Aspies For Freedom

I have two really big complaints with the majority of autism activists,the first one being that few,if any,of these people will acknowledge those of us on the more severe end of the spectrum.For all of their talk about an "autism spectrum",I find they can be quite exclusionary.More often,than not they paint all too rosy a picture, and one that is quite misleading.It may be an oversimplification,to say this,but a lot of autism activists,and bloggers,want everybody to believe all autistics are just cute,quirky"aspies" and "auties" (Terms I have come to loathe.),whose every behavior is one to be celebrated.

Far  too little is made about:

*The developmental  delays.I was not toilet trained until I was seven years old.I could not dress myself,until I was about ten,and I was at the "severe" end of the spectrum for problems in motor coordination,and development a MAJOR PROBLEM for me,that I only had to accommodate,and adapt to. Oh,and I also had profoundly delayed puberty.
*The headbanging.
*The  eloping was also a big issue for me,until well into adulthood.I wandered away from my mother.I wandered away from school.I mean actually wandering away from the school property,and walked aimlessly for blocks,or miles.When I was in kindergarten,and first grade,I did this naked.And nobody cared.I had no idea where i was going,or why,sort of like someone with senile dementia.I would eventually come around,with no clue as to how I got where I was.

It was only after megadoses of GABA,and Acetyl L-Carnitine,that this,and a lot of my other more serious neurological aspects of my autism improved.Including improvements in my ability to communicate.

This in addition to all of the usual obsessions with flapping,spinning,jerking stuff up and down,breaking stuff,and setting fires.

Riddle me this,Batman :
WHY IS BEHAVIOR  LIKE THIS SOMETHING TO CELEBRATE???

The answer is it isn't.


Nor is autoimmune disease.The autism activist community largely ignores,what is a major part of life,for me,and others with classic infantile autism.We have become largely forgotten.Severe inflammatory bowel disease,chronic pneumonia, and autoimmune interstitial lung disease,rheumatic heart and joint disease,and recurring meningitis,are some of the fun stuff I have been living with ever since I was a baby.This,to me,should be considered both part of the spectrum,as well as part of the diagnostic criteria for autism,but not be a deciding factor for everyone. But genetics,and family history should be.

But then this might push some "auties" "off the spectrum",and we can't have that can we ?

I was too out of it and unaware of things to be in on the formative years of autism activism.When I started to learn about just who made up the activist community,I saw no real place for me.There was a lot that I was,for lack of a better word, repulsed by.For me,the "it's not a disease,it's a way of life" argument is just as dangerous,and flawed,as the claims of crackpots like DAN!,CAN!,and the "vaccines cause autism" crowd.

If autism activism is ever going to be taken seriously,it needs to undergo some serious self-examination,become more inclusive,and realize that not every aspect of autism is something to celebrate.

These are my goals as an activist,who here is willing to help me ?

There has been a great deal of research done linking autism and autoimmune disease in the past decade.Trying to dig up all of the stories out on them is quite an undertaking.It would be as if somebody had awoken out of a five year coma,and asked you to fill them in on everything that had happened in Iraq,and the GWOT.The trouble is,this stuff has been confined to the scientific journals, and not read by the general public.The genetic overlap of ASDs with both schizophrenia/bipolar and autoimmune diseases should be as big,or bigger than all of that vaccine garbage was.Yes,mercury is a neurotoxin,and no "mainlining' it is not a good thing,but mercury does not cause autism,any more than head injury does.But this got all the press,and the studies about autoimmune disease get buried,because it is hard science,and not sensationalistic tabloid stuff.There are studies like this coming out all the time,and for me,it is just validation of everything I have lived with all of my life.It is the exciting side of autism research,that is largely ignored.Kanner talked about immune disease himself,in 1943.It is to our detriment he did not include it in the criteria for diagnosis.It would have saved a lot of trouble,and prevented a lot of unnecessary debate.The internet has made this information available to all.You just need to look for it.

I have a Daily Kos account.I also joined "Mother Talkers" today.I probably should post more over there,to keep more people abreast on what goes on.

This has been a major source of news and information for me.It is mostly a hangout for neuroscientists,doctors,and researchers.It helps if you know the difference between interleukins and immunoglobulin.

I agree.This should be a MUCH BIGGER priority than it is ! See my Kos piece.

B"H

My humble perspective:

I believe that accepting myself as AS, and loving that (although I use the term "Spectrum" instead), has helped me to broaden my perspective on humanity.  That has been my experience.  Autism was once very threatening to me, more threatening than it would have been to a Neuro-typical person, since it was something I repressed.  My first experiences with autism were scary, mind you, I must admit, and I will not tell a lie to please.  However, finding out about AS has been a blessing in that respect.  I now want to find out more and more about my own kind, including those who are so-called "LFA," and have come to see the intense creativity and gifts in all of you.  One need not be a "savant" for me to appreciate them.  In the time out section I have written some articles on this whole exploration that you are all welcome to read, and I hope appreciate.

