Autism Speaks gets Spectrum board member

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John being on the board has to be a good thing because either they'll have to let him participate or he'll eventually get fed up and resign. The resignation of the only spectrum person from the boards would be a PR nightmare for AUTISM SPEAKS, especially after all the heat they've taken for not having anyone. Unfortunately the areas where John will have influence are the areas the AUTISM SPEAKS is pretty good at, like fund scientific research, rather than actually helping people now, keeping salaries and expense at a reasonable level or advertising that doesn't inflame, depersonalize and humiliate they people they are purporting to help.

I just read the Autism Speaks press release and noticed that nowhere in it does it explicitly state that John Robinson himself is on the autism spectrum. We all know that he is, of course, but if someone was unaware of who he is then they may not realize the organization has appointed an autistic board member. Don't you think this would be something they would want to make clear?

And then the world ended

I think it is a wise choice for several reasons.

First, I have known people like the board. Having no life will get you into grad school, and post doc is total isolation. They may hold on to some sanity, but only within their narrow field.

If you think aspies have an isolation problem with special interests, imagine it can be a lot worse.

At this level they know everyone in their field, and worldwide that might be a dozen. It is the price of becoming really, really good at one thing, you live in a small world.

That locks their thinking into what labs, what up and coming grads and post docs, are available. It comes down to what might work, and that in the broad advance of science.

From that view it is easy to forget what the purpose was. Most scientific research does little, mostly trains more researchers to do more science, and real discoveries are rare. We do need that machine.

This is where one person who is from the world, who has lived a bit, has some insider knowledge of "Having Fun With Autism," and as a writer who as toured broadly, has a lot of other non science background information. It is enough to steer everything in the direction of real people.

Just the questions, Who will this help? How many? Can move the whole machine.

Their background gave them a view of Autism in locked wards, maybe as far out as Group Homes, but most of autism resides on the outside, living in the world, just as John, myself, and many others have.

Moving things a few percent for someone in a locked ward may not show at all, but it would be a big step to the old free range aspies. Change could be reported by the subjects and recorded by observers.

Everyone would like the magic bullet, at least the discoverers, but it would put the machine out of work. There is self preservation in science.

My best numbers say one in 10,000 in a locked ward, one in 1,000 in a group home, and one in 100, living in the world badly, more or less. So what group can research do the most good for the most people?

So one voice can change the whole direction of research. If you have a large problem and are not making progress, nibble away at the edges.

The second great thing is putting a writer in the middle, who will observe the best that science has to offer, from an autistic, differance in thought and perception. This also takes only one.

Leading Doctorates are a minority that there is no study on, and The Anthropology of Science that will come to the writer is a great study in some of my fields of interest.

I think it only fair, consider the numbers that lurk here to view the autistic mind in it's natural habitat.

While the social disconnect is well known, we are better at analyzing NTs, and they can learn our strange ways quickly when it comes to new tech, a patent, suddenly they can understand. It is only a general incompatability of patterns of thought, that can be bridged.

All prior work was based on how we were wrong. When we wound up on Wrong Planet, we find we are very much the same. A consistant autistic culture, communication, which can be learned. Different is much better than wrong. This science group does include Psychology, and they could make the big discovery. How our pattern fits with their pattern, is a good place to start with the locked wards, put it in the proper format. Mac and PC can, why not people?

We are in this together and the common good calls for working together.

...!

John - my initial thought was "traitor", someone who is there only so they can say they have a spectrum guy.

But I believe you and that you fell as most aspies do regarding Autism Speaks - I just hope you will speak up, and when the time is right, leave. I don't believe you'll get what we want. I do believe you can try your best, and perhaps get some. I just hope you'll be brave enough to end it once the ridicule you and ignore our requests.

Meanwhile, good luck to you, and thanks for your good intentions.

