"Autism Speaks" Response to Autistic Input

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Brilliant, idea...I am in...I just have no idea how you are planning to pull it off.

Nah, I am a traditionalist...seriously...just give Autism Speaks every assistance to overreach and discredit themselves (a course upon which they seem well set already) then try to put something better with a more vested interest in the real needs of autistic people in their place...

Then rinse and repeat until all is right with the autistic world. 20, maybe 50, years tops?

Not in my lifetime for sure, but no reason not to keep fighting for it anyway...

I think it's a little selfish to remove treatment right advancements and hand over that money to people that don't want that research.

You really haven't understood a word I have said have you?

Yes. I understand the big picture of it all.

1. The right to dignity. So as to be respected and treated as equal as everyone else and to be accepted.

2. The right to treatment. To perceive autism as the horrible thing which are the negative barriers as put forth in the DSM to have the option to correct.

Ultimately the confrontation is both an incompatibility and bias between the two above. If someone calls themselves a disorder akin to Mr. Autism (autistic) the two will further conflict inter-personally and with treatment right persuasions. You folks got a PR mess on your hands and the two won't budge. Treatment advancement is a human right and to instill identity of the disorder so as to be proud and then seeking to potentially evade treatment advancement rights where applicable by means of awareness persuasions is a fundamental conflict.

Those were great resources you provided for New Englanders and those that live in the UK. Autism Speaks provides resource information for adults with autism it is under their family resources section. There are pages of resources; that if you like, I will provide a series of individual page links to, if you can't find them. They cover a broad area of resources over the entire United States.

If you have other resources that provide this kind of information for the entire United States, that would be of use for others as well. There is absolutely no intent of exploitation in these resource areas provided by Autism Speaks. Most of what they present are third party resources that have nothing to do with Autism Speaks.

The major problem in the coming decades for the hundreds of thousands of Autistic people that will need full time care, is providing that resource. The government is going to have to play a huge role in this. And, Autism Speaks is working hard with their influence, to ensure that the issue is at the forefront of government attention.

Here is an independent review in no way associated with Autism Speaks that gives a conservative statistical study of the issue:

They estimate over thirty thousand of these new cases of developmentally disabled autistic children entering the adult population will be in need of subsistence services by 2012, and the number greatly increases in the rest of this decade as indicated below in a quote from the study.

The estimate of institutional care presented by Fox news recently is around $200,000 and depending on the level of medical support required, I wouldn't be surprised if it doesn't reach $300,000 per year at times. However the greatest number of assisted living arrangements for Autism is provided in the home and in residential care facilities. And there is a move in some states to provide in home care funded by medicaid to keep children in family homes that costs under $30,000 a year.

As clearly indicated in the report from 2009 the averages as backed up by evidence in the report range around $60,000 for these residential care facilities. The $300,000 figure is a high end estimate for an institution, but is much higher than the average cost for a residential home. If you can present any evidence to support you assertion that $300,000 is the average cost for residential care, I would like to see it, otherwise the widely accepted figures presented here are backed up by clear evidence, in the research article.

http://www.ac-aa.org/docs/SAGE_Economic.pdf



The housing requirements for these young adult autistic people, numbering in the hundreds of thousands, that will, as indicated by the study, need assisted living arrangements, is not available today and is a focus of effort in the government that autism speaks supports with it's influence and research funding dollars.

They won't be the ones to make the final decision; it will be the politicians and their constituents that decide. The billions of dollars to meet this effort will only come from tax payer support.

Even if Autism Speaks could talk their supporters into funding direct support for the housing iniative, the 90 million dollars they raise each year would only fund living arrangements for about 1300 people out of the over 30,000 young adult autistics that need support today.

This only speaks to the issue in the United States, not the entire world.

Keep in mind, that this number only includes a conservative estimate of developmentally disabled autistic people that must have human support in residential setting, not higher functioning autistic people with learning disbilities, that might be able to sustain themselves independently with a springboard of financial aid.

There are many people that are partially disabled that don't get any finanical assistance to live in the United States. However, if you are found to be permanently and totally disabled you can get finanical aid to live.

If you think that autistic people that are not permanently disabled should receive financial aid from the government, it's not going to be an easily accomplished goal, considering that the government can't meet the needs of those that are more severely disabled at this point in time. It's not a good answer, but it is reality.

Other countries have larger safety nets for people that experience debilitating symptoms from disabilities that aren't considered for financial aid in the US, but that is not an Autism Speaks issue, all the organization can hope to do is make a positive influence on politicians that they invite all autistic people to join in, the ultimate solutions or non-solutions will come from politicians.

