A Talk With My Congressman's Office Today

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I was able to speak to my congressman office today. The discussion involved the appointment of Ari as president to ASAN to a government board. My concern is their advocacy is alienating the potential supports of the public and the diversity of self-advocacy as what comprises the self-advocacy community as a whole. My idea is that they appoint another person with autism that has nothing to do with eugenics disputes and that does not merge the issues so to balance the self-advocacy perspectives that are represented within the government . I am approaching this as a protection and advocacy matter in the PR sense. Individuals using eugenics politics in an angry fashion are biased toward the needs of others when they center on the issue in disputes. Having the represention coming from individuals who are otherwise very high functioning and who also go against isolation advocacy due to the image of autism with no alternative advocacy for those isolated in compromise I deem a health and quality of life matter in public appeal. Government should seek to enable the civil rights of a diversity of opinion while not sacrificing those most in need and who are not represented by groups like ASAN.

They will be sending letters on my behalf as a service they do for advocacy for other people of all kinds of opinion to the appropriate parties to share my concerns. This I hope will conclude my sense of concern to this matter. While ASAN and it's supports have every right to dispute they in what they do should they be supported not alienate the concerns, realities and quality of lives of others who they have failed to advocate for justly.

its true that there are people who don't like asan but about 60% of autistic people do so it is a majority group.

You do know that Ari is already on the NCD, right? And that Congressmen don't play a role in the confirmation of presidential appointees?

I think you do some really positive advocacy work, ci. It's just a shame that you would spend an appointment with a Congressperson talking about something that is a non-issue, and which can't be changed in any case.

Conservative estimates put the numbers of Autistics at about 1.5 million. Sixty percent would be about 900,000 people. Maybe sixty percent or more of the Autistic people that know ASAN exists, supports what the organization does.

But no one even knew the organization existed in the last privately organized Asperger's support group I attended. There are 15 individual chapters in cities, in 15 states, in the country for ASAN, and a very limited internet site. I live in one of the highest populated states in the country, and there is no sign of ASAN anywhere, other than the internet site, if someone happens to come across it.

These chapters are not organizations they are just support chapters run by a few individuals.

If anyone were to understand what it is, it would be the people that visit this website, but many here haven't heard of it, unless it comes up in a topic. There are probably more people here that understands Autism Speaks exists, whether or not they like the organization or not, because it is periodically discussed.

We get posts about ASAN in this forum that a few will respond to.

If it wasn't for Ci discussion of the group, I doubt I would have ever knew it existed.

I would imagine they could have several hundred supporters that actually get some kind of face to face support from the chapters in each of the 15 chapters, but, considering a handful of people have shown up to the protests at Autism Speaks functions, that support ASAN, and the limited responses or threads here about ASAN,. a few thousand might support the group, but even if it is 10,000 individuals that support the organization, which is highly unlikely, That's less than 1 percent of the estimated Autistic people in the United States.

The organization supports political changes like support for better adaptive living support, and disability rights which are of value to Autistic people, but actual face to face support is limited; because there is extremely limited numbers of people involved in actual outreach support

This isn't a criticism of the organization, they are run by autistic people and that demographic of diagnosed is an extremely small one relative to the general population, but I don't see the percentage that you are suggesting here, to meet any potential percentage that exists.

There are a huge number of parents and individuals in the country that supports Autism Speaks, much of the awareness of that organization, with the children of those parents, is probably presented by parents, of the children. I don't see it as likely that the organization means much to most of them one way or the other.

There are probably a relative very few Autistic people out of that 1.5 million that could tell you anything of substance about either organization, simply because they haven't heard of them, or are not concerned with what they do on a day to day basis.

There are over fifty thousand members listed here, most not active participants. If we did a poll here on do you know what ASAN does an organization we would probably get about 20 responses. I can only think of a handful of individuals that have even explained what the organization does, and most of them are directly involved with it.

Last edited by aghogday on 14 Sep 2011, 12:47 am, edited 1 time in total.

what i meant was that when ci says ASAN he really means the neurodiversity movement at large

He's not suggesting that Ari be replaced instead that another individual that supports research into a cure for prevention, intervention, and better treatments for Autistic people be added.

I don't see that as much different than requesting that the Combating Autism Act be changed to meet the requirements that it is not meeting now or repealed, ending the potential for the research that is being funded for.

It's just another point of view. I think it was no more likely that the CAA was going to be repealed if it wasn't changed to meet suggested requirements than it will be for the President to appoint an additional autistic individual with a different point of view.

Beyond that, it is an essential part of the political process, however unlikely our requests may be to be put into action, we are encouraged to become part of the political process as citizens. If more people would let their opinions be known about issues in the country to their representatives, our country would likely run more efficiently as a whole.