WTF BOOM
[youtube]http://www.youtube.com/watch?v=OoOZhCQVvGU[/youtube]

It is possible that this is just a token appointment in response to the criticism that there are no autistic people on the Autism Speaks advisory boards; it is also possible that this is a first step in correcting that problem. Only time will tell. I am willing to give them the benefit of the doubt.

I do hope that Johnrobison will find the time to keep us informed on what is happening there. I doubt we ever had a member of Autism Speaks here at Wrong Planet before, let alone a member of the board.

I should note. This is the advisory board. Advisory boards of organizations are rather weak entities.

The main board for the orginization is where there needs to be real representation. On top of that there should be significant representation within the staff of the organization itself. This is how other disability organizations work, and we should not demand anything less.

1. Significant representation on the governing board (the one that dictates how the organizations money is spent)
2. Significant staff representation at the senior and executive staff levels.

Basically representation within the key decision making bodies of the organization, not just the advisory board.

Which while is a positive step, it is a rather weak one.

I should note. This is the advisory board. Advisory boards of organizations are rather weak entities.

The main board for the orginization is where there needs to be real representation. On top of that there should be significant representation within the staff of the organization itself. This is how other disability organizations work, and we should not demand anything less.

1. Significant representation on the governing board (the one that dictates how the organizations money is spent)
2. Significant staff representation at the senior and executive staff levels.

Basically representation within the key decision making bodies of the organization, not just the advisory board.

While it is a positive step, it is a rather weak one.

Autism Speaks is not a Disability organization. Before making demands, read their charter, they exist to raise money for scientific research.

All staff positions are by qualifications, not quotas.

Advisory Boards are broad groups that look over all submitted proposals, then the best are forwarded to other boards.

Do you think you should be on the Medical Review Board?

The Governing Board of any Corporation has set roles and goals, staying within the law and solvent.

Neurology has nothing to do with keeping the Corporate Status.

They have donated $134 Million to Science, and owe only their doners and the IRS.

I have reviewed their filings, I find them clear, a model of Corporate Governance.

Everyone involved is highly qualified for the job they hold.

Nothing in the Autism Speaks Charter has anything to do with Disability Rights.

Your reasoning leads to, The National Institute of Mental Health should be staffed by the mentally ill.

There are several Disability Rights groups, staffed by the disabled. Autism Speaks is not one of them.

Their mission statment is clear. "Raising funds for Scientific Research related to Autism."

They do a good job of it, science has advanced, and science cares only for advancing knowledge.

Autism speaks holds itself out as a Disability organization, NOT a scientific one. They are not exactly holding themselves out like the American Cancer Society or American Lung Association. While they may have "scientific research" goals, thier predominate goals include "curing" autism, like it where a disease. I will say even the ACS and ALA are probably better run organizations in the fact within thier structure they have people who are cancer survivors or suffer from Asthma and respitory issues. Do they involve themselves with funding scientific research, absolutely, but in terms of public education, lobbying and governing, they involve directly people who have the issues.


What they are is a charitable organization dealing with autism. That includes alot of marketing and education that paints a tilted view with regards to autism spectrum disorders.

I am a very bad person to argue this point with inventor, I have a pretty intimate understanding of how charitable organizations work. In fact I have a far better understanding than you do. The point being is that I am critical for the lack of involvement because of the fact autism speaks still represents an overall negative image of ASDs. They are doing education without including the perspective of people who have autism. Until they operate more like every other disability (or for that matter specific medical ala american cancer society/american lung association) organization, which make no mistake they are. There is also a model for governance with regards to these organization that mandates inclusion of people with said thing being studied.

One little person will not change this. Until Autism speaks changes thier marketing away from "lets cure autism" to one that actually takes into account people with ASDs the hostility will continue. You can claim "scientific research" all you want, but it does not solve the underlying problems with regards to organizational mission, goals, messaging, and representation. The very fact is they should not be called "Autism Speaks" when in fact they are predominately an organization with one person with an autism spectrum disorder.

