"Autism Speaks" Response to Autistic Input

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Looking at the history since day one against Autism Speaks it has been vindictive, mean and mal-interpretative. What I'd like to see is less of it. When I am demeaned personally, called names and put down in general I get fired up. Doesn't mean we should be more reasonable with one another but if you want to persist the vicious cycle because you have been the one doing it and including using disrespectful words like the R word that's on you. There are several communications in which I've tried very hard to simply be friendly but those that perhaps don't desire it for the sake of a rigid point of view don't want to be friendly.

Again though that's just my observation being an insider to some of the movements to investigate.

For those that are debilitated by the more severe symptoms of Autism, like those seen in Kanner's type Autism, they will need support from somewhere to survive. This statement was presented in the context, if the government loses it's ability to provide subsistence to the permanently disabled, a recent concern here, in the US, and one in some other areas of the developed world as well.

That may not be your personal concern, because you are not one of those in that group that numbers in the hundreds of thousands that will enter the adult world in the next few decades, but the suport will have to come from somewhere, if those permanently disabled autistic people are going to survive. Whomever it is that provides the support for them to survive, will likely be seen as a friend to them.

I doubt Autism Speaks will be heavily involved unless the government loses it's ability to provide subsistence support to the disabled. If, and when that happens, it's hard to say what the rest of the circumstances in the country will be; the laws of the jungle with an overpopulated group of primates may result. That's an issue for a topic in PPR, though.

I have no problem. But the issue I have is that no person should have to stay dependent and people will quite rightly find objection to that. And anyways your original post did not say what you you now say it was supposed to mean. It sounded more like Autism Speaks wanted to hold the Sword of Damocles over these people's heads.



I think it would not be in your best interests to start throwing out imaginary figures of how many autistic people will need your help. I have heard from many of my own kind that Autism Speaks is a community that likes to overstate its figures and having heard what you are saying I believe that is very much the case. If you take even a cursory look then you shall know that these autistics who 'need' help are actually much fewer in number than you say. You are simply making a social environment where normally capable people feel pressured or take the easy option or lose their self-respect, thus making them take this 'support' by making such white lies.



Every issue must be debated everywhere. Otherwise all we get are stolid cliques. As for support I feel that many will not turn to autism speaks willingly. It is wholly opposed to the idea of autistics actually speaking freely. It is more like an organisation of desperate parents and relatives who are trying to 'fix' their children and they cannot understand or contemplate the alternatives. Even worse is that 'if and when' speak: You sound downright sinister.

Social persuasion designed to derive self-reliance is good however the future will determin the actual figures. I'ts good to be prepared.

There's no dispute of that but the fact is there is no consideration of that here ci. The fact is that this guy is distorting the picture, furthering an ideology at the cost of the truth. I am not advocating complete self-reliance for everyone. The afflicted of us do need help but this lumping together, exaggeration and distortion destroys all good work in its path ci.

I can understand what you are saying but I will see what Mr. AHogDay says. I think he is trying to help others simply realize a need is coming vs. some others that don't take it seriously at all. There is an absolute truth which is not yet known.

3,000,000 autistic in the US, about 10% Kanner Type, who will need lifetime support.

Perhaps they could be released back in the wild, to graze the Great Plains as nature intended?

The other 2,700,000 can each advocate for their view of how the world must change to please them?

It is good to see the whole ASAN Manisfesto and Action Plan in one place.

Are you inferring I am an ASAN. I despise being called an ASAN. Also what is kanner type? What is the other type aside from Asperger type.

Not you ci, All of your agendas go far beyond lack of vision and plan shown by ASAN.

I see you on the other edge, where only 10% hold jobs, and you are working to increase that number.

Acceptance comes when you accept the world as it is, and work with it.

The ASAN Plan is demand the world change, because they said so.

The figures of close to 400,000 I provided were from government sources that follow the children that have severe developmental disabilities with Autism. The figure of 500,000 was provided in the research presented here by the individual that presented information on the disability rights movement. These are commonly understood facts, for those that study autism. These statistics are government provided and have nothing to do with autism speaks.