We are seeing cut backs in Medicaid programs in states now; medicaid is a major source of support for developmentally disabled people with Autism that they depend on to survive.

There is a very deep hole here, that we are going to have to rely on the government to provide support for. If they don't, autistic people along with everyone else with disabilities are going to have a hard time making it in life. Remember we are talking about Billions of dollars to meet the need just for developmentally disabled people with Autism. The government is the only resource that can provide that kind of support.

If you can provide any evidence that "very few people with autism need full time care", I would like to see it. I have provided evidence here that the number of children reaching adulthood in 2012 that will need residential care is close to 30,000 people. In my opinion that is far from a few people.

There are indeed a much greater number of people in the United States that are on the Autism Spectrum that aren't considered permanently and totally disabled that may number as many as a million individuals; they face similar problems that many people with other disabilities struggle with in life, that don't receive direct finanical aid dollars from the government.

Given all this information, it doesn't take a great deal more thought, to understand why the government is highly motivated to fund research to find better treatments for Autism, and have hoped for a cure for the disabling symptoms of the condition.

It may realistically be the only hope for some in the future to not encounter a great deal of hardship in their life, or to have a realistic chance of survival in the future, if the government can't provide the resources necessary for thoses that are permanently disabled by Autism to survive.

Now that environmental factors are understood to play a larger role in the condition of autism, it is possible that some of those factors may be found and eliminated resulting in fewer debilitating symptoms, and a chance at a better life for some with Autism.

The government, autism speaks, and a number of other organizations are funding the effort. It could make a difference in the basic ability for some with Autism to maintain basic subsistence in their lives in the coming decades.

These are cold hard facts, but they are reality, and the evidence is there that makes them impossible to ignore.

How would you solve this problem?

I can't provide specific solutions; it takes the minds of many experts to understand all the factors at play in what it will take to meet the needs for hundreds of thousands of permanently disabled Autistic Individuals to exist when they will count on others for survival their entire life. And, it takes government resources (dollars) that private organizations do not have the ability to come close to providing.

Last edited by aghogday on 05 Aug 2011, 4:30 pm, edited 1 time in total.

No, I was right, you really have not understood a word I have said.

...and you do not understand the real issues either.

Which is that the Autism Industry as a whole (for which Autism Speaks is the dominant mouthpiece) has absolutely nothing to gain, and everything to lose by any of us achieving autonomy and independence at all, whether through support and accommodation or therapy and treatment. Makes no difference either way. Their power, prestige and profit depends on as many of us as possible being as heavily dependent on the lucrative services they provide for as long as possible.

As a result the various strategies and services on offer are heavily biased towards containing and controlling while disenabling, and undermining us, in the hope of maximising our continuing dependency on their services, or, at least, presenting a public image of it.

The only way any of us will ever get any real worthwhile, help, understanding, support, treatment - *WHATEVER* is to get Autism Speaks and their associates out of our lives and fight for what *WE* need ourselves.

I think you suffer from far to many assumption but the assumption may be good enough to benefit some individuals if spoken as potentials. Where I live much money is put into my independence as well as quality of life. I have conducted civil and human rights tests where some failed and some remarkably succeeded beyond expectations in policy. I myself am not so emotionally blinded by a them vs us mentality to realize when disablement is true and when it is false. However it does serve an injustice to consider at all times disablement is always present when it is not as it is like a little boy that cries wolf. Eventually people stop listening. It is important progress be made but as well when doing so giving individuals of the old ways a chance to cooperate as tax-payers will see the difference and-they will become obsolete.

Now here are real hard, cold facts aghogday

Using very conservative estimates 30,000 people is one person in every 10,000 in the USA, and one in every 66 or so Autistics.

...a very few people indeed...

Your "research" article is, in fact, part of a sales pitch by an umbrella organisation for alternative residential service providers ( ) http://www.ac-aa.org/

You really do not ever convince me you know.

I am a consumer and that is it. I've never heard of that organization. Simply you have not convinced me that you have the solutions but like to rant. On the other hand as far as employment inclusion and facilitated opportunity that is my specialty. I do not think I could mentally survive being in a group hope myself because I need my mind space and at best hope gardening space to some degree.

Now whatever solution you provide you are then a sales person for that even if you do not know the organization going by your logic. I do like the idea of one pilot program that will essentially give consumers the money to purchase their own services and supports privately. It may or may not work out but I was told it can be used for employment progress as well.

