What is your impression of autism organizations?

Post Reply New Topic

Autism is easily the most contentious niche in the already contentious field of mental health. Few receive as much ire as do autism advocacy organizations. Autism Speaks, for example, gets a lot of negative publicity despite providing a great amount of funding for badly-needed autism research. I'm curious, though, about people who have first-hand experience with them.

I'm still being told I have to hate Autism Speaks and love ASAN, but I'm not sure why.

Have you ever had direct experience working with an autism organization, either through support groups, therapy, referral, or other services? What services have you found helpful, or not helpful?

I think that being involved in a smaller group type setting gives you more social control would would be better than a broad organization with conflicting views within itself. I feel like starting a group in my area because I would love to help those who are like me. I never follow the big groups because of their civil war bs.

I was involved with an autism advocacy organization in my local area and the response I got was more of the same.
Autism is disease like cancer and it must be eradicated by Applied Behavioral Analysis so that the autistic will become indistinguishable from their peers. The advocate tried to placate me by informing me that Einstein had autism but nevertheless always made me feel like a real jerk.

On the other hand the Autism Self Advocacy Network sounds like a real champion for autistic rights but unfortunately there is no chapter in my area. ASAN champions that those suffering from severe autism should receive high tech communication devices rather than using obsolete Picture PECS.

ASAN is too divisive and that's how they create loyalty by instilling that establishment is wrong, I am hated. people caring is pity and it's everyone elses fault but my own. While individual liberties and inclusion should be enhanced the focus on the THEM vs. US is tiresome, wasteful and counters progress. ABA is a right and I receive ABA and I should have had it since young. It is not bad it is my right. My right to function better, my right to a better quality of life and my right to treatment. If some of you folks got your way things that help would be made out to be akin to the devil or devils play and anything but amounting me to Einstein is bigotry. Out of touch with reality!

Find balance and I'll listen to it but until then my mental off switch to such philosophies is super glued!

if Applied Behavioral Analysis is such a great idea we should use this brainwashing technology on the neurotypicals so they can be indistinguishable from their autistic peers.

If people caring is a criminal offence and helping people is disability bigotry and protected by human rights move to the moon.

[youtube]http://www.youtube.com/watch?v=8eaGuzog59c[/youtube]

both asan and autism speaks a corupt organizations that push the militent agenda of the directors not the people they say they represent.i wouldnt trust either

My advocacy universe is not governed by either. So I am glad I have the motivation to go out and do so as to create the change I envision. In that process I never depend on any other advocates. I do not depend on many people at all. I believe the world of possibilities is at my finger tips and negative thoughts simply are my own choice.

[youtube]http://www.youtube.com/watch?v=mKtdTJP_GUI&feature=player_embedded#at=95[/youtube]

Many of them are founded and run by neurotypicals that conveniently forget that they're supposed to be serving autistics. These types of organizations don't have autistics in influential roles save for the occasional token aspie or autistic stuffing donor solicitation letters into envelopes. Also this type of organization tends to focus on "those poor little children" while failing to acknowledge the needs of adults.

Likewise very high functioning people tend to think its all about them and seek to avoid the harsh reality of the disability. It is not my opinion that any self-advocate will do for leadership positions nor should they think they are qualified to know whats in my and others best interest. Yet still advocacy as a whole no matter if it's self-advocates or the so called normal people which to me is kind of insulting to imply I am not typical myself still could do much more. There is a great loss of progress with internal conflicts, the existence and perpetuation of hard feelings and what I'd like to call angry advocacy that blinds strategy enough to entice a lack of progress.

That's why I depend on myself only.

well, one word "corrupt" http://autism.about.com/b/2009/09/10/is ... uested.htm
i mean it really doesnt matter what you believe in morally, the fact is none of the money and services go where they need to. There are also no autistic people working for them or being represented so the message seems hypocritical to most people.

There is so much anger between people who all want to help. Why? It baffles me.



It's easy to be divided on the issue of peer-run versus professional-run organizations.

To be honest, nearly all of the work done by advocacy organizations is highly social in nature; I'd almost venture that social skills are more important than anything else. I don't think many people on the autism spectrum are up for the task.

It stands that services for children are the most effective, dollar-for-dollar, hour-for-hour. If you have a hundred hours of services to dole out, children will bring you the greatest impact. This doesn't leave me in a great place as an adult, but I try to understand.

That is what I have spent a few months figuring out. I have determined it to be a waste of time to resolve. If people were to get along and focus on some general goals together their would be a great deal of quality of life and opportunity (inclusion) improvement. While I cannot say for sure there are ideologies, mainstream political and that of persistent angry and even self-destructive philosophies at play. The best I've been able to do is protect myself from the more unstable aspects of autism politics as my organization in all that I created was attacked by a group of pride advocates politically. Since then they removed all their lies about me which were made up. They just projected into me I was who they hated and those folks they hated I never even met before.

It is my belief once the abortion and autism is an identity akin to ones name should subside so will conflict. The other aspect of conflict in the community of those who want to help is the vaccine advocates and they seem to be more politically isolated now. I think it will be ten or even twenty years before conflict subsides enough to create more positive and at large focused efforts. It is also possible special interest political groups would like to see the autism community divided. This can be attributed to individual members of parties and not some scheme in the grand sense. It's just how at times politics work because no political party would openly discourage quality of life and inclusion assistency behind the scenes is another issue but then again this is a theory.

The only way that we are ever going to advance in society is to form an organization that is for Aspies and run by Aspies. An organization worthy of the undivided loyalty of the Aspie population. Then we will have more influence in society and people won't be able to push us around. If they refuse to give us our rights we will be able to take them by force. This goal may seem far from reach and it will take time to achieve, but when it is achieved our overall quality of life will improve and there will be much less oppression towards us. This organization could start here on Wrong Planet and expand from there. If we create an organization and acknoledge its existence the first step towards achieving this goal will be complete.

Some exist but I think much better can be done. I for one don't desire to form one. Anyone have any ideas? With regards to "Aspie" is that just Asperger's Syndrome or also HFA?

The us vs. them mentality is largely limited to an internet audience propagated by opinions, some of which, are urban myths or resolved issues still perpetuated by internet resources that are several years old.

The main motivator I think is part of the basic human need of a common goal that binds people together whether it is religious, political, or sports ideology. The ASAN vs Autism Speaks competition seems to serve that purpose, because most of the arguments trend toward emotional competition rather the middle ground that can be found through an intentional objective effort.

There is objective middle ground to be found in a discussion of the issue, as you prove here, apparently you do not have the "emotional" desire to choose a team, only an objective interest in the factors at play.

The discussion of this issue is much the same as any discussion about politics, sports or religion, middle ground is always possible if that is the goal, but if it is a competition, it is mostly a matter of who has the better team and strategies to defeat the opposing team.

Of course it goes deeper, there is the experience of some that see autism as a difference that needs only adaptation in life and those that see it as a more difficult struggle of symptoms that require a stronger intervention for an individual to reach their potential. The objective fact, is it is both, and the opinion of what it is more of, is colored by personal experience.

The only support that I have received from either organization is information; something which both organizations aim to provide to autistic people. As far as I am concerned both organizations have merit in this area, but the information provided by the new Autism Speaks internet site, developed in June of this year, now has a comprehensive level of information for most every aspect of the condition of Autism, along with resources for Autistic Adults that can be valuable in everyday life, but one can make their own judgement on this, by visiting all the sites that provide this kind of information.