AUTISM SPEAKS

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Hi Sweetloaf, just in case you didn't notice this thread hasn't been responded to in almost a year, according to the individual's post record you responded to, that was the last comment that individual made on this website in close to a year now. But you are correct there is no way to test for autism in a fetus at this time, but they continue the research in hopes to find one for intervention purposes to reduce developmental disabilities seen in Autism in the future.

There was a recent link that I provided in the other thread about some research they are actually doing on foetuses to scan for Autism, they are hoping to provide some interventional help in the future. It is a five year research program. That research is in Australia and has nothing to do with autism speaks, though, just to clarify.

It is Sweetleaf, and no I was not aware of that...and this thread was close to the top of the page and marked as unread or whatever I certainly did not go digging back and bump it....and they can do all the research they want but that will not create the existance of an autism gene.

Sorry, didn't mean to spell you user name wrong. I've already been involved in the post since it was revived so realize you didn't dig it up. I agree they are not going to find a definitive autism gene. What they are doing in the most recent reported research is trying to identify specific markers involved with brain development related to Autism. There is recent evidence that suggests that communication impairments may be the result of higher than normal levels of prenatal testosterone.

If they determine in the scans of foetuses that higher levels of prenatal testosterone along with specific genetic markers for brain development work together to produce problems with brain development and resulting communication problems, they could potentially find methods to prevent an imbalance of prenatal testosterone to lessen the impairments. I have no idea what those specific methods might be. I would hope they could find preventive measures to normalize testosterone levels rather than actually trying to alter testosterone levels. That's just speculation though.

We are not anywhere close to genetic engineering, the most we can do at this point is to find markers that relate to factors where appropriate intervention can be effected.

Thank you for your information.

If Alex does not disclose financial arrangements between himself and Autism Speaks, and between WP and Autism Speaks, than I can not begin to trust anything he says that might be related to Autism Speaks or its agenda.

This is troubling.

My understanding is he is a non-confrontational individual. I've never heard him say a cross word to anyone, and never shown anything but respect to anyone that I have seen. He's got Aspergers, has his own eccentricities, but a good person at heart as far as I can see, trying to do the best in his personal life, and Autism Speaks is supporting that effort for that personal effort.

The site belongs to him, it's an helpful endeavor to others, but it is also part of his private career; it's not likely that Autism Speaks would want that information presented either, but as a charitable organization, that must provide open disclosure, there might be an avenue there to find out, but I really think what you will find, is that they are financially supporting the video endeavor, potentially a few thousand dollars here and there. I think someone mentioned general numbers like that in this thread, but I'm not sure what the source was.

I have spent a great deal of time researching Autism Speaks, in trying to understand what the anger is about. Their view to me seems fairly the same as the government, and the general public, in regard to Autism.

The statistics on Aspergers is sparse, indicating an extremely small percentage of those individuals diagnosed on the spectrum, I've seen estimates from various sources that suggest figures that are as small as 1 out of every 16 cases of spectrum disorders. I don't agree with it though, I'm sure there are more diagnosed cases that aren't being measured.

The government and organizations go by these statistics though, and focus their attention on what they see as the most pressing issues, and it is obvious that focus has been on children with every kind of autism, except for Aspergers.

In general the parents, families, and friends are funding Autism Speaks over concerns of children with Autism Disorder (not Aspergers) in hopes for a cure and better treatment, and the government is funding a similiar research endeavor for a goal to mitigate the future cost issues that are projected to be associated with Autism Disorder, of course, along with the normal humanitarian promotion of the issue.

There is little to no focus on Aspergers there as well; most of the individuals studied have autism disorder or PDD NOS, because the studies that provide statistics are almost entirely limited to the special education realm; that is where the tax payer dollars go.

Other than that I don't see Autism Speaks much different than any other charitable organization trying to raise money to cure something or make a bad situation better.

People are paid well to run these type of organizations, but they are held accountable for results; without the salaries the organzations would not as likely recruit the cream of the crop that can produce the results they seek.

From a business perspective the expense for this is justified by the results. Appealing to emotion to raise funds is common among all these organizations. People give because of heart strings, marketing 101, for charitable organizations.

They have taken action based on some criticism from higher functioning autistic people in modifying their marketing techniques, but they are not going to let go of the heart strings, without that part they would not be nearly as successful, simply because of the marketing 101 perspective of humans, emotions, and giving.

Of those that are diagnosed with Aspergers estimates range as high as 80 to 90 percent that don't maintain fulltime employment, with much higher unemployment than the general public. The numbers of individuals with Aspergers, while I see the diagnosed as greater than these numbers that get as low as 5 out of 10,000 people, comprise little of the total voice that drives support for a cure and treatment.

In addition the lion share of support to private organizations, is provided by the families of those that tally much greater numbers related to Autism disorders other than Aspergers.

The numbers of people that support the government's efforts and Autism Speaks efforts number in the millions world wide. Many people have heard the word Aspergers but most don't understand it, and even if they know it is related to Autism, per Temple Grandhin, Rainman, and all the other cultural stereotypes, they don't see it as the same thing. People with Aspergers don't normally multiply 10 digit numbers in their head, or bang their heads against the wall.

Our country is full of cultural stereotypes, Autism Speaks presents the problems with more severely disabled autistic children, but it is presented more vividly through the kids of people like John Travolta, Doug Flutie, and a limited number of adults like Rainman and Temple Grandhin (both seen as an enigma), and from others in the mainstream media.

