"Autism Speaks" Response to Autistic Input

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There are going to be several hundred thousand permanently disabled people that need the kind of medicaid covered care that I spoke of in the last post. They can't live independently; they have to have assistance to live and rely on medicaid.

On the other hand there is good evidence that there are potentially close to a million Autistic people that don't meet the medicaid requirements for disability assistance, that are going to have a hard time finding living arrangements and jobs that could do it with partial assistance.

This includes what is probably the majority of people that visit this website, people that are associated with the neurodiversity movement, and other Autistic people that may have learning disabilities and other impairments, but aren't considered permanently disabled by the government.

Realistically, if you don't meet permanent disability requirements, the government is not going to do much for you except provide food stamps, and the same housing subsidies that that are available to other people, that are of low income to no income status, which is not much if you don't have dependent children.

This isn't an issue that is nearly limited to Autistic people, there are millions of other partially disabled people, that are faced with the same challenge; along with the highly qualified people that can't get a job, simply because there are no longer enough jobs for everyone in the country.

The government isn't going to do anything for these autistic people, that they are going to do for anyone else with a partially disabling condition, like epilepsy, ADHD, fibromyalgia, chronic illnesses, etc.

We can only hope to rely on the assistance of Autism foundations that directly support this cause. Unfortunately they are going to also be overwhelmed by the needs of those Autistic people that are permanently disabled as well.

I think that the springboard that you were talking about for higher functioning autistic people, is a wonderful idea, but the funding has to come from somewhere; and as you can see in the previous post there is already a deep dark black hole, there for many Autistic people that are clinically measured as permanently disabled.

Autistic people don't have the financial means to provide resources for this, so who are we going to depend on? The only people that any of us can rely on, is our families for support. The government doesn't care, it is only a lawmaking institution, and the money is only going to go where the highest priorities are; objectively it is the permanently disabled people with Autism, so if anyone gets any government help it's going to be those individuals first, that get it.

There are potentially, what we like to call "NT" people, that are the friends and families of people that experience autism like you and many others do, that understand it can be disabling as well. The bottom line, is, if we can hope to get any kind of help with this, it's probabaly going to come from private, benevolent sources. Maybe one day some of these people will start a foundation to meet the specific needs that can assist higher functioning autistic people that need help in life.

The Neurodiversity movement, expresses the ideology that we are only different, and society needs to accommodate us and accept us as being different.

It's an interesting ideology, but, I think by itself, it's not going to concretely influence anything in society that makes it easier for autistic people like you and others that are disabled but not disabled enough to get financial assistance to gain a living arrangement and work opportunities.

I think that has to come from a specific organizational effort to meet those specific needs. It's not likely that anyone can make this thing we call society or the "NT population" change with ideology, to meet our needs.

The real assistance in the working world now for higher functioning autistics to protect their rights as individuals with disabilities, is the"ADA".

Someone somewhere, I think, is going to have to lead a private effort to fund supported independent living opportunities and job opportunities, for higher functioning autistic people for it to ever happen.

But, it's not likely going to happen as long as people that want challenging jobs and decent living arrangements, insist that they don't have limiting factors that require actual financial assistance, instead hoping that the opportunities that aren't there now, will be created by society, simply because it's the right thing to do.

The only solution for the ideology of neurodiversity, as the ideology stands now, I think, is to adapt to the world the best way that higher functioning autistic people can or hope we have a family with enough money to give us the springboard support we need to independently live.

These are the only two solutions I see, unless someone starts a foundation to raise money to provide the specific living and working opportunities for Autistic people that aren't considered permanently disabled.

I don't see much potential for living or working assistance coming for Autistic people that aren't permanently disabled, from the government, at least not the government here in the US.

Last edited by aghogday on 06 Aug 2011, 11:51 pm, edited 3 times in total.

ahogday, that is a common misrepresentation of what ASAN believes. We do think that autism is a disability, and we advocate for better supports for all autistic people, including in housing. We are strong proponents of the Community Choice Act, which would allow disabled people to live in the community with supports rather than in institutions. I strongly recommend looking up the Community Choice Act, which has been a long-time initiative of the larger disability rights movements.

Please research ASAN's actual positions before making assumptions. The amount of misrepresentations on this board is pretty staggering.

