"Autism Speaks" Response to Autistic Input

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It's s step in the right direction. Years ago I did not agree with Autism Speaks. More people with autism started posting on their messageboards and I think that led to a positive impact for us. Thanks guys!

1. Thanks for answering the first question, if having a great deal to do with the ASAN organization coming into personal contact with the leaders didn't mean you were part of the organization, you could have clarified it when I asked you about it the first time, if you cared to.

2. The recent research that Autism Speaks has, in part funded, has clear potential benefits for the future of people with Autism, as I have discussed before and will repeat later on in this post. Your question to me was a hypothetical rhetorical question as well, that is not a relevant one to my personal life.

Believe me, as a parent that had a disabled child, chances are very good that you would accept whatever help that was available for your disabled child to have a better life if you were actually in that situation. That's what drives the parental support for Autism Speaks, there is no stronger natural instinct in life than for a parent to do whatever is necessary to provide support for a child.

3. I provided evidence on care facilities from a non-profit organization, that has been cited by mainstream news sources, in an attempt to adovcate for Autistic Adults, and a public source on care in Maine.

Here is some more evidence for the cost of long term care from another non-profit organization and a well respected finanancial services group. The 77,745 is an average for the whole country; some states average lower some states average higher, but no states come anywhere close to the 300,000 figure that you may of misunderstood, that comes close to the realistic average cost for autistic individuals that need extreme levels of care in state developmental or psychiatric institutions, which the department of health and human services indicate average $250,000 per year.

Keep in mind these averages presented in the following quote are full time nursing home coverage, including care for the elderly/disabled/alzheimers patients etc. Assisted living residential care costs average less at 39,135 per year.



http://www.lifeandhealthinsurancenews.com/News/2011/5/Pages/Genworth-Average-Nursing-Home-Cost-Rises-34.aspx

Another source:

4. Note, medicaid as bolded in the text pays most of the nursing care costs, but certainly will not pay more, unless there is illegal medicaid fraud, which is a concern among all insurance covered costs for every medical care issue in the US. It has nothing specifically to do with Autism.




http://helpguide.org/elder/nursing_homes_skilled_nursing_facilities.htm

Link that provides a map with averages per state:

http://www.genworth.com/content/products/long_term_care/long_term_care/cost_of_care.html

5. What are the detrimental factors of research that has lead to earlier screening tests for Autism that parents and physicians can use to detect Autism and research that has provided evidence that environment may play a much larger role in the debilitating symptoms of autism?

The potential benefits are obvious in that successful intervention may be started earlier as a result of the earlier screening test and further research on environmental factors conducted in the future may identifiy specific factors that can be eliminated to reduce the debilitating symptoms of Autism. Autism Speaks, in part, funded both areas of these latest research results, that are considered breakthroughs in the scientific community.

6. Please don't fabricate stories that Autism Speaks is paying me for anything. I am in no way connected to the Autism Speaks organization or the ASAN organization and provide financial support to neither organization. I am a person with autism trying to provide objective factual information to help other people make informed decisions. If I provide any evidence of factual information that you can present evidence to refute, I will glady correct any information I have presented.

You really do presume an awful lot don't you?

...and present very little information at all.

It seems like I remember, now, your home as the UK, Ireland I think to be specific, please correct me if I am remembering incorrectly. From the little research I have done there, I have heard some horror stories, that I don't think would be as likely here in the US. Your statistics and accounts, could be more relevant there than here. I have heard anecdotal personal stories from others that have presented opinions here, that confirm some of what I have read.

The evidence I have presented from the US is correct, but I can't speak for all the facts and figures for the UK or Ireland, and am not sure of the environment of which you live. The same too can be said here, though, depending on what part of the country one lives in, one may be treated better, receive better care, and be treated better in the workplace.

I worked for the government for over 20 years, and had a great deal of job protection from discrimination. It was a haven for many people that likely would not have kept a job in the private world because of their differences.

Each of our views could be biased much differently from where we live and our separate experiences; If I had lived your life, I might understand the depth of the emotion you attach to your hatred of how society treats those with disabilities.

I do know that costs for residential care are higher for Autism in Canada, but our medicaid system is not as generous as social programs in other countries. That affects individuals, but it also affects reimbursement to facilities that take care of people as well.