That's mainstream awareness though, real life parents, families and friends of Autistic people produce the majority of the giving. That's just human nature.

Autism Speaks follows the marching orders of their supporters, and the government follows the marching orders of cost concerns, and taxpayers, not many of which understand or know anyone with Aspergers.

ASAN is a small voice crying out in the wilderness saying we're here, we're here; your not meeting our needs.

I've lived with autism for 47 years without a diagnosis, and listened to what I hear are the needs of people with Aspergers on this website, and the common element of need I hear, is people should hire us, accept us, and give us the same chance to live that everyone else has.

The stuff that the government and autism speaks is doing is concrete stuff: research, funding treatment programs, awareness, but again mostly related to the disabling aspects of autism not the potential enabling aspects that some need.

So, how do we get people with Aspergers jobs and acceptance. First of all, we are not going to get society to change for Aspegers, that's reality, it's human nature, it's numbers, and simple statistics. It is hard enough for minority groups of individuals that people know exist, in significant numbers. I'm sure you understand that part well, through your own personal experience.

As stated before Aspergers is not even identified as one percent, more like 5 in 10,000. The other folks with Autism, are the ones that are seen as needing treatment, a cure, and subsistence support in life, whether all of them do or not.

John Elder Robison pointed out this reality recently, in a blog I saw, that wasn't accepted well by Aspies that responded to the blog that it was presented in.

His solution was we have to adapt to what is here now, because it is all we have and the future is flying by fast, pretty much the way he and others did before they got diagnosed, and the only current method that really exists at this point, other than the assistance that some can get in the work place through the "ADA" if they are in just the right circumstance for it to work out for them.

The reality I see is their is not much that Autism Speaks is going to be able to do, or the government to meet the needs I hear on this website of jobs, acceptance, and the same chance of living as others. The government is lost on doing it for about 20 percent of the population, so there is practically no chance they are going to do be able to make it happen for people with Aspergers.

Acceptance comes from understanding. I've heard it stated many times before that the only way to understand a person with Autism is to enter their life. A parent, a close friend might do that, but I'm not sure a full semester in the class room could do it for anyone else.

The bottom line I see is self advocacy for one's self. It's that way for everyone in reality, some get more help than others. I wish acceptance could be provided by government rules, but it's not a realistic expectation. I wish that jobs could be provided by government rules, but that's not a realistic expectation either.

All that's left is to adapt the best we can, and hope for the best. That's really where I see the focus needs to be and the only realistic way of helping people with Aspergers to suceed in life.

There are ways that the older among us found to adapt that worked for us. For me it was vigorous exercise, fortune in finding a job that was not too stressful, in an environment that I was able to adapt to, understanding my limitations with stress and managing it, and most importantly adapting to others, instead of waiting for them to adapt to me. I'm not sure I did a great job of it, but it worked well enough to get by.

There has to be a thousand other things that have worked for others that are worth sharing to successfully adapt, in a world that requires an effort that is different than the effort required by others.

ASAN has good intentions as far as I can see, but the idea they support that society is causing the disability and society needs to change for us, whether or not it is true or not, is meaningless as far as I can see to create solutions that will allow people with Aspergers to survive.

There is absolutely no chance that 9995 out of 10,0000 people are going to change at all for the other 5 people. Human nature won't allow it, even if it was a mandated change.

Instead people with Aspergers need solutions for adaptations to make it in life the way it is now. Every potential adaptation possible that has worked for others to consider, a focus on self survival rather than change in others. Concrete stuff that works now. Autism Speaks and the government could provide that information, but even if they do they are a taboo area of support already for many.

That's my opinion, that's John Elder's opinion, but it's not a popular one, even a hated one among some to suggest that people with Aspergers need to find ways to adapt to society the way it is now.

It is the humble reality, that people with Aspergers are in this world for survival, and they need whatever help is going to allow them to better adapt and survive in the world the way it is now.

Maybe in the future, in the US, once Aspergers is assimilated into Autism as one disorder, more programs might be available for support. But, with the financial condition the way it is, in the US, it's not something that seems will be funded to a significant degree.

Whatever money that is available will likely go to subsistence, rather than what people with Aspergers seem to be asking for: a normal life with a job and a future.

Changing society as a whole for acceptance, is not part of any mathematical solution that I can see.

The numbers are too small of those diagnosed with Aspergers; that will likely need to be accomplished through individual adaptation to the way things stand as they are. The only realistic way there is now and the only realistic way likely to exist in the future.

I think you're pretty much wrong about everything in these paragraphs, and John Elder Robison was wrong with regards to that interview quote, especially regarding multiple facts that he either didn't know about or didn't understand.

In the US, there's something called the "Americans with Disabilities Act" which actually makes accommodation for disability a legal requirement. Appealing to numbers that are not empirically validated doesn't help at all and as far as employability goes, a lot of people diagnosed with autistic disorder, PDD-NOS, and Asperger's Syndrome are in exactly the same boat and could be accommodated in similar ways.

Separating people diagnosed with AS out not just from the autistic spectrum but from disability in general and proposing numbers that aren't even empirically validated to make the argument that we have to adapt because the world won't adapt to us is so far off the mark. It amazes me when I am on these forums focused on a specific disability that people seem to never think outside of that disability. The fact is that a lot of people have disabilities that need to be accommodated in the workplace, and need to not be discriminated against when trying to find a job or on the job. There's no reason to pick one group and say, "well, you're too small to help so you'll have to suck it up and pretend to be normal." Especially when that group can and would benefit from the same accommodations that would benefit approximately 1 in 110 people, which is much closer to the truth.