Guilting the public about abortion issues and demanding more funding for social services is not a position I support as a person who depends on support services. I think the methods in which are implored to represent issues are potentially devastating and are done in ways that in fact I am quite fearful of. I do not trust ASAN nor will I hand over representation of myself even in premise of autism to them as they are so very inexperienced it hurts.

Here are my statements again in reference to ASAN.

I have researched ASAN's support of the ideology of neurodiversity and how the organization defines disability.

While ASAN's website clearly defines Autism as a disability, the definition of disability clearly stated on their website is not the commonly understood medical definition of disability, it is the definition within the neurodiversity movement, which does not reflect the current scientific understanding that Autism is consistently a disabling disorder that is often permanenty disabling by nature of the impairments associated with Autism.

Instead they suggest on the section of their website entitled neurodiversity and disability that "a person becomes disabled not as an inevitable result of his or her condition, but rather because society has not accommodated his or her needs".

They go on to state that "there are real challenges associated with autism and other neurological differences. The social model draws a distinction between the underlying condition, which exists regardless of cultural attitudes, and the disability, which consists of everything that goes into society's representation of the condition."

As reported by earlier research, facts provided by governmental statistics, close to 400,000 children in the school system were born with developmental disabilities that will likely require support into adulthood. Society didn't cause the disability of Autism, in these cases, the children were born with developmental disabilities, as understood by science.

My mistake though, for bringing up ASAN the organization wasn't necessary to make my point, it is the neurodiversity movement that suggests that Autism inherently is a neurological condition of difference, that requires understanding and accommodation by society, rather than a consistently inherent disability, ASAN just happens to support that ideology.

I think it is true that society should understand and accommodate people with disabilities, but I see it as unreasonable and an unscientifically sound notion to suggest that it is society, itself, through lack of accommodation, that causes Autism to be a disability.

I am aware that ASAN supports the Community Choice act, and have already stated that I think that independent living for Autistic people is a wonder ideal if the government will support it and fund it.

My main point in my last post, is that the funds for all these programs are largely supported by medicaid programs that many people with Autism don't qualify for. Along, with the permanently disabled people that have Autism, I see it as a real problem, and if I'm not misunderstanding you or the other individual you two see it as a problem also.

I stand by my opinion that ideology that moves away from the scientifically understood and accepted fact that Autism is a disorder that inherently causes struggles in life, and instead blames society for the disabling aspect of it, is not the best way to market the issue if one hopes to gain the assistance they need.

The government by law provides assistance for those that are permanently disabled from the condition but most don't qualify for any residential community care benefits.

On the other hand current research suggests that environment may play a role in the development of Autism, so the byproducts of society may play a significant role in the development of autism; we don't have conclusive evidence yet of what they are, though.

If I you think I have misrepresented any other facts please let me know what they are; if you can provide evidence that I am mistaken, I will be happy to correct my statements

I have asked for evidence from others that have presented assertions that I disagree with and have provided evidence that refutes those opinions, but have yet to receive any evidence to review that refutes the evidence that I have presented.

I will go back to the other post, and replace ASAN with the Neurodiversity ideology, since the problem I see lies within the ideology, not just ASAN that happens to support that part of the ideology, as it conflicts with what science understand about Autism, and how it is reasonably viewed within the community, that we hope will accommodate our needs in the future.

I agree it wasn't reasonable to use them as an example, since many others outside of the organization of ASAN, support the neurodiversity ideology.

I by the way, think there are positive aspects of the neurodiversity movement, in that it accepts that society is comprised of many neurodiverse individuals. I think neurodiverse is a better general description of everyone that comprises society rather than Autistics vs. neurotypicals.

However, I part ways when the movement suggests that conditions like Autism, Schizophrenia, Dyslexia, etc. are not consistently inherently disabling, instead suggesting they only become disabling when society doesn't accommodate the neurological differences associated with these conditions.

Last edited by aghogday on 06 Aug 2011, 11:33 pm, edited 1 time in total.

ahogday, what you describe is the social model of disability. It wasn't created by pro-neurodiversity people in relation to autism specifically, but rather the larger disability rights movement. The neurodiversity movement is actually relatively new. Obviously, you're free to disagree with the social model of disability. Many people do. But I think it's important to understand neurodiversity in this context. Here's a brief history of the social model of disability.

