Aspies For Freedom

I find it interesting and dismaying that until Bethduckie and Briana (who are apparently not themselves autistic) no one had spoken out with the slightest hint of sympathy, even in passing, for what parents of autistic children go through.  No one, from what was written, was moved in the slightest by their heartfelt and real emotion.

All the comments went from being bizarre ("this is part of a deliberate plot to kill all autistic people") to merely being totally self-referential and self-absorbed ("this real footage of autistic behavior makes me look bad").

I hate to sound provocative, but it somewhat reminds me of the apparently greater on average difficulty autistic children have in forming emotional attachments and empathy for others (even their own parents), and exhibiting or perhaps even feeling concern for anything apart from their own interests, needs, and demands.

Sadly, the posts after mine have totally confirmed what I said.  

While I sympathize strongly with people who have been bullied, or who have heard painful things said to them or about them, I have heard not a scrap of sympathy for the people in this film and what the anguish that they have had to go through.

Mostly what I've seen instead, again is, total self-absorption, and ludicrous attempts to impart the worst possible motives for both the producers of the film, and of the people who share their feelings in it.

I know many people in this forum no doubt bristle at the idea of someday being able to cure autism or at least prevent its expression somehow in people who may be genetically predisposed.  I've seen a lot of happy talk about it being just an alternative way of being wired and (non)interacting with the world, etc.

One thing this film tries to do is break through that, to convey the reality that autism in a family extracts an ENORMOUS cost on everyone else in it.

And the motive is NOT to make people with autism feel bad about themselves, but to impart a sense of urgency in researchers, donors, policymakers, and the general public about finding such a cure.

Bizarre paranoia about mass-abortion plots does not reflect well on those who engage in it.

NTs need social interaction, warm feedback.  It hurts terribly when a child doesn't smile, doestn't coo and play, doesn't talk.  It hurts terribly when the high hopes that one had for a child are replaced with the grim realization that to get to the same place will require a mountain of effort. That's NOT "bigotry" or "ignorance" - it's an expression of a completely understandable pain at experiencing cruelly dashed expectations.

And calling for punishing a child for wishing that he sister were not autistic just leaves me speechless.

Dear Green Lion,

The city of Eindhoven, the dutch silicon valley, MIT, Los Alamos, etc. all in one, recently had an explosion of autistic children. A report about this "epidemic" was made last year by the dutch evangelical broadcasting organisation, link included here: http://www.netwerk.tv/index.jsp?p=items&...k&a=164101 . It is mostly a quite bleak outlook on the next few years, the educational system can't cope with the influx. However at the end of the film the mother of the family (all six autistics) says, when asked if she has the feeling that her family is missing something, liberally translated into english: "No, i quite like things the way things are. Sure we all need a strict pattern and order to things, but the children are honest, quiet and clear. This may not fit in todays society but I think we could all learn from them."

A few days later an executive at Philips (founded in Eindhoven) sent a letter to the local newspaper (which unfortunately wasn't published online) stating that he would prefer to hire higher functioning autistics because of their honesty, good work ethics and creativity.

Last but not least I myself study at the university of applied sciences in Eindhoven. At my department alone, about 500 to 1000 students, there are literally dozens of autistics. Also at this university the teachers speak of the "epidemic" as being a blessing in disguise, the best thing that has ever happened to te high-tech industry in the Netherlands.

So you see, Green Lion, the story has two sides to it. You have the children that can't fit in with the rest of the kids and you have the brilliant aspies that have made the Netherlands 3rd economic region out of a city that only 100 years ago was a village with only 1500 inhabitants.

Please think of this in the future and know that autism can be te nuisance that autism every day talks about or the blessing the people at Philips speak of.

EDIT: In other words "Will we change people to fit the society or will we change the society to fit the people. I think we should change the society and society has changed in the past, think of gay rights, women's suffrage, equal rights for people of different faiths, etc."


@MttJocy:
I wanted to tell you before that I live right in the middle of an "autism-hotspot" but there you have it, you should indeed come live here :-).

I didn't come here to troll or make anyone upset.  My only "agenda" was a genuine astonishment at the lack of even a perfunctory or in passing acknowledgement of the suffering undergone by parents of autistic children.

I apologize for if I offended anyone by mentioning the apparent difficulty autistic children and adults exhibit in forming or expressing empathy and emotional attachments in the context of reactions to this movie.  Although I intended it as a way to encourage those unsympathetic to the parents to attempt to overcome whatever tendencies away from being sympathetic they may have, if they have them, I also understand that it could be seen as dehumanizing.  

