Why unity may help kill Autism Speaks?

[Guest guest]

There is no doubt that Autism Speaks has A/. Money and B/. A good

Ministry of Propaganda. The average person in the street sadly knows

little about Autism, and probably that knowledge comes from the

people who make the most noise and get themselves on prime time TV

shows.

Most people are told that Autism is on the increase so they naturally

expect there to be a reason for this, this opens the door to the

sensational claims that we have seen over the last few years. Better

detection isn't so newsworthy. If Joe public sees an organisation

that appears to have the aim of reversing this increase in autism

cases he will naturally think that this is a good thing and worth

supporting,he will not be aware that a section of the autism

community are actively in direct opposition to Autism Speaks. I have

been suprised by the apparent apathy of the autistic community which

has been so often mentioned in these forums. Is there really so

little interest in setting the record straight? MIC is great and is

clearly gaining momentum, but it can only do so much.

I am not familiar with the way things are done on your side of the

pond but in the UK groups that have a point to make get organised as

there is strength in numbers, and publicity costs money. Is there no

grouping of autism organisations under one umbrella who could plan a

campaign to inform the public of what is really going on? There are

thousands of people reading boards, blogs and on youtube everyday so

they could be reached in theory.

In the UK pressure groups try to get a member of parliament on their

side and he or she can raise the issue on their behalf, do your

senators/congressmen work the same way?

The influence of Autism Speaks needs to be matched by a high profile

well thought out campaign with some high profile people fronting it.

This may take a long while as I see little signs of unity at present

though most people seem to think something needs to be done.

I know that this must all sound like " pie in the sky " , but what else

is there?

[Guest guest]

"I have been suprised by the apparent apathy of the autistic community which has been so often mentioned in these forums. Is there really so little interest in setting the record straight?"

I think the interest is there on a moderate level, but I believe there are two reasons why people do not get more actively involved:

1) They have a certain fear about attracting attention to themselves. In some ways, the autistic community is like the gay community in that they know they are not exactly liked, and sometimes actively hated if they make too much noise. Given that many autistics struggle to make it through each day generally, motivating them to risk coming under the scruitiny of others is hard work.

2) Some of them are lazy.

"MIC is great and is clearly gaining momentum, but it can only do so much."

I agree with you there, although I will say you will see MIC grow even more over time.

"I am not familiar with the way things are done on your side of the pond but in the UK groups that have a point to make get organised as there is strength in numbers, and publicity costs money. Is there no grouping of autism organisations under one umbrella who could plan a campaign to inform the public of what is really going on?"

There is, but that particular organization seems to wimp out when it comes to dealing with Autism Speaks. I will not name that organization here, because there are a lot of other things they do which are truly excellent.

"There are thousands of people reading boards, blogs and on youtube everyday so they could be reached in theory."

True. People just need to spread the word. But most are afraid or too lazy to do that.

"In the UK pressure groups try to get a member of parliament on their side and he or she can raise the issue on their behalf, do yoursenators/congressmen work the same way?"

Theoretically yes, but in reality, most do not care about issues that affect such a small segment of the population (1 in 166 in the US if you exclude the familes affected by autism.)

"The influence of Autism Speaks needs to be matched by a high profile well thought out campaign with some high profile people fronting it. This may take a long while as I see little signs of unity at present though most people seem to think something needs to be done. I know that this must all sound like "pie in the sky", but what else is there?"

Your way is one way, and I would encourage others here to submit their ideas. I would just say though, that trying to torpedo Autism Speaks with a smear campaign is not what is needed. (And I know this is not what you are suggesting, but I am stating this for anyone who is dreaming up such a thing.)

If you notice, the news item which MIC posted (researched and drafted by me, edited, recorded, and audio worked by Raven) was entirely factual. We simply reported what the autistic community has said about the organization or what the media has discovered, and this report was done almost exclusively through quotes used by news organizations or by autism speaks themselves. THAT, in my opinion, is a reasonable ethical way to go about things, and I would encourage others to think of similar ethical methods. In this way, we as autistics will be taken seriously, rather than as a ranting rabble.

Adminsitrator

[Guest guest]

Just wanted to add something to my post:

GRUBTUB wrote:

"I have been suprised by the apparent apathy of the autistic community which has been so often mentioned in these forums. Is there really so little interest in setting the record straight?"

I responded:

I think the interest is there on a moderate level, but I believe there are two reasons why people do not get more actively involved:

1) They have a certain fear about attracting attention to themselves. In some ways, the autistic community is like the gay community in that they know they are not exactly liked, and sometimes actively hated if they make too much noise. Given that many autistics struggle to make it through each day generally, motivating them to risk coming under the scruitiny of others is hard work.

2) Some of them are lazy.

Just wanted to add:

As far as the fear goes, if anyone would have told me 15 years ago that I would be running these forums and involved in an international initiative that raises funds and awareness for autism with two CDs issued with a couple songs on them I co-wrote, and with covers on them which I painted, and with a bunch of podcasts released that have been downloaded over 3,000 times with nearly 500 organizations linking to them, I would have thought that person was crazy.