Thanks for the link, I found it interesting. I agree that many of these sociological factors impact disability, and have often presented an opinion that they do. But, in my opinion neither the medical or sociological model for disability can be disregarded if one is to gain a balanced understanding of all the factors at play. I think if one gives merit to both models this may lead to a fuller potential of life for the adversely impacted individual, whether it is a potential cure, intervention to prevent dibilitating factors, new treatments, or accommodation and understanding in life.

It seems reasonable to me that research for a cure or intervention for a condition that can require life long dependency on others warrants attention as well as all of the possible accommodations and understanding in society that can reasonably be provided.

Now try answering the question:

...then when you have done that, try to give me a simple breakdown on how you see it as advantageous to autistics, the government, or even the man in the moon, for autistics to be systematically disenabled and then herded into residential services that not only regularly infringe their fundamental human rights, but also exploit them and profiteer to the extent of billing many times what that service provision actually costs.

Because that is what, under the excess verbiage, you just tried to claim.

People are not motivated to provide services unless they can profit. Government is not motivated by profits but tends to cost allot more. I am not sure you have provided a reasonable solution to how it is the world is. If I could choose how money is used then I'd buy houses to lower costs and use profits to enable opportunity and not give that money to a CEO or investors.

Which would save the government a staggering amount of money (particularly in a major property slump) opening the door to providing more, better services to more people who need them...so my question is:

Why do you not have the confidence to believe in and fight for your own, far better, idea exclusively?

Actually I am in the position of with qualified help to open a day employment program. I as a self-advocate head, own and founded the Humboldt Includes campaign and autism candles project. In the works after study I will consider doing supportive living vendorship. I do have a vision in my mind for it and as well as for employment.

It is my belief that when others are dependent upon others dependency it is not at all optimal. I benefit from supportive living services. I believe a combination of unique employment endeavor and housing least in part could derive capital to improve quality of living circumstances and opportunity. Supportive living also allows me the company that gets me into the community and that's how my advocacy has been possible.

So again I ask ci...why ON EARTH have you been supporting "Autism Speaks" rather than yourself and your own aims and ideas? To me that is inexplicable.

I am not a member of Autism Speaks. Yet at the same time I will work with members of all sorts of beliefs. However ASAN's approach living as it does in the divide of two sides I believe has made some large mistakes namely combining the abortion issue and asking tax-payers and the government for money in the same context in protests. It has to be the worse kind of advocacy representation and I personally and professionally will apologise for their misguided and harmful approach if it somehow reflects upon myself or effects myself and others not involved for their and my protection in survival. As for Autism Speaks and the alike I have taken a tremendous amount of time out of my regular time for other efforts as the issues attempted to spill over on my organization when some pride advocates politically attacked my organization when in their mind everything autism had to do with Autism Speaks Vs them in the world.

It is my belief many people care about people with autism but at times some of those that seem to care go a little overboard. To a certain extent we can deem the label as something perceptually separate to an individual but it is still part of a person. So when they get into criminal justice like efforts and frame autism for instance Autism Speaks ought to be corrected as a general civil and human rights issues. Regardless in spite of the colorful efforts of Autism Speaks to perceive autism as strictly the negative so as to help as it seems what others have to say with regards to the individual spirit of people having autism is just as important. However methods on both sides seem to me to be a little to extreme at times where applicable and if not counter productive to an all around balanced coexistence with the world around individuals with autism.

It is my view to accept any open assistance from individuals and groups from differing perspectives but to never depend on them nor oblige any kind of threat for receiving assistance in my efforts others join and who also help. If a group proves itself to be so very politically unstable it will attack these such efforts for attempting to get the help of others in the autism community simply because another group does not like that group helping they will be ignored and if needed confronted. My efforts are entirely manifest of a framework of solidarity in origination and I keep it this way to protect it. However the likes of both sides are welcome to help and my focus is on employment opportunity and potentially eventually other rights based backed pursuits like independent and supportive living innovation to better my and other peoples outcomes.

I do not wish to live as I do for the rest of my life nor expect many of the others in similar situations to do so as well.

