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“Light It Up Blue” is all over the place since it’s April – Autism Awareness Month. Yay! That’s the month I always dread, because my Facebook feed is flooded with posts by my Autistic friends on how much they loathe Autism Speaks and the whole “Light It Up Blue” campaign thing, and then! All the posts from parent friends who are posting stuff about how we oughta “Light It Up Blue”.

What is “Light It Up Blue” Anyway?

This part is more for my mom than anyone, because I know she’s going to ask me later. “Light It Up Blue” is this campaign that this organization called Autism Speaks puts out every year. It’s their signature campaign, supposedly to bring awareness and acceptance to Autistics and raise money for support and services to Autistics and their families.

It’s called “light it up blue” as supposedly more boys have autism than girls.

That sounds pretty great (acceptance! awareness! raising money for support and services!), but here’s the thing: Autism Speaks is BAD. It’s bad because, as the Autistic Self Advocacy Network (ASAN) says, “Autism Speaks has no significant autistic leadership and has never been aligned with the needs and priorities of the autistic community.”

Consider This

So!

Autism Speaks is an enormous organization that makes millions. It’s a non-profit, but don’t be misled by the term, “non-profit”! That only means that the profit that the organization makes goes back into the organization, which can mean (as it does in the case of Autism Speaks) that in “2013, Autism Speaks CEO’s salary was $371,000.”

That organization is Raking.It.In, to the tune of millions of dollars, on the backs of Autistics. How much of all the money that is donated actually goes to families and support services? It in the realm of a whopping 4%.

It occurred to me that this is all very similar to what the Alexander Graham Bell organization is doing with my own deaf community (remember my post on Nyle DiMarco?!), thrusting a medical model of disability on us, one that is based on a premise that we are broken, in need fixing, and seeks to cure us. This doesn’t align with what we know to be true: that we are as we should be. In line with the social model of disability, we are busy creating our own culture and removing barriers to our access.

Autism is no more a puzzle than anything else is. I mean, we don’t know what causes the Down syndrome that my daughter has, nor what really caused my own deafness or bi-polar disorder. Who knows? Might have been environmental, might have been genetic; it’s a puzzle.

We have never known exactly how my daughter’s Down syndrome would unfold (we knew that she was coming with an extra chromosome via amniocentesis), nor did my parents know how my deafness would expand and surround my reality.

I wonder:

Does not understanding something, or not having all the answers (that would be nice to have sometimes) mean that you need to eradicate that which you don’t understand?

Does not knowing how exactly Autism will unfold and shape the way a person experiences life mean you need to not support the life that is lived with Autism?

Furthermore, is it fair or right to support an organization like Autism Speaks and continue to “light it up blue” because they crave fatter cushions upon which to sit, and ever-more research, media and advertising to perpetuate their medical model of disability?

Light It Up Blue

Autism Speaks is not about understanding and accepting Autistics. The 3.8% that they actually spend on service grants for families and autistics shows that more clearly than words could.

Please don’t believe or buy into their hype; do your homework and tune in to the adult Autistics in the links below for more information.

Michelle Sutton (whose writing I love) wrote this: Blue Lights Won’t Help Me.

And More Super Awesome Posts to Check Out That are BY Autistic People:

#boycottautismspeaks – Boycott Autism Speaks (the website dedicated to information regarding why Autism Speaks should be boycotted)

Autism Speaks and Representation, by Autistic Hoya

#Boycottautismspeaks: Communicating a Counternarrative Through Cyberactivism and Connective Action, by Sarah Parsloe

A big, beautiful collection of essays that are Anti-Autism Speaks: click here

ASAN Condemns White House Autism Proclamation

Autistic People, Parents and Advocates Speak About Autism Speaks, by The Art of Autism

 

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I’m kind of fascinated by autism now. I think – like Down syndrome – that it is such an interesting spectrum as there is so much variety within and is just beginning to be understood and explored.

