Posted This On Autism Speaks Facebook Page

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I'm assuming statement #1 is statement against abortion and I respect your right to that belief.

If statement #2 were true everyone that ever mentioned anything negative that was a contributing factor to a woman's decision on abortion would have blood on their hands. That's alot of gynecologist blood, and internet blood also.

If Gynecologists didn't exist more women would have children with Down's syndrome. Do gynecologists cause down syndrome deaths and harm down's syndrome children?

There is no prenatal test for Autism and none on the horizon at this point. Autism Speaks Exists, and are causing no Autistic Deaths. Please tell me you don't really think Autism Speaks is causing Autistic Deaths.

It's one thing to say that factors contribute to a woman's decision to have an abortion. But the only thing that causes the termination of a pregnancy is an abortion procedure.

Uh... Sorry for the interjection but little update here... Autism Speaks pretty much offered me whatever position and/or job I wanted and had time to do. Research advisory board (like John is doing), honorary board member (I informed them I was not interested in quitting my day job) , local and even possible global conferences. This is a company that is really willing to rock and roll with this autistic person. I was actually mega impressed with how open and welcoming it all was. I hosted our regional director at Intel and we actually had a very pleasant conversation. He also tremendously enjoyed the walk around one of our giant campuses. We discussed all the "hot" topics and my views align quite nicely. We laughed about the concept of a "cure" ever happening versus research leading to more understanding, etc..

I haven't committed anywhere yet and do not intend to for some time but this is more exciting than anything I have seen yet. Think of it... I would have the chance to get MEGA exposure to parents and kids through this group. There was not any "flinching" at my presentation topic about advocacy including the misnomer that social skills training is good training for every application. He agreed with my views on that in fact. And to go another step... think of this perfect possible alignment... Intel (the greatest technical minds in the world), OHSU (the greatest medical minds in the world) and Autism Speaks. What if we married these groups? What TA can we invent that might make all of our lives better? The possibilities are really fun to think about...

This week has been surreal for me with advocacy work. People are standing up and listening to me and I am affecting change in some really cool areas. I have email from a local psychologist who tells me that the world needs me and that I am giving a voice to ASD. She says I can Language the challenges of ASD that most on the spectrum cannot and in a way that allows her (and other NTs) to take the ASD's perspective. So.... Now I hafta figure out... How do I make the biggest impact? How do I use this skill to help the most people?

Still don't know the answer but just want to contribute to this thread RE Autism Speaks that this company does not at all have issue with all Autistic people who want to join them or have a voice or serve on boards. They have been nothing but great to me as an openly autistic person. Perhaps if your messages are being deleted they are disrespectful? Perhaps if you are not getting response, you are the reason not them? Idk...It seems to me that they are simply looking for like minds and talent to join them as opposed to people who have completely differing views.

That sounds great, I'm sure you will be able to present a unique perspective based on your interesting life, as one not diagnosed until later in life. Perhaps, if your experience continues with the organization you will be able to provide insight into some of the concerns expressed in topics like this, and in part serve as a bridge of understanding here, if you have time.

I think some of the questions would be how much input does the organization actually get from Autistic people in making decisions on research projects; are there plans to provide greater awareness to the public of the issues specific to those with Aspergers and HFA related to sensory issues in the workplace environment, the ability to find employment, acceptance in the work place, and accommodations needed.

Information on research for the best ways to provide diagnostic testing for people that don't have access to healthcare, and research for community support and advocacy. What is the actual outlook and estimated timeframe in the development of a prenatal test; an explanation of why they see copyright infringement as a threat to their mission; why they see further vaccine research as an important priority; their view on the concerns that people have with ABA; an explanation of why the salaries of their board members are at the levels they are (is it what is required to get the talent needed to run the organization); do they have a desire to have a closer relationship to the ASAN organization; why genetic research is so important, other than finding an actual cure or prenatal test (you've already given some insight there); there reaction to those that feel like they spend too much funding on research and not enough on actual day to day support programs for people with autism.

You have been involved in some of these topics and can probably remember more questions and concerns that have been brought up; but I think it is evident that there are some that are looking for objective answers to these kind of questions.

I don't know if any of their representatives would have the time, but I think it would be very interesting if they participated in one of these topics. I remember a representative from ASAN doing that when a controversial topic came up in the autism politics forum and that was quite interesting.

