"Autism Speaks" Response to Autistic Input

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I have problems with the same things I wouldn't even know 90 degrees if you told me unless it was explained very clearly and with several examples. I am not good at putting things together so someone helps me with that. Same was true for a long time with my shoe lases and didn't learn until 12 -14. Here where I live the system provides one on one supports for people to learn a job and then be called in as needed as well as check up on the progress of a person. Still it is hard to find job placements even with all the supports provided FREE of charge.

I presented a public report from Maine presented in the Newyork times that cited the $70,000 estimate for residential care there for Autistics. A country wide average for Nursing home care of a little over 77K for the entire United States, A non profit organization helpguide organization that provides information on nursing homes that listed an average of 70K, the SAGE non-profit organization that is attempting to provide Farmstead residential homes to Autistic people, that funded an independent report, based on verifiable research links, that provided an average residential care cost of close to 60K from data that is two years old.

The Fox Report indicated that residential outplacements can exceed 200K and that Institutional care can be up to 1 Million dollars, but those are not average estimates. The same Fox report linked the same sage organization report I linked as a reputable source of information with the figures from two years ago that indicated average residential care costs for Adult Autistics to be around 60K.

Here is the Fox link, within the text, the article to the SAGE Report is linked:

http://www.foxnews.com/health/2011/03/28/having-adult-conversation-autism/




The Click here to read more about that article takes one to the Washington Post and the evidence from the same SAGE report that I linked earlier.

If you are going to accept this article as reputable regarding the 200K and 1 Million amount as conservative high end estimates for residential care and state institutional care, that evidence is only as good as the evidence they provide from the SAGE organization in the same article where they gather their facts.

State institutional care is not the same as residential care, so the 1 Million figure is not pertinent to the discussion on average residential costs for Autism, nor is costs that can exceed $200K, as it is not the average 300,000 dollar cost that you keep referring to, that you state is a popular recurring figure, that you refuse to provide a single link of evidence to support.

I'll accept your figures from the UK, but until you can actually provide a reference that backs up your assertion of a 300K average cost for residential costs in the US, who am I to believe, the multiple resources I have provided, or your one assertion at this point that is not backed up by any solid evidence. I did a search on 300K and residential care for Autism in the US, and absolutely nothing comes up, except these other multiple sources I have presented that put the residential care average at somewhere around the 70K to 80K range.

The problem in the US, is not one of a booming housing industry profitting off of Autistics, instead it is a problem of reduced government funds to support anywhere for an Autistic person to live as evidenced in the next article of proof.

Note the information they present in this article from New Jersey, which is one of the highest cost of living states to live in the United States, provides figures of 250K to live in a state institution which is the equivalent of a psychiatric hospital, and a regional hospital room averages $400 to $500 a day which puts care costs up around the 160K range, this pertains to one of the higher cost of living areas in the US and Medical Centers and State Psychiatric Hospitals are much more expensive than either nursing homes or residential care.

Medicaid will only pay for a portion of the residential care costs, so it becomes a matter if one can find an housing opportunity that will accept medicaid.

Per the article 8000 developmentally disabled people, just in the State of New Jersey are awaiting somewhere to live, and they managed to place 229 of these people last year. One of the only other options for an Autistic person is a homeless shelter mixed with the general population.

If you think living conditions are bad for adults with autism in the UK, how would the autistic people there like to be faced with living in a homeless shelter because of a lack of housing facilities. Keep in mind too, these options are only available for those that are pemanently disabled or have families that are rich enough to provide an inheritance for the adults to survive. There are no options for housing assistance for the majority of people that aren't considered permanently disabled, with higher functioning autism in the US.

http://www.nj.com/news/index.ssf/2011/04/priority_waiting_list_to_provi.html







The bottom line in the US, is there are not enough facilities to house people with developmental disabilities now, and as reported hundreds of thousands of more are coming that will need housing opportunities. The majority of people that no longer have the ability to live with family, rely on the highly regulated funds of medicaid that cover the bare minimum costs associated with care and housing.

