancer or diabetes because they see it like that. Autistics don't agree most of the time because they do not see it like that.
Although, I think many autistics would agree that they would like to get rid of the negative aspects of autism without sacrificing their individuality and amazing minds/skills! Like I said...I would like my digestive problems to go away!
So, now what?
Well...you get what goes on here all the time: differences of opinion...strong ones.
I think what needs to happen is some two way communication. A mailing list or e-group is the perfect place to do it, since Autistics do have a perfectly loud and understandable voice here via their keyboards. NT's and parents, etc. are also using the same method of communication.
We have an equal medium of communication here, unlike IRL (in real life) where one may be speaking while the other is typing. We are all typing here. We're all on a level playing field, which is rich ground for two way communication!
How about making communication two way?
Autistics curb the anger and be logical only if need be. No need to abuse. No need to be overly nicey-nice wither, just cut the negative emotion out - I must do this too, so I'm not excluding myself from my admonition!
I resolve to be more objective when replying.
Parents/professionals - give us a chance to explain. If need be, put your emotions on the back burner. You're going to get blunt replies. You'll likely get angry replies. Try and look behind the anger.
Just my thoughts, of course. :^)
The question is: How does one overcome widespread misconception--especially in the face of well-funded advertising campaigns spreading the misconception--without evoking an emotional response?
That is the question, isn't it? It's a big one and would take a *lot* of work to remedy.
That's one to ask - how do we do this?
I'm doing it through the speeches I give at professional conferences and such, as well as by running a support group for parents, professionals and autistics in my hometown. We all get together on equal ground and have a lot of fun learning about each other.
For some reason, people seem to have strong emotional attachments to their misconceptions.
Yes, we all fall victim to that wonder of human nature called the "ego"...that litle part of our psyche that needs to be "right".
It happens all over the world with differences of opinions/ideals/beliefs/values - miscommunication, arguments - all the way up to wars. This little human folly is a big thing at times.
[This is very exciting to me for some reason!]