Most disabilities have small groups - deaf and hearing impaired people are well below 1% of the population, blind people are approximately 1/3 of 1% of the population. Most individual disabilities have relatively small populations, but the combined total of people with disabilities in the US is probably over 20% of the population.

The fact is that autistic adults with every diagnosis are underserved (if they're served at all, which is rarely the case). Once you turn 19, services are pretty much gone. You can probably get disability accommodations in college or university (although some make it as difficult as possible).

Actually, I will go further on this - your (and John Robison's) argument is not simply wrong, it is defeatist. You are saying not only are there no services for adults, but we have no right to ever expect any.

I also think that given John Elder Robison's statements in that interview that he should seriously consider researching the history of the various civil rights movements. Also, his argument that because you can immediately tell that someone is black (this isn't always true, by the way) makes it totally different is bunk. The fact that someone cannot immediately tell that someone is autistic doesn't make discrimination okay or that we shouldn't ever try to get accommodations and protections to avoid discrimination, it means that because many of us don't "look disabled" that people make unreasonable assumptions about us and what we're capable of. Remaining invisible won't fix that.

I feel like there are a thousand more things I want to write in response here, but all I can say is that I can't disagree strongly enough with what you just said. Most of your post reads to me as apologism for the fact that autistic adults get practically no assistance while parents and professionals guide most of the activism and research.

Also,

http://en.wikipedia.org/wiki/Nothing_Ab ... Without_Us

Autism Speaks still doesn't do this.

Another thing regarding ASAN: They're small because they get very little funding, very little press, and very little support. What funding they do get is often dependent upon larger parent-focused autism organizations, which means that the voices of autistic adults from ASAN tend to be marginalized in favor of focusing on parental needs and on autistic children who will largely be abandoned in terms of assistance when they reach adulthood.

Applause, Verdandi.

Just one clarification, though: ASAN doesn't rely on "parent organization" funding. It raises money independently--though it's extremely small potatoes compared to what Autism Speaks gets--and relies on grants from a variety of sources. But you are right that our voices tend to be marginalized in favor of parents and professionals. Some self-advocacy organizations such as People First and Self-Advocates Becoming Empowered do tend to rely more on the larger parent organizations for their funding, but unfortunately their independence is compromised as a result, though they still do some great advocacy work. But ASAN has tried to avoid that dependence, the result being a budget that is microscopic in comparison not only to Autism Speaks, but even a chapter of the Autism Society of America, for instance.

The autism world in general needs to pay more attention to wider disability issues and start seeing autism within the disability rights framework. The disease framework isn't getting us anywhere, though it is keeping a lot of scientists employed. It's far past time that "autism advocacy" organizations start forging links to broader disability organizations and working together on common issues.

It's easy to say "why change for 5 people out of 10,000?" But even if such statistics were worth anything--and I don't think they are--that statement is STILL based on a false assumption because it assumes that the other 9,950 are completely neurotypical. Which isn't true. Many of them may have an intellectual disability, learning disabilities, AD/HD, mental illness, etc., and would benefit from many of the same accommodations and attitudes of acceptance that autistic people deserve. So would many people who are "neurotypical" but who have physical disabilities. And so would some of the so-called "normal" people for that matter.

I recently had an extremely unpleasant encounter with two police officers who seemed to be mistaking me for schizophrenic, amongst other things. Now, the very narrowly-focused "autism advocacy" agenda would look at that and say, isn't that horrible, police officers need to learn more about autism. And while I wouldn't disagree that more autism-specific training for police officers is necessary, to me the larger point is that police officers shouldn't be treating anyone badly, regardless of what their diagnosis is. The fact that I am autistic and not schizophrenic is only relevant in that they were badly misinterpreting my behavior. (For instance, I covered my ears to block out the noise and they thought I was "hearing voices" that weren't there.) But they shouldn't have been treating me like that even if I was in fact schizophrenic. I feel like they kind of use that label (schizophrenia) as an excuse to treat people worse than they would treat the so-called normal people. And that's just wrong Recently in another part of my state, police shot and killed a homeless man with schizophrenia who never did a thing to hurt anybody else. Teaching police officers about autism is only a very limited response to the problem, in my view. The larger problem is a cross-disability issue. While my needs may not be exactly identical to that of a person with schizophrenia, I think this example illustrates that we have a common stake in many issues. A greater acceptance of people who act differently would be beneficial to a lot of people, not just autistic people and certainly not just autistic people with one particular diagnosis.

ahogday, ASAN didn't invent the idea that impairments are a result of society's failure to accept and accommodate. The idea has been around for decades, and has been applied from everything from cerebral palsy to intellectual disability to dyslexia to diabetes to blindness to a bunch of other things. Really, it's not new. And while there are huge problems with how well the ADA is (or rather isn't) enforced with regards to all disabled people, we wouldn't have the protections and services we now have if it weren't for past generations of disability activists, working under the social model of disability. The promise of future research doesn't do a thing for an autistic person who was discriminated against in the workplace, but the ADA might.

I agree with Verdandi that John Elder Robison is quite ignorant of the history of civil rights movements, including the disability rights movement. For him to shoot off his mouth like that while being so ignorant is inexcusable, IMHO. But then, I don't really consider Robison an advocate so much as a professional autistic. There is a difference.