Ci, at this point I am beginning to suspect you do not even understand what *you* are saying.

ahogday, the issue for me is not that there is no useful information (or even services) provided by Autism Speaks, but rather that the simple fact is that that's not where the majority of the money is going. I've looked through their resource guide, and while there is certainly some useful information there, it still could use some work. I would like to see, for instance, a database where service consumers (both people with disabilities and families) can write honest feedback about various services and programs. That would be more useful than simply a database and the PR statements of various programs--which does have its uses, to be sure. I also think it's important for employment programs to specify whether they pay minimum wage or not. Because programs that exploit the labor of people with developmental disabilities only to pay very low wages are not something that I can support, at all. Their database is also somewhat lacking in information about adult diagnosis, which is a major issue. I also see that they link to some "residential programs," i.e. group homes and possibly even residential institutions. Again, not something I support.

I have to say that for myself, when I was diagnosed with AS as an older teenager, what helped me was not the information provided on parent-run websites, but rather websites like Wrong Planet and other discussion groups where I could get into contact with others. I'm looking at the information provided by Autism Speaks right now, and I don't think it would have been very helpful for me in the stages where I was first learning about my different neurology. Some of the language ("unfortunately, there is no cure") is downright alienating. I'm sure there are families that are helped by the resources they provide, but they are not where they could be IMO. Especially with regards to older teens and adults.

But I feel a lot of this is kind of besides the point. The website is a fairly small part of what Autism Speaks does, and I don't imagine that it takes a lot of resources to produce these things. While they may have compiled a list of resources for people to possible use, the fact is that this isn't much use when you can't afford a lot of these services in the first place. That's the problem for most families, especially during the recession. And I think it's a problem when autism families work so hard to raise money for Autism Speaks and get relatively little in return. The fact is, by the organization's own admission, most of what they get goes towards "awareness" campaigns and scientific research.

And when you look at the research that's being funded, I don't think it's particularly helpful. Look at their grant search database. I won't say that none of it is useful, but to my mind the proportion of causation research/prevalence studies/studies involving "mouse models" and flies (drosphilia) is just way too high. Also, if you listen to the video of Geraldine Dawson giving an introduction to IMFAR, which is on this website, you'll hear her give some numbers about the research money. More than 60% going to causation research, if I remember correctly?! ! If you support that, then yes, Autism Speaks is the organization for you. But for those of us whose priorities don't align very well with that, supporting Autism Speaks doesn't make much sense at all.

Dawson's speech also points to another matter of concern with the organization, which is that they are now developing ties to pharmaceutical companies to develop "treatments." For me, a so-called "non-profit" developing ties to big corporations sets off major alarm bells. Who is truly benefiting from this arrangement? I don't think it's autistic people and our families.

I think it's somewhat unfair to compare Autism Speaks and ASAN in certain ways, because ASAN has a very, very small fraction of the resources that Autism Speaks has. So it's not as though the two organizations are in any way on equal footing. ASAN is working hard to advocate for autistic people, often teaming up with other disability organizations, with very limited resources. If we had millions to spend like they do, we would certainly be able to do a lot more! As it is, most of us are volunteers who struggle to juggle our advocacy work with other responsibilities, and the fact that we often have serious executive functioning issues doesn't help.

"Autism Speaks doesn't do anything useful" is a straw man. "Autism Speaks doesn't do enough of what it should be doing given its vast resources" is a more accurate summation of the argument.

The non-profit SAGE organization that funded the research, makes no mention of the rural farm communities they support, to provide adults with autism a cheaper alternative for interdependent living as opposed to the residential care that is available in the mainstream community.

What better organization to fund an unbiased report that clearly provides third party respected references for the facts provided in the research? You were just complaining that current residential options that were profit making machines. Do you not think this idea is a great alternative for Autistic people that need this kind of support?

As reported in the research 30,000 is the number of young adult developmentally disabled autistic people entering the adult population projected to need housing support in 2012. I already provided clear evidence that it was a small percentage of the entire number of people on the spectrum, but the 30,000 people is not what anyone would commonly refer to as "a few people". Data presented in the report from the Federal Individuals with Disabilities Education Act Accounting Center identified close to 400,000 developmentally disabled children in the school systems that will need adult services when they leave school and home.

The majority of those children will be adults, needing services in the adult community in the coming decade. The majority of the children currently receive full time care at home and in the school environment.

