I generally avoid political discussions- especially the politics of autism. And I'm a little late to the game with this one- Kristina, for one, discussed it here, and Mamaroo, for another, here. But in case anyone else hasn't seen this video yet, I thought I would throw it out there. I'm not savvy enough to actually post the movie on this site, but you can click here to get to it. It's created by/for Autism Speaks.
A link was forwarded to me by my mom. She received it from one of her friends. And I felt like I should register my feelings about it.
I love the images used and the way autistic children are shown to be the beautiful people they truly are. We see laughter and affection and joy. I would like more of the general public to see pictures like these when they are exposed to autism.
The images are interspersed with statements- some of which I think all of us would agree with- to answer the question in the song's title: What Kind of World do You Want?
-"A world in which a mom can hear her autistic child say I love you." (This one made me smile and think of one friend in particular. Go Oliver!)
-"A world that doesn't judge an individual with autism."
I take issue, however, with a couple of the phrases, which seem to directly contradict the happy families seen in the video, as well as the statements above:
-"A world where no family has to live with autism"
-"Autism Speaks wants a world where autism is a word in the history books"
This point has been made more eloquently by many others before me, but if we wish autism away, aren't we wishing our kids away? The same gorgeous faces that are featured in this little video? How can we want the world to "not judge an individual with autism", but at the same time wish it would go away?
I find myself thinking "yes, I wish Henry didn't argue so much and I wish he would be more willing to try new things and I wish he could be more comfortable with his emotions."
But I also wish Thomas wouldn't have such anxiety over which superhero outfit he is going to wear, and wish he would stop jumping off the couch, and I wish he wouldn't cry about having to wear shorts in the wintertime.
Take away the difficult aspects of a kid's personality and what are you left with? It's not reality.
And I hate to think what an autistic individual would think, upon reading "I want a world where no family has to live with autism."
It's easy for me to say, speaking for myself only, because Henry is "mildly" affected by autism. He doesn't injure himself and he is able to speak to me, although it is far from easy and has been a long road. My comfort level with autism has grown over the years, and Henry's abilities have grown as well.
I guess I'll end up being wishy-washy and saying I can agree with bits of what Kristina and Mamaroo each said. I would love to take away Henry's anxiety, and be more confident that he'll be able to keep himself safe. But I have no interest in changing who he is. He waves his hands and kicks his legs to express his excitement. He hums and smiles to himself and repeats favorite lines from movies (tonight I was the object of "you little fool.") Those are all traits of autism, and they are traits of Henry. It's a package deal.
I wish that autism organizations would spend more energy/resources promoting research into assisting people with autism (focusing on the first two goals- the ones I agreed with), and less energy/resources worrying about ridding the world of autism. It may just be quibbling over semantics, but during Autism Awareness Month, when the aim is to educate the general public about autism, the words we use are vitally important.
Just another mom's 2 cents.
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7 comments:
I think, and I repeat I, that the reason we may all differ in our beliefs and view points in some of the autism topics is because all of us have very different kids and have had very different experiences. I was just getting ready to write a post about this (sort of). I plan on writing about "regressive autism" vs. "non-regressive autism". And also in my post I want to take an unofficial poll on the different experiences we have all had with how our children's autism developed and also the births (since this is all heavily on my mind lately). I have no problem with much of what makes Roo autistic. I have no problem with him flapping his arms of humming or any of his other quirks. I can say very easily that Brother-roo has many quirks that some may consider autistic like traits. I love the quirks! It is the part of Roo's autism that I feel, in our experience, may have been triggered by some other (environmental) source that I have a problem with. Roo has what I feel is "regressive autism". I can see similarities with Roo in very few of the children I read about on the other blogs, but some of those that I do, have had similar development (and continue to) as Roo. Some of the kids I read about may have had a complicated birth and this may be the real source of their delay. All of our experiences are different, as well as our kids.
I think there is so much more we need to learn about autism, the spectrum, that I for one feel that if Autism Speaks can raise lots of money and get to the bottom of so much of what is behind the reason for why some of our kids seem to be developing normally and then regress, I am all for that.
Mamaroo, I will look forward to your post. I think you hit the nail on the head with what you wrote here--
In my gut I believe that there are different "kinds" of autism. Maybe someday, as we learn more, they will not even all be called autism.
Henry has been different from birth, and my husband and I believe that something happened during his difficult birth that caused/triggered his autism. Maybe we will find out that it is more correct to say that he has "brain damage due to lack of oxygen at birth" or something like that.
I actually plan to ask my OB/GYN about this at my next checkup. Yes, it's almost 8 years after the fact, but I'd like to know if anyone in that field is investigating this possibility, as autism gets more and more attention.
I know of a couple other situations that I think are similar to ours.
But you are right- those of you who have experienced "regressive autism" do have more of an interest in the "why", and making sure it doesn't happen again.
Very eloquently put, Gretchen. I also agree with some parts of the video and not with others. Thanks for making me think about it a little more!
Actually, I think this is worth more than 2 cents----a "package deal" is a great way to put it. I do find that Charlie has been able to deal with his anxiety better as he has gotten older, and thanks to some careful teaching and attention to this. Every day I move further away from worrying about "why" Charlie is autistic to "how"---how we can teach him, provide him with the services we need, and increase understanding---and your writing here adds greatly to this!
Well said Gretchen, I totally agree with you.....it's a package deal! Excellent post.
This is such a tough issue! I tend to identify a lot with mamaroo's post and it is probably no coincidence that our kids are kind of similar. I don't want to change who Oliver is but I do want to help him make his way in life a bit easier. And for me autism isn't a series of quirks but rather a series of challenges that prevent Oliver from getting all he can out of life. The sensory issues, the communication issues, the anxiety. Yes, I would get rid of all of those in a heartbeat.
I liked your post because it made me think and frankly, not that many blogs do that lately.
I can't separate Charlie from his autism because I have never known him apart from it, so when your blog had that line, a world where autism is a word in the history books, I was taken aback. Do I wish Charlie didn't have autism? Yes, but then again if he was not autistic, he would not be the child (innocent, not affected by the world, never deceitful) that he is.
How's that for ambivalent? But I am with you, if his autism was more severe, I would feel stronger about it.
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