I only stated it was possible that people might rely on support from autism speaks if social programs fail in the US; it's likely they would need the combined effort of many organizations to survive if we lost government social programs.

Many of these people require 24-7 support, there is no way any private organization is going to meet the same needs as the government meets, alone. Zeraeph suggested 300,000 per person for care, but even with my evidence at $70K to 80K per individual, that is billions of dollars. As large a revenue generator as autism speaks is they could only support a relative handful of these people, if they chose that as a future mission.

The PPR discussion would be the probability of anarchy and the laws of the jungle resulting from the discontinuation of social programs. I'm not suggesting anyone can't discuss it here, just that it is what is normally a topic of discussion in the PPR section. If you would like to discuss it we could probably get much more input in the PPR section on that specific topic.

Please remember, I'm only suggesting that Autistic people offer constructive criticism to the organization to improve lives for autistic people. Just a suggestion, that doesn't require any financial support or significant involvement with the organization.

Otherwise, it's easy enough to forget the organization exists, but some people do want to offer constructive criticism to improve the organization.

This is so stressful. Wondering what may go wrong next with the economy and what supports do exist could become more limited or go away. I believe allot of money has been used in the past for what could have created a more stable system and also disability opportunities on into the the future. I think I have to learn to trust some kind of people better even though this kind of talk creates extreme worry. Years back I can recall all the talk online and it was parents vs. the aspies as portrayed by aspies and establishment vs. the aspies as portrayed by aspies. While I never felt like I was this aspie idea nor wanted to I think it's not really the answer for myself and some others in my and related positions. It's a different kind of justice pursuit and heightened survivalism as opposed to simply disputes over words and image of autism respect.

I am not an expert at those numbers I just know what I see around me, about myself and what professionals tell me.

By Kanner Type I mean the 10% of autism that needs constant care. Without going into the details, people who can not care for themselves, at all.

Another 20% can live with less support, Group Homes, but can go out in the world and find their way back.

The next 20% can live independently, if supported, income, some advisors.

Above that, and below the 10% with full time jobs, are 40%, Aspies mostly, HFA, that are autistic, but not considered disabled. They work sometimes, get educations, but never earn much, compared to IQ and education, and do not last at jobs, living a hit and miss part time life. I know it well.

Europe has a broader view of support, from what I hear the 40% are given economic support. They are seen as unemployable, but given food and shelter.

America ignors them. They have to get by on their own. Unless they find a place in technology, or at a university, they are treated like it is their fault that they cannot find continous employment.

In many ways they suffer the effects of autism to a greater degree than the more affected who do get support.

I was one for a long life, and learned of autism on Wrong Planet over the last few years, it fits my life, and is something I could have done much better knowing of. Five years ago I would have denied being autistic.

Being a large healthy white male, obviously intelligent, I was refused any support, like even food stamps. When I asked for some minor help, I was told I was a lazy no good, drug addict gaming the system, and that is what Social Workers were there to prevent. My country gave me starvation and insults.

My social life was not much better, for like here, there is always someone wanting to jump on anything you say, who is seeking a place where they can get away with it. This produced a lot of conflict. We are also seen as safer people to steal from.

Living in the shadows of life has it's problems. I became reclusive, detached, isolated, and it was better.

Becoming an observer I saw what few do. The jails are filled with Neurotypicals, you name it, political corruption, neurotypical, the Mafia, neurotypical, White collar crime, Neurotypical, it is what they do.

The current economic problems could have only been created by Neurotypicals. Congress is pure Neurotypical.

While I have come to distrust them, with cause, one small group is connected to me through autism, their children, and I hold an expert view of their possible future. We could have common views and goals.

They are coming to understand that nothing can be done about autism, well not much, but a lot can be done for quality of life.

Unlike their Neurotypical politicians, and everyone using everyone in Neurotypical fashion, and they do all know it, we are people who cannot change, will not change, and have a strong and never ending interest in autism.

