Offer from Autism Speaks, please give your opinion

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Ouinon, I appreciate your passion, but it is unrealistic to expect society to turn on it's heals because a minority percentage doesn't like the way things have evolved.

And to ask whose fault it is becomes a completely acedemic exercise. The reality is people all over this forum have indicated they could use support services to help them live independent lives. Well, if you could use support services, you are asking for society to do something extra for you, and in doing so you are suggesting that you are, in fact, disabled in some practical way. People ARE asking for outside help in order to live independently. Which IS different from many other forms of prejudice in the past.

To me, acceptance / nuerodiversity means not having a child teased for being different. Means allowing a child to alter a homework or work assignment: as long as the result is what is needed, to allow a different process in getting there. To recognize that people have different needs and do our best to accomodate them, regardless of personal belief. To allow an employee to advance on brain merit alone, even when that employee doesn't project the "image" you want at the top. But it does NOT mean equalizing the field, because the field is not, never was, and never will be equal. Everyone brings different gifts and burdens to the table, and to fail to admit the burdens, while only focusing on the gifts, doesn't provide the paradim needed to have everyone contributing the best of themselves.

Sorry, Mr. Gray, for this total diversion.

But maybe it has SOME effect on knowing what to present: this started from me, as an NT, pointing out a comparison I see made that I don't think flies. Certain arguments that work here will not work with the general population. If you are pitching to the general population, I guess that is something to know.

Ouinon, I don't want to debate this any further. Interesting, yes, but I don't have time.

If there was a greater understanding of A.S.D.s then support services would not be needed so much. Their purpose is to inform the few people we currently interact with. Support services for other disabilities have had their roles reduced as the general public has become more aware of the conditions, reducing the extent of disability.

NicholasGray......

When I first posted in this thread I had no idea who you were or what your own opinions of autism were. I just heard your interview and watched your movie clips(found on the front page). I think your heart and mind are in the "right place" as far as wanting to offer assistance to the autism community in making a positive message more accessible. That is something I think most of us would agree is essential to moving forward in acquiring assistance and acceptance for autistics.



My first point would be....do you really believe AS is being sincere in saying they would post your submissions? Since the meeting when the offer was made(in a very spontaneous and off hand way) has there been other reaching out to you in your offer?

After investigating their site, I saw only two blogs that offered positive images of autism but they were very good ones,so they do seem open to some balance (even if it is only 1% of the over all information offered). It seems like a simple thing for them to list GRASP,WP and other support groups but I didn't see any of those. Seemed like most listing of resources was to buy "products" ...vitamins, ABA info, Sensory integration. I guess that was the main reason I doubted the genuineness of their offer.


I would personally encourage you to continue with your project. Even if they refuse it or bury it....it can be offered to UTUBE and other support groups, preaching to the choir or not, we need to feel inspired as well. Given the bombardment of the media with negative images...even we need a little inspiration, (and there are many parents that do come here who stradle the line of cure vs acceptance.) Even if they do something unethical with the video....that is just bad PR for them.


The one thing I heard echoed when a HFA made comments on some of the "cure" topics is...."You are not like MY child, you can talk, don't bite yourself, have a job, whatever...." Few of them have ANY hope beyond ABA,Vitamens, or an as yet unfound "cure" that their child will ever function above their current level. Any examples of LFA becoming HFA/Aspies is looked on as an anomaly. What makes this issue more complex is that since the DX didn't exist before 1994(and even then was not understood very well), current adult examples are over-looked. It seems to be a blind spot in the discussion that perpetuates the belief that Autism was just "invented" in the past 20 years. I know I fixate on this issue...because it seems so illogical to me that more scientist and parents would not want to know HOW so many adults managed to function before ABA and a cure? OK, Not all of us functioned at optimal levels (that's variable),but even many of the negative experiences of under employment,chemical abuse and wrong DX and wrong meds, homelessness...could be avoided now with current understanding of the spectrum, sensory issues, etc.


There are still going to be parents who can not be reached. They will never give up on the idea of "their" child being anything less the captain of the football team or cheerleader and most popular and best dressed...hey, that is their neurosis and nothing will cure that other then some major therapy(for the parents)....but most will be happy to have a child who isn't constantly melting down from sensory issues.


I also think it is a mistake for autistics to dismiss any kind of "treatment" as a negative meant to eradicate their "personality". I would like to see some more research on dealing with sensory issues, learning "some" nonverbal communication(just as I would like to learn some words of a foreign country I might be visiting with the understanding of those I'm communicating with that "it" is not my first language). It is never going to be innate but I want to have more ability to communicate and be independent..ie..not dependent on a social service system that is very dysfunctional...(been there).

Krex: really thoughtful post.

Nicholas: I remember once Amy (?) at Aspies for Freedom posting about her hero, a northern CA woman who had been diagnosed with autism in the 50's or so. Because at the time such a diagnosis meant institutionalization, the woman's mother hid the diagnosis, and worked privately to help her child. I remember following a link to this woman's story - really moving. She eventually led a full life. No chelation, no alternative medicine. Just a mom willing to take the time to get on her daughter's level and help her. The story could be used to point out two things, if that woman was interested in being profiled: (1) that there is hope for improvement from the simple basic tools all mothers have and (2) autism is far from new.

[quote="ouinon"]NTs often do not define success in the same way as people on the spectrum; for instance that what is bliss to an AS can look like vegetable-city to an NT.[/quote]

I think that sending in stuff showing people with AS holding down jobs, having families, living independently, etc, is actually just reinforcing the idea that that is what they should be doing.

Perhaps the absolutely ideal positive outcome for many people with AS is being able to sit for hours staring into space or at a shiny object or a colourful cover, twiddling their hair or chewing their fingers or absolutely motionless, following patterns in their mind, playing in the most fascinating sandpit they have ever found, the synapses of their brain...rocking rocking twiddling fiddling groaning/chanting/sighing, flicking, ...looking and looking as if in love at detail in the tiniest of things,( seeing universes in grains of sand) .

What if for many people with AS this is a positive outcome, and it is the requirement/expectation that they do other things which is the problem. Perhaps some/many can train/be trained to do other things, but it is cutting seriously into the time they have for their idea of fun/success. (Their idea of failure might be having to spend hours every day putting clothes on and off etc, eating complicated collections of food, having to sit and move in specific ways to suit others, reply to people who talk to you, etc. All of this for no good reason as far as they can see).

I don't get the impression that posters here are wondering whether the NTs at Autism Speaks will appreciate this sort of positive outcome, that perhaps the NT parents at Autism Speaks will not be impressed by this kind of happy autistic life.

Many posts on here seem to believe that everybody agrees on what a positive outcome is; but I think that it is that belief which represents the biggest threat/oppression to people on the spectrum.

The assumption is that healthy humans should "live independently", etc etc. What if dependence was a perfectly healthy part/expression of life, not to be fought, rejected, avoided, (only to be replaced with many unhealthy kinds of dependency, like weeds sprouting through pavements), and people with autism are seen as a terrible problem because they are a vivid manifestation of dependency that won't go away? ( at least "normal" children grow up, and get over being so "anti-social")!

8)

from ouinon