Thursday, January 31, 2008

For whom does Autism Speak?

I have kept rather quiet about this until I was sure the domain name was active, but I now own the domain name autismspeaks.eu and I intend to hang on to it.

I assert my moral rights to the domain name on the basis that it is more legitimate for me as an autistic person, having some involvement in the world of advocacy to claim that autistics speak for autism in Europe and not organisations whose motivation is to falsely claim that they speak for autism, be that Autism Europe or anyone else.

Given the controversial nature of the claim I have just staked, I intend to keep it in the words of the advertising standards authority in the Uk:

Therefore I will not entertain any "NT" bashing or other slurs, I will maintain instead the position of equality of all persons no matter what their neurological make-up.

Because there is at present no one organisation run by autistic people that has a monopoly claim to representation any more than any other, I intend to use the site mainly as signpost to the multifarious world of autistic advocacy, with the usual "health warnings" that such sites as can be found via hyperlinking do not necessarily reflect the views of the this particular author. Though you can be sure that I will, because this is an EU domain, lean towards the much neglected European perspective.

Don't expect wonders from this site overnight, I am well busy at the moment, with my research and my various comings and goings in the autistic world.

11 comments:

Club 166 said...

I started working on a post last week that asked this same question, but put it aside.

AS doesn't seem to speak for anyone anymore. They don't speak for those parents who want their children (young and old) to be understood and supported, they don't speak for the mercury conspiracy theorists anymore (thankfully), and they certainly don't speak for autistics themselves (as so directly pointed out by them when they recently tried to silence the autistic lad who was so brash as to parody them).

About the only people that find AS relevant are people who donate to them to make themselves feel good that they're doing something, and researchers eager to tap into the mother load of money that they control.

Joe

Dave Seidel said...

Bravo!

Autism Reality NB said...

And do you also speak for non-verbal, in some cases, intellectually challenged, autistic children who do not share your understand and ability with language?

laurentius rex said...

To Mr Doherty I would say that your argument has long proven to be a non argument.

It fails on this singular point. What makes Mr Doherty think he is any more qualified than I am to speak on behalf of any non verbal autistic he has never met.

It has always been a part of my praxis to emphasise that autism includes a great variety of presentations and most certainly not all are at the same intellectual level as I am. I admit that I am singularly blessed in this respect - from undergrad to doctoral candidate in one year is hardly common in academia is it?.

However that does not give me the right to assume any airs of superiority and proclaim my neural diversity to be the next step in evolution as the aspergians do, there are just as many gifted NT's too.

To follow Mr Doherty's line of argument would force me into abandoning any care or consideration for less intellectual autistics would it not? And surely that is not what is required of me as an active citizen of this world. Or is this a trap that he would lead us all into all the better to confuse the concept of what autism is.

If you want to know the details of my belief and to actually here me speak you will have to buy my DVD

www.shiningcityvisions.com and realise that part of the profits go to the NAS who sell it. (not autism speaks)

gayle said...

Bravo, Larry.

As usual, correct, polite, and well said.- Gayle from Maine

Zarathustra said...

Autism Reality NB, have a look at www.autism.org.uk, the website of the UK's National Autistic Society, whom L.Rex is a Trustee and I am a member... Not just speaking for low functioning autistics, but acting for them, to the tune of many millions of pounds a year.

Hoxtonpaul said...

Thing is, we appreciate many children suffer from bowel disorders, they are non verbal, bite you, semi vegitative state. However, thats how they were made.

The chief argument against 'cures' arent against improving peoples lives. Anything that makes children better is naturally good. But its the Absolute idea of curing autism is the problem.

I dont know if one will ever be differentiated from the other.

Paul.

Ettina said...

"as so directly pointed out by them when they recently tried to silence the autistic lad who was so brash as to parody them"

Um, the teen they silenced was a girl.

Ivar T said...

Transgirl, not that it is important.

Anonymous said...

I have a different POV on Autism Speaks.
I back them 100% and work hard and aggressively raising funds for the Walks they host in my area.
For me when my child was first diagnosed they were the site I went to for straightforward information. I didn't care about statistics. 1 in 150 or 1 in 1,000,000 didn't matter to me. I cared about gathering as much information on the Spectrum as I could.
I cared about the people who cared about my son having the tools to be able to interact with him and I cared about his classmates and other parents in the school being aware of the facts of Autism.
Autism Speaks has helped me raise awareness in my kids school.
Wearing their tee shirts has been a conversation starter for me more times than I can count.
I'm of the thought that if a group or an organization can raise public awareness on the level that Autism Speaks can and gets conversations started and people talking then it can't be bad.
Okay so they don't portray folks on the Spectrum the way you all want to be seen. Then use their high visibility as a tool for yourself! Let them open the door for conversation and you fill folks in on the awareness!
Just because you don't like what the video shows doesn't mean it isn't a truthful reality for some people.
Because it isn't right for YOU doesn't make it wrong.
On a final note what do you all think of the Saint Jude commercials that appeal for funds and depict images of bald children in hospital beds?

laurentius rex said...

Well anonymous (I wish I knew who you are)

You might not have thought I would let that through would you?

It is hardly worth commenting on as this blog post is well out of date now, however I still have the .eu domain name and Autism Speaks have not come after me for it.

With regard to Autism Speaks you will have to catch up with me elsewhere for the latest I intend to post on them, as it will not be on this blog.

That being said, I intend to deal with them more fairly than they have dealt with some opponents, and grant them a point of view, as what my blog will deal with is issues that are beyond mere partisanship

Autism Speaks are not the Devil they are just one example of a media phenomenon, not original not even uniquely offensive when dealing with the imagery of disabled people.

They are still a young organisation and I think they are not incapable of learning and losing the obvious losers like Jenny McCarthy and dare I say it even Bob Wright, who is hardly tomorrows man.

Rhetoric gets you only so far because in the long run you cannot buy science, eventually it will follow it's own course and kick you up the backside