I searched to validate my memory that you were from Ireland, and found what I remember seeing here:

http://www.wrongplanet.net/postxf165413-0-45.html

Much of what you have said now, makes sense it context of that post, where you live, and your personal experience. No public professor here would dare make such a public statement, as stated in your post, about a group of individuals categorized with a disorder or disability, and not expect serious admonishment or a loss of position.

Hard to discount material security unless one experiences life without it, from your account the problems we have with homeless people with disabilities, is not the same in Ireland, so that colors my view of people here as well.

Much of what you are talking about seems specific to where you live. I also noticed that there are not as many government regulations in the UK and Ireland as far as therapies like chelation therapy, that is not an FDA approved therapy to treat autism in the USA, unless one is tested positive for heavy metal poisoning.

There are concerns here in the US that are different than the concerns in Ireland related to disability and subsistence. I saw nursing homes that cater specifically to Aspergers syndrome in Ireland. We have nothing like that here. Medicaid offers bare subsistence requirements in the US, it sounds like subsistence benefits are much more generous in Ireland and cover a larger range of ASD's than here. There is little help here, for people with Aspergers syndrome.

I can respect your view there, and would hope that you can understand that the concerns weighted here in the US are different than the concerns in Ireland, both for the general public and people with Autism.

At the risk of repeating myself, you really do presume an awful lot don't you?

...and present very little information at all, you just assert things and presume everyone will accept them as facts.

It is, however, unlikely that anyone ever does.

Anyway, I can assure you that I, like most people, have a comprehensive grasp of the difference between Ireland and the USA.

I am also fully aware that, shocking as it was in an Irish context, Professor Fitzgerald's nasty little speech would be very mild in the context of "Autism Speaks", if not an actual improvement on their norm.

You will be a lot more convincing if you ever come to grips with the fact that being completely stupid is not, generally, a feature of Asperger Syndrome or HFA and you probably need to target your pitch considerably higher up the intellectual scale in future.

Welcome to America, Autism Speaks is not set up for Aspergers, HFA, Geek Syndrome, for here those are not considered disabilities.

They are, as you have shown here, mearly an excuse to be disagreeable.

You would fit in with ASAN, University students looking for a kickback, a free laptop, anything else they might get, by claiming to be autistic and disabled. Autism Speaks has all that money and should give you some.

It is the new minority game, just like those who claimed to be part Black or Native American, to steal benefits from the real ones.

ASAN drives cars, attends University, holds jobs, and organizes social networks. The Autistic Disabled do none of those things.

The Autistic Disabled have little use for money, their parents do, the government does, and the 0.03% of the total cost that Autism Speaks raises is needed to study how to make a lot of people's lives better.

They do not make Solo Grants, there are matching funds, the research is much more than the fifty million they put up. Every dollar spent become two or three.

We have a lot of people in America that have a personal income larger than everything Autism Speaks raises. We have a lot of Billionairs that keep it in the market, and today would have lost 50 Million. Overall market losses in one day, over a trillion, which is about what a 30% tax increase would raise, and pay down the national debt.

In the world of real money, Autism Speaks is a second rate bit player. If they broke up the $50,000,000 in a Democratic Autism Community, 3,000,000 we know of and a lot of pretenders, it comes out to $15 a head, less expenses of delivery, which comes down to, they could print one comic book and mail it out Media Mail.

So you want your free comic book?

Usually goes hand in hand with others calling people r-words because they are offended that somehow they might be associated with individuals of severe cognitive impairment. People such as yourself typically do not understand that truth entails at times weaknesses and if you want to make autism into a social clique belief system that you attempt to enforce others to abide by or else they are bigots and ignorant to push an agenda. Most people have little concern for the differences between Ireland and the U.S as it's not their interest but does not make them dumb.

Instead of professing your superiority in regards to how others assume why don't you provide more information. One thing you have failed to realize is that a horrible depiction of autism differs from a defined whole person. Individuals have the right to view autism in the disability sense and have it portrayed so as to garnish research funding. This is a basic common sense human right and does not go away with the removal of Autism Speaks. Seems as if the likes of you are only serving the best interest of the Tea Party and the alike with related politics and on into very bad representations of supposedly pro support service funding persuading others using abortion politics such as ASAN to with political hostility and guilt make demands.

