I AM CONDUCTING AN INTERVIEW WITH AUTISM SPEAKS

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Wow, that sounds like my life. I love being self-sufficient. Dont owe anyone anything. work my own business, own my home. course I didnt wait till I got old, except for my home being paid for, now. I have lived like this my whole life. Being Autistic saved me, I guess.

I think you along with Inventor may have a unique perspective here that many others don't share that visit the autistic online communities.

The mechanics, carpenters, bricklayers, etc. are never mentioned in the statistics. It is the people with Aspergers that are booksmart, that is the typical stereotype, but I think there are millions of others that don't necessarily survive with book smarts that are robust enough and have the spatial skills necessary to work with their hands; and the place they go after a hard days work may be an ice cold beer, instead of the internet.

I doubt many of them have ever even took notice of the word Aspergers, and probably never will.

I think they exist in the millions in the US. Would you agree?

I certainly agree. These people are every bit as necessary as anyone else. It takes all sorts.

To me, NT = Passably good at a little bit of everything.

Autistic = Incredibly talented in very limited areas.

This is, of course, a generalization.

I know I'm an excellent writer, but I've never managed self-sufficiency like Sky or inventor. I envy them that. As I've said, I write because I literally cannot do anything else (well, I do well in most expressive arts, but cannot drive, pay my bills, work an ordinary job, etc...)

This makes me feel like an incredibly burden, which only fuels my passion for literary success.

so many of us not DX`ed ( mine was accidental ) that have managed to live full lives. Just by learning a trade, and relying on ourselves, which is all we wanted to do. Not even realising what we were for all or most of our lives, we came up somehow with strategies to survive. I think if I had been labeled as a child I may not have been the same. Not knowing is for the best. But then again knowing sure solves mysteries.

We didnt talk the talk, just walked the walk

It's interesting. There is a handful of people here that lists their ages at over 60, and they all seem to have done pretty good for themselves, in living an independent life.

I wonder sometimes, if culture, not just people makes it harder to adapt today than it has in the past for some people with Autistic Traits.

We hear about the information technology advantages of today's culture for Autistic people, but the world has become a faster moving place for children born into a world with so many more moving parts, than there were in the past.

I got to slowly adapt to the changes growing up in a slower world that gradually got faster. For an individual that takes in every detail, there is a great deal more today to take in than ever before.

Very true, aghogday. For instance, television is difficult. When you are presented with so many people behaving so many different ways, it is difficult to understand when and how you are supposed to act like who. Does that make sense?

We are good at ignoring most things, and can double or triple that without effort.

We are slower to learn, even the few things we want, but when we do, we cannot just use a computer, we can repair it, and complain about features it should have.

The digital age is great, I can look up any problem, find parts, much quicker than ever before. Hardly anything I use is available locally, but on ebay I have choices. Over the last few years I rebuilt my motorcycle with original period parts, and it is 48. Parts have not been available since the early 70s.

It is hard to be a web generalist, no one has time when just your main interests have more pages than you can read.

I have always had problems in person or by phone, that do not exist by email. I also reach people with narrow interests worldwide.

I also avoid a lot I used to put up with. The only local source of knowledge was places called Libraries, that had ten year old books. It could take days to find anything, and then be twenty years behind the field.

I was glad to trade that for a sixty-five pound 21" CRT monitor. That has been replaced with a seven pound flat screen.

While there seems to be more going on, most lacks content. On the other side I can find more than was known in 1960 on a single web site, and science is dated in six months on the web.

For the same effort we get a lot more information now.

Where setting up a small shop was the way to get enough business to survive, now the web, and I deal over a wide area, and do not have to pay rent.

My ebay history has one Louisiana purchase, and no sales. Japan, Australia, lots of Europe, Northeast and West hardly anything within a thousand miles. Pine trees do not buy.

I think this a great tool for the up and coming.

Like countries that never had landline phones that leapfrogged into cell phones, our next generation only needs a keyboard.

Tambourine-man would have remained an unknown, it used to take leaving the house to get published. Now not only is he on an international medium, but hundreds of people love or hate him. Unlike TV, they talk back.

That is more people than you could annoy in a lifetime at the village pub.

I think it has lead to a rapid formation of social identity.

My problem was I had to guess what other people thought, and my guessing machine was set on alien. It would take me years, perhaps a decade to get that much feedback.

