Unity in the Autism Community, Last Call...

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Unity in the Autism Community, Last Call...

Before I give up....

I have a form of autism as multiple professionals have said. I believe there is an opportunity even if online for those with autism, family and friends to come together for quality of life.

I believe and it only takes belief, that a great number can help those few in need. I understand that some people with A.S.D do well, but what about those who are left out. I believe it's time to come together despite differences, being new or any other circumstance to improve the quality of life of those with A.S.D's.

Do you believe that it is possible?

(Oh my, this post might be seen as mania in bipolar)

(I understand pride, but to those insulted by this post, really you have no clue.)

Why would you want to give up on something like this? It's a great idea. There are many of us with some sort of ASD who need more help than others, so why shouldn't we want to give something back? We can understand how they feel and what they are going through, therefore we have an advantage in trying to help them in the future.

The only thing is, however, what sort of plans are there in place to make this happen?

- Ray M -

Why would you want to give this up? It's a great idea. Surely, there are many with an ASD who don't need much help, but then there are those that certainly do. We know what it's like to live with an ASD, and we know how it feels and what works best, so why shouldn't we do what we can to make the lives better for others with it?

The only thing is, though, what sort of plan would be involved in achieving such a goal?

- Ray M -

All I can offer is the organization of an open to partake group of minds that decides just what to do. I am sure that other organizations promote quality of life issues and seek to develop those ideas into reality. Yet unfortunately there are a growing number of those disagreeing with current established organizations.

So why not at least attempt to organize something larger among those online? The more oppositional or agreeing to what others oppose, the more non-resolving, thus it should be very specific to quality of life issues.

This is based upon some observations online thus far. It is very much divided, so I'd hope for a unity platform that is funded and organized in the U.S. That’s if it even needs funding if innovatively designed.

On a lesser scale there is the idea of e-mailing for funding for certain organizations by government or what not. My hope was to establish something then give it away to people to operate as keeping up with it would be a dilemma. I'm mostly into gardening and flute not the volatile social scenes

There are many polar oppositions in these "politics" I have observed. Perhaps it is best and obvious enough that current established organization that do work towards quality of life issues continue to do so. Online seems more like anti-establishment, I have tried to work with others, create a platform but I do not perceive it legitimately organizable and maintainable by me solely.

Ideas are ideas, however it takes more then ideas to make the original ideas manifest. There are others online with good intents as well, working together is the difficulty as subtle differences and just the nature of the social requirement are self-defeating.

I'm more for the all out attempt then a small enterprising venture. Marketing techniques I have studied extensively, it is just that it would require 10 of me, not one.

Working with others has never been proven beneficial to me, just alone and requiring only myself. Yet I will try if others happen to find the need to implore upon this type of venture, but at a pace.

I have much time available that I could try to allocate constructively.

In California, prior to my knowledge of such services when thinking of autism advocacies, there existed a private system called the Regional Center(s). IF such could be duplicated nation-wide, I think it would be a great quality of life enhancement to those in the autism community.

The Regional Centers in California are government, not private, and there's a lot they do to impede quality of life for autistics and the others they serve. One of their basic functions is as a gateway for funding, therefore it's in their interests to deny funding to as many people as possible. Pretty close to every autistic person, or parent of an autistic person, I know of, has had a fight on their hands to even get appropriate services from them at all.

It is contracted and a non-profit funded by government.

Some of the things you are saying are not truthfull, they help the most saverely disabled from moderate to savere. I had no problem getting in and the type of assistence being recieved is nothing like the lack of concern of a social worker in the government.

They are nothing like government.

Not truthful?

I was a self-advocate in California for many years. I saw many things.

Golden Gate Regional Center is currently basically keeping a man I know hostage by refusing to serve him despite his severe disability. He has diagnoses of autism, mental retardation, epilepsy, and cerebral palsy. They won't serve him because the psych system has him, despite his living arrangement being inappropriate and abusive.

A Regional Center further north used to tell a parent I knew that her son was only "mentally ret*d," not "autistic," even though he was autistic. They did this because they did not want to help him be included in gifted classes for mathematics, even though he was a math whiz.

A man I knew with severe cerebral palsy almost couldn't get services at San Andreas Regional Center because they couldn't find his school records from Alaska or somewhere like that, from 50 years ago. They said that if he didn't have a diagnosis prior to the age of 18, then he didn't really have cerebral palsy before the age of 18.

I required intensive services from the San Andreas Regional Center, and they found many excuses to give me sub-par services, resulting at times in hospitalizations for physical problems they contributed to by not providing services. They lied to me frequently and treated me like I didn't know what I was talking about and should be ashamed of myself for speaking up for my rights. They didn't even consider starvation to be an emergency situation requiring services, and they delayed approving my services to the last minute at which point they wouldn't release their approval until threatened by Protection and Advocacy with a hearing. They wanted to give me "recreation" services because they were easier to fund than supported living.

These stories are the norm for Regional Centers. Talk to a group of parents about the Regional Centers and see if they all have totally rosy stories about getting what they want. Most have to fight the Regional Centers. Some Regional Centers are better than others, and some case managers are better than others (I've had one good case manager then he retired). But these are not utopia and these are definitely not what we should strive for. We can do better than that.

As for the Regional Centers being attempts to avoid funding things, I was told that by a Regional Center employee who wishes to remain anonymous. They're about trying to avoid spending much government money wherever possible.

I was able to join the Regional Center and am getting one on one services that are individualized.

Your complaints are not valid of a typical experience based upon my observations, every system will have it's fouls public or private, just like my experiences with social services.

I question the validity of your claims for overall given the governing average experience and that of the irregular fouls, plus interpretational agendas against the organization. Which I migtht mention is my only hope and is meeting my needs perfectly, I was told they would be with me the rest of my life.