Once I began to understand what was going on in the autism world, I was naturally upset, but was too reluctant to do anything. I was safe in my own little world. Why bother? Then the Aspie militants got involved and while I had a little fear that they looked like a bunch of idiots, I figured they would make some progress.

However, what I soon realized is that the first to respond to a problem are not always the best. Many times, anger is the motivating factor and anger causes people to do foolish things. The militants have now been painted by Autism Speaks as a lunatic fringe that can be easily dismissed.

That's when I undberstood that if you were going to be taken seriously, then you had beetter BE serious. That's one of the factors that led to these podcasts being educational rather than rants.

Ravenn, in fact, deserves the most praise for all of this because it was SHE who wanted to get the ball rolling faster and quicker. I was reluctant to proceed so quickly because I did not want to draw attention to myself. Had we started when she wanted to, and the way she wanted to, MIC would have gotten much bigger much faster.

The podcasts themselves were her son's idea, although he was nebulous as to their specific content. I research them and write them, she edits them. Sometimes she does the primary editing, like the "Transitioning Autistics Back to School" one. Both of us review our sources to make sure they are reliable and highly regarded and recognized. THAT is why so many organizations have linked to them.

She, being a musician, thought of the CD idea, and she has put together numerous fundraisers.

There are things in the works right now that will have a very positive outcome for autistics.

With that said, all this began with two people (three if you want to include her son) sitting around and saying "Something needs to be done." There are people here who are lower funcjtioning than I am, and there are people here who are higher functioning too.

All of us can do something. And more people should become involved, because there may come a time when Raven and I will find ourselves exhausted and ready to pass the baton on to others.

I can understand the fear, but it's not that bad being on the other side of it now. I can understand the laziness. But I think laziness and fear are poor excuses, particularly in light of the fact that there are organizations out there which clearly do NOT have the interest of autistics at heart which make great strides in the wake of so many people doing nothing or next to nothing to counter them.

Adminsitrator

[Guest guest]

Is there no

> grouping of autism organisations under one umbrella who could plan a

> campaign to inform the public of what is really going on?

In Scotland we have the ish Autism Services Network, a project of

Strathclyde university. www.scottishautismnetwork.org.uk

England deserves similar. They hold panels with us, frequently, for

us to say what we want said in guide materials issued to professionals

about us. They have been talking about some more general public

awareness too, but right now it seems mired in who should write what

for it - if everyone is not sure of the overall plan of what material

there is value in producing, then the item slips through a meeting

unsolved and another 2 months pass of just thinking about it.

It was very important milestone for me to write a website article for

SASN, last year, which I mentioned here, opposing the gifted children

movement.

> The influence of Autism Speaks needs to be matched by a high profile

> well thought out campaign with some high profile people fronting it.

All the high profile folks don't seem to be nicelty motivate enough

that they would want to front it.

> This may take a long while as I see little signs of unity at present

> though most people seem to think something needs to be done.

> I know that this must all sound like " pie in the sky " , but what else

> is there?

>

[Guest guest]

My strategy is " speak with calm and reason in a relaxed but firm

manner " , although I will confess to getting a bit peeved on occasion.

I do comment on a few lists for parents of aspies.

>

> Is there no

>> grouping of autism organisations under one umbrella who could plan a

>> campaign to inform the public of what is really going on?

>

> In Scotland we have the ish Autism Services Network, a project of

> Strathclyde university. www.scottishautismnetwork.org.uk

> England deserves similar. They hold panels with us, frequently, for

> us to say what we want said in guide materials issued to professionals

> about us. They have been talking about some more general public

> awareness too, but right now it seems mired in who should write what

> for it - if everyone is not sure of the overall plan of what material

> there is value in producing, then the item slips through a meeting

> unsolved and another 2 months pass of just thinking about it.

>

> It was very important milestone for me to write a website article for

> SASN, last year, which I mentioned here, opposing the gifted children

> movement.

>

>> The influence of Autism Speaks needs to be matched by a high profile

>> well thought out campaign with some high profile people fronting it.

> All the high profile folks don't seem to be nicelty motivate enough

> that they would want to front it.

>

>

>> This may take a long while as I see little signs of unity at present

>> though most people seem to think something needs to be done.

>> I know that this must all sound like " pie in the sky " , but what else

>> is there?

>>

>

>

>

[Guest guest]

Zoe wrote: " My strategy is " speak with calm and reason in a relaxed

but firm manner " , although I will confess to getting a bit peeved on

occasion. I do comment on a few lists for parents of aspies. "

I have read some of your comments at one list and have to admit that

your strategy is most definitely is to " speak with calm and reason in a

relaxed but firm manner. " What bothers me is the reaction you and I

and others like us receive .... either ignored or attacked.

Like you, I comment on more than one list for NT parents of children

with ASDs and almost always get ganged up on when I suggest something

reasonable that will benefit the child directly and the parent

indirectly when what the NT parents want is a way to benefit themselves

first and who cares if it benefits -- or harms -- the child.

Still, we have to continue doing what we do otherwise who will speak up

for the innocent who cannot speak up for themselves?

Raven