As of right now, the statistics differentiating between different "types" of autism are of little use. There is no consistently-applied criteria which differentiates between "Autistic Disorder," "Asperger's," and "PDD-NOS" at the present. None. The decision to merge the diagnostic categories hence makes a lot of sense. Here are some very common reasons why someone may receive one diagnosis rather than another:

-You're an adult who wasn't diagnosed previously, so we'll diagnose you with Asperger's, because all adults on the spectrum who can talk at all must be Asperger's. (Regardless of developmental history....)
-This person does meet the criteria for autism, but we don't want to stigmatize him/her too much, so let's just say PDD-NOS.
-This person requires services and stands a better chance of getting them with an autism diagnosis.

This isn't exactly a clearly differentiated, scientific process. It is not even uncommon for the same person to receive multiple autism spectrum diagnoses from different professionals. Here is a good blog post by Amanda Baggs explaining what PDD-NOS actually means, and how it is often (erroneously) applied.

Given the current messy state of things, it is rather erroneous to make hasty conclusions about what the spectrum looks like based purely on the diagnosis breakdown of today's children. And even that varies considerably across regions! Because professionals have different tendencies in making their diagnoses.

So don't believe that you can make inferences about "severity" from someone's diagnostic labels. It is also not true, BTW, that all people who are involved with neurodiversity activism have Asperger's diagnoses. Some have classical autism or PDD-NOS diagnosis; there is even one blogger I know of who has the gene for Rett's Syndrome.

Also, "severity" isn't one-dimensional, or even easy to classify. I'm considered "very high-functioning." And yet, when people talk about the "worst" aspects of autism and how "horrible" it is to have a child who experiences public meltdowns, I am reminded of myself. In fact, I still have really bad public meltdowns. So I find it hard to believe that I'm not one of the people being talked about in the general public discourse of how awful autism is. Especially because Autism Speaks uses the numbers of all diagnosed autistic people, including people with AS diagnoses, in their statistics!

So, no. I don't buy the "they're not talking about you" line. Because they are, and it's high past time that conversations about autism actually included autistic people in a non-tokenistic role.

I stated I wished the government would and could provide more jobs and could require everyone to accept individuals with aspergers, but the only significant support that adults with aspergers have from the government that I know of at this point is the ADA, unless they meet SSI and SSDI requirements, which as we have discussed are extremely hard to meet. This also applies to anyone else on the spectrum that don't meet support requirements.

I stated the part of John Elder Robison's argument I agree with, I would have to find the interview again to review the other issues he brought up. I don't see it as unreasonable to suggest that all we have is what we have now, time is passing by, and we should adapt to the way things are, it is the only reality for individuals that do not receive services and supports. The ADA is the law, but it is of no use if people do not believe it is a worthwhile protection.

On the other hand, as I have already stated, I would like to see those services and supports happen, but realistically don't see it is as something than can be counted on in the future at this point in time. I'm not suggesting this is good, it's just seems to be an economic reality, at this point in time, at least in the US.

I've suggested many times, here that people should use the ADA, to support them in their employment, and don't think I have heard one positive response from anyone that they would be willing to use it in the workplace. I personally know one individual that used it to their advantage in real life and tried to use that as an example that it works. No one has expressed any faith in the law that I have come across here.

My argument is it works, in the workplace, but one has to be willing to use it to their advantage.

I hope people will take advantage of it. I also got in a long discussion, with someone that stated people with Aspergers are not covered by it, which technically they do have to go through an assessment to be covered, but the EEOC site itself lists Autism as a disorder that is a standard disorder that should be consistently covered. They don't specify Aspergers, but even if employer lawyers use that for an excuse, the DSMV should resolve this issue.

The ADA is the legal support there that is already in place. When I speak of acceptance, it is on a personal level. The individual in real life, that used the ADA worked at a major hospital in the area, with a group of surgeons. None of them knew what Aspegers was; a neuro-psychiatrist came in to educate them.

The ADA can require accommodation in the workplace, but the awareness and effort does not appear to be there, without enforcement. Even with the education and awareness effort, the individual is no more personally accepted than before, but she is accommodated in her needs related to the disability, such as sensory issues, and strong enough to push through the social isolation.

This person was in a 100K+ job with medical professionals, if they couldn't provide personal acceptance with what it is like to have Aspergers after being educated by a neuro-psychiatrist, even though it is one anecdotal example, it doesn't give me much faith that others are going to put much more effort into the endeavor, on a personal acceptance level, unless they want to.

I truly wish that all people that are different could be accepted. I never had a problem with accepting others that were different in the workplace, and couldn't understand why so many other highly intelligent respected members of the community would make rude comments about the individuals that worked for a Janitorial service that were clearly disabled, that provided cleaning services for a military installation where I worked. But, they did without hesitation behind there backs.

I defended those that were made fun of, and just received a strange look in response. Call me pessimistic, but I don't see that behavior in society getting better, if anything people care less about others, than they have in the past.

We can change laws but we can't change the way humans accept us, if they don't make the personal effort. Greater awareness would help some I think, but at this point it appears that legal enforcement is what creates measurable results for some people.

I stated I don't think the statistics are accurate, but they are the only statistics provided and the government bases future plans on statistics like these; I don't see any effort to change the method that they are currently using to arrive at them. Specifically the CDC, and the way they currently use 8 year old children, mostly in the special education services realm, to get to the 1 in 110 figure. It potentially misses many with higher functioning autism, specificaly Aspergers as identified in the study method it was based on, in previous statistical research in the Atlanta Metro Area, in 1998.