While you indicate that housing Autistic people is a cash cow in Ireland, the problem here is that the profits generated by medicaid covered services are not enough to motivate private corporations to invest in new facilities for care. For the most part, we have to rely on government funding to build the facilities, and the money is not there that is needed.

If you can provide any links of evidence that prove otherwise, I welcome it. I don't dispute your Ireland statistics, but you haven't produced any links of evidence to back up those statistics either.

Yet, you keep projecting that I am the one that is not providing evidence for assertions, when I have clearly provided multiple sources in my posts.

A list of sources of evidence that I have provided so far that provide housing/care costs for Autistic Adults:

1. SAGE non-profit organization funded research for Autistic Adult residential care costs
2. New York Post report for Maine for Autistic Residential Care Costs
3. Genworth Financial group, for nursing home care costs and residential care, 2 sources
4. HelpGuide organization for Nursing home care costs
5. Fox News Report on Adult Discussion about Autism, with link to SAGE research
6. New Jersey Article on care costs in institutions, hospitals, and the lack of availbility of housing for the developmentally disabled.

You've presented zero sources of evidence to support any of your assertions on statistics that you have provided.

Last edited by aghogday on 11 Aug 2011, 5:52 pm, edited 3 times in total.

The cost of autism is hard to define, for it is lumped together with disability, which covers a lot. The Dx of Autism, PDD-NOS is a catchall, a box checked off to get services, and not clearly defined.

Before 1994 they were all called something else.

It is not just employers, total strangers have hostile reactions, being different is something they feel free to attack. We do mention that, but less or nothing is said about the people who go out of their way to be helpful.

The hostile do stand out, but overall, more good and tolerant people than bad.

Under the current DSM system, if three of twelve criteria are met, causing life problems, you are autistic, 2 1/2, there is nothing wrong at all.

A score of twelve out of twelve, you are still just autistic, even though you will need lifetime 24/7 care, and it is considered in the same group.

The costs are very different, the outcome, chances of independent living, living with social support, or institution, or the need for confinement.

While research is centered on the most expensive problems, the milder versions are left to Social Services. That is where a differance could be made, the cost of supported living is being paid, and for the money, a better quality of life could be had.

The concept of being intergrated into the community has worked for many. Some only need economic support, others supported living, and it is the cheap end of the problem.

Some feel good about being able to go to a park or coffee shop, like the urban life, and most people are urban now. Some feel the noise, overload, a constant and personally useless load, and seek a more rural setting. Some like both.

There is no, one answer, for people, or autism.

The problem is that special education professionals do not know how to teach autistics mathematics. The autistic mathematicians have suggested getting rid of irrational numbers and that all mensuration should be done with rational whole numbers. Cubical mensuration should be abandoned in favor of pyramidal accounting for volumes and the diagonal of the square should be the control length. Of course these ideas are too radical to be implemented by neurotypical special education teachers.

No aghogday, I will no be indulging you in yet another fishing expedition in pursuit of red herrings.

In the Western World there is huge profit in low to medium supervision residential care provision, particularly in a property price recession, and there is no actual shortage of service providers at all.

Where it all falls down is in value for money, quality of care, accountability, and respect for human rights.

Currently "Autism Speaks" actively pursues a political strategy of striving to present, and even render, as many autistic people as possible as in need of lifelong residential care by any means at it's disposal.

This is motivated entirely by the commercial interests of associate organisations and sponsors, and certainly not by any concern for the real needs of Autistic people which has been a consistent pattern with Autism Speaks since it's inception, regardless of how the direction of those commercial interests have shifted over that time.

To suggest that all Autistic people are better off in the current offering of residential services than homeless is a fallacious argument that makes about as much sense as suggesting the NT are better off in prison than homeless, particularly as there are far cheaper, less destructive ways of facillitating the majority of both in keeping a roof over their heads.

This is only one of a number of ways in which Autism Speaks does not work in the best interests of Autistic people and has nothing to gain by working in the best interests of Autistic people, who, in turn have nothing whatsoever to gain, and everything to lose, in any alliance with or support of Autism Speaks.

It is self evident that Autism Speaks need Autistics, but Autistics do not need need Autism Speaks and it is in all our best interests to recognise that and distance from them.