We are their best hope for a good life for their children.

So I support Autism Speaks, all the parents, and offer any assistance I can. My hope is that the austistic but excluded, can be joined with their hopes for their children. We do have common problems and goals. Over a million people need something, some future.

If what you say resembles some fact of reality at least my suggestion is fairly simple. End the bickering, drama over small issues and see promoted constructive innovation. I cannot stand not finding solutions and the idea of siting around and complaining about it is to me ones own worse enemy as well as others. I have supportive living services, would qualify for a group home, cannot work in the mainstream as it is and although their are barriers I know there are possibilities to resolve at least some of it.

I simply do not see the aspie and in general the self-advocacy movement moving forward with a good potential of improving one anothers quality of lives. The people without autism seem ot have more solutions but not quite enough for the larger big picture problems. I could sit and wait to see if others happen to create change but somehow like the vast human history so far we still got allot more that can be done. It doesn't have to come down to government handouts but I'm talking about mainstream participation and gainful solutions.

I don't particularly care if you give me a made up figure or percentage. If you can give me the sources then I would start listening. Until then it would frankly be safer to take you to be as reliable as you have been so far at face value ie: Not trust you at all.

You stated before that you don't live in the US; so many of the statistics provided here don't apply to where you live. Here is a source that Lau provided earlier as a reputable source of information, the National Autistic Society, in the UK:

http://www.autism.org.uk/about-autism/some-facts-and-statistics.aspx



500,000 people in england are estimated to have autism, as compared to close to 3,000,000 people in the US. These are only diagnosed cases, many more go undiagnosed.

As statistics show here over half of the adults in the UK have been without a job or acess to benefits in their life, and 2/3's report they aren't getting the support they need to meet their needs.

I have presented evidence in a link from independent research funded by the SAGE organization that has also been referenced by mainstream media in the US, that suggests that close to 400,000 developmentally disabled Autistic children will be entering the adult world in the next decade that will need support without the help of family. The numbers in the report are clearly sourced by government agencies.

I'm not sure what happens to people in England that don't have a job or access to services that have a disability, but here in the US, without family it can mean a homeless shelter, or life on the streets.

I also provided a resource earlier from New Jersey that provided government information that 8000 people there that are developmentally disabled including Autistic people have been on waiting lists for years for housing assistance, with only 229 people being placed last year.

The links are all there in this thread if you care to look at them, along with many more links to other reputable sources, related to the issue of Adult Autistic support and costs associated with it.

These numbers are not my personal opinion, they are hard cold facts presented by third party sources, that have researched the issue.

Zeraeph dismissed them as meaning nothing, most reasonable people would not come to that conclusion. As she continued to dismiss them I provided more and more evidence to support the evidence I already presented, while she presented absolutely no links to evidence any of her assertions to refute the evidence of the third party resources I provided.

Review it if you like, all the links to the resources I provided are still here.

Yes, and the solution to unemployment, poverty, and homelessness among people with disabilities is not to put them into institutions, or sheltered workshops where they make a fraction of the minimum wage.

A lot of people with disabilities who are currently unemployed possibly could work with the right accommodations, maybe not full-time in all cases, or at least volunteer in the right environment. We need to be moving in the direction of ensuring that this happens. It's better for autistic people and for society as a whole.

Those statistics are interesting and potentially enlightening, but they don't provide specific information on how many individuals need what services. I think we're all in agreement that more services are needed, certainly. But I'm not sure I trust the private sector to do it. People's rights and well-being needs to be the top priority, not profits.

The assumption that "cure and prevention" is the best way to solve the so-called "problem" is, IMHO, not only incredibly wrong-headed and unethical, but also based on a potentially faulty premise. It assumes that cure is possible. I have my doubts, especially if we limit our purview to the immediate future. Does anyone seriously believe that a cure for autism will be developed within 10 years? How about 20? 50?

Meanwhile, the $300+ million that is being spent (both public and private) on autism research annually could go a long way to put services into place right now.