I’ve been following a blog called the Unstrange Mind for a while now and she’s  writing a series of posts on the new DSM-5 diagnostic criteria. This is evidently a huge deal in the autism community, this revamping of the criteria. Check out what she has to say about it all – it’s very, very interesting (and it’s a series of posts, so just go to her blog and click on the calendar there to the right, or look down for her post archives).

I don’t have a lot to say about this because I’m not part of the autism community. But I often wonder at this tension that exists between parents of kids with autism and adult autistics. I just don’t understand it.

I don’t understand why parents are not falling all over the adult autistics…. I mean, if I had a community of adults with Down syndrome that were telling me x, y, and z about their disability… oh man. Oh my GOD! That would be so exciting! I could ask questions about things that seem to be part of the syndrome. What I see with my daughter sometimes, is this just her or is this her extra chromosome expressing itself? What are their experiences? How was it for them, growing up with Down syndrome in this tightly-regimented world of therapy? Was the therapy worth it?

Tears well up in my eyes as I type this, just thinking of how much it would be mean to me to have answers to those questions by people that really know. To have sites like the Autism Women’s Network with posts like Listening to Autistic Adults.

And so I don’t understand it.

I really don’t.

****

Back to the Unstrange Mind and the DSM-5. Check it out – it’s fascinating.

 

.. I’m not sure if you read the news? A mother who was denied services for her autistic daughter attempted a murder/suicide recently. The news of it is all over the place. Here is the story: Teen With Autism Hospitalized

But this is the story I think you should read. It’s by an autistic disability rights advocate and it’s called Issy Stapleton Attempted Murder. Autism Community Responds.

Please read it.

She speaks for me: we don’t need to walk a mile in anyone’s shoes to know that murder in any form is unacceptable. That killing your child because your child didn’t receive services is horrific.

She also speaks of the other things you can do. Less dramatic, for sure, but things that will alleviate the pressure and bring you relief.

This should never happen.

And it’s not about how sorry we should feel for the poor mother who had it so hard. She may have. But that is no excuse to try and murder her daughter.

Here is the post again: Issy Stapleton Attempted Murder. Autism Community Responds.

 

 

April is Austism Awareness Month. April is almost over, and I am so, so happy to have Lexi Magnusson guest posting today. Lexi, because her profile picture on Facebook is a kitten with huge, sharp teeth – which I think says a lot about her and her style. She’s a sensitive mama with sharp edges and can snarl. She can also be hilariously irreverent – and sometimes we all just *really* need that, you know? I’ve been grateful to her many a time for making me laugh when all I wanted was dig a hole in the backyard, get in and cry.

Thanks, Lexi.

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The Short Bus.

Some confessions. As a teenager, we used to make “he rides the shortbus” jokes. When Carter was just one he’d put bowls on his head and run SMACK into the wall. I called him “shortbus” for a time. I thought I was hilarious.Wrong. So wrong.

Yesterday as I sat in traffic I noticed a mother pushing her small, small child out to a special needs (short) bus. The child didn’t want to go, that was clear. The mom got him on the bus, I watched as she struggled to get him buckled and then quickly left. She hugged her arms across her chest, shoulders slumped, and watched as the bus pulled away. I wanted to leave my car where it sat and run to her. Throw my arms around her and cry and cry and cry. I’m not much of a hugger or a cryer, but this scene took me back to one of the very hardest parts of my life.

That same scene played out in my culdesac when Casey was three. I’d carry him kicking and screaming to the bus. Struggle to get him into his harness and locked in so he couldn’t get out. I’d calmly leave the bus. I’d stand and wave to Casey as he cried and pounded on the window. I’d hold my arms around myself as if they were the only thing that was keeping me from falling to pieces. The first time was the very hardest. I wanted to just drive him to and from school everyday, but I knew that then the fit would be at the school. The scene would be at the school. I wasn’t saving anything by not putting him on the bus. This way, he could be on his way to getting over leaving the house, leaving me, by the time he got to school. I put him on the bus and held it together long enough to watch the bus drive away. I ran into my husband’s arms and didn’t so much cry as WAIL. It made things so real. So solid. So permanent. He walked me in and held me on the couch until I had calmed down to the point where I was only ugly crying a little. Too worn out to put more energy into expressing the pain that had a firm grip on my insides.