It's good that ASAN and it's supporters let their opinion be known to their representatives and Ci as well, I think.

Last edited by aghogday on 14 Sep 2011, 12:02 am, edited 1 time in total.

Except that the National Council on Disability is not concerned with finding cures autism, or for any other disability. That is not the function of the organization.

According to its website, "NCD is a small, independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities."

Here are the "policy" areas listed on its website: Civil Rights, Cultural Diversity, Education, Emergency Management, Employment, Financial Initiatives & Incentives, Health Care, Housing, International, Long Term Services & Supports, Technology, Transportation, and Youth Perspectives.

Nothing about medical research or cures, for any of the many disabilities which fall under the disability umbrella.

Another autistic person on the NCD could be a very good thing...but if the point of such an appointment is to get a "pro-cure" person there, I don't see what the point is, frankly. Because the NCD has nothing to do with cures.

People really should research what NCD does before getting apoplectic over Ari's appointment.

Unless I am reading his post incorrectly, he is suggesting someone with a view that is not focused on eugenics concerns should be appointed to the board. The concern over Eugenics as opposed to the search for a cure, prevention, causes, potential interventions and treatments of autism are opposing viewpoints at times. Ci's concern is that progress to help people with Autism might be limited over fears of Eugenics, driven by Ari and the ASAN organization.

I see neither Ari or ASAN as having absolutely no impact in undermining research into Autism; there are millions behind it across the developed world, and even if it were completely outlawed in this country it would continue unabated in other countries.

On the other hand it is Ci's concern, and opinion, and regardless if Ari could have an impact in his current government appointment in influencing the restriction of research into Autism, or negatively impacting what Ci sees as disability rights because of Ari and ASAN's viewpoint on Eugenics, Ci sees it as a concern, and wants to see an Autistic individual on the board without that viewpoint.

It is extremely unlikely to impossible that the going to appoint another autistic person, on that board; it appears that Ari's involvement in general disability rights with the neurodiversity movement, which involves other people that are considered to have disabilities, is probably the reason he was appointed to that board.

But, again, it was just as unlikely that the CAA act was going to be repealed, unless suggestions to alter the act were met, suggested by indviduals supporting ASAN.

There are probably fewer autistic people out of the 1.5 million people that have heard of neurodiversity, than have heard of ASAN. The definition of what neurodiversity is has a multitude of definitions of who or who isn't neurodiverse. I've seen the idea suggested that it is Autistic people that are neurodiverse and there are also others that promote the idea that people with schizophrenia and personality disorders are neurodiverse.

There is research that suggests genetic links to both, so I guess either viewpoint might have merit. I'm sure good percentage of Autistic people that have had the concept of neurodiversity explained to them support that ideology, but among the 1.5 million individuals that have Autism, the only way they would likely come across the idea, is through an internet site that provides that specific information.

It's another term I never heard of until I came to this site.

I don't know what opinions people have put in the last few posts but ci had been talking about ari ne'eman and ASAN and how he felt their whole agenda was quite cult-like. I bet he might have wanted to take it over or something, or possibly force it to become a shadow of its former self. Apart from that there was no indication of anything else.

But you're missing my point, which is that the NCD is not at all involved with genetics research or cure. It's just not on the agenda. Ari's appointment was endorsed by several major disability organizations, including the Special Olympics, the American Association of People with Disabilities, and United Cerebral Palsey. He is extremely well-informed on general disability issues. I certainly would support the appointment of another autistic person who is similarly well-informed on the issues which actually concern NCD. Genetics and research are not among them, however.

Sure, millions per year will continue being spent on research. A fraction of that may actually be useful, though right now that's a rather small fraction. Meanwhile, these millions could be used, alternatively, to set up actual services to help autistic people. It's a shame.

Since you mentioned the international situation, it might be pertinent to mention that the situation is not the same everywhere. Great Britain's major autism organization, the National Autistic Society, is light-years ahead of any mainstream American autism charity. They are concerned with services, they pay attention to adults, and include them in decision-making, and they run PSAs that promote acceptance of autistic people.

The U.S. does not equal the entire world. The rest of the world has some useful things to teach us.

Right now China could teach the USA (and Europe) a few things about paying your bills.

I don't see the concern, that Ci sees with Ari, and ASAN, in regard to the NCD, that's
Ci's viewpoint not mine, and completely understand that the NCD, is concerned with disability rights and concerns, not actual research into problems with disability; that area is covered by the same agency of the US, that funds the Combating Autism Act.

