Aspies For Freedom

The purpose of the video was specific and narrowly tailored: to emphasize the costs and burdens of autism and to drum up support for a cure.

It's amazing to me that among all the defensive reactions on this forum to the video "we're not ALL like that all the time; autistic people have good days and good times too"; no one thought to realize that the parents in this video are not like that all the time either; and undoubtedly are extremely brave, selfless, loving people who have had to devote their entire lives to their extremely needy children and have set aside their own needs and feelings  for many years.  This may well have been the first time they have opened up to others about the terrible downside that they have to deal with every single day.  

Who said autistics are bad, or not individuals, or unsuccessful, or unhappy?

I have said that autism imposes terrible burdens and difficulties both on those who have it and on those around them.  Pretending otherwise is simply hysterical denial.

As for not wanting to become non-autistic, let me turn your question from earlier back at you.  I know you wouldn't take a 100% safe/effective/no side effects autism cure pill.  But would you deny other autistics that choice?  Do you oppose research to develop such a cure?

No.

Did you even read what I wrote and bother to try to consider it, bother to try to see another person's side or empathize with their emotions and situation?  Your loaded, twisted, bitter language is saddening.

There's no such thing as "NTism".  Being normal is not a "condition" equivalent to autism.  Seeking emotional and psychological refuge in such false constructs, while no doubt highly tempting and comforting, is ultimately not only a false method of seeking affirmation, but an unnecesary one.  You are not your condition, and you do not have to normalize it to make yourself a valid person.

The notion of an "NT inferiority complex" is ludicrous.  Do you really think saying such things makes you an effective and credible advocate?  I suggest you operate in reality.  While it may appear cold and uncomfortable, in the end it will be more satisfying.

I already addressed this issue.  The terrible burden of autism can't be waved away by such comforting happy talk.  It does no good to say "all kids are difficult sometimes."  The reality is the instances of extreme difficulty in getting a child to behave and respond in a healthy, age-appropriate, and mature manner are magnified manyfold in an autistic child.  And we are all well aware of that.  Let's stop pretending.

I appreciate your outreach to me and your call for a brighter future.

And you mention opportunity cost??  I think a far, far, brighter future would exist for all if these parents as described in the video didn't have to sink Harvard-level funds into children every year with a far less than Harvard level of return; whose social lives, hobbies, personal interests, and dreams, are effectively permanently destroyed, who don't have to cope with all-consuming and bottomless demand/need with no end in sight, forever.  I think a far, far brighter future would exist for these children if they were able to use whatever intellectual ability they were given to its fullest potential, without autism forever riding the brakes and trying to steer off the road.

I would no more celebrate the fact that autism exists than I would epilepsy, deafness, or ALS.  The fact that people with these problems have achieved great things, and even allowed their creative impulses and intelligence to flourish within their severe limitations in such a manner as to create a "culture", is a testimony to the human spirit, but not a reason to keep these scourges of mankind around to hobble and harm future generations.

Being able to live on your own, hold down a job, and drive goes without saying for ordinary people.  The fact that autism made it necessary for you to wage a struggle and effort far more than others to achieve these things is the whole point of this discussion.

Thanks, Amy.  My response to that is the same as it has been to other, less eloquent statements in purely verbal form on this board.  No one is attacking or blaming you for the burdens your condition imposes on society, and on you as well.  You should be the most fierce proponents ever for a cure for autism.  Your insistence on taking efforts to cure it as an attack on you worthy of feeling insulted or angry are deeply baffling.

In a sense, autism attacked and changed every "aspie" on this board, inflicting lifelong limitations, problems, and burdens.  If you're feeling sad or frustrated, autism itself should be the target.  Not people who see what you and your families have had to go through and vowed "not for anyone else."

It's almost like Stockholm Syndrome or Battered Wife Syndrome; identifying with someone / something that has victimized and harmed you.  Sorry, I hate amateur pop psychology.  But those are the analogies that popped into my head.

I'm curious as to why any of that makes a difference.  Truth is truth, and falsehood false, regardless of who says it.

I never denied any of that, even implicitly.  Stop attacking straw men and listen to what I am actually saying.

I am not connected to Autism Speaks in any sense.  But so what?  What if I were?   How does any of that make what I say more or less true?

Truth exists independently of our personal circumstances and personal feelings about it.

You certainly deserve respect for your human rights and dignity, and the right to make your own choices.  You also deserve compassion and empathy for any suffering you have experienced for any reason, including as a direct result of autism or because of cruelty you have experienced from others.  You and everyone here have both these things from me, and always have.  

But you can't and won't guilt or intimidate me into denying reality and pretending that falsehood is true by threats that you'll call me un-empathetic.

Facts and reality exist independently of our most intense emotions and desires, and refuse to be held hostage by them.  

The reality IS that autism imposes an enormous and ongoing burden, both on people afflicted by it directly and on everyone around them, and on society as a whole.

Why am I so insistent on this point?  Because it is the main reason that a cure for autism is a worthy goal.  Because it is the main reason that the mothers in "Autism Every Day" deserve sympathy, not brutal condemnation.  Because this essential point, this reality of the world, is loudly denied by many on this forum.

Sigh, I probably shouldn't have gone there given the hair-trigger paranoia on this forum.  ("Oops, he mentioned paranoia, another psychiatric condition!  He must want to exterminate us in concentration camps!!"  ReLAX, geez.)  It's just an example what I see as a troubling identification with a debilitating condition.

