"Autism Speaks" Response to Autistic Input

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I agree, in the US, part of the requirement of the combating Autism act is to research this and provide recommendations to better accommodate adult autistics in life. That's an ongoing effort. So far Autism Speaks is playing a small part in it; they have good resouces, so hopefully they will play a larger part in the future.

The private sector is not in a position to provide the services, they fund millions in services, but only the government has pockets deep enough to provide billions in support that is required for the care of some of the developmentally disabled.

In the US the government has most of the control for services here. If social programs were to disappear, I can only guess that the private sector might meet the needs of a fraction of those disabled, if our country doesn't fall to third world levels, if that scenario were to happen in the future. We might be looking for help from other countries, as they have sought our help, but if we fall, it doesn't spell good news for the rest of the developed world.

The government is looking far into the future, and will continue to provide the majority of the support for research dollars in this area. Research by other organizations like autism speaks are driven by the desire of parents to find better treatments, intervention and a potential cure. There is nothing unethical about funding and researching a cure and prevention of the debilitating aspects of autism that disable hundreds of thousands of people just in the US, and millions more throughout the world. For those that seek that mission and fund that specific mission it is their ethical right to pursue it and fund it.

What the government provides in assistance is determined by our political system, which many people consider as unethical. It is up to the voters to make the difference there, to influence politicans that more money is needed for services. Realistically, we'll be lucky to keep the support that is available now, that seems to be an economic reality.

I doubt a cure to Autism is possible, but we will never know if research provides prevention, or better treatments for the debilitating effects of autism, if research is abandoned. It's reasonable that people have different opinions on this, but it is neither unethical to try to help autistic people to better their life in improving their debilitating symptoms by funding research or funding services to help autistic people.

I agree that the 300 million dollars could go along way to provide services; the only way we have that I can see as autistic people to help that goal is to provide constructive criticism of the importance to politicans and private organizations, such as Autism Speaks. I see the same problem you do, I am just suggesting what we might reasonably be able to do to further that cause.

The major influence that effects the causes of private organizations are those that provide the funding support for the specific missions of the organization. As beneficial solutions to the issues are presented to help autistic people in the future, through research on the issue that is being done now, we can hope to further that cause by whatever constructive mechanism is available to us.

My idea at this point for what we can do now is provide the constructive criticism, if we are personally compelled to provide it. Any potential solutions to the problems we see can be provided if we choose to take part in that effort.

Realistically the government is going to be the big player in services; those in power have influence in government. We can choose to influence as individuals or join voices with others to influence, whatever we determine is the best personal route that matches our views on this.

Given the state of the US economy (hint: not good) I would think that donation driven, non-profit organizations are going to have the greatest say in what services are going to be provided to autistic individuals in the States. After all, the only way we are going to be able to solve our debt crisis is by raising taxes and slashing government programs... something that I dislike, but that I believe needs to be done, for the good of our nation as a whole. Of course, I'd prefer it if we'd slash our military and defense budget since it's what's taking the biggest chunk out of our nation's funds, but given the paranoia prevalent in America today, there's a snowballs chance in hell of that happening.

Congress will eventually discover that to make ends meet they're going to have to make major spending cuts, but when they do they are most likely going to take it out of social programs. After all, God forbid we reduce the defense budget by a single cent with those heathen terrorists trying to destroy us! (Note: that was sarcasm). I guarantee you that government funded programs to assist the disabled - including autistic individuals - are going to see some serious downsizing over the next few decades. This means that donation driven non-profit organizations such as Autism Speaks are going to pick up the slack.

I send this message to Autism Speaks... for the next few years the decisions your organization makes are going to have a great impact on the lives of autistic individuals - children and adults. Consider your values, your decisions, and your budget with the utmost caution. While you have made great progress in depicting autistic indivuduals in a more positive light, until you change your methods to match your message, it's not going to be anything other than a glorified public relations move to deceive your donors and constituents. I believe the best option would be to fund social programs for autistic children to teach them the skills they will need to function independently or semi-independently in American society, and programs to assist autistic adults in the working world. Whatever you decide, though, keep in mind that your actions over the next few years could dramatically improve the life of autistic individuals nationwide... and in the same respect, it could vastly decrease their quality of life as well. The world is watching, and waiting to see what effect your organization will have. What is your next move? Consider carefully.