I don't agree with how you potray them.

In New Jersey, there's something called ASPEN. It's the primary state-wide asperger's support group. Something along this line might not be a bad idea, say if we were to move away from just a support group atmosphere and more into a unifying force for us all. I mean, helping each other out in moving easily through life, such as through employment and living services, would be a great idea to develop.

I don't think it would be beneficial to segregate from NTs completely, but a place where we can unify and so forth would not be a bad idea. It seems like a good idea.

- Ray M -

A.S.W.C - World-Wide

A.S.W.C - United States

A.S.W.C - State and local based.

A.S.W.C = Autism Spectrum World Community, sort of a dream to form a voting system and support group system. It however is difficult for individual parties (persons wanting to setup a support group) to establish a group in a neutral location by donation.

As an umbrella organization it could certainly market the local groups and help organize the frameworks of policy for local chapters.

It would require much social effort and corporations with perhaps county or city departments or even churches to arrange for meeting spaces. Some people are so hateful of churches they will rebel immediately, yet as for community and the logistics of locality for growth, it might be a requirement.

I’d rather focus on adult support groups because adult groups with adult issues is what is lacking, for childhood there is the Autism Society of America. I believe it’s time though for people with a form of autism to form there own organization and legitimately handle issues democratically and fairly in a designed fool proof system of our own.

The business model is not clearly defined, so I am not giving any details away that could just be taken from me.

I'm interested in working on most things, just at a pace and to at least try.

Nathan

The problem however is, even in this grandious design, I would have no interest to socialize with people. Seems more like SimCity!

I am more entertained by my own thought, then any social venture.

Online is the perfect balance between no social activity and normal social activity.

Yes, but these are ongoing and repetitive fouls that nearly everyone I know of, who has had dealings with the Regional Center, knows about. Thus, something inherent in the way the system is set up causes it to be this way.



Ask most groups of parents about the Regional Center, and you will get people rolling their eyes, groaning, and then talking about having to fight and argue to get what their children needed. The services you have described getting from the Regional Center are the ones they give out the most readily. You also have experience with only one Regional Center, whereas the people I know are from several, and I've known lots of clients and parents of clients of the Regional Centers.

I agree that something like the Regional Centers are in theory is needed, but I disagree that the Regional Centers are a good model, because in practice they don't work too well. There has to be some other way of doing it that does not cause the problems of the Regional Center system, and viewing the Regional Center system as ideal means perpetuating the same problems.

As far as being your "only hope," they were mine, too, and so for a lot of other people, and they were failing all of us. I don't deny that there are good experiences with them, but I do not believe that this system's good experiences are in the majority. I say that with years of experience with not only Regional Centers, but Area Boards overseeing the Regional Centers (the people from the Area Board, by the way, are generally very aware of the problems inherent in the Regional Centers), and not only my personal experiences, but the experiences of a wide variety of clients and clients' parents.

I think most of the good experiences come from people who already fit the Regional Center's models of programs. Most people don't fit those models. For those who do, I don't doubt they can be wonderful, but the vast majority of people don't pigeonhole quite so easily.

I knew a disabled guy who worked for the Regional Center, and he would often talk about this stuff, but then he would say stuff like, "But, I don't want to say certain things, because this is the best-paying job I've ever had, and I don't want to lose it, so... I just don't think about it and can't think about it." That's not the statement of someone with real power.

They're better than some other things, but better does not mean good enough. And of course they'd be there for life for me too (and still would be if I still lived in California), and I had some good experiences with them, but most of what I had was having to fight for things that I needed, not because they didn't think I needed them, but because they thought it would be more "cost-effective" to stick me in a high-level group home and be done with it. And things like that (especially the "cost-effectiveness") thing really are the norm.

So, by the way, is corruption of a level that there are things I saw... really bad things... horrible things... done by agencies overseen by Regional Centers... that the Regional Center employees knew about, were repeatedly told about by many different people, were mandated reporters of, and did absolutely nothing for reasons having to do with who had ties or money or something like that. Which left me with no respect for them at all, and that was a Regional-Center-wide problem at the one I was a client of, not a specific-individual problem. Nobody would speak up.

I just do not believe. I've had mroe then one experience thus far and countless experiences with the social service system. The regional center is much better, what do people want, a personal butler and a lemmo?

Very harsh accusations, if you are in the regional center then where? Also what do you want from it.

Perhaps you should talk to your service coordinator, there is nothing better then the Regional Center other then being a millionair.

I'm someone that speaks up.

There is unity parallels of common expressions and of focuses I have observed.

Unity opposition to a cure, yet the cures interpretations varies. (anti-establishment, oppositional behaviors common)

Also for employment and accommodations in education..

There is more unity for a cure then any other unity I have seen.

With the unity for a cure as an example, there should be a movement just as strong for quality of life. Some would say that’s what a cure is, for quality of life, but more so real-life things as a person is, not what can be changed.

To be honest, I'd be only willing to help such as building simple websites for others; there is a social requirement to organize anything like this.

Still unity is generalized to basic topics such as employment, educational and for other more complex needs like independent living, sustainment and assistance in life more indepthly Any unity in directive in mass would require a social stability in focus and intents. This requires social reciprocity in a complex way, its formulation could be simplified perhaps.

It’s only when others can state ideas as well and equally partake is when it seems more then an imagined scenario.

My local Regional Center is in the middle of a class-action lawsuit because children and adults with Asperger's are usually turned down for services. They do help those who are diagnosed with autism, especially if the person is low-functioning. If I hadn't been a client when I was a young child, I wouldn't have been able to get help today.