As I suspected, You say facts do not exist and present the problem but yet do not have facts yourself. I find a much greater risk in destroying an organization like Autism Speaks whom could potentially be talked into, advised or persuaded to assist in different ways. Autism Speaks has a vast social networking comprehension and availability.

If you are to blinded by ideological proprietary mind-frames then kindly step aside for more constructive methods by balanced and as well as well intended advocates who care. People are not monsters for having differing points of view. However those that make people out into monsters in their mellow drama ideological persuasions when more constructive life changing means are possible I'd like it to be socially enforced for the best interest of others to get along in spite of differences of opinion about autism itself. There are far more important issues at hand then destructive mentalities who are more interested in being right such as quality of life, hope and inclusion.

ci,

You claim to be "one of the bosses".

How many people do you personally employ at this time?

One place Autism Speaks changed our world is in drug studies, there are no Autism Drugs, but the treatment up to that time was lots of drugs.

Drugs were being used off label just to keep the person making office visits and producing billable hours. When that was brought up, there was a big Opps! and with somebody watching, drugging autistics was stopped.

There may be other conditions, which need to be documented, but giving anyone drugs for just autism is malpractice.

Drug companies were involved, bypassed the FDA, sent reps to the office, and pushed their product for uses that had never been approved, and were harmful.

Autism Speaks only studied the problem, but then the Government cracked down hard on drug companies, and the misuse of scripts. A little science can bring a lot of social change.

Could ASAN protect everyone from the pill pushers?

5 and expanding.

I am not sure of this subject. My mind is capable of much more then what was offered and the environments were to much for my "brain". I just don't use the N.T word because I find it disrespectful to myself to focus to much on differences instead of living life without much concern to it. My brain is a brain.

There are thousands of people with developmental disabilities in the US waiting for housing assistance in the US, as evidenced in my last post, just in the state of New Jersey in the US. There are also shortages in services in the UK and Canada as well, per links and quotes here:

http://www.talkaboutautism.org.uk/support/transition/-national-picture/issues



The current cut backs in social programs in England can't be helping this situation.

Ontario Canada:

http://www.autismsocietycanada.ca/DocsAndMedia/KeyReports/ForgottenReportAutismOntario.pdf




Some will need lifetime care, that's not there fault. It's not anyone's fault. But the fact is if they lose the suppport of their families, without housing assistance, they risk living in a homeless shelter.

There are better ways to provide care in a residential home than is provided today, but at this point in the United States the people that need housing have no other choice, but to take what is available. It's reality.

It is a fact that Autistic people that need care are better off in a residential care facility than a homeless shelter. I've never heard a stranger opinion than to suggest any disabled person is better off in a homeless shelter than residential care home. There is no one qualified to meet their needs in a homeless shelter.

If you are not homeless this may not be a problem for you, but it is a problem for others. These autistic people can use any help that can be provided for housing options.

Before, a major complaint was that Autism Speaks was not providing assistance in services for assistance to autistic adults, now you state that it is a problem that they are getting involved, in helping to solve the problem. That's not a reasonable position, considering the problem Autistic people face in the future for support options as adults.

This problem is acknowledged by the government in the US, the UK, and Canada. You seem to be living in a bubble in Ireland if Autistic people have all the services they need there, it is not that way in these other countries. I've provided the evidence that there is a shortage of service providers for Autistics. You state there isn't, but still have provided no links of evidence to support that assertion.

While you may have an opinion that Autism Speaks is motivated by commercial interests to help Autistic adults, you provide no evidence that supports that issue either. There is evidence that they are supporting independent research to study the problems that Autistic Adults face and to find effective supports. It is clearly listed on their website among their research grants here:

http://www.autismspeaks.org/docs/sciencedocs/grants/2011_Basic_Clinical_RFA_2-4.pdf




You have provided zero evidence for your assertions here, from any other source other than your opinion.

I will glady research and provide more evidence of a shortage of service providers for Autistic people in the Western World at your request.