I also apologize for hurting anyone's feelings by not openly stating at the outset that I sympathize deeply with anyone who has suffered as a result of autism, including autistic people who have had to endure cruel remarks or treatment from the outside world or even their own families.

I did CLEARLY state such sympathy in my second post, however, and was subsquently accused again anyway of lacking any empathy or compassion (Amy, Conlang, Bonnie Ventura), as if I had not spoken at all.

I've also been falsely accused (Amy) of saying that the opinions of people with autism should be dismissed.  More broadly, I've had opinions ascribed to me that I do not share and have not expressed.  While this may make it easier to be angry at me and not listen to what I am really saying, it is not impressive.

By contrast, my observation of a lack of expressed sympathy for the parents of autistic children such as those in the video was not only factually and checkably accurate but explicitly and harshly confirmed by a number of participants in this forum.  Others, after my repeated heavy promptings, finally did offer some qualified sympathy.

If it's not inappropriate to do so in this thread, which specifically concerns the movie, I'd like to respond in a general way to several remarks I've seen here, which I suppose touch broadly upon the entire purpose of this website and organization.  That is the applicability and appropriateness (or lack thereof) of the civil rights paradigm in discussing autism-related issues.

Unsurprisingly, perhaps, I'm of the opinion that it is not appropriate at all.  Autism may not be a labeled a "disease", and it may even be associated, among certain high-functioning people with autism, with various gifts and beneficial traits, but it is unquestionably a severe disorder with extremely deleterious effects in many aspects of the lives of those who have it and those around them.  All the happy "pride" talk in the world will not make this reality go away.

Everyone who has autism deserves respect as a member of the human family as all humans do, and the achievements of those with autism are to be encouraged and celebrated, both on their absolute merits and in the context of often having to overcome substantially greater obstacles to achieve them.   All that is a very different matter, however, from encouraging and celebrating autism itselfl.  It is not necessary to do the latter in order to do the former, and, contrary to the unfounded accusations directed at me here, declining to do the latter does NOT mean one is opposed to the former or wishes autistic people to ashamed of their status.

Despite its genetic components, autism is not comparable to racial / ethnic heritage or religious faith.

Rather, it is comparable to epilepsy or cerebral palsy.  In my view, to insist on "celebrating" the existence any of these serious disorders and to harshly attack those who seek to prevent or cure them as the equivalent of bigots or even genocides is deeply and profoundly misguided, to phrase it mildly.  Paranoia about the intentions of those who are seeking a cure and a pre-natal test is unbecoming.

If, despite the presence of the relevant genetic markers, there were some way to prevent such disorders from being expressed phenotypically, I would support making it available to parents and caregivers.  Hence, I support researching pre-natal testing for autism.  

I believe abortion is wrong, other than perhaps when it is necessary to save the life of the mother (LIFE, not "health" - which is too easily defined as "mental health" and becomes a slippery slope to routine rubber-stamping of all abortions).

Consequently, I mourn the apparently widespread abortions of the unborn with Down Syndrome and understand and share the trepidation many have over whether many innocent unborn will be killed because they may become autistic.  However, my opposition to aborting them is based on their being human beings, not because they have genetic abnormalities that should somehow be preserved.

That seems like part of the pattern I cited earlier of putting words in my mouth that I did not say. I didn't call anyone a genetic abnormality; regardless of its accuracy, that's a harsh-sounding label with a perjorative connotation and is therefore unnecessarily rude.  However, it's well-established that autism is associated with genetic abnormality.

You and others who are taking offense at some of my statements and opinions need to distinguish between what I am saying about autism versus what I am saying about people with autism.  You are not autism.  You are a person with autism.

Saying that I would like to end autism doesn't mean I want to "get rid" of people with autism.  Saying that autism imposes a severe cost on a family is to blame the AUTISM, not the PEOPLE with autism.

You want to get rid of autism - this automatically involves getting rid of autistics. The same as getting rid of black skin involves getting rid of black people or getting rid of homosexuality involves getting rid of homosexuals.

I've addressed these points already.  Please re-read what I wrote and refrain from inflammatory distortions.

DM Andy wrote:

Misfortune such as disease/disorder/handicap, poverty, abuse, injustice, and more can sometimes shape our characters in profoundly life-altering and even positive ways.  That doesn't mean that we shouldn't work to reduce it or eliminate it in the future.