In that respect Tambourine-Man has become ten years older in a week.

He seems to be surviving, has it all laid out to sort at once, and can move on to the next frame of this comic. Us old folks took decades to learn things due to lack of input.

I think we all come to what works for us. The sooner the better.

A known fact, autistic childhood is a problem, we get that alien feeling.

Truth is the other kids get it later. They got through the easy stuff in childhood, becoming adults is hard on them. We start slow, learn in excess, do not learn common things, but down the road, the school geek, nerd, is called, The Boss.

We focus on the job, it pays off later.

I would model all this as virtual learning, but we have the internet, and real people who will take the roles for free. School and employment limit human interaction, here they are raw, live, and natural.

Call it trans human development, we get every Ism thrown at us constantly. Mytholigical Greek Nightmares had nothing on the web.

The result is we get constantly thrown back to our center. That develops till we finally get some self identity. Just like book learning, skill development, we become more skilled than most, because we spent more time at it.

Another of our problems is narrow focus and an inability to function in groups. The internet forums will beat that out of you. Dealing with mobs with pichforks and torches is all in a days surfing.

Computers and the web are products of the autistic mind, it is easy to see who the aliens are here. Only logic supported by facts stands.

I am in favor of the future as it is not the present or the past.

It makes a whole lot of sense. While we may consciously understand that TV is not real; our brains react to it like it is reality. For hundreds of thousands of years, humans were exposed to at most 100 of their kind in a life time. Now because of our cultural byproducts, through the medium of TV, we are exposed to potentially thousands of humans and their personal circumstances in the course of a week.

I didn't see TV until I was 7. Most everything was scripted down from reality; a dilution of real life. People talked slower, moved slower, and life was presented at a fairly static pace. Today it's completely different, a hyper-representation of a reality that is already hyper enough.

Put it at 60 inches of high definition and digital sound, and the nervous system becomes that much more impacted by the experience.

I didn't speak until age 4, didn't get therapy, and ended up with three college degrees. Would it have been the same if I had been born today; I don't know, I might never have started talking; where is their time for talk, with overwhelming input.

Some people seek stimulation and some people can be overwhelmed by it.

If it ever gets to the point where you feel like you want to pace when you watch TV; take a break, your body is telling you something. Our fight or flight response is for just that; real fight or flight scenarios.

Action and violence on TV can initiate it, along with whatever else may stimulate us, bringing that response; it isn't healthy in a long term continuous dosage.

People, bright light, colors, action, sound, violence, food, and sex; it's there in abundance not only on TV, but in almost every other information source, we come into contact with.

Our brains adapt through neuroplasticity; are there limits of what we can safely adapt to as human beings? Some of us are more resilient than others.

I suspect that today's culture may be the difference for a diagnosis, for some, where there was no need for one in the past for individuals that had the same genetics and developmental issues.

Above and beyond all, humans weren't made to sit in one spot and live in virtual reality. It has to change the way the mind and body works. I suspect many children today are born into a matrix where there is no easy escape, or other known world.

My memories of childhood excitement were digging for earthworms, copper pennies with old dates, fishing on a river, and marveling at brackish water crabs, along with playing with neighborhood kids every afternoon after school.

The kids in my neighborhood now rarely leave their homes. They may be in a zoo of human creation, and not even realize it.

The natural changes in the environment, create changes in animals at a relatively slow pace. Different cultures result in different brains. We live in an extreme one now, where human imagination and the cultural byproducts of it can take us more places in a day, than most humans experienced in a lifetime in the distant past.

After getting diagnosed at age 47 and discussing my language delay with a psychiatrist, he pondered a serious question; in the distant future will humans in developed countries lose much of the verbal abilities that their ancestors had in past generations, not because of evolution, but because of neuroplasticity and our way of life?

By the way, I loved every advancements in technology in my lifetime, and soaked all of it up, until my cup was overflowing with it. It ran my body down. The thing I miss the most now that I did in the past was mowing the lawn, it was my last real connection to the natural world as a human animal.

This is what I would like to see future research into autism go: what are the adaptations in the autistic environment that are the most advantageous for people with autistic traits, and what it is we can control and adapt to for positive changes in our life.

The older folks that are surviving well have already done it. They should have some insight, on what works and what doesn't.