According to someone I know who is not exactly in the position to know for sure group homes are profitable business models. I myself would qualify for a group home. From what I know of some of them and a hybrid form of such a model is they can be horrible violators of basic guaranteed liberties. Grown adults are forced to be treated as children and in some regards grounded for not complying when they are otherwise adults. This kind of mentality I am prepared to confront in the media and have garnishes some examples and there are many unhappy people with disabilities members of group homes and the alike.

Autism is a disability when it manifest as defined in the DSM. Those claiming to have autism who think it's just a great difference don't seem to have all the criteria met. I think the government and medical establishment tried to help to many people that didn't exactly match all the criteria and some of them then turned on them and stabbed them in the back for bothering. I like the idea of the new criterion and am provided services already. It will help people get the help they need and the social clique pride people can go away because it's getting old and counter productive.

I'm just trying to understand your point of view. There would be no reason for an individual to understand the disability laws, and costs associated with Autism in another country, unless an individual had a reason to research it. I did a little research, and can see some differences.

I've linked my facts with verifiable resources; and have tried to find information to support your assertion that the average costs for residential care for Autism is $300,000.

Maybe that is the case in Ireland, but again, the evidence I have produced from a number of different resources puts the average at around 70,000 in the US.

In a reasonable discussion, if you had access to resources that refuted the multiple sources of evidence I have provided, to describe conditions here in the US, there would be no reason not to provide that evidence, if you cared to support your assertion.

There is no need to denigrate others with Autism in an attempt to denigrate me. I would never purposely do that to another autistic person, or any other person with a disability, and would correct myself, it it was pointed out to me that I was coming across that way.

I had a language delay and was diagnosed with PDD NOS in midlife, after adapting my way through life, with low verbal skills, so I might not meet your expectations of communicative intelligence here on this website; it wouldn't be the first time and won't be the last that I have not met the expectations of someone else.

I know what it's like to make the best grades of anyone in the class, and be fortunate enough to be able to obtain three college degrees, but I also know what it's like to be laughed at because I could not organize my verbal thoughts well enough to make coherent conversation most of my life. I listened much more than I talked. I don't assume that anyone with autism has a lack of intelligence; sometimes it is a matter of understanding things and not being able to verbally communicate them.

Autism Speaks has attacked the impairments of Autism in some extreme ways in the past, that I haven't agreed with, but no one here has presented evidence that the organization itself has suggested that people with the impairments of Autism are less than human.

If you have that evidence you are welcome to present it, but otherwise I take greater offense at your professor's speech than the "I AM Autism" video that attacked the condition of Autism, not the child, that I felt was inappropriate for the general population to see. Other's can look at your Professor's speech provided in the link to your post and form their own opinions as well.

I think while the "I Am Autism" video was not produced with any malicious intent, I can see where a video like that is something no Autistic child should see.

With the research that has been done the last few years, in breakthroughs in communication with Autistic individuals that were considered of low intelligence, we find that they understand life in ways that no one could have imagined they understood it, before they gained a method to communicate it. I think Autism Speaks understand this better now, that it has been brought to their attention.

Coincidently, tonight I heard a popular right wing radio talk show host, state that the people that are ruining the country might have been nerds that were bullied in school. I couldn't help but to think about your professor when I heard that comment.

You have not provided any "sources of evidence" for anything you just keep claiming that you have and presuming that, if you are insistent enough, you will be believed because no -one will have the energy to check back.

As a matter of fact in Ireland the cost to the state of low supervision residential services for Asperger syndrome and HFA in Ireland seem (for some curious reason) to fall into two distinct bands:
*€60-70,000pa
*€11-120, 000pa

Even at those rates the cost to the state is artificially inflated and represents huge profits for the companies involved and very bad value for money for the state.

The cost to the state of high supervision residential services for low functioning people with unspecified intellectual disabilities and challenging behaviour that would include Autism begin at about €175, 000, though €330,000 is not uncommon and €450,000 is not unheard of there is no way to establish which of these figures relate to Autism.