Ci's concern with his appointment though to that board, is not a lone voice in the wilderness, the appointment was delayed for some time, from those that didn't agree with Ari's appointment.

I was hoping to clarify the aspect of adding another individual to the board rather than replacing Ari, which sounded less combative to me than replacing him.

I see the need for funding research as well as funding for direct support. As far as altering the funding that the government uses for research, in the CAA, the suggestion that more money should be allocated to support funding for Adults, was completely reasonable to me, but in my own opinion, that reasonable aspect was defeated by suggesting an all or nothing approach to representatives, in not renewing the entire act, if it wasn't modified.

Not much doubt in my mind that whatever congress person read that, probably scratched their heads and wondered why this person feels that if the specific demographic need they want met is not met, that the rest of the act's goal, regarding research, in attempting to make the lives better for future generations of people with Autism is not worthwhile.

It's a difference of opinion; the government sees research as a potential in providing interventions that allow people with Autism to be more independent in life; the needs of people today are vital, but the government's view is it must consider every possible scenario in providing productive lives for future generations, because realistically, the funds for the type of support that is provided now may no longer be available in the future.

The potential for interventions that allow individuals to have a production independent life, as opposed to a lifetime of government support, is the win-win scenario the government hopes to provide with the research that it is funding.

On the other hand the general view point, expressed by Ari, in the media, is that while he doesn't think that genetic research is all bad, his concern is it might lead to Eugenics.

Since the letter presented here was directed by ASAN, regarding the CAA, it seems to support that opinion, but those individuals that hold that opinion have a right to it, just as the other individuals that understand research to be vital, because it may provide prevention and interventions, even if it is just the prevention of undesirable environmental factors that may lead to the more disabling aspects of Autism, or more effective therapeutic interventions earlier in life for a person that experiences the more disabling factors of Autism.

And furthermore, research that may lead to better diagnostic procedures to screen the adult public to identify those that need a diagnosis. With this we have the opportunity to identify the masses of individuals that may not have any idea they have an ASD, or to even understand what the autism spectrum is beyond a severely disabled child. Without that identification, these individuals have no chance at support, whether improvements are made in that area in the future or not.

The CAA hasn't reached this goal, but it is a goal within the act that is understood must be achieved. If it were not renewed the only funding iniative for it that is left is from organizations like Autism Speaks.

Suggesting that the CAA should not be renewed, if it is not modified to do everything we want it to do in regard to adult support now for Autism, would be defeatism in my opinion, because it is one of the few government iniatives, currently, that is taking the US anywhere in that direction, specific to Autism or Adults with Autism.

A major criticism that was clearly identified in the public reponse to Ari's appointment to the NCD was that he wasn't seeing the entire picture of autism clearly. I don't know enough about his personal viewpoints, to make a clear judgement there, but I didn't agree with the ASAN iniative that suggested the CAA should not be renewed, if it wasn't changed to suit the requirements of the viewpoint endorsed by ASAN.

The US has a horrible track record in helping all individuals that are of less advantage, compared to many other developed countries. One of the reasons why not many adults are identified with ASD's in the US, is that without a full time job with benefits here, an adult is not likely to have access to healthcare at all to potentially find out if they have an ASD. It's come close to a miracle to get close to fixing that problem, and much of what was fixed could get shot down, if political agendas against it are fulfilled.

Some young adults in the US are pushing for more support for Autistic Adults, but it is because they understand they have the condition, they are the few adults to even understand they have an identifiable issue related to an ASD, underlying their problems in making it in life. It's only common sense to me that they haven't been identified, but the research recently done in England, provides scientific evidence for it.

The US could learn much from other countries in support for those that need it, but it is apparent that many people here, that have feathered nests, that influence politics, would rather criticize those lessons rather than learn from them.

I have gone into more detail here than is necessary for a response to your comment, but when given the opportunity, I try to detail that there is much more to research that is valuable, and parts of it that are vital to some, other than the concern of Eugenics related issues.

I don't expect others to see it as a reality, but it seems apparent from some of the responses I have seen that some believe that research is only about Eugenics. Eugenics is a concern that some have that is related to research, but not an identified goal of current research into Autism.

There is no evidence that either the Government or Autism Speaks has Eugenics as a goal in the specific research they support. If someone were to provide real evidence of that, I would find that disturbing.







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Last edited by aghogday on 15 Sep 2011, 2:26 pm, edited 2 times in total.