I worked for the military for over twenty years, as I look back I feel sure, there were many of us walking the walk, some in areas we weren't suited for and some in areas we were. All that counted was we survived.

Personally, I'm glad I wasn't diagnosed at age 4, as I likely would have been, if I was born today. It was a challenge, but I loved every minute of it. Adversity took me places, I doubt I would have gone, without it.

I think I can answer this one... And does the word Megalomaniac mean anything to you?

I have several new articles out, including a blog for "In Their Own Words," found here...

http://blog.autismspeaks.org/2011/09/29 ... /#comments

My column should appear on Wrong Planet later on today or tomorrow.

Very excited!

You are? Is that by your own estimation? I see that you spell very well. You are enthusiastic and you have a good handle on sentence structure, grammar and syntax.
What you do not seem to do is to research what you are writing nor do you seem to handle constructive criticism. I personally find your content objectionable too but that is neither here nor there.


So they ignored you? Were you ignoring them? Did you listen to ANY of their concerns or did you simply thank those that were humouring you with headpats and object and dismiss all that disagreed with you.
That is ignoring and that is precisely what you are accusing THEM of doing.
As to having a lick of common sense, let’s try this.
Research will show that the organization Autism Speaks have been viewed in far from generous terms with Autistic people and indeed further research will show that AFF and Autism Speaks went head to head with each other when Autism Speaks decided to have their group of lawyers threaten to sue a 14 year old AFF member.
A research writer would have known this from base research. You did not.
Autism Speaks has been shown clearly on AFF’s site as not someone to be entertained or considered and “well researched articles” were listed on their blog which would show an entirely different appreciation to what you had and sought to frame your interview with.
You read this though didn’t you (before committing to “open up communication channels with them”)? No you did not.
For a better read and a more critical approach to Autism Speak's articles read Bloke's articles on AFF's blog site.
Sorry I read it and did not relate to the person in this nor the negativity and desire “for their money back”. I am sure it portrays Autism in a palatable way for Autism Speaks, so that is all good…or something <Facepalm>

Don’t hate me for pointing out uncomfortable truths. If you have any aspirations to be a writer you must learn your trade and actually learn from short-comings so that your product is palatable to your audience.

I did post in that thread that JER can probably lobby on his own behalf if he is all that and a bag of chips. Your lips appear to be stuck on John E. Robison's backside. Try to come up for air once in a while.

The cease and desist letter sent to the 14 year old girl, was not a threat to sue, it was a cease and desist letter. She complied, with the cease and desist letter; the organization stated they never threatened to sue, because it was not necessary.

Autism speaks, side of the story is they didn't realize the individual was underage, and their lawyers stated there was copyright infringement.

The site was eliminated and there is no way to determine at this point if it met the standards by the fair use act, or not.

The 14 year old girl, never presented any evidence, other than her interpretation of the cease and desist letter.

Those are the facts and one can interpret them for themselves however they like, but it is not as simple as the girl was threatened to be sued.

In another instance a young man insisted that Autism Speaks, censored his ability to make Tshirts with a reference to Autism Speaks. Although the story still widely circulates, he clarified years ago, that Autism Speaks did not censor his ability to make the Tshirts, instead it was the T-shirt company that took the action to censor his ability to make the T-shirts because they thought that Autism Speaks might not like it.

The reasonably offensive actions that the organization took where in the creation of the "I Am Autism Video" along with other misteps that the organization has taken. Sending a cease and desist letter to a 14 year old girl, was clearly a mistake, but if they did not understand that it was an underage individual, that's what it was, a mistake. In the interview they admitted to making mistakes, and apologized for offenses taken from those mistakes, that were not intended to hurt anyone.

The questions in the interview were selected by members of AFF, not by the writer himself. The questions produced answers that the organization is not funding research into a prenatal test and clarified their position of a cure, as one of co-occuring medical conditions associated with autism. They also accepted part of the neurodiversity view that the positive aspects of autism should be celebrated, along with many other clarifications.

Whether one wants to believe them or not, is up to individual preference. In the future if they do not abide by what they said in the interview, they can be held accountable for their words, presented by the vice president of their public relations department.

The interview did produce significant results in groundbreaking clarifications on autism speaks positions on points that were understood differently before the interview. If the organization complies with what they have stated, it will definitely be a change in the organization, in the direction that people in the autistic community have desired.