My understanding is that there are plans to cut the defense budget, but I doubt it will be enough.

I think that's a great paragraph of constructive criticism for Autism Speaks. If you care to I suggest you email the suggestion to them or post it on their facebook webpage.

I doubt they pay much concern to this forum, or take time to interact here. Others have emailed suggestions or concerns, received responses and posted them here that have been interesting. I think it is likely you might get a response if you email them, but as far as I know the facebook page is mostly for support. Your suggestion might get some interesting feedback on the facebook page; there is nothing I see as unreasonable about what you state here.

Actually, the Combating Autism Act does not address adult issues or services to any great extent. Autistic advocates have lobbied the IACC for years to put more of its money into researching services, but alas. The CAA isn't part of the solution, but the problem.

I honestly think it's the approach some advocates do that might be ruining it for others. Not to name any names but mixing abortion politics in the mix is not wise, not wise at all. I have a meeting with my congressman's office in the coming weeks. If people told me online here I could bring it up and submit a consideration in letter form for official reply.

The review of the Act showed they have yet to meet the goals of research in this area, but they are still identified as goals that need to be met. Some research in this area is better than no research. The government rarely does anything I fully agree with. Healthcare reform, is the first real positive thing that I see that has been done for years, that has the potential to help some of those that are of less advantage, but I personally think it could have been done better in a perfect world.

The same applies to the CAA, we rarely get our individual desires in politics because an attempt to satisfy everyone is made, which is impossible to accomplish. Republicans blocked research into environmental causes, which upset many people; hopefully recent research suggesting environmental influence, will lead to improved decisions on research into cause, prevention, and treatment as well in the future. But, politics don't always listen to reason.

The CAA isn't the problem, it is the politicians that control it that are the problem. The country stands firm in supporting research into cause, prevention, treatment, and potential cure; with 400,000 children entering the adult world with disabilities that will require support and many more to follow, hopefully the adult issues will get the attention they deserve in the future, but it will require the support of those that support the current missions to expand the mission as needed.

As discussed before, I don't see where the additional money is going to come from. Lack of funds for service, motivates the government to research mitigation in every area possible. If and when science comes to the conclusion that nothing more can be done, it is likely the research for cause, prevention, treatment and potential cure will stop.

Until then we may have a better chance of influencing private organizations, than politicians. But the effort to influence politicians should continue because that is where the lionshare of support is.

$300,000,000 sounds like a lot, but at a 1% autism rate, over 3,000,000 in the US, so total spending, is $100 per head, and half of that is used to provide offices, hire people, non autistic, just to spend the other $50 per head per year.

So what do we get for the $1 a week spend in our behalf?

I see some better science. Much better than the Psychology studies of the last fifty years.

I see a large organization bring awareness to the problems of autism, and as mentioned, I learned about why I was like me late in life, with my special insider view. I am not alone, there are more like me posting in the introduce yourself welcome to Wrong Planet thread every day, 66, and just discovered there is a name for it, I knew, but did not have the words.

Autism education and outreach have been very important to us old free range autists, who existed before words. I do not expect any help, I can use knowledge, and while I do not have the answers, I could point out the problems, and how they were made worse.

Bringing awareness to the rest of the world would be a good thing, bringing it to the millions who have lived it for over fifty years is all they will ever get, my life explained, which did help.

I think the $1 a week was well spent.

It did not reach me directly, I got my education thanks to Alex, but Alex could not have launched Wrong Planet without the awareness program creating the need for services he filled.

I found Wrong Planet through a new article, many have said through a WiKi link about something else they were looking up. I have never heard through a puzzle ribbon on a car, but maybe, and indirect, but that is what it takes to develop awarness.

Autism Speaks was right to focus their efforts on children. That is where things start. They have disproven more than they have proven, and that was a needed step. It is not metals, vaccines, bad mothers, it is something else.