Just a point of clarification: The issue at stake is not "repealing" the Combating Autism Act. Nobody is trying to repeal it. The Act is due to expire soon, anyway. The issue is renewing the Combating Autism Act. The fact that the bill has come up for renewal provides an opportunity to change that. As of right now, that's not happening. That is why ASAN is attempting to intervene, and it is crucial. Other autism groups may just want the act renewed, but that's just supporting the status quo. Given that the Act is up for renewal, why not revise it to improve it? Supporting the bill in its current form amounts to passive acceptance of acceptance of an autism policy which all but ignores adults and prioritizes cure/causation/prevalence research over services, to the complete exclusion of services. I don't think that's something we should be supporting.

And it is worth noting that no autistic person has testified for OR against the Act in either of the two times it has now been discussed before Congress.

I'm not going to speak much on the subject of eugenics, but I have to ask why you think so much money--a huge portion of the autism research budget--is being spent on genetic research. What is the purpose of this research? Is it at all defensible in your view? (You probably already know my answer to the last question.)

Also, I don't understand this:

Is this in reference to anything I said? I certainly am critical about the current direction of U.S. autism policy, but I don't see a problem with that. Criticism of governing bodies and power structures is a vital part of a democratic and dynamic society.

I guess what frustrates me about your posts, ahogday, is that they are so focused on what mainstream Americans/politicians think. While obviously this is pertinent, I cannot support any political agenda which simply caters to what the public already thinks. That is the way of politicians who let so-called public opinion guide their every move. To my mind, truly dynamic leaders seek to change public opinion, to expose people to ideas they haven't necessarily heard before.

And that's part of why I think we shouldn't just pass a new Combating Autism Act without making any changes. That's not progress, but stagnation.

My mistake in wording, you are correct ASAN was suggesting that individuals express to their representatives that the ACT should not be renewed unless the changes asked were made. They didn't state it should be repealed.

Beyond that the concerns I raised would still apply; the resulting effect is still the same. Asking that the ACT as a whole not be renewed unless specific changes were made, could potentially put a stop to all of the other valuable potential of the ACT that I detailed.

I don't see any problem at all in suggestions to improve the ACT, but I see suggesting that the CAA not be renewed unless it is improved, to be counterproductive, because, there are potential benefits to Autistics in the act, regardless if it is not improved to meet everyone's needs.

Funding for an act that has the potential to help some, is better than no funding, no act, and no potential to help anyone with autism, in my opinion.

The research in general is obviously defensible to me, the goal is to find preventative measures, causes, improved interventions, treatments, diagnostic procedures, and statistics associated with autism, along with many other goals. It's not perfect, and all the goals haven't been met, but the research is clearly defensible, in that the general goal is to make life better for people with Autism.

There was an iniative to pursue the relationship of autism and the environment rather than pursue a focus almost entirely on genetics in relationship to cause, prevention, and treatments, before the ACT was put into effect, but a genetic cause was the majority scientific view of Autism at that time, so the research was funded in that direction.

Now that science is beginning to understand that environment may play a bigger role, I would hope that a much larger percentage of funding would be dedicated to environmental research as well. If I were to write a letter to my congressman I would suggest that change along with more emphasis of research and support of adults with autism, and give defensible reasons for it, but not renewing the bill would never cross my mind.

When I stated feathered nests I was referring to those individuals in the general public that influence political decisions that reduce support for all those that need it, not just support that autistic people need.

By "here" I meant in the US, not this website.

An example would be the influence of corporate sponsored media on the general public; they have convinced some people that desperately need healthcare, that a guarantee of it is going to ruin their way of life. That kind of influence is not cheap.

What mainstream politicians think and do and how the general public sees the problem, does not reflect my personal view, but it is a reality that I think should be identified and discussed to make effective choices to pursue areas that are constructive verses areas that are not constructive, in my opinion.

In my opinion, pursuing change in this instance with the CAA was constructive, but suggesting the entire act not be renewed unless that change was made was not constructive, because of the reality of politics and the general public opinion that influences those politics, but that is just my opinion.

It is not just the politicians that we have to convince, it is also the general public that supports research for a cure, prevention, causes, treament intervention, for the disabling symptoms of autism.

It is reasonable that we may possibly get some of the changes we want for adults if we seek middle ground, but if it is only our ground we seek and no other ground, I think it is less likely that we will gain any change we want. The overall politics of the situation, I think, shouldn't be ignored, if one wants success in gaining the improvements they see as necessary.

It was the way I was trying to approach the poltics of Autism Speaks; if more funding should be applied to direct Support it is reasonable to suggest that to the organization, but to suggest that most of it should go to direct support, when direct support is not part of their stated mission, is not constructive I think if one wants to assist in effecting change that is going to help autistic adults.

For the record, the Congressional Representative for Humboldt County is Mike Thompson (link). Here is his contact information (another link).

He seems to have been in Washington, D.C. for the past week...