There is also an open line of communication for clarifications of anything in the interview that people question, or further issues with the organization that can be addressed. Whether or not people pursue that or not, is up to them.

Up to this point no one has gone to the trouble to get public responses from the organization, on questions and concerns that have been kicked around for years in the autistic community.

Tambourine man was the first person brave enough to make the effort. Yes, brave, because his positive effort met a tidal wave of personal attacks that were not warranted for simply asking the questions that were provided by his peers, in a neutral manner.

It was surprisingly easy to get answers, all it took was someone brave enough to ask them. If more questions need clarification or answers, the action is simple; ask the additional questions; use the open line of dialogue.

Trademarks come with an obligation to defend them, or they become invalid and lose the right to defend, if they pass on early other use.

The required defense is a Cease and Desist letter. If the person does you lose any right to go after them.

The usual is License. For example I can produce automotive items with a Ford Trademark, Like the script F, upon payment of $5 for a License.

This protects the Trademark.

As often seen, the disclaimer, "All Trademarks used here belong to their respective owners."

A Trademark is Property, it can be lost for Improper use, it can be lost by neglecting to defend, or becoming generic, Asprin, Cellophane.

The goal of a Cease and Desist Letter is to show that proper defense was maintained, something needed to fight charges of abandonment.

USC 35 clearly spells out required Trademark use and defense.

All that was being asked of the 14 year old was to not take the property of another. As a parody some use is allowed, as long as there is a disclaimer to the effect that Autism Speaks is a Registered Trademark, owned by Autism Speaks.

The Law requires that improper use be pointed out, or all future defense is lost.

All that was being asked was to acknowledge the rights of the property owner. A disclaimer would have brought it under Fair Use.

So someone should do research before making charges broadly on the internet that Autism Speaks is a big meaney! USC 35, look it up.

In the second case, the T Shirt, I was involved, and contacted the producer. From what he said there was Improper Use of a Trademark to restrict business outside of the range of Trademark Protection, which if proven automatically cancels the mark for all time.

He did not reply, and later I learned that it was the shirt producer that asked if his use fell under Fair Use, or License. Autism Speaks was never involved.

AFF and others have been claiming both cases as evidence of the evil intent of Autism Speaks for years.

As USC 35 requires the defense of Intellectual Property, notification of misuse, it was the 14 year old girl that took the property of another, without permission.

The shirt guy was never a producer, as he was asked for a legal right by the shirt printer, then made a public claim that it was Autism Speaks that took legal action.

Both of these claims are false, and amount to slander, libel, being published in a worldwide medium. As AFF is the documented source, they are guilty, have been dragging an innocent name through the mud for years, making claims that have no basis whatsoever.

Where neither of the original claims lead to a Civil Action, the misreporting of them on AFF is a Criminal matter, and Civil, where action to protect the good name and public opinion of a Trademark Holder is called for.

Slander and Libel are very serious charges, and it would not be hard to get a Judge to issue an Injunction to remove the offending matter, and to shut down AFF until the matter is settled in the Courts.

Autism Speaks has not done this, because the anti Autism Speaks minority are their own worst enemy, and broadcast their ignorance of the law, USC 35, decent behavior of reasonable people, total lack of research of their "facts."

There is no need to discredit people who do it all on their own. Shutting down AFF-ASAN would leave the Tin foil Hat Set wandering around. It is better to leave them as a pole, the far uneducated end of autism discussion, who do not depend on Law, Facts, the Rights of Others, and have only imaginary complaints.

They do it for attention, why give them what they want?

Slander, Libel, Terrorism, Extortion, are not much of a Social or Political base.

Apart from a few people, my writing has gotten an overwhelming positive response and I am SO blessed (hundreds of comments, shares, and likes on Facebook, many thousands of reads).

I couldn't agree with you more - I really don't know what all the fuss over my writing is about. I do believe I am an excellent writer (there are many everyday things I could never hope to do, so I'll own this one) but I certainly see no reason for the colossal response I've gotten.

Still, I will take what I can get.

The hundreds of comments from parents, siblings, and autistics have made me cry over and over again.

I really don't deserve all this. I have fought very, very hard, but I never expected my dreams to come true.