I certainly don't think it's is right, but it is reality. If they were tochange the method now they no longer have reliable prevalence increase numbers, so I personally don't see it happening. Once the DSMV is put into effect, those that are missed, may be even further from sight.

I think the situation as it is, is horrible for adults with any type of autism, I speak here of reality, I agree that services should be provided for adults that need them, as well as those that are permanently disabled, current economics doesn't support an increase of services.

What is it that can be done for those adult individuals that are just trying to make it in life, with what they have now? If better services become available in the future, it will be great, but it's not helping the current situation, and realistically with the economic situation in the US, it is not something that can be counted on.

I live in Florida, we have a wonderful new Governer that just cut out an entire state funded counseling staff for Autistic individuals in a regional office. This isn't something that is just happening in Florida, services are being reduced by Government not increased.

All non-disabled autistic adults have is the ADA, if people with Aspergers and others on the spectrum with jobs could be convinced that is worthwhile to use to help them, that in itself is something that could help people maintain employment if they are lucky enough to have a job. If the people here that on this site that actually have jobs and understand the law, wouldn't use it, it shows some level of distrust in the only real assistance available for adults in the workplace.

Other than that what other option is there other than this to find ways to adapt to the current reality, at this point in time, to survive now, for Adults with Aspergers, along with others that have ASD's, that aren't permanently disabled? When I state adaptation, I'm not talking about gritting one's teeth and accepting the way things are and submitting socially, I'm talking about every adaptation in life potentially helpful to make life as fulfilling for a person on the spectrum, with whatever information and proven adaptations are available. The state sponsored services where I lived, attempted to help with this for people, but that money is gone now.

It looks like it is less likely that the government is going to do it, because of economics, it's not a major focus of Autism Speaks, so that leaves support groups that understand a way to move ahead is to adapt the best we can, and provide the kind of information and support that will move people in that direction. John Elder Robison's statement in that specific respect, just seems to me to be a reflection of that reality.

You stated something about him suggesting that the disability was not something easily seen, like other disabilities, I don't agree with that, people pick us out as odd, I think, no matter how hard we may try to be normal, or even if we don't think people see as as odd. The hardest part with other people appears to be the understanding part.

It didn't bother me much, maybe I was more naive than most, getting unusual reactions from people was a way of life, I got used to. I tried to adapt, that was all I could do. I honestly didn't understand what it was that made me different, so I'm really not suprised that others had a hard time with it as well.

How in the world could they be responsible for my social problems, when I didn't even realize exactly what they were. I remember in school good, nice, people would say as a matter of fact "you know your strange, strange in a nice way not a bad way".

When it happens several times with several different people, it's not likely they are the source of my differences. I still don't know what they meant other than I tried my best to be nice to others, regardless of whether or not I got the response I expected. There is no doubt in my mind, that if I had given up on others, got mad at the world and hated it, I would have never had an individual tell me anything at all, instead seeing me as strange, not in a nice way.

I am speaking from experience of someone with Autism that didn't know I had it, as I know you can relate to. Perhaps if I was young today, was told that society was the cause of my social problems I might encounter, I would have not made the same efforts I made. Perhaps that is the type of thing that John Elder Robison sees, that he would like to circumvent.

Maybe my naivety is still showing, and perhaps his is as well, because we were never told that society was the cause of problems we might encounter, and kept a kind of hope alive that may be much more difficult to attain today than it was then. Beyond that, society is no longer the same, in general in appears that people don't care about others the way they used to, recent research suggests it as an ever increasing trend among young adults as a group today. Could be the same for other demographics as well just haven't seen research to support it. If that is the case acceptance is more of an issue for individuals today, than in the past.

The reality of this suggests to me that trying harder and adapting using all available resources is at least a potential constructive method for survival. I don't see that as defeatism.

Every other effort to secure support and services that are attempted by advocacy organizations, disability movements, and any other group are as important as ever, but with the economic reality the way it is, personal effort, and how to enhance that effort in adapting by any positive avenue available, shouldn't be overlooked, I think. And I am not seeing it happen by itself without an organized effort of some kind to provide that kind of direction.

John Elder Robison is the first notable Autistic person, outside of Temple Grandhin, that I have seen to suggest any direction like this. Perhaps they went about it the wrong way, but I see positive potential there for it as at least as an accessory avenue, if it can be incorporated with current efforts with advocacy. Even if it only helps a minority of autistic people, it seems like it would be worthwhile. KingfisherX is providing some good information here in her social skills thread, that may be helping some in this regard. That's the kind of thing I'm talking about.

Last edited by aghogday on 11 Sep 2011, 2:00 am, edited 1 time in total.

So far, I'm tremendously unimpressed by Autism Speaks

Any claim it might have had to being science-based is contradicted by its support for the view that vaccines caused autism.

Its emphasis on high salaries (at least one over $600,000 a few years ago for their 'science' officer), huge sums going to fund-raising organizations (I'd like to learn who has an interest in those), PR expenses, and its lack of emphasis on actually helping people with autism is quite disturbing.

It appears to use false hopes of 'cure' and scare tactics to separate money from the parents of people with autism. In this, at least, it is somewhat efficient.

I fail to see that it does any good except for a few people (NTs all) at its top. They make a lot of money off of it.