$3 a week would be better, that is $1,000,000,000 a year.

At the cheap end, $300 a week spent on support of autistic people, Would only cost One Hundred Billion Dollars a year.

That is 500 times the current spending, 1,000 times what Autism Speaks raises. Direct funding does not seem possible.

Indirect, a lot of autistic people in institutions, Group Homes, and living independantly on SSI. This does cost a lot more than the $300,000,000 spent on research, The overall cost could be that much a day.

With a problem that large everything spent on research is 0.03% of total cost.

Reducing costs is the main political view, but Autism seems a growth industry. Reducing the rate of increased costs is the only option.

It is not an impossible goal, $100 Billion a year has been spent on Afganistan, a Trillion has been invested in something, but I do not see a return on the investment.

Equal spending on Autism, the current level of overall costs, could be better spent. If the rate of Autism is increasing, which does have some evidence that suggests something in our enviorment is the cause, costs will double, and double again. Current costs, One Afganistan, potential future costs, Four Afganistans. Even Government can understand this.

My claim that a million people could become less of a burden and productive workers is overshaddowed by 14 Million productive workers now unemployed.

Our only point is that overall costs can have a reduced growth rate.

That is why research is supported, but research is showing that nothing can be done in the line of a Cure, or even reduction of symptoms. It has been showing that early childhood intervention does work. That does reduce lifetime costs. Sometimes.

Disability as defined excludes half of Autistics who work, or work sometimes. From what I hear, they do get some support in Europe. In America, half of Autism is Denied. So all the costs are spent on half the problem.

Government support for displaced workers has come down to a program to teach them to live on one bowl of rice a day, like the Globalized workforce. I do not see any change in their view of marginlized Autistic workers.

All groups in America have to support their own cause. We do not have the money or votes to lobby. We do not have the numbers to demand anything. All we can do is hold on to our funding, and seek better ways to apply it.

As the funding is spread unevenly over the problem, this gives an advantage to private health care providers, who do lobby. Private prisons bid on cost per day for prisoners, and Institutions bid on Autistics. Most Group Homes are Corporate fee for services. Profits do come out of the funding for the autistic.

It is a two tier system, some take the poor, living on disability, which is not much, but the privately funded residence programs are much more expensive.

The new group is the parents of autistic children who recently formed around Autism Speaks. The hope of a cure is fading, they have been privately funding their children, and they are coming up to the same long range problems that prior generations of autistic people have faced.

They may have managed to get their child an education, but the Class of 2010 who are not impaired cannot find jobs. Private residence solutions are more expensive than the university, and endless.

They are self educated about autism, and do seem to being much better than prior generations who knew nothing, blamed the child, and kicked them out in the world to sink or swim.

Having parents educated about autism, and concerned about their child, is something I lacked, but the 50s were like that. Given a choice, I would have liked concerned parents. They are trying to be what I see I lacked.

They are the only group worth joining forces with. Funding, services, advancing knowledge, we have common problems. They support the nonprofit research organization model, they understand the power of having a united political voice. They are everywhere and will let their Member of Congress hear their concerns, and they are not marginialized street autistics ranting.

Their concerns were about their children, and those grow into adults. I am an adult. I know what their children's adult lives will be like.

We are in this together, we have a common cause.

It is sad how the economy is because of all the unemployment. That is why I believe part of the solution is U.S manufacturing.

No amount of research and pity is going to alter the fact that nothing is going to help this cause any better than some sincere self-belief.

Pessimists like you don't solve problems but create the barriers in the way of the solutions.

Since I said that self-belief will work I think you completely failed to actually get what I was saying.

Didn't come across that way and although I dislike your pity remarks I am open to the idea you simply said the statement wrong about self-belief.

Gedrene, ci, play nice. No one likes extinguishing a flame war.

You are willfully confusing 'pessimism' with 'realism'.

You will have to excuse me but if you look closely Roxas (and I appreciate that would require a mountain of fortitude, it sure has for me) you'll find very clearly why I am getting annoyed.

You may be enabling self-defeatism to impose upon the reality of the fact positive thinking improves outcomes.