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Thursday, April 12, 2012

From Mostly True Stuff


Autism Freaking Awareness Month.

Yay. It's April. It's Autism Awareness Month, and to celebrate, me and the five million other people who blog about autism have set out to piss each other the hell off. Or at least, some think we do.

Ughghggg.

This is what autism looks like. So handsome.
It's tough. I think we go into this "community" thinking that because our children have the same diagnoses, we are ALL the same. It's totally ironic. We shout from the rooftops about how great it is to be different, but the minute someone thinks differently from us, to hell with them! (This isn't just an autism community thing. It happens everywhere.)

Just like autism is a spectrum, parenting a child with autism is a spectrum. We approach it differently.  We have our own beliefs as to where it came from, how to treat it, and how to help others.  And that's good.  I have my own beliefs. I have my own damn blog. You're here. You're reading it.  These are MY views. They are not that of the autism parent community and definitely not shared by people who HAVE autism themselves. 

Where it Comes From:

This question is huge. And it's a huge source of fighting within the community. Despite all of the research, the vaccine debate rears its ugly head in too much of the source-of-autism discussions. I do not believe that vaccines CAUSED Casey's autism. I think this jump in numbers of autism cases sort of lends itself to "proof" that vaccines don't cause autism. If they did, this anti-vax movement would have AT THE VERY LEAST slowed the prevalence of autism. It has not.

I do believe that better diagnostic criteria can be attributed to the rise. It doesn't nearly explain ALL of it though. If so, there would be a HUGE subset of adults who are autistic and were never diagnosed. It's called the "Hidden Hoard" theory. Granted, I think there are A LOT of people who have high-functioning autism who were never diagnosed, but that still doesn't account for all of those who went undiagnosed.

But what it really comes down to is that we just. don't. know.  Which makes research so vital.

Treating Autism

There are the Mommy Warriors. The Jenny McCarthyers, who say you can "cure" autism through diet, cleanses of different sorts, vitamins, etc.  There are the behaviorists. These believe that the way to "cure" or treat autism is through a regimented program (ABA and the like) that is akin to a full-time job for kids on the spectrum.  There are those who don't treat it at all. They think it's completely natural. And then there is EVERYTHING in between.

I get comments from people ALL OF THE TIME about how it's wrong that I medicate Casey. Their child does not have the same autism my child has. If your child can be "cured" through Music Therapy, your child does not have the same autism.  I treat my kid based on my own research, his personality, my personality, and his medical and behavioral needs. I personally do not believe that he will be "cured" and I think this "curing" autism speak is dangerous. Not all kids on the spectrum respond to dietary changes (Casey didn't), not all kids need or can do 40 hours a week of ABA.  You treat your child based on their needs. Don't compare your child to others and please, for the love, do not tell another parent that what they are doing is wrong just because it's not how YOU would do it. If they are asking for your opinion or help, that's one thing. But to seek out parents to preach to is something else completely.

Helping Others 

If we all believed staunchly that research was key, we'd all go to every Autism Speaks walk and hold hands and sing. But we don't.  I understand the criticisms of Autism Speaks. Too much money spent on ads you don't agree with, too much money spent on research, not enough spent on services towards individual families.  Many have criticized the amount of money that the head of Autism Speaks makes ($391,892; the highest paid employee of Autism Speaks, the Chief Science Officer, makes $456,420 ). It's a lot of damn money. It does make me cringe a little when I think of how hard I worked to raise the little money I did for the Autism Walk the year after Casey was diagnosed, only to have it go to make someone rich. But then I looked into it. Check out the salaries of the top paid people at these organizations:

American Cancer Society: $2,222,000
American Red Cross: $1,000,000
Susan G. Komen: $481,000
United Way: $864,000
(figures are from www.charitywatch.com, verified through BBB Charities)

These non-profits are run JUST like other businesses. In order to grow the charities, they need to compete; in order to compete, they need to have CEO's who know what they are doing. It may not be right, but it's the way it is. If you don't like it, don't support them.

I do believe that Autism Speaks (and the other organizations listed above) does a lot of good. Autism Speaks is educating people. They are raising awareness. They are giving families who are newly diagnosed some direction. The reality is that they can't help every family with a child with Autism.  There are just TOO many of us.  They should have more on their staff who have autism themselves. I think it would prevent some of the outrage that has come over some of their ad campaigns and terminology. Regardless, they aren't going to be able to make everyone happy.

There are many fantastic organizations that deal mostly in research. Research is important. It will help future generations in better diagnostics and treating. I particularly likehttp://www.autismsciencefoundation.org/. If you believe in the importance of good research, this is a great organization to give to.

For Autism Awareness Month, I'm asking the same thing I asked last year: for your help. Specifically, to help parents YOU KNOW who have children with autism.  Call a mother of a child with autism and ask her if you can take her kid(s) for a couple of hours. Respite is what I think we, as parents, need most. And it's really one of the hardest things to get. With Abby, I got respite just because she has an extra chromosome. She got the funding for it right away. For parents of children with autism, even here in Virginia, it's TERRIBLY tough to get. I looked into it with Casey. The waiting list is 5 years. He's been on the waiting list for respite services in Washington State since he was 18 months old.  Autism is TOUGH, there is very little relief. We don't sleep. We deal with more stress than I think others would even believe.  

If you don't have the capacity for whatever reason to babysit a child with autism, send their parents a check. Tell them to get a babysitter. Or even just get a movie and treats to watch after they've sedated their child for the night. But not us. Lance and I are good. We get a lot of help from the wonderful people around us. We have our nanny coming. So not us. You have to know someone else who has a child with Autism. If you do not, email me, I'll send you an address. Do something, then tell me.  I'd LOVE to hear what you did. 

Back to my original thought. Autism is a spectrum. The ways we approach it and deal with it are going to be as different as our children are. As we are. And that's okay. If you disagree with me, that's totally fine! In fact, I welcome it! It's how I learn about other points of view. It's how I see things I haven't seen. If nothing else, it gives me someone to fight with.

My husband won't fight with me.

But remember, not everyone who speaks their mind wants to be fought with. Sometimes they're just airing things out as a way of dealing with them. Working through them. My views on autism have changed a lot in the last seven years. I'm still learning. Be nice to the jerks who aren't as awesome as you.

And, I'm a little late, but I'm linking up over at Adventures In Extreme Parenthood, if it's not too late. If it is, Sunday, I will murder you in your sleep. Love.

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