I will be looking into their finances over the past few years.

I've been looking into Autism Speaks for a few months, now, and my initial suspicions of them have only gotten more intense as information flows in.

I will post a summary of what I learn in a while in a new thread.

Thanks for the response. I wish I could reply more but I think I overextended myself earlier (not writing, other things) and am a bit out of it.

However, I was thinking of Autism NOW (The Arc, SABE, ASAN), although I probably misunderstood how fundings works with this organization:

http://autismnow.org/about-us/

And thank you much for elaborating on the wider disability movement. While if just autistics got together to work for our needs and rights to be met, it would be a pretty small movement, our needs and rights overlap with a lot of other disabilities, and we'd have a much stronger base to work from. It's kind of amazing to me that anyone splits everyone down to tiny groups to argue against change.

Aghogday, I'll get to you tomorrow. I have a lot I want to say but my brain is metaphorically fried due to too much time in grocery stores today.

No problem, I have spent some time editing my response to your comment to provide clarification, I was a bit overextended as well, and it seems that you took some of what I intended as criticism of the system as it stands now as support of it. Hopefully my response will clear that part up.

I didn't see the specific statement by John Elder Robison that I remembered as particularly offensive, if you still have the link to the full opinion, I would be interested in reviewing everything he stated in his opinion. What I remember of it, was bits and pieces out of an angry blog, that suggested society must adapt to autistic people, autistic people should not have to adapt.

I've given what I believe are reasonable points, as to why, as a whole, society will not likely adapt to higher functioning Autistic people, on a personal level, on their own accord, even through basic awareness. I wish it were possible for all people that are different as a natural human process, but I think the reality is that the law and support from the government makes it possible in many cases for disabled people to have the opportunity to mainstream.

And finally, economic realities suggest to me that what those autistic people that aren't considered permanently disabled have in the way of support now, may be as good as it gets, regarding government support in the US. Hopefully that won't be the case.

I don't quite understand the funding structure of Autism Now. I think, though, that it is not going to be a permanent organization (?). I could be wrong, though. The whole Autism Now thing just confuses the heck out of me.

I didn't suggest that ASAN invented the social model of disability only that they support the idea, specifically that Autism itself does not make one disabled, society does. Society plays a role in everything one does in life, but it certainly does not create the developmental disorder resulting in problems with verbal language development associated with Autism.

In fact, many of those people rely on the adaptations and support from society to survive. Society for those people is the savior not an opposing force, that allows adaptation for those individuals to fulfill their potential and provide support for subsistence needs where applicable.

I agree that society can be a limiting factor, when adaptations that could be provided to enable people with disabilities are not provided.

The fact that humans in general, do discriminate against all types of differences found in other human beings for a myriad of reasons, can create obstacles for those that are disabled and not disabled as well, beyond the adaptations that are currently provided for the disabled. Some of this is associated with individual, ethical standards. Those standards often supercede awareness of another individual's problem. Not much can be done about that, unless someone breaks the law.

While the law enforces adaptations to allow those that are disabled to mainstream, as a result of those that have fought for those adaptations, it hasn't changed the fact that people still discriminate against others that are different on a personal basis.

It is the reason cited that I hear most here, when people talk about a diagnosis. If they get one some are afraid they will be discriminated against in the workplace, both in the hiring and maintenace of employment part.

While a diagnosis of ASD allows one the potential to be protected by the ADA, some are more afraid of discrimination because of a diagnosis, even though that is the only way to get protection from discrimination from the ADA. It is evident that these people are more concerned about the way the real world works, rather than the adaptations they could be legally afforded, if they were to get a diagnosis.

If people can't trust the system that is in place, the system is not working. But, it's not the system that is broke, it is trust in other humans and the ethical standards of some of those human beings that is broke, warranted or not.

That part is not an ASD issue, an "NT" issue, or a "neurodiversity issue" it is a human nature/cultural issue specific to trust and ethical standards.

There is no formula to fix that part, I know of, other than to make the best choices that are available, specific to each individuals interest.

I didn't suggest the statistics where accurate, instead criticized where applicable. The government does use these statistics in planning required support needed.

The government funds CDC efforts for this specific purpose, so those statistics are meaningful for those that will need support in the future; as a I criticized they do not measure the full impact of Autism; that is a problem that should be addressed, but as far as I can see, even though the government has identified it as an issue in the past and it has been addressed as a need, I haven't seen results yet.

At this point in time, since the DSMV is not in effect and won't be for a few years, better statistics on Aspergers would allow the government to see the proper scale of the numbers of diagnosed individuals with Aspergers in the country, and possibly see it as a disorder that requires greater funding, from what is currently, almost non-existent funding for adults. Since the money for the support does not appear to be there now, and not likely in the future, it may be a moot point anyway.

And regarding adaptation to society for those with ASD's that aren't permanently disabled, the efforts to provide more support for those individuals is important. The groups that engage in the effort to increase that support are doing a great thing,

For those that aren't permanently disabled and don't receive any support, other than that afforded by the ADA, for those individuals that take advantage of that protection, they are adapting to the way things are now, effectively or ineffectively, whether or not they have all the tools that could be provided for successful adaptation.

As I stated earlier, I've only seen limited excerpts of John Robison's coments in a critical blog, but the idea that reality is what it is, the future is passing us by, and we should do our best to adapt to the way things are, is just a common sense statement that could apply to anyone anywhere.