Regarding this topic, I think the OP was hoping to get a response from the actual organization in posting on their facebook page; do they actually answer questions there or is that just a place for guests to discuss and relate their experiences with autism for support? And if not, what is the best method of correspondence to get a response. Also, what guidelines if any do they use in deleting posts from their facebook page.

Just some information here that might be useful in the future if you become more involved with the organization.

I am convinced that can never be the answer Draelynn. It would be like dating someone who abuses you and thinking you can fix it by marrying them.

You are still dealing with the same abusive person, but now you are really shackled to them, trapped with their abuse and villified by association with every abuse they offer to others.

You have an organisation shuffling over $60 millon a year between corporate sponsors and research projects just so that less than a score of people can have stratospheric salaries and a sense of their own importance (hiring the best expertise is no explanation when many of those in receipt of so much money have no expertise at all, and though that have are biased by vested interests and agenda of their own in Autism).

I deal with the front line of some Autism Speaks satellite organisations. Whenever there is a "new initiative" we go straight to "damage limitation" because there is never another appropriate response.

Do you realise the direction that they are taking towards adults on the spectrum is heading in only two directions:
*Controlled group residential settings with integrated employment.
*Dismissing us as needing no support at all and throwing us in the deep end.

It is a strict "either/or"...and, in the real world, both options take many of us out of the game.

With a lot of corrupt organisations the big problem is how to deal with the innocent people who depend on services they provide directly. At the last check, this is not significantly the case with Autism Speaks.

The only answer to Autism Speaks with a good outcome for Autistic people will turn out to be shutting them down. There is no form of compromise that will actually work, long term.

Good luck with that.

I think kfisherx has the more productive approach. Change comes from multiple directions. ASAN and others serving as the conscience of autism advocacy can and should illuminate problems. But a large organization like Autism Speaks will have to change from the inside. Unless actual illegal activity is uncovered, Autism Speaks will be around for a long time.

I find it amusing the amount of black and white thinking the surrounds this issue. Knowing that I tend towards such rigidity has taught me to always consider opposing views in detail. I have to be deliberate and make conscious effort to do it. Too bad that discipline isn't more present among autistic self advocates. I guess that's part of being autistic.

We did talk about much of this and I will summarize for you guys. Keep in mind this was a regional director voice and not the voice of the whole company. If I chose to go further I will fly East and meet with the "core" of the company to discuss further so things may change as I dive into the waters. But for the conversation yesterday here is what I learned. Autism Speaks has already pro actively employed some Aspergers folks and are very much concerned about the issues with all of the kids (their primary focus in the beginning) who are growing into adults. They have created a transitional packet to that end, are hiring adults and are actively brainstorming other solutions/ideas. I was welcomed to that effort as well.



I will try to hit these too. We discussed the "cure" and research thing. Net is we are NEVER going to find a cure in our lifetime. Nobody in science expects this due to the neurological component of the disorder. BUT the research that we do to that end can be very, very helpful to us. His opinion is that we will never be able to find 100% pre-baby detection either . (that is mine too) Of course that is from people very far removed from the science/research group. I can get access to that group too and will likely do that to dig deeper into the facts.

The salaries of the board members was an easy topic. They are commensurate with their BIOS and with their jobs. Autism Speaks is a 60 plus million dollar a year company (and growing). That requires a certain talent to run. You cannot compare the board members of Autism Speaks to ASAN and make comparisons. Apples/oranges. Here we were too aligned for me to dig. I "get" corporate America enough and am comfortable enough with those figures. In fact their board member salaries could not sway me from my day job.... Just saying...

The copyright thing we did not discuss but I know from working in large corporations about that. At Intel we protect our "brand" at all costs. Brand is tied directly to how well a company does. Coke and Nike (the number 1 and 2 brands in the world) are what they are today in large part due to their brand. This is something that anyone who understands business will understand without question...

They are more than happy/willing to align with ASAN and work with people who are willing to work with them. I also discussed this possibility with Ari. Ari was very black/white about this issue though and refuses to have anything to do with them. He cited reasons that made sense to me including his vast experience of trying to work with them or get into the organization. He gave me his perspective on the hierarchy of the company and how it works. So am not saying he is wrong. Only know that the from my perspective with interviewing both groups is that Autism Speaks has no ill will towards ASAN nor do they "fear" them. ASAN is pushing all the fear and controversy in this battle from what I can tell. The director from Autism Speaks informed me that in our region, for the walks zero protesters generally show up in Seattle and about 4-5 will show up in Portland so it really isn't an issue or big deal except that it pains the parents who are out there trying to do good for their children. In his opinion net is that the protesting efforts of these walks seem to hurt us more than help us. I know that ASAN has a completely differing opinion on this but it was interesting to hear this perspective. Similar thing with posting to forums etc. They try to keep things that would hurt the parents of the very low functioning kids and statements that are not helpful out of the picture. He does not have anything to do with the forums so cannot be sure but that was his opinion from my perspective. The interesting perspective here is how we "the autistic community or autistic self-advocates" seem to think that our opinions represent the autistic community. From what I can tell, we lack ToM too much (as a people) to really be objective about that. I hear all manners of opinions about how things should be for higher functioning adults on this board but that is about it. We rarely ever speak of our brothers and sisters who cannot speak. I wonder why that is...