These are conservative facts, not exagerrations. While you may think that 30,000 people needing services is no big problem, you may not be considering the other third of a million children that are still in school and are being taken care of at home that are going to need the support services when they become part of the adult population in the coming decade. That is where the problem is. Do you have any ideas to help these adults needing support for their entire lives, that are improved over what the non-profit sage organization is trying to do to help these devlopmentally disabled autistic adults that are going to require support to live?

Do you have any evidence funded by anyone that backs up your assertion that the average residential care home costs an average of $300,000 for an individual with Autism, and most of the money goes to profit? I researched it myself, and could find no evidence of either assertion.

You present what I see here as a very reasonable opinion. The major relevant point that you present, is Autism Speaks does provide the majority of their research dollars for causation.

Causation is a concern for parents that would like to have additional children and would like to see potential better treatments for their children, parents in general that want children and are concerned about the more debilitating symptoms of Autism, and others that understand how hard it can be for some to live with Autism, and want to see less human suffering for future children. This is the majority ideology of people that support Autism Speaks, and Autism speaks responds by fulfilling that mission.

The government is extremely interested in causation because, the government is going to have a hard time funding the subsistence needs of those that experience the disabling symptoms that some experience with autism. It's much more cost effective to research causation and provide potential treatments or eliminate environmental factors that may cause the more debilitating factors from a governmental point of view. Autism Speaks works closely with Government research organizations and shares much of the same ideology as the government does on the issue.

I don't see anything unreasonable about these objectives given the bigger picture of the concerns related to autism. On the other hand, as you indicate not all are concerned with what causes autism and do not believe it is a worthwhile pursuit that is going to produce results of merit, and the money could be spent in other ways. That is also a valid point of view. Your solution is the common sense solution; support the organizations that supports one's individual ideology.

In a reasonable conversation, such as the one you presented, we can see the differences and agree there is room for improvement; if you advocate for autism it is a worthwhile effort to make suggestions to Autism Speaks, to make improvements, where you think they can be made. That's a constructive effort, you offer some suggestions here that might lead to improvement of the website. On the other hand there is absolutely no need to promote the organization either financially or by word of mouth, if one is not in alignment with their missions.

Out of curiosity, I had never heard of the non-profit SAGE foundation that is working to sponsor and provide farm environments for Autistic Adults to live and work in, until I found the research on Autism they sponsored. It sounds like a great idea to me, that could potentially make life better for some autistic people, than the conventional residential programs that are available. What do you think of this initiative? Have you heard about it before? http://www.sagecrossingfoundation.org/index.shtml

In my opinion the country needs more efforts like these from non-profit foundations to meet the future needs of Autistic people. My understanding is the program supports people with Aspergers and the milder cases of Autism as well as those that are consisdered to have more debilitating symptoms.

MAN!! Some days you just KILL me!




30,000 or 1 in 10,000 people, or 1 in 66 autistic people = $6 billion in residential services - a multibillion dollar industry in it's own right.

If you could even double that to 1 in 33 autistic people you add another $6billion.

The future is in rebranding conventional residential and institutional services as some variation on "supported independent living communities" (The fact that communities don't work too well for people who cannot function in groups and tend to deteriorate in group conditions is just a bonus, that sustains their dependency, and ringfences your market share.)

Imagine the potential for expansion if you could work that up to include Aspies too? The annual profits and turnover end up in what they call "gosh figures".

Hell, with that kind of money on the table, who the heck cares about the best interests and civil rights of a few autistics?

Tell me aghogday...how would YOU like to spend the rest of *YOUR* life in a "supported independent living community?

The system where I live is based on consumer choices. A consumer is a person within the system the receives services and supports from government contracted vendors. In order to become a vendor you must obtain qualified individuals and put together a comprehensive service design. I have done all of the above and have formulated new methods to obtain work as a work program. Since the system is based on consumer choices individuals can choose what programs they want to be part of and not.

Ultimately what I am trying to put across to you is instead of complaining become the solution. Blaming organizations instead of providing solutions only goes so far. So when I say the new ways I mean the new ways autism self-advocates come up with.

You still haven't provided any evidence that the current residential accommodations for autistic people that need full time care cost average of 300,000 while I have provided evidence that the average cost is well under $100,000.

Here is another resource from Maine that suggests the average costs of fulltime residential care is about $70,000 and in some cases it can go over $100,000, depending on the medical needs of the individual.

http://www.kjonline.com/news/autism-presents-greater-challeges-after-graduation_2011-05-14.html



Nor, have you provided any evidence that anyone is making gigantic profits by providing residential care to autistic people. It's not cheap providing a workforce that includes personnel with medical training. Most of the money received by these facilities from permanently disabled Adult Autistics comes through medicaid that is restricted and regulated by the government.