...and the fact that, under a thin veneer of euphemism, the current stance of "Autism Speaks" PR campaign and lobbying consists in erroneously presenting Autistic people as either:
* Hopelessly dependent on care and control
or
* Fit to be thrown in at the deep end to drown in homelessness and destitution.

Means that we should all IMMEDIATELY rise up and support them?

I don't think so.

I think there is a best interest of other people that should be progressed for. The idea that looking in the mirror and seeing how autism looks as a hairdo in public image for oneself to agree, to meet the standards of practices for prides agenda and how one might curtail the image of serious autism for the sake of abortion politics is a clear and self-centered injustice toward those who depend on an understanding of the substantial disability it can be to receive the understanding and help needed. To oblige only an image for the sake of anti-research to prevent treatment rights for anything that does not suit a minority of a minority for the sake of their agenda is nothing other then an evasion of common sense liberty of individuals.

It is not that your support is needed it's just that your lack of support seems to be disregarded for the sake of more important issues. Autism is a disability. A disability individuals have the right to be corrected and a disability of important social economic concerns. Ultimately other then a few smaller issues such as some individuals who would like to control everything instead of simply participate I am not sure what the big deal is. The peer pressure "your a curebe" mantra was cute I think others could say but ultimately kind of ignorant (I don't like that word) because of essencial human liberties and obviously some were just being mellow dramatic to the extreme to get attention.

Meow...

The reality is some people with Autism are dependent on care and need structure by others to survive. It is not the majority of people with ASDS but 400,000 people as reported by the government in the US (not Autism speaks) is evidence of the numbers that are going to be at least partially dependent on care and structure provided by others, when their families can no longer provide it in Adulthood.

There are over a million Autistic people in the United States that function at levels that don't allow them to collect the financial aid that the permanently disabled can collect to gain housing and subsistence assistance from the Government.

A great number of these people are dependent on their families just as the permanently disabled autistic people are. Less than 20% maintain full time employment.

This is definitely a problem that needs to be addressed as I assure you there are uncounted adult autistic numbers at this point that are already homeless in the US. In the US without a home, job, government, or family/community support that is where you end up, no matter if you have a disability or not.

However, it is not within the realm of Autism Speaks financial ability to provide financial aid to these individuals. The government can't even do it at this point. However this issue can be researched, and we can only hope that the government and private organizations within the community can come up with solutions here in the US that will help Autistic people that don't currently get financial aid get support that will help them surivive into the future, as well as those with Autism that are considered permanently disabled.

People with Aspergers are extremely fortunate in Ireland to have the assistance they do have for material security. It shouldn't be hard to understand that having somewhere to live and eat and receive some approximation of the care one needs, is better than begging for food on the streets or living in a homeless shelter.

Autism Speaks does not provide the housing or regulate it; the government, non-profit organizations, and profit organizations provide the housing; the government regulates it in the US. The Government, Autism Speaks, and many other organizations are now funding research to determine the best ways to support the needs of Autistic Adults in the Community in the coming decades, as it is clearly seen as a crisis in the United States.

The fact that Autism Speaks is funding the research that may lead to better supports for Autistic Adults, may not be as positive as if they could financially support all Autistic people, but I don't see how this would matter to you, because you feel that if the conditions in residential living that I agree should be met, are not met immediately, that Autistic people are better off homeless. That is a lose lose proposition and one of complete defeat.

It is a positive thing that Autism is funding research that may improve the conditions for Autistic adults, but it is no requirement that anyone jump in and immediately support them because they are doing this one identifiable positive thing for Autistic Adults.

On the other hand there is no sense in accusing Autism Speaks of determining what supports Autistic Adults will receive in the future, because it will be almost entirely determined by Government legislation/ the voting public, and benevolent community organizations.

I don't have enough information to speak directly to the needs of other countries, but it is clear that there are similar problems there as well.

Aghogday, all you ever do is try to provide convoluted excuses for expecting people to support Autism Speaks.

The truth however is that Autism Speaks are, effectively, the adversary of our best interests, always have been, and always will be. Not only do we have nothing to gain by supporting them, we also have a great deal to lose, so that any effort we can spare is best deployed in fighting to get our real needs met as far away from them as possible.

