That pretty much sums up my feelings over the past couple of weeks about autism news. I have the feeling this post is going to go long and wide, so consider yourself forewarned….
At last week’s Senate confirmation hearings for President Bush’s nominee for head of the CIA, GEN Michael Hayden was asked to comment on the value of ‘targeted intelligence,’ the process of gathering intelligence explicity supports a desired outcome. (If I remember correctly, it was asked by a Democratic Senator doing a bit of sneaky Bush-bashing.) GEN Hayden replied along the following lines – this is a paraphrase, I could not find an actual transcript:
I’ve got two great kids, teenagers. But if I wanted, I could put together a dossier on them that contained all the bad things they’ve ever done. This would be accurate, but would not tell the whole story. You would think these were the most rotten, evil kids on the planet. If all you are looking for, or expecting to see, is one aspect of a situation, then that is what you will get.
This exchange from the hearings kept popping into my mind as I read the many descriptions of the Autism Speaks video, Autism Every Day. I finally got around to watching that video today. Ack!! Thbbbt!!
This video is nothing if not targeted intelligence, the Autism Speaks equivalent of the 2003 State of the Union address and Secretary Powell’s briefing to the UN on Iraq’s weapons of mass destruction program. What is their goal? Well…, war of course. War on autism. But is this also a war on autistics? It’s kind of hard to tell the difference.
About half way through the video, which to that point basically consists of a bunch autism parents – I should say autism MOTHERS – whining about how hard life is with autistic kids, I couldn’t help think, “So what? Parenting is hard.” In fact, I was going to write a bit about that, but Kev beat me to it:
No one is claiming parenting children is easy. It is not. No one is claiming that parenting children with special needs is easy. Its not. But at some point we have to say to ourselves – yeah OK, this is hard. We have it harder than parents of NT kids…..so what?
Moving past and getting on is as easy or as hard as you want to make it. I don’t want pity. I don’t want sympathy. What I want is understanding. Genuine comprehension. Cynically manipulative pieces like ‘Autism Every Day’ will not aid comprehension. It does not show reality. It shows the bad things. A lot of the bad things in this piece seemed induced either purposefully or by ignorance. I am not saying bad things don’t happen, I am saying they are far from the whole story.
Deja vu, anyone? (See the quote from GEN Hayden above.)
I was flabbergasted (to say the least) when one of the mothers in the video said that, except for the fact that she also had a non-autistic daughter, she would would have driven off the George Washington Bridge so her autistic daughter “wouldn’t have to go to that school.” Thbbbt!!! With the autistic daughter (8 or 9 years old) in the room with her. Ack! And then the non-autistic daughter said, “I wish I had a non-autistic sister.” …!!!… (words escape me here) Not I wish my sister weren’t autistic, but I wish I had a different sister.
This of course leads into the story of the death of a 3 year old autistic girl at the hands of her mother. Much of the press, and most of the comments from the family and friends, seems to be along the lines of, “Poor woman, she was the mother of an autistic child and she just snapped. Please pray for her. It wasn’t her fault.”
Much of the whining (sorry, that’s how it came across to this 13 year veteran of autism parenting) in the video was focused on how the autism negatively impacted the lives of the parents. “Sorry, I’d love to go get bagels with you, but I’ve got to go deal with my autistic child.” “I couldn’t keep the job I wanted.” “This wasn’t my choice. I’m not a therapist, I got drafted. I’m a parent of an autistic child.”
Let me tell you a story.
A couple of days ago some friends watched their 6-year old son die, heard his last breath as he succumbed to terminal illness. About 3 weeks ago, their son’s body began rejecting food from the tube. Nearly 6 months before that, he became unable to eat food (hence, the tube). For the past two years, he has been unable to move. An unbelievable amount of love and caring. Did they miss the things they could not do? Undoubtedly. Did it make their life hard? Yep. Did they whine about how miserable they were because of their sick child? Not a chance. Did they consider throwing him off a bridge? Puh-lease!
Life is hard. Parenting is hard. So what?