I cannot even begin to claim to be a "voice" for an entire community or people. While I was able to waltz into a school district this week and give them a new perspective that will help (I think) my autistic kiddo, I do not know or believe I can do that for every autistic kid. Idk... Still too new to all of this but I am not of the opinion that my views and perspective on Autism is superior to everyone else's. This is counter to what my PhD (psychologist) is telling me but I still do not see it that way. I have much to learn still.

Building new experience and opinions every day right now and this journey has only begun. Perhaps I will carry this over to my "social skills" log as it diverges from the topic here.

Again my interjection into this thread is to show that 1. People like the OP cannot represent me and my opinion and being "autistic" does NOT make you align with me on everything. 2. Autism Speaks indeed is open to engaging and hearing from us.

Last edited by kfisherx on 15 May 2011, 8:50 am, edited 1 time in total.

I do not think our status as Autistics formally obliges us all to be hopelessly gullable?

At any rate, I hope not.

I don't quite see it that way. If I felt 'abused' in anyway I might. I feel there is a fundamental lack of understanding. I do not think that is a fatal error that is unfixable. I think that there is an NT culture at work here that truly feels it is 'doing the right thing' and that they truly cannot understand why those on the spectrum are against them. It is a dramatic, pervasive and fundamental lack of true understanding into how the autistic mind thinks. Unfortunately, the autistic community's major 'disability' is in communication - making our thoughts and feeling known and understood with words that NT's can understand. We very much speak two different languages. They do understand that. But making that intellectual leap from logical aknowledgement to true intellectual understanding is a much bigger barrier to breach.

Obviously, those that have tried to 'communicate' on their forums haven't imparted any wisdom or understanding. Sure, Autism Speaks knows some autistics are pissed but I think it is fairly clear that they have no idea why. When the message is only hate and aggression, they are entirely disinclined to bother trying to find out.

There is a commonly accepted ratio in marketing; for every 1 customer that complains, it is equal to the opinions of 10. It is widely accepted that most people won't bother to express their dissatisfaction yet they will spread their negative message to another 25-100 people (depending on which model you follow). So, if 100 people complain that is the equivilent to 1000 dissatisfied customers with a potential negative opinion pool of, upwards of 10,000.

If Autism Speaks sees 100 disgruntled aspies/auties it is the equivilent of, potentially, 10,000 who share their views. When they are dealing with an autistic world population in the tens of millions, thats not a percentage to concern yourself with. The problem with this reasoning is in the commonly accepted ratios. I do not think the autistic population follows that curve. I think it is more like 1 to 100 - for every single complaint there are 100 aspies that share the opinion but never make themselves known. This is a population known for communicating poorly and also used to going unheard when they do speak so many just give up trying. I do not beleive that Autism Speaks realizes how deeply the negative feelings run in the autistic community. That is just a gut feeling, not scientific in the least.

Understanding needs to come first. We do not have that. Nothing will change until true understanding occurs.

Awesome news!

Are you prepared to be the next Temple Grandin? Can I get a signed copy of your first book? Can I come to your movie premier?

Whatever you are or aren't doing, keep doing it! I don't really care how or why they are listening I am just overjoyed that - finally - someone is. Important someones who can actually make a difference. My only caution is don't burn yourself out in the whirlwind of this new found attention. I get the feeling you are type to push harder than you should for the sake of others. Be a bit selfish with your energy. Ration it wisely so we can benefit from it for a long time to come. Preaching to the choir, I know but a little bit of backup reminding never hurts.

It's like mom, nagging you about your homework...

Grinning like a fool at this news, still. WTG Karla!

Thanks for taking the time to share your insight. I wish you continued success in your endeavors to help people with Autism.

It's a shame Anbuend isn't around for this discussion. It would be interesting to hear her thoughts on how she thinks things are for LF Autistic people, and what other people think that she knows.

