Apathy vs helping to make the change you desire

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I'm back on the soap box...

I know that there are some autistics who do things to try and make positive changes in their lives and the lives of other with autism. Many others just "can't be bothered" because it's not a special interest or because they don't have the cognitive ability ? I'm hoping that is not the case today . April is autism awareness month and we are likely to be bombarded by more misinformation from Autism Speaks (for us?) unless we become pro-active enough to start speaking for ourselves. There is power in numbers , I've seen it do amazing things .

If your like me then you probably think..."I want to help but what can I do ? "

Now, there seems to be a place to "maybe" do something but it wont work if you don't take the time to be heard . (We are specialist in procrastinating) .

I'm looking for one member who has good written communication skills to consider this job.....

http://www.change.org/info/about

They are looking for ideas and even will pay a stipend for someone to blog on issues of concern . If that one member present s a reasonable argument for some positive changes that are needed for the autistic community...(people can voice their own ideas on what those are here), others from WP can go on the site and vote for the idea to keep it on the top of the list. If it looks like no ones cares about this issue(and relatively few people seem to either know about or care about autism in any one other then small headbanging children), then we will have a chance to be heard .

Anyone interested ? If not, I will give you further incentive to step forward...if no one comes forward who can communicate better then myself....(and I am often a raving lunatic when upset by injustices towards the autistic community so I would not advise me as a positive role model for adult autistics) ...I will do it myself, and believe me, you don't want me to be the poster girl for autism . I'm dyslexic and long winded...a very bad mix.

Come on....pretty please ?

Wow. I am sorely tempted. I'm a writer and might have some fun with this and do something useful. Hmmm....I suppose there's no harm in applying for the job. Perhaps I will. I'll think it over....

I would love to, and words in general are a great strength of mine, however, I don't have a lot of time, and I would need to be given ideas to put down ahead of time, so that I could work on the blog entries before they happen.

Yea ! We desperately need to get our voice out there . I'm hoping others will come along to give some suggestions of issues that are of concern for them . My current interest is in adults being over looked and for two reasons. One is that I am afraid that many of them do not know they have AS and are miserably struggeling to keep a float and the other is that I believe that unless good scientific research is done to understand the autism through the whole life cycle, that they snake-oil salesmen will keep trying to "cure" vulnerable children with ABA, Chelation and other ineffectual and dangerious programs .

You may have already read this...since I'm in love with this guy right now but I good starting point....

http://www.unstrange.com/essay.html

One thing I would like to see go up would be the dangers of misdiagnosis. If you haven't seen the thing about my misdiagnosis, I'll link it again...

http://www.wrongplanet.net/postt85775.html

Hmm, this is of great interest to me. I may consider it. I'd love to take up this kind of advocacy position, to be honest. My only concern is being able to keep up with daily blog posts - that's a rather large demand, even for someone who loves to rant-- er, write. I meant write.

Your right...misDX is a huge issue with persons who have AS, especially those of us who had issues before here ever existed such a DX...(I'm 45) . Even today, there are far to many psychologist and genera physicians who are clueless that women or adults can actually be on the spectruma and they are more likely to Dx them with a personality disorder or just look at them as "symptoms" ...social anxiety, depression, anxiety and medicate the heck out of them while advising them to "get out more and socialize" . That is what happened to me at 29 and it just made everything worse.

I don't see it as much different then a DR who knows nothing about diabetes suggesting that a diabetic be given some stimulates for their fatigue instead of the carbohydrates they need to stabilize their low blood suger . Bad medicine happens when lack of research leads to lack of the proper tools for a diagnosis which leads to either unhelpful(neglect) or even harmful treatments being given . This is happening to many adult and female autistics today .

Perhaps if several people were interested they could share the responsibility...aspies working as a team ...stranger things have happened

im sorry for not defending our cause, im bussy with my baby.

I love this website. Just when I think I'm the only one in the universe like me, I read a post like this and think, yay!, another proud ranter, I mean writer.

Richard By "baby", I assume your referring to your collection of fire agates or your hang-over or...are you "breeding" for the cause ? On a side note....When we get finished setting up the aspie community in Texas, I really hope you will come work with us ...we are going into book binding, rock collecting, retirement and aspie/artist retreat and maybe a bit of goat wrangling.... (You can bring which ever baby your referring to .)

WOW, krex that sounds fantastic, and as you know i am referring to my fire agate. i would like kids someday though and lots of autistic ones. when is this aspie community gonna get started? i'd defintley like to check it out, and my hangover is gone now. i drank some pepto bismal and black coffee to get rid of it

Last edited by richardbenson on 18 Dec 2008, 2:53 pm, edited 1 time in total.

What I applaud more than people making positive changes are the ones who let the people make the positive changes. I have been surrounded by so much negativity in my life. I have no idea why that is, maybe it's just where I live. I live in a state that's pretty close to the bottom in darn near everything and it influences people's attitudes. If I had my way, I would applaud anyone who lives around here making positive changes in his or her attitude. It would help a lot.

I didn't mean to derail my own thread...but I will keep you in the "loop" for sure Richard . We are still working out the details and you know how slow us developmentally delayed folks are We will need some strong backs to help in the building and only a few hang-overs a week allowed .

it sounds like a good deal, and thanks for keeping me informed

Really? Where? It's a huge state....

I can write, but am probably too cynical to be of real use to you.