The whole idea behind the current research that is being done on how autistic adults are going to be able to integrate into society in the coming decades, is to find the best way to provide accommodations that work for autistic people; not to go with the status quo if possible. But it is all dependent on federal funding and the medicaid system.

The farm communities are a variation of what is available in the mainstream world that aren't going to work for all autistic people, but evidently they do work for some autistic people to have a better quality of life, and the ability to live interdependently.

These autistic people in question in the research are more severely disabled than higher functioning autistic people, as indicated in the research. They are not going to be able to independently live because of the medical care and full time care they require.

It might be a better alternative if they could have their own separate apartment like living areas, but it's not a realistic medicaid scenario, if they require full time care; medicaid won't cover this for an autistic person that needs full time care, anymore than they will cover it for any other individual with a disability.

Medicaid covers the expenses of the overwhelming majority of autistic individuals in residential care, and I can promise you medicaid is not going to pay a higher amount to take care of autistic people than they are going to pay for other individuals in nursing home type residential accommodations. Any financial issue here with autism, is the same as it is for any individual needing care funded through medicaid.

Medicaid pays the bare minimal acceptable portion of what is required for the individual to live in these facilities. And, again it is what the majority of permanently disabled adult autistic people depend on to survive, that no longer live with there family.

In my opinion having to live in any kind of institutional setting is something that no one wants to be subjected to, but at this point in time for some, homelessness is the only alternative, and that not an option that we want to see Autistic people faced with in the future.

Of course we all want to see better options, but the bottom line is, the majority of autistic adults that are permanently disabled rely on medicaid, and whatever care they receive is going to be dependent on what medicaid will cover, just as the situation dictates with any other disabled individual that requires long term care.

In a recent survey done by the Autism Society Foundation, thirty two percent of adult autistics live in residential care facilities. Many higher functioning autistic people still live at home with their parents or other family members, and less than ten percent hold down full time jobs.

The 30 million figure only relates to Autistic more developmentally disabled children that have entered the adult world in the last couple of years. It's only the tip of the iceburg. All the existing evidence suggests that hundreds of thousands of developmentally disabled autistic people are going to need residential care in the coming decade.

The sad reality is there are aren't enough living facilities now to take care of autistic people that require fulltime care, and thousands are currently on waiting lists, to find somewhere, anywhere to live.

And, most of all of them are going to depend on medicaid funding to survive the rest of their life.

Autistic people by and large are at the mercy of what medicaid will provide for living arrangements. No one is getting rich off of it, this is why it is so important that we have non-profit organizations getting involved in providing living and working opportunities for autistic people. If it was a lucrative endeavor to house autistic people, or any of the other disabled people in the country that depend on medicaid, we wouldn't have the waiting lists that we have today.

Autistic people are by far are not the only ones in this dilemna. As the baby boomer age and develop permanent disabilities, and quickly become dependent on medicaid once their personal funds run out, they too will depend on medicaid and the government for survival.

Right now, for any person that needs long term care that relies on medicaid, it's not a question of where you want to go that is nice, it is a question of where you can go where something is available that medicaid will cover.

While we want the best possible outcomes for residential care for autistic adults in the coming decades, the biggest realistic fear for autistic people, is are there going to be any options at all.

Organizations like Autism Speaks can only suggest to lawmakers that they take action to provide funding for housing for Autistic people, but the real organizations that may make a significant impact are the non-profit foundations that are providing the support for better living arrangements for Autistic people, while medicaid picks up the portion of the bill that it will pay for the staff, care, and subsistence requirements.

This is probably the only realistic avenue that there is going to be to come close to reach any ideal living arrangement scenario for Autistic people. Improvements in Government social programs don't seem to be a realistic scenario in this country, due to a myriad of factors that have occured in the past that none of us, even the politicians, have any control of anymore.

I think that most everyone commonly understands that medicaid benefits only pay for what is considered standard living arrangements for any kind of long term or assisted care, and corporations don't get rich off of their medicaid residents.

I think everyone also commonly understands that the overwhelming majority of disabled autistic people can't fund living arrangements through their own financial means.

I am really interested in where you are getting this idea that people are going to get rich off of housing permanently disabled autistic people, the majority of which are on medicaid. It's an unusual perspective, but I would be willing to entertain the possibility, if you can provide any evidence to support that opinion.