Are there any LF Autistic people already in this discussion?

^^^THIS^^^ 1 millions times!!

Let me give you the high level NET of my work this week on my first IEP intervention.

The kiddo I work with was under the MOST restrictive level of educational services available when I met him. He was in the MOST amount of "training" with a full time aide. He is also medicated to reduce his subsequent anxiety.

I advocated (and got) reduced schedule with some home school/regular school, no aide, permission to have a cell phone, a sensory friendly room, advocacy training instead of social skills training.. and several other things. He now has the most freedom a person can have to make choices along with a schedule that is more realistic to his abilities. The teachers are also undergoing "meltdown" training and awareness. The school psychologist is going to work with me to write the bsp and they want me to teach them the advocacy skills concept.

The NTs dealing with this kid were giving him everything they had to offer. before I entered the picture. I saw this. There were many, may great minds on this but none of them could see through all the DSM definitions and current paradigms into what is the person or the "whole child" versus the autism. I was able to do that for them. I did it in a non-emotional and completely logical way complete with charts/graphs and plans that simplified everything to a few core issues. The child's Mother wrote the following about what I did later in a facebook post... "We challenged the core tenets of the district's faith and actually converted them. Thank you, Karla Fisher." You see... it isn't a matter of people being "evil" but rather of them not understanding because we are not articulating in a way that is bridging the gap. I am seeing this over and over and over again. Dr. A (the psychologist who wants to tour with me) keeps reminding me how powerful this is. Dr B. (the one who does my social skills training) and I are working on yet another "break through" bridge in the concept of how NTs see relationships/friendships and how I see them. He is trying to teach his ASD kids from a model that may not even remotely ever work. This does not make him "evil" or trying to make us more NT... It makes him unaware just as we are unaware. It if fascinating to learn of the NT ways and also for me to spend the hours and hours trying to articulate and understand my own way. When I bring that stuff forward they get it and listen to it.

And THIS part is cool.

When I was speaking to Ari one thing stood out to me. He has extremely good knowledge of working through the govt. I felt inspired and awed by his abilities in these area and also felt humbled because I did not have these. But as he was giving me his viewpoints on working through this large corporation it occurred to me that he does not have skills in this area like I do. Navigating a large corporation is an exceedingly challenging thing and just like navigating through govt and getting bills passed takes years of understanding and effort. I gotz them skills regarding corporate world.

Last edited by kfisherx on 14 May 2011, 4:10 pm, edited 2 times in total.

Idk if I can be the next Temple. I know I could not write my own book. At least not now. I do not have awareness even of what I am doing that they are all calling "goodness" and am continually amazed at how these people do not think like I think and then how very different it is. My ToM is very broken in that respect. I also I know FOR SURE that I could never be John Elder. I do not associate at all with his book or experiences. He is one of those Aspies that actually have a very high level of awareness about social rules and norms compared to me. I can much closer associate to Temple's experiences than John's.

That said I have 2 NTs getting together right now to possibly write my biography since I am disinterested (and unconvinced that I am "special enough") to write an autobiography. In the meanwhile, my work will continue to focus on other people not on me or who I am. I will continue to break down the pieces and find the words/charts etc to communicate how I see things and help those who are open and willing to learn.

So if there is a book about me, I will be happy to give you a copy and will even scribble on it if it means anything to you. Until then I will be very happy if you guys just help me out here and in my social skills log as I break through ts stuff and try to make it do good in some way.

Again... No commitments or decisions at this time. Just sort of taking things one minute at a time right now...

wrt the nagging.... Keep on nagging. But don't worry too much. These NTs are really looking out for me and taking care of me. There are so many Drs in the group that if I crash into a wall it will be through a lot of stupidity. LOL! They are all telling me to be selfish too and are very patient right now. Of course if we commit to big conferences I will have a lot of pressure.... 1 minute a time for now though...

I have been thinking of her a lot lately too and really miss her. She said a few weeks before she went missing that things were going downhill for her (function wise). I want to visit with her and just sit next to her. If anyone knows where she is or how to reach her please PM me...

Wow, that's really encouraging! I have heard a lot of stories to the opposite effect, of them not accepting the input of people with autism spectrum disorders. I wonder if they've started to respond to the criticisms that they haven't been receptive in the past, or if it's just an independent evolution in philosophy. Either way, it's encouraging. I don't think *everyone* I've heard from before has been disrespectful, so I do think it's a change.

~Kate