Also with regards to advisory boards. I am well aware what they do with regards to charitible organizations. They are there largely for either "technical expertise" or fundraising.

My gripes still stand. There is an overall lack of representation in the organization, thier messaging is offensive, their pro-cure goal is offensive, and I can go on.

Also wouldn't this money for "scientific research" be better spent in educational efforts to school districts, in funding occupational and speech therapy clinics, career assistance, anti-bullying efforts, etc. These are all things other disability organizations provide, but we have no equivelent of. The truth is the hundreds of millions that autism speaks wastes on finding a "cure" and for scientific research may actually be better spent in providing services for people with autism, you know actually living up to thier name, and providing some type of organized voice for people with autism. The very fact is the UK has an organization like this already.

The very fact is Autism Speaks is not holding itself out as a scientific research organization. Especially with a name like autism speaks. It is a charitable nonprofit, and one that does more harm then good for people with Autism Spectrum Disorders. Largely because they are A. parent driven, B. More focused on finding a cure than actually helping people with ASDs.

If they were more about research, they should call themselves "american autism research society" NOT autism speaks. They would also end thier slanderous and insensitive marketing. They should hold themselves and market themselves in a way that would only be about research, not curing autism, but understanding its causes and possibly providing better therapies. I would not have a problem with them, but the way they represent themselves and market themselves is extremely problematic.

I agree.

They did start out to find a cure, back in the dark ages, five years ago. The result is they have shown there will not be a cure.

The differance is, taking direct action, direct support, or funding the study of what direct support would work best.

As a fund raising non-autistic group they are not qualified to pronounce what action should be taken.

They are now funding those studies.

Everything you say about treatment and accomidation is true, but none of that will work for those who are fully disabled by autism. There the medical and scientific research must continue.

Just a few years ago Autism Speaks was saying Asperger's is not Autism.

They have changed, they now are coming to understand it is all autism.

One thing has not changed, they do not act directly, they fund.

After the studies come in about what works best for the milder cases, then we will have another view, and that will not, should not, be Autism Speaks. Nor should it be government.

In my short time on WP I came in when the model was shrinks giving anti Psychotics for off label use. People were being drugged for no reason other than there was no treatment known.

That has declined. There were also some major federal actions, the largest fines ever, to stop the pill pushing. It had no medical or scientific basis, it was done to make money. It harmed people.

Change came from research, some of which was partly funded by Autism Speaks

Of the Autism Organisations, most are street gangs with no plan, other than to claim leadership. They do not have a program of speech clinics, career assistance, or services for the autistic.

I agree these things are needed. But five years ago the answer would have been drugs, recently speech therapists would have claimed they could fix everything, and none fits the reality.

There are three classes of autism. One in 10,000 will never develop, must be controlled, and that for life. This was the marketing of Autism Speaks, and it still exists. This group costs the most.

So I think it was proper for Autism Speaks to focus on the worst part of the problem first. $134 million dollars later, no change.

One in 1,000 will spend their lives in assisted living. They also cost, and the research has also had little to no effect on their lives.

One in 100 will live in the world, everything you say is needed is true.

Only by providing those services to children can change of outcome be shown. It does work, it is cost effective, and for many that would have gone into assisted living in the past, it is enough for them to join those in the world.

All of the Autism Speaks research points to this fact. The only place change is possible, is intense therapy in children, and we cannot tell who is more or less autistic, but treating them all leads to the best outcome.

Step one, identify the problem, and what works.

Nothing works on the first two groups.

The third group it does work, but there are 3,000,000 in the US, and for all the money Autism Speaks has raised, about $135 per child. over five years, $25 per child, and there are a generation of untreated old children.

Parents report spending thousands on their child and getting results.

It works, but even a program starting with the young, at three, will cost several thousand times what Autism Speaks has raised.

From the view that it is a disability that can be treated, like glasses, it should be done.

From the view that lifetime costs can be reduced, it should be done.

From the view that the autistic will contribute to the economy it should be done.