In the real world in local support groups started by individuals, that I have participated in, people talk about ways to adapt to the real world; these people accept that they have impairments related to Autism, and desire to improve their skills to be successful in the real world. They don't have any political ideas about autism at all, they only want to make it in life. They have a better chance at doing it, if they are aware of all the potential adaptations available that will possibly help them.

The ADA is a good example. Without awareness of the availability of the adaptations it affords, and the understanding that it can really help, it is of absolutley no good to an individual that is having problems in the workplace with an ASD diagnosis. The school system ensures the law is followed for those in structured situations, but I don't see much awareness, understanding of the law, interest in it, or faith in it, when that topic is brought up here.

I would suspect that most people with ASD's that receive 3rd party support get most of their support for this through government supported programs on the federal and state level. Other than those that can afford counseling.

I'm not sure where it is going to come from in the future, since those funds and programs are disappearing in some areas. If charitable organizations are going to replace these efforts, it is going to require a great deal of organizational planning, funding, and effort to meet the needs.

Without access to diagnosis and accurate statistics on the demographic of need, and identification of those in need, it is impossible to help all of those in need. While small advocacy organizations may be able to replace some of the support that the government has provided to help individuals adapt to the world, they don't have the resources for the research to identify people in need. That is a requirement to help people that don't know where to seek support from.

The government hasn't provided good results here, but at least they have identified the problem and see it as a goal that needs to be met through government funding. Autism Speaks is supporting that cause with what is a tiny portion of what they research, but it is a need that other smaller organizations are not in a position to meet.

It's not possible without research. While 5 out of 10,000 individuals identified to have Aspergers in the population, is obviously inacccurate, the only way the inaccuracy is going to be changed to properly identify those that need help, is through research, to provide better opportunities for diagnosis, properly identify those that are diagnosed, and to provide education that will better enable those individuals diagnosed to adapt to whatever the present reality is to have the best life possible.

I have heard some of the factors you bring up here before and have researched them to get further clarification.

Regarding the $600,000 Salary, close to half of it was a one time expense allowance for moving. That's not uncommon, among large organizations to offer this type of one time benefit for moving expenses. The actual Salary is in the mid $300K range; for a qualified science division officer of a large organization that funds research it is in the normal range of what would be expected.

The Better Business Bureau has strict requirements for charities, and the administration and salary expenses of Autism Speaks meet those requirements. Researching other similiar sized charitable organizations, result in close to the same percentages of salary and administration expenses. Their most recent financial disclosure shows 69% of funds taken in for programs and services. The BBB requires 65% to meet approval.

When we talk about cure, I think many think about genetic engineering, but the research that Autism Speaks has supported into the new twin study, points us toward environmental factors, that may be tempered in the future, to reduce the more disabling symptoms of autism.

Potential perinatal environmental factors were suggested in the research that Autism Speaks, supported, and a study supported by another organization, recently, has suggested that language impairments, may be associated with higher than normal levels of prenatal testosterone.

The goal is to correct or temper the developmental disabilities, as stated in the email in another forum from Autism Speaks. Cure of all the traits that make an autistic individual, is not realistic, but hope for a reduction in the severity of symptoms, is not an impossible scenario.

If that partial goal toward the emotionally charged word of "cure", can be accomplished, through this type of research, it would be priceless for future generations of Autistic people not to have to deal with developmental disabilities, like the inability to speak.

Vaccine research is still supported by the government and Autism Speaks, but is no longer being done in relationship to thirmesol, instead factors related to the vaccine itself, that may cause problems in some with vulnerabilities, that may specifically be identified through research.

I think the idea is still out there for some that believe that Autism Speaks still supports the thirmesol theory, but even with protest from some of their supporters, they clearly state on their website, that they accept the scientific research that supports that thirmesol is not related.

Their website provides a very detailed annual report that highlights what they have accomplished in meeting their stated goals which are biomedical research into the causes, prevention, treatments, cure, and greater awareness of Autism. The majority of funding goes toward research, and the results of the research is clearly detailed there.

They recently supported research that has led to a screening checklist for Autism for children at age 1, that is available for use by parents free online, that may allow for earlier diagnosis, and intervention for children.

Their annual report also details where 1.5 million dollars goes to directly support the needs of Autistic people. It is a small percentage of their total funding, but it exceeds the total budget of many smaller foundations and organizations.

Providing assistance directly to Autistic people is not a core part of the mission of this organization, as evidenced in their mission statement, but factually speaking from the 1.5 million dollars that is clearly accounted for where it goes in their annual report on their website, to help autistic people, is evidence that the organization is helping autistic people that exist today.

They clearly meet their mission statement, but there are some that don't agree with their mission. I think that is a reasonable point of view, for those that don't see research into autism as important as their supporters do, along with the other aspects of their mission.

It would not be reasonable though to suggest that they don't do anything for autistic people that exist now. 1.5 million dollars of support to autistic people clearly identified on their website, is evidence in itself that they do provide benefits to Autistic people that exist today.

I have seen you to be a easonable person, so I am guessing you haven't seen their annual report, since you state you fail to see where the organization does any good except for the people that run the organization. I will provide a link for you and a quote below for your reference from their annual report in case you didn't come across it on their website, that provides information about the 1.5 million dollars the organization uses to fund support programs for Autistic people.

I see the specific things that the organization has done in support of Autistic people, that I see evidence for, particularly the 1.5 million dollars of direct support as good. The 1.5 million dollars is hard to dispute as a positive action, even though it is a relatively small one compared to their core mission.