UK figures for similar services are significantly higher with residential schools for Asperger Syndrome and HFA regularly receiving £180, 000 per pupil (for comparison the full fees for top people's boarding school Eton are between £35-40,000 pa).

It came as quite a shock to me to discover that in the USA, where austerity measures targetting the autistic and disabled are even more draconian, residential services for Autistics are managing to net between $200, 000 and $1 million with $300,000 as a popular recurring figure.

You produced one biased report prepared for a provider of residential services seeking support and funding that cited the figure of $70,000 and a press report citing between $200, 000 and $1 million...but don't let that discourage you from claiming that you produced "several sources" establishing the figure at an average of $70,000 if it suits the spin you prefer on this particular red herring.

Because that is all it is...a red herring to lose the concentration and attention span of anyone stoic enough to try and follow any of your postings without you having to allude to the real issues at all, while you try to drum up support for "Autism Speaks" by making preposterous and totally unsupportable claims about their activities, integrity and intentions that presume those who may read here to be hopelessly naive and completely stupid, often using transparent and patronising techniques of manipulation more suited to an audience of children than the intelligent, largely adult, audience here.

Well I still see now that provable facts are not necessary present from both sides just numbers on a screen and counter extremes over Autism Politics. My suggestion is to scientifically prove points as this conversation still is not about quality of life and improvements to choices but concerning extremes.

The arrogance is dripping and comming outside of my computer screen and perspiring in form of politics as usual. When there are fact there are facts. Facts are not classified as facts unless they are proven as akin to 1+1=2. As far as ASAN supporters and their methods they are terrible advocates at times causing more problems then good. Raising a hell does not need to create hard feelings and the loss of support for supporting our quality of life as what ASAN does with abortion guilt and the inability to compromise. These extreme politics are no where near as popular and supported as they would profess anyways.

The public does a hell of allot to help myself and others already. they don't need to be treated in such hostile ways. My suggestion is to revise approaches on the ASAN side. With regards to costation issues provide facts with credible sources and I am talking about the last poster for certain I am unsure of ahogday.

Most neurotypical bosses have nothing but contempt for people that suffer from autism. These bosses will only hire an autistic if they cannot find anyone else to do the job. Managers are trained not to show any pity or compassion when it comes to their ability to fire autistic workers that they consider to be bad.

As a boss myself I am self-realized to make tough decisions and cut through the bull when applicable. In advocacy I say it bluntly and here is my response to you.

1. The more you put across your isolated experiences as facts of reality the more you will create contempt for individuals with autism in their real-life experiences both in their beliefs and others fear of confrontation with individuals with autism.

2. I do not out-right agree with you simply because I do not wish to use false fact to say hey look this is the reality so support our employment program.

3. You speak nothing of positive experiences others or even you yourself have experienced. In bridging the gaps between the minority and mainstream a philosophy of bonding is needed to optimize potential inclusion. Instead what I see at times is philosophies of experienced oppression with no human relation bonding solutions.

Don't give me these myths about bosses having to make the tough decisions in order to stay in business. If a neurotypical asks a boss for clarification concerning work orders the boss will gladly give a thorough explanation in order to save the company the costs of mistakes. But if an autistic asks a Boss for clarification the neurotypical Boss will regard the autistic as stupid and not being worth the time it takes for training. What we have here is a double standard which means autistics are forced to work without any clear instructions and left to be held fully accountable if they make a mistake.

Tough decision are made in business all the time and that's the reality of the harsh world of business. With regards to your claim all bosses think people with autism are dumb and do not take the same amount of time to clarify orders I'd need proof. I do not claim all bosses are tolerant but your claims are to rigid as far as they being certain fact to be acceptable. The them vs. us mentality of N.T's seeking to oppress us is akin to treating me as if I am a child that knows no better and whom will believe everything you say.

I do not believe potential fallacies even if a person has the same or similar diagnoses as me who expresses them.

Tough business decisions do not mean fair business decisions.

My sister in law had autism and she had no clue how to put together simple parts for a household kitchen appliance called a juicer which was taken apart for cleaning. I had to give her mathematical commands such as rotate the upper part 90 degrees in the horizontal plane. Teaching her was like trying to program a robot. Can you imagine how frustrating it would be for a nuerotypical boss to teach her using common sense methods?