Some militant deaf people and others believe in such constructs as well, viewing people who get surgery to permit hearing as sellouts, labeling and judging people who can hear as if were a cohesive community, and so on.  It's not just "Aspies for Freedom."  Ultimately I think it's about the civil rights paradigm stretched and distorted far beyond any reasonable parameters and into grotesque parody of itself.

For the record, for the umpteenth time, I already said that I oppose forcing cures on people who don't want them.

Your child had severe meltdowns and smeared and ate feces for years, and you say you don't see how he has been harmed or victmized by his autism??  You simply see him as differently talented, like one child being gifted with a talent for singing versus another at throwing a baseball?

If you are right, then personal experience is the only way to know something.  Then language, the ability to communicate abstract and concrete realities via speech and writing, is pointless.  Recording technology should be discarded.

We shouldn't bother going to school, or watching or reading nonfiction, or talking to friends and others.

I doubt I have any personal connection to autism that the implied requirements of such a challenge would consider sufficient.

I strongly dislike bright lights and loudness, sometimes react much more violently than the norm to being startled, am a "nerd" with an affinity for trivia, am (perhaps contradictorily) both easily distracted by multiple voices and able to achieve an intense focus that requires strong stimuli to pull me out of, sometimes prefer the logic of computers to people, value solitude, and as a child was teased and bullied unmercifully for my social awkwardness and intelligence.

My girlfriend is another nerd who dislikes crowds and social demands, and rocks to comfort herself when in distress.  I intend to propose to her soon.  If we marry as soon as possible and concieve immediately, our first child would be born when she is 35, the "magic age" at which risk factors for conditions such as autism begin to rise dramatically.  She is also overweight, another substantial risk factor.  

As a result of all these things I have begun to attempt to emotionally and mentally prepare myself for the possibility that one or more of our children might be autistic, rather than experence that revelation as the shattering shock it is for many.  I have begun reading and learning as much about autism as I can.

For years as a child I attended the same church as a middle-aged/elderly couple with an adult autistic son.  He would rock, sometimes flap and stomp, even hum.  It was very disruptive to my ability to focus mentally and emotionally on the service, and achieve spiritual peace, because there was always either a disturbing distraction, or the tension of awaiting the next sudden and startling vocal or somatic outburst.  I strongly recall as well the faces of the parents, week after week, the deeply etched lines, wondering just what they had been through, what a struggle it might even have been just to get him dressed and into the church every week, how they must have needed some spiritual solace.  I wondered how much he completely consumed and dominated their lives.  I also noted their age and wondered what would happen to him after their deaths.  I deeply deeply sympathized with them, and with their son, wondering what life was like for them, hoping it wasn't as hard as I feared.

The prospect of one of my children being autistic, especially severe and low-functioning, terrifies me, just as any severely debilitating condition, birth defect, handicap, illness, death in the family, or other catastrophic event would.  I pray that such a cup would pass from my lips.  But if it happens I will live with the hand I'm dealt and treat the child in the most compassionate, patient, and humane manner possible, trying to maximize his potential.  

I'm sure some of you will go ballistic over one or another thing I've said, but I'm not saying that to troll, just telling you where I'm coming from.  I'm more tired right now then anything else.  It's tiring fending off hostility from all sides with no one being on your side or agreeing with you.  Still, it's what I expected.

I don't enjoy provoking or upsetting others.  I do value and even enjoy vigorous and spirited debate among intelligent and caring people who strongly disagree.  I came across the video and heard of Aspies for Freedom, as another earlier poster here did, as a result of a Wikipedia article.  While I knew of certain elements of the disabled community growing more militant and adopting identity politics, I was shocked at the idea that there would be a community that would actually attack the mothers of autistic children who were sharing their stories in hopes of inspiring efforts at a cure.  In fact, I was angry.  I visited Aspies for Freedom and read the thread on it.  I calmed down, but still wanted to impress upon the people here how strange it was to me that there was not an ounce of expressed compassion for these mothers until I challenged you to express it.

So while I came ready to debate with people who disagree, I did not come to "troll" - or to personally attack others, seek to cause them emotional distress, or so on.  I simply felt an urgent need to express my views.  And I especially did not come here in the passive-aggressive manner of a genuine troll, to prove my superiority to others by upsetting them while smugly remaining calm.  I hate that kind of jerk conduct.

While I respect and admire a willingness to engage, exchange views, and even heatedly debate people who strongly disagree with you, and thank you for having done so, I understand if you feel you have been invaded or intruded upon.  After all, you set this site and forum up as a "safe place", a community for people who are like you and/or agree with you.

I believe in freedom of association, and in being able to form such a community without being forced to acomodate others unlike yourself.  That's why, by the way, I personally disagree with anti-discrimination laws (although I would not violate the law).  So while admins or others no doubt have the power to ban me regardless of my views, I will respect a request that I leave or a decision to no longer allow me to post.

I want to close this statement by saying, however, that I do object, again, to the subjectivization of reality implied in the whole construct of "as a blankety blank who personally experienced blanekty blank".  This forces people and reality into categories and effectively bans debate based on facts and turns it into an authenticity contest.  In this case, it's who is more of an aspie than the next, or who has suffered more.  If I have a more intense personal story, then anything I say trumps yours, you are inferior to me, and you are personally attacking me to challenge my opinions and observations.  No discussion is possible in such a construct.