I've presented specific evidence as to what some of the positive things that Autism Speak is doing.

You don't see the efforts of Autism Speaks as positive factors that are helping you; you have a right to that opinion. I don't see everything they have done as positive, but it doesn't seem reasonable for one to suggest they haven't done anything good for Autistic people as a whole. The evidence is clear that they do some positive things for Autistic people.

The factual third party information that Autism Speaks on there website is accepted in the scientific community; the resources are not inclusive of every possible avenue, but they can be valuable resources to Autistics, Families of Autistics, Friends of Autistics, and those that want information about Autism.

The Research some disagree with, but there is nothing negative about a prescreening test for Autism that has resulted from the research that Autism Speaks funds, or environmental research Autism Speaks funds that may lead researchers to eliminate potentially dangerous environmental factors that may lead to the debilitating symptoms of Autism.

I do have a problem with conscise verbal communication so here is a list of just a few things that Autism Speaks has recently done that have no elements of negativity:

1. An expansion of general information on their website from recognized reputable third party sources, along with expanded resources for autistics, families, and friends of Autistics; along with the availability of information for the general public.

2. Funding for Research that has led to an early screening test for Autism that is available to parents free online; and can be used by physicians as well.

3. Funding for Research that has led to an understanding in the Scientific Community that environmental factors may play a bigger role than previously assumed in Autism, that may result in further research into the specific environmental factors that may result in the debilitating symptoms of Autism.

4. Funding for Research to better understand factors that influence quality of life for adults with autism, emphasizing effective supports, functional outcomes, medical co-morbidities, and mortality.

5. A change in their mission statement that invites the entire autistic community to come together to fight for the changes needed to make lives better for Autistic people.

6. The addition of a successful highly functioning Autisic person, John Elder Robison to their organization, along with joint efforts with World Planet to showcase the experiences of higher functioning people with Autism in a video medium

7. A more positive image of Autism respresented in the imagery on their website.

These are all clearly positive influences that I doubt many reasonable individuals could see negativity in. There are still many improvements that can be made. But these current efforts as listed have no adversarial elements.

These efforts may not motivate all to change their opinion on the presentation of the organization of the past, but these factors all have the potential of making life better for Autistic people in someway.

Autistic individuals for the most part, are not in any financial condition to support any organization; for the most part we rely on others to provide that kind of support for us, if we need it. While we may not have the potential to support organizations in a financial manner, it doesn't seem sensible to reject positive efforts that people other than autistics are financially supporting that may help autistic people that need that help, even if we receive no personal reward out of those efforts.

So far the poll of this topic is fairly split on whether or not an improvement is seen in the Autism Speaks organization, I see that as a fairly positive sign that they are making some progress as an organization that recognizes changes that have been asked for and have implemented some of those changes within the organization, considering the opinions on the organization that have been expressed here in the past.

No one will see it though unless those changes are brought to the forefront of attention. People don't normally recognize change like this unless it is brought to their attention.

Until recently some of the stories that were ones of miscommunication like the Tshirt censorship issue are still being circulated as fact, even though the person that accused autism speaks of censorship clarified that it was a misunderstanding years ago.

As, well as the "I Am Autism Video" that was taken off Autism Speaks website years ago, after it was criticized, it is often presented as a current issue by some, instead of one that was resolved years ago.

There isn't any evidence of nefarious activities to be ascribed to the organization, currently, only differences of opinion which should be expected with any organization that must use their discretion on how to expend funds to meet their mission as funded by those that support it.

Okay, I've presented 7 specific objective actions that the Autism Speaks organization has provided recently that are clearly of advantage to at least some autistic people.

They all are backed up by clear evidence; the reach of the positive impact can be questioned, but there is clear evidence in all 7 cases that there is a potential positive impact in each case for Autistics, that exceeds any potential negative impact.

I invite you to list 7 objective specific actions that should reasonably be accepted as negative impacts to the autistic population as a whole, that can be backed up by evidence, not just by opinion, that Autism Speaks is responsible for today, and not issues that have been resolved in the past.