One more thing.  I do understand that "Aspie elitism" exists, and may have gone through a phase of it myself.  It was an earlier phase of my exploration, for which I apologise.  I have seen where it leads in dealing with it in others, the hatred and the arrogance.  I have decided that it is not for me, and that my affections embrace the entire Spectrum, including our courageous "LFA" friends who have put up websites explaining who they are, that they are people.  I have seen "Aspie elitism," and have decided that I will not even debate against it because I have no interest in even dealing with neo-nazis and "transhumanists" who want a human genome remade in their image.  Friends, do not feel inferior to them because they have nothing to offer, or to imitate, any more than the anti-autistic perspective would have anything to offer.  

I hope that my words have been helpful.  All the best to all of you,

I agree completely with you on this. Understanding is what we need not elimination. I however, am NT  so I hope you dont feel all NTs want to eliminate  because that is not true.

B"H

I encourage readers of this thread to participate in my poll.  At some point, maybe I'll tell the story of my own complex history, where I fit on the Spectrum, and how it is that I am not sure about how HFA/LFA fit me.  

Is there a combination of LFA and Neuro-typical that allows someone to make eye contact, shake hands, but then which allows other psychological forces to play out?  Are all Aspies the same?

B"H

Please don't let me stop threads.  Read this:

http://www.aspiesforfreedom.com/showthre...489&page=1

and comment.  OK?

All the best.

I'm an autism activist/advocate who does include "lower-functioning" autism. I often wish i was that way, but any autism at all is good. I'm "HF"A. I didn't talk until I was almost 4 and I'm glad.
I think autism is a good thing to have. I posted in the "LF"A thread. The "LF"A people at my old high school were amazing people. One of them wore a diaper. There was Theresa, Nathaniel. Richie... I liked them before i knew about "high-functioning" autism.
Please get back to me if you want to. I love stimming and rocking in the rocking chair listening to music.
What do you like doing?

B"H

For Lucie1 and others who have expressed curiousity about me, perhaps I'll do a philosophical biography when the time comes. I am a complicated person.  The simple answer is that I am an "Aspie."  However, there are complexities to the story that make my case unique.

All the best.

I am not sure I will ever get to the philosophical biography, although I might give it to those who PM me and who want it.  However, I do want this conversation to continue, which is why I will re-link the original post:

http://www.aspiesforfreedom.com/showthre...489&page=1

I would like the issue addressed.  Frankly, I would like the issue better understood.  If the author wants to PM me in order to create a bridge for understanding, I would gladly accept it.

All the best.

ATM: I went through a whole debate within myself that I posted to the Forum over the "cure" issue.  I let people inform me.  They were rough, tumble, and to the point, just as I wanted them to be.  I came to the conclusion that the real question, for me, is acceptance versus intolerance.  I want to be on the side of acceptance.  I will let others worry about the abstractions.  That was my original position on this forum, and I'm sticking with it.

Personally, I *HAVE* to take the position that Autism is "a way of life."  This is the most pragmatic position I can take.  This position is not just for myself, but for the student with whom I work.  He desperately wants to be NT.  This has actually created more problems for him than would self-acceptance.  I have to let him know that he can be fulfilled by being as he is.  

The NT's want my student to learn "socialization."  And yet, he IS learning NT socialization, just the wrong kind.  He is actually doing what they think he should be doing.  Following their advice, he has gotten in to big trouble. I think that it is time for a new philosophy, so that he does not copy the worst in NT society.  He is a good kid, and if he felt that he could be himself and be worthwhile, the "socialization" thing would actually be much better for him than if there is too much of a NT focus on socialization.  How paradoxical!

The "cure" concept is a product of scientism.  The right pill, the right chemicals, and "WA-LA!".  You're cured now!  It might be possible, or it might not be possible to "cure" Autism (whatever that actually means).  The emphasis for people on both sides of that debate should be about how to help Autistics, including so-called "LFA", to find a life that is internally fulfilled.  (Every time I deviate from that position in to some kind of abstraction, it does not sit right.)  

It is time to stop forcing people to be "NT," regardless of our views on a cure.    And, if we are dealing with genetics here, then a cure is impossible anyway.  Thus, pragmatically, we have no choice but to restructure education for Autistics.  That is the best way to reconcile all positions.  And, we must emphasize the gifts that each person has to give.  They are there.

As for myself, I have let the young man know what I am.  He knows by now, anyway.  And, he has copied some of my stimming habits.  Sorry, but I need to be able to teach him something useful!

All the best.