Neither do I ci...though I accept now that I will, because there will be no realistic options in my lifetime...and that the only effect organisations like Autism Speaks will have on my life is to make it even worse...if they get a chance.

Maybe you should have paid slightly more attention to what I was actually saying and less to what aghogday was saying *about* me?

Don't tell him and spoil his fun, but I am not particularly with ASAN, and never said I was.

My efforts consist entirely in damage limitation in terms of the various organisations that feed off Autism Issues.

I am not a "people person" so I do not get involved in advocacy or support networks at all - it would just be a waste of time and energy. I leave it to those better suited to it. That is not a measure of approval or disapproval, just awareness of my own limitations.

Invite ASAN here and i will settle some issues.

1. Combining issues of abortion and social service funding.

2. Attacking anti-isolation advocacy and then not providing an alternative to help individuals isolated at the same time. Meanwhile these same such individuals protesting it ere very included. It seemed like a great injustice.

If this is publicly corrected It will be beneficial but as it is their advocacy is a threat to human rights progress. One thing I have learned is in politics the face of which can say one ting but intend to do the other. If ASAN obliges the responsibility of my and others best interest they to as they expect of Autism Speaks ought to be called out and changes made or they cannot expect that from other autism organizations.

[youtube]http://www.youtube.com/watch?v=RKlTAxTvKkY[/youtube]

Then ci, it is you who must seek ASAN out to put your point. I am not even sure that they are generally expressing the views you object to. I have certainly never seen them do it...(incidentally, I do not hold or express any of the particular views you object to myself) but be that as it may, you must challenge ASAN on these issues, not just anyone who challenges Autism Speaks!

As clearly stated in my previous post, I like the concept of the community choice act and support it. If I had to live in a community care home I would hope that an idea like this could be accomplished. Unfortunately it's not looking like there is going to be much progress on this unless the state of the economy approves, and the general public becomes more friendly toward the need for social programs, but let's hope progress is made.

The permanently disabled autistic people that qualify for medicaid services are in a position to utililize the residential care facilities available that accept medicaid. Unless an autistic person is a low income permanently disabled individual they don't qualify for medicaid

I've requested the information twice and you still haven't provided any evidence that these corporations are profitting unreasonably from the care of Autistic people. Medicaid isn't giving them $300,000 a year, so where do you think they are getting this money from? Medicaid has strict regulations on what they will pay for residential care for the permanently disabled, and it is a bare minimum allowance.

Corporations aren't going to build facilities, that they are going to lose money on; the only way we are going to see the improvements needed is if the government directly funds or provides grants for the new facilities or a benevolent non-profit foundation provides assistance.

There are some non-profit foundations like SAGE, that are at least trying to find a better alternative for those that the farmstead alternative suits.

It seems like I am in full agreement with you here on the issue that is the most pressing at this time, and that is better residential care homes for permanently disabled Autistics. Medicaid pays for the services that are received; the government decides on what is paid; the same rules apply to all others that receive medicaid services.

The government wants to reduce social program funding, so realistically it looks like benevolent souces are the only answers we have. We have to look to foundations like the SAGE foundation that has this as their non-profit mission.

As far as I know there is no specific help for higher functioning autistic people for housing, and no specific foundations to support residential communities for them, because there is no medicaid funding available to fund subsistence costs. The only help they can receive is the help that anyone else that is poor with a partially disabling condition can receive.

I'm not sure that the government or country is going to be able to provide the resources and assistance needed for the permanently disabled autistic people that are moving into the adult population. The step up you have been talking about for the autistic people that don't qualify for medicaid, means dollars, and dollars don't magically appear unless someone provides them, that wants to provide them.

Hopefully there will be some private benefactors that understand this need, possibly start a foundation, and provide it to Autistic people that don't qualify for medicaid. There are already foundations that help provide scholarships for Autistic people, maybe there is potential here. Can you think of any other realistic source of help for this need?

When you talk about a step up for Autistic people that aren't permanently disabled, trying to find a home and a place to work, what are the things that can be realistically accomplished by a private benefactor foundation. Obviously with close to a million Autistic people that aren't permanently disabled they are going to be limited in where the dollars they might raise go. Do you have specific ideas of where the money might be used best?