The specific things I have seen that I don't agree that the organization has done in the past, is the "I Am Autism Video", presented a few years ago at a conference, that was removed from their website after criticism, the documentary where the women talks about running her car off a bridge with her autistic child that was presented a few years ago, and the parody website they warned the young individual to pull, seems questionable, although, what was in that website, is not available for review, to gain a judgement on what actually precipated that action.

There was a report of a T-shirt censorship incident that still circulates on the internet that was admitted to be a case of miscommunication from the individual that reported it. It was resolved in 2008, but it is still presented as a criticism of the organization.

I heard they didn't allow an autistic person to speak at an event, I'm not sure of the full context of the situation, but if there was no reasonable explanation for it I don't see it as acceptable.

It's a very complex organization with many moving parts, the annual report provides a good illustration of that in one report. It's not too surprising that the organization would make some misteps above and beyond disagreement with their mission supported by those that fund them. I haven't even seen any specific missteps reported on the organization that have actually happened in the last couple of years.

There are plenty critical eyes observing the organization, if there was any thing of substance in the last couple of years for concern, I'm pretty sure it would be reported here.

Here is their 2010 annual report link, and a quotes from it about the 1.5 million dollar family grant program that provides direct support to autistics:

http://www.autismspeaks.org/sites/default/files/documents/as_annual_report_2010-web_01.pdf

aghogday,

I can't formulate the post I want:

Mostly, I think most of us are aware of what the world is like and that changing things is difficult. I also think most people are aware that it's virtually impossible to change people's hearts and minds, which is why legislation is implemented to regulate acceptable behavior toward minorities (which includes us).

I do not see what John Robison said as offensive, but rather ignorant of the realities of civil rights activism over the years. He's looking at this in a limited, almost tunnel-vision manner, that makes it seem reasonable that it is impossible for us to get anywhere.

I do not agree that the political climate is such that any progress is impossible. The political climate could (and probably will) shift drastically after the 2012 elections, simply because one party is so busy shooting itself in the foot. A lot of the budget problems are persistent primarily because one party insists on not implementing measures that would make it less of an issue, wanting instead to implement policies that the other party largely will not do. It's a deadlock, and hopefully 2012 will break that deadlock, and hopefully not in favor of the people who think that fixing the economy means putting the poor and disabled out on the streets.

Autism Speaks doesn't really do anything for adults on the spectrum, full stop. Their research, their focus, their everything is not on us. That is the central point, and the one that is currently not even remotely refutable. There's very little focus on us as adults. We're basically left to fend for ourselves, which many of us are simply not all that competent at.

Anyway, I get frustrated with what look like long explanations of "the way the world is" because I know how it is, which is why I object to it. I would like to change it, and I realize change is hard and you don't always get what you want. As for adapting, I'd say a lot of us put a ton of energy we can't afford to lose into adapting, and it burns us out. It may be sustainable for some, but not nearly all.

I appreciate your clarification that you did not agree with those things.

I agree there is little focus on Adults by Autism Speaks. I defend what I see as good that they do for children with Autism, and the limited efforts they make for Autistic Adults. Resource information on employment and programs for Adults, and financial assistance to some programs that facilitate Adults, is not alot, considering the rest of what they do, but it counts for what it is, and is clearly identifiable if one looks at their annual report.

For the average adult autistic person I think the organization is of no significant personal support value. There is nothing the organization does now, that would have benefitted me personally at any time in my life as I have lived it, as far as I can see, other than information.

I don't see political change as impossible to improve support for those that need it, but in my opinion it is close. I have always been for the party that supports all those that need it, not just those that are the most competitive and survive.

Just my opinion, but I'm a numbers person, and the numbers are looking like change, but not the change that I would like to see, I'm afraid. We've got another Texas cowboy in the mix, and he looks more formidable that the last one we had; he has compete and survive pasted across his face, I think. In addition he looks like he could be president, the last cowboy, never met that standard as far as I can see. Hope I'm wrong.

I think there really are adaptations that can help an Autistic person avoid burnout, if they learn the adaptations that work for them. My suggestion is to adapt, not to burnout. I haven't seen any research mentioned in this area, but in my opinion it would be the most valuable research that could possibly be done for any autistic person living now.

A significant number of factors that may be dangerous to the nervous system of an autistic person, that can be controlled by an individual, may not even be related to people, or the workplace; the factors that are hard to change.

The statement John Elder Robison made is truly meaningless unless one searches for adaptations in life that will actually work for them. It's not likely going to be what worked for John Elder Robison.

Anecdotal accounts aren't enough for the long term, real scientific research into the lives of Autistic Adults is needed, I think.

You seem like one of the few people here that have ever expressed merit or confidence in the ADA other than myself. I've seen little to no evidence that adult autistics are taking advantage of the protection it affords, not here, or with any other informational source that I have come across.

Most of the accounts of benefit from it is related to school age children, that I have researched. In the context of Aspergers, I could find little to no information on the internet, about instances where adults had actually used it in real life. None that I have seen on this website, that has the biggest audience of Autistic people on the web.

Plenty of accounts of problems in the workplace but no accounts of people taking advantage of the protection afforded from the ADA. I personally think people are more afraid of the consequences of using it than the advantages of using it from what I have seen. I've mentioned it many times, and have never heard a positive response of it as tool of protection in the workplace. Are you seeing this too?