I've also been falsely accused (Amy) of saying that the opinions of people with autism should be dismissed.

Amy wrote:

All the comments went from being bizarre ("this is part of a deliberate plot to kill all autistic people") to merely being totally self-referential and self-absorbed ("this real footage of autistic behavior makes me look bad").

As you can see, what I said was that in this discussion, from the people participating in this discussion, I observed up to that point a troubling lack of sympathy for the parents, an absence of concern for any one but one's self or one's group, and a willingness to engage in extremist conspiracizing.

Instead of responding to the specific points I made, you sweepingly and unqualifiedly accused me of wanting to dismiss all opinions offered by autistic people in all circumstances, simply because they are offered by autistic people.  That IS a false accusation.

What's the point of wasting everyone's time with unfair inflammatory accusations that are easily refuted?

I suggest actually making an intellectually honest effort to engage with the points I've made instead.

DM Andy wrote:

Well, I think that sort of blithe and facile denial is what the film in question helps dispel.  You may not consider yourself as unfortunate in an overall basis, which I actually admire, but in my view autism, and especially its more severe forms, represents a substantially unfortunate element in the lives of those afflicted with it and on others around them.  

It does no good, by the way, as others in this discussion have done, to shrug off the severe burdens autism imposes on a family with minimizing talk such as, "every child is difficult sometimes" and the like.  It ignores the question of degree, and whether the emotional distance, tantrums, etc., are more frequent and pronounced.

DM Andy wrote:

That depends on your definition of "respect".  I certainly believe strongly that you have a right to refuse to take that tablet, which no entity should ever violate.

However, I would disagree with your decision and consider it strange at best.  And if asked, I might tell you so.  If a broader social movement emerged advocating that the tablet not be taken, I would criticize it.

Amy, I apologize!  :oops:

I somehow got you mixed up with Gareth, who said:

I support a cure for autism.  Calling someone "defective" implies a denial of his humanity or of his innate worth.  It's much easier to reject my ideas if you distort them into inflammatory ways, isn't it?  Easier to demonize me then listen to me.

I've addressed this issue already.

That's a ludicrous idea.  (Note to the perpetually aggrieved and thin-skinned: I am NOT dismissing all autistics' ideas or all autistics.  I'm calling a specific ludicous idea ludicrous).

Autism is a disorder (and often a severely debilitating one); normality, by definition, is not.

It may be seem compelling and comforting to latch onto an equating of autism and normality, to pretend that autism and normality are equivalent, like chocolate and strawberry, but it is a false comfort.  

What's more, it's unnecessary.  All human beings are worthy of respect as such.

Finally, doing so implies a refusal to face unpleasant facts about real life and the real world.  But facing such things is a necessary element of adulthood and self-acceptance.

In my view, it's self-evident that it does afflict those who have it, and that if it doesn't prevent them from being the best that they can, it presents substantial and serious obstacles in their way that would otherwise not be there, in addition to all the other obstacles that everyone else has to deal with.

The explosive frustration often exhibited by autistic children struggling to communicate their needs to ordinary people suggests otherwise.

Oh, I know that they are probably discriminated against. I have sympathy for those who are discriminated against, whether they are the children or the parents. I do feel for parents who are discriminated against as a result of misunderstandings, for having an Autistic child.

I would like to ask you one question. What do you, personally, believe that the video, Autism Every Day, is designed to achieve? Is it designed exclusively to promote research into a cure, or is it, at least in part, designed to raise awareness and hopefully improve funding, care, resources etc?

Not intending to hurry you or anything, but would you be able to answer my question on Autism Every Day, please? I would like to gain another perspective on it.

SOJAW:
Yes!  Exactly!  That is not 'curing' your ASD child; it is helping him to become stronger in areas where he is weak.

A 'cure', on the other hand, is where you get rid of the autistic traits in your child completely and utterly and they do not return.  In other words, completely altering your child's self to the point where they are a different person- a more 'acceptable' person.  A 'cure' is getting rid of the core autistic self, of all semblance of autism in the person.
To be honest, a 'cure' frightens me terribly.  I think it frightens us all.
Treatment for things a person has difficulty with, on the other hand, like speech therapy or some such, I wholly endorse.  Anything that will make life better for the kid without hurting him in any way or changing him irrevocably.