Shh...Mum is Thinking

Friday, May 19, 2006

Autism Speaks Once Again Fuels the Culture of Despair



Has anyone out there in Autism land missed the new Autism Speaks video?

You? You missed it?

Lucky you.

I intended to comment on several points on the video, but it angers me too much. Instead, I'll cover the worst of it. And I have a point to make afterwards.

Oh, yes, indeed.

THE VIDEO

The woman who is holding her daughter, little girl about 8 in a pink shirt? The woman who is saying how her daughter is just like a baby, needs constant attention, that she never gets a break, her life is constant misery because of this child. She's HOLDING that child right there in her arms while she says it. The little girl, during this diatribe, says "Crying?" Turns mum's face towards hers. "Are you crying?" Kisses mum a few times.

Mum is not impressed, you can tell.

Mum wants to talk about her pain and misery at dealing with this autistic child.

Mum doesn’t want kisses.

Kisses are just another interruption, you can tell that much.

This same mum, later in the video WITH HER AUTISTIC CHILD IN THE ROOM as though this was nothing to feel coy about. Says. She contemplated. Driving this child off the George Washington Bridge rather than put her in a school for autistic children. With this child standing in the same room with her. Casually, she says this. It is not a moment of high emotion for her, she is recounting something she has probably talked about many times. She says the only reason she didn't do this was because she has an NT daughter. She would have killed her autistic daughter and committed suicide if it weren't for her NT daughter.

Honest! Right in front of her daughter, she said this!

This video is full of shmucky pity party stuff. I’m not going to get into the rest of it; the retch-o-metre is quickly reaching projectile stage… This woman saying these things in front of her daughter stood out to me as the worst of the video, and probably the worst bit of propaganda that I've ever seen about autism yet.

You want money for autism research, Autism Speaks? Great, knock yourself out. Do you have to run your children (and ours) down to their little faces to get it?

This is really putrid stuff.

But wait! There really is more.

THE RESULT OF DEGRADING AND DENIGRATING AUTISTIC PEOPLE

And this is a real world, actual and direct result from this ‘culture of despair’ type propaganda.

http://www.hoinews.com/news/news_story.aspx?id=8878

About a mother who confessed to suffocating her recently diagnosed autistic daughter. The mother said she wanted to end her daughter's pain, and her own as well. The victim was a three year old child! Why did this mother feel so much despair for her daughters future, why had she given up hope?

Those of us with autistic children and more experience under our belt than this mother had know the likely answer. This woman was probably faced with information very similar to what is found on the Autism Speaks video. It's everywhere; we parents researching to learn about autism are faced with this tripe at every turn. There is no escape from the constant, relentless despair that is being dished out, usually in the name of 'helping' autisic people. On reflection, and with time and thought, most of us will eventually realise there is usually a monetary reason driving this type of propaganda, and can take it for what it's really worth.

But what about this mother? Why did she feel such despair for the future of a three year old child? Did anyone bother to tell her there is hope? That autistic children DO progress, and often beyond anything their parents had dared hope for at the age of three?

Like I said, curbie organisations want money to fund their aims. Fine. Bloody well fine.

Stop stomping all over our lives to get it. We're worth more than that. And so are our/your children.

I’d like to leave you with this thought.

Our children are not here on this earth to fulfill our needs and wishes. We know that intellectually, do we know it in our hearts?

Yes, it’s hard in the beginning learning how to deal with autism and coming to terms with the fact that our children’s lives MAY (and that’s a big MAY) not turn out exactly as we had envisaged before their births. But there comes a point when it’s dead wrong to let our loss of a dream causes real life hurt to our own children.

No child should have to sit and listen to their mum casually discuss having contemplated their murder. And no child should have to fall victim to a parents loss of hope to the extent that child in Morton did.

As parents, we need to stand up and cry “FOUL!” at organisations that are building this culture of despair to their own monetary benefit.

We need rise from the ashes of OUR wants and dreams, and deal with what IS, to the benefit of our children and ourselves.

This may not benefit Autism Speaks or those who want to sell us the latest cure. But it ~will~ benefit our children and our families.

6 Comments:

At 8:02 AM, May 19, 2006, Blogger Joseph said...

Great post. You should have Kev add you to Autism Hub.

Like I said, in this case it's the mom that needs a psychiatrist. She was planning a murder-suicide for crying outloud. I frankly think social services should be alerted.

 
At 8:25 AM, May 19, 2006, Anonymous Tera said...

Amen!

I'm with Joseph: ask Kevin to add you to the Autism Hub.

 
At 4:24 PM, May 19, 2006, Blogger Mum is Thinking said...

Thanks joseph and tera, I think I'll give the hub a go. I read there everyday anyway, might as well put my blog there :)

joeseph, I think you might be right about notifying social services. The fact these things were said in front of the child shows these feelings mum had may not be a 'past' problem, as she implies.

That child is a human with feelings, not an object. Her mum could benefit from some counselling to that effect, at the very least.

 
At 11:26 PM, May 20, 2006, Blogger Autism Diva said...

Wow,


Welcome to the blogosphere. Hopefully there will be more positive things to blog about soon.

You're graphics are beautiful.

 
At 2:52 AM, May 21, 2006, Blogger Phil Schwarz said...

Beautiful... thank you for putting words to this.

 
At 5:08 AM, May 21, 2006, Blogger Mum is Thinking said...

Wow, I feel honoured :)

Thanks for stopping by.

AD, between the news of the little girl who was killed and the new Autism Squeaks video it's been a bad week.

There are still good things to talk about, though, I hope I can fit some into my next post.

I have to finish my curbie kit first though....

:)

 

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