Progress, now we just need the best developed scientific plan, tested, studied, people trained to train those who will do it, and when all of that is lined up, several billion dollars a year.

Within reality, from everything we know, this is the only cure for autism. Over time it will reduce cost, increase productivity, and it is the right thing to do.

Autism Speaks is developing that plan, and will use their public relations ability to get the funding.

Even then, five years from three to eight will use up all funding. It will be a fight to get that much.

Nothing much can be done for the adults. The lives of all future autistics can be changed for the better.

It is not all and everything, it is the only plan possible, and only Autism Speaks has the status and connections to get it funded.

They are a parents driven organization. millions of people can bring the political pressure needed to bring change.

As for ASD adults, you are on your own. It would cost another several billion a year for the services you want.

The reality of politics and economics will not go away.

I would vote for the Autism Speaks plan for the treatment of three to eight year olds for it is the best thing we could get.

Twenty years of that and there would be a lot less need for the services you want that will never be funded.

Something can be done for the adults, Wrong Planet works, there will be more, but it will have to be what we can do for ourselves.

We are all in autism together, and we should all support what can be done that will provide the greatest good for the most people, even if it is not us.

Early childhood intervention is one thing we could all agree on.

Therefore, the appointment of John Robison is completely political, thus defeating your own arguements. He is NOT qualified in any field of scientfic research. He has two qualifications... His work as a research subject, and being ASD (which you argue has no bearing).

I am sorry to inform you that you have mis-quoted their mission statement. Their mission statement (pulled directly from autismspeaks.org) is:From this mission statement, they have several aims. From the research side, they hope to find out why we're messed up, how to keep people from being messed up, and how to fix those who those of us who are already messed up. However, as you yourself say, "As a fund raising non-autistic group they are not qualified to pronounce what action should be taken," yet they do not feel the same, since they also "aim to bring the autism community together..." and to "urge the governement and private sector to listen [to them]." They also reference "autism spectrum disorders" in the first line, yet the rest of the mission statement specifies Autism (nice little double-speak trick on their part).

I would attempt to wax poetic about advancements in treating specific traits, therapy techniques, and effective assistance programs, but you've already provided plenty of rope to hang your own arguements, and helpfully provided the tree and attached the noose with "as for ASD adults, you are on your own."

Feel free to continue making completely incredulous pronouncements, however, please refrain from "misrepresenting" facts.

John Robison is a Writer. His work has spread Autism Awareness.

He seems on a forever speaking tour of book promotion and spreading knowledge.

As the mission statment you posted said, Funding and Public Awareness.

John Robison ranks very high at spreading publiic awareness, hence is an expert in his field.

They go on to say, " Bring the Autism Community together as one strong voice to urge the government and private sector to listen to our concerns and take action."

They have, Parents, Universities, Medical Groups, Government, Corporate, and the Arts and Media.

They also have support from within the ASD Community. As an adult I do not think there is anything for me in it, but I support what might be done for the future.

Now on the other side we have a half dozen anti-cure people, who protest in the streets, and make claims that all of the money should be spent on them.

Please do wax poetic about how advancments in treating specific traits, therapy techniques, and effective assistance, could benefit you now. I lack any knowledge of anything showing results in adult ASDs.

If anything works a lot of us here would like to know about it. Everyone but you seems to hold the view that Autism is a lifetime untreatable condition.

The only provable results have come from early childhood intervention, and there are results.

Nothing has worked for adult ASDs, except getting older, adapting to the world, on their own.

With limited funds, it makes sense to focus on the place where there are proven results, early childhood, and change the future for all new autistic people for the better.

Autism is a great social expense, and all the funds raised by Autism Speaks would not pay for one day of it.

Adults do have support, access to education, vocational training, and therapy. It has not worked. Adding another layer would not work any better.

The Neurodiversity Self Advocatcy Acceptance and Entitlement Millita is self discrediting.

That is a fact.