The image of Casey crying and pounding on the window is one that will haunt my dreams for the rest of my life. My non-verbal three year old was communicating to me. “Get me out of here!” and I couldn’t. I couldn’t just grab him and stop him from being so sad.

It went on for months. After the first day, I was, for the most part, on my own. Lance had to be at work. I did everything I could think of. Everything that the therapists and teachers said to that would help. We made “social stories,” I got him a toy school bus (they don’t come in short versions), we would prepare all morning. But each day the scene would be the same. Get him on the bus. Tie him down. Say goodbye and watch the bus drive away while just barely holding it together. After the first week of sufficiently scaring the hell out of my other two children, I’d only let myself cry between the time the bus drove off and the front door. I had to pull it together. I had to be tough for the two little boys in the house (who really didn’t give a damn, to be quite honest. They were too little to understand. But I was still stuck in thinking I had to fit into some mfing SN parent mold).

About three months into it was the first time he got on the bus without crying. It took bubbles and the world’s best bus driver. Every morning we would go out and blow bubbles until the bus came. Then the bus driver would throw open the doors and clap and yell, “YAY! Casey’s here!”There are no small jobs when it comes to working with Special Needs kids.

Yesterday the CDC released its latest findings on the prevalence of autism. When we did the walk for Casey, the prevalence was reported at 1 in 150. Even that number made me sick. It meant that 1 in 150 kids were struggling like Casey. It meant that those mothers had to deal with the pain that I had gone through. It means those kids getting on short buses while their parents struggle to hold it together. While they struggle to hold EVERYTHING together. To fit into some mold that no parent can manage.

And now the number is 1 in 88. Do you get that? 1 child in every 88 will be diagnosed with autism. 1 boy in every 53 (!) will be diagnosed. These aren’t just numbers. These are kids like Casey. My Casey. And these numbers represent mothers like me.

I didn’t tell anyone how hard everything was then. My mother would call and ask and I’d tell her that “Casey is doing SO well!” I thought that’s what I had to do. I would act like I was super tough. No one saw those tears. In fact, this is the first real time I’ve ever written this out or even spoken about it in length. But it’s WRONG. We need to talk. We need to say that it sucks and that we are sad. We need to be able to grieve, and grief is not too strong a word. Because it’s hard. It still is hard.

Last night I tried to write out Casey’s diagnosis story. I got about an hour into it and couldn’t take it anymore. I went upstairs and laid next to him in his bed. He wrapped both of his arms around me and hugged me tight. I cried for a long time. He was unaware. He was telling me all about the butterflies he wanted me to order and the plants that I needed to order along with them. All the while he was hugging me tight. Like his insides knew that I needed that, whether he was aware of it consciously or not. I wasn’t just crying for me. I was crying for the moms who have or are in the process of getting their child diagnosed right now. The moms who will have to put what Could Have Been aside for their child and face What Is. That’s the hardest part.

And What Is is tough. It’s sad. It’s exhausting. But it’s good, it’s so good, too. Those times where you feel as though your soul cannot take any more pain will make the times that are good SO MUCH better. I promise you that.

After my daughter Abby, who has Down syndrome, turns three there will be two special needs buses stopping at my house in the morning. Two. Casey and Abby are too far apart in age to ever be able to ride the same bus. I’m not sure how I feel about that yet.

But after all of this, I do know that I don’t think it’s funny.

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Lexi blogs at Mostly True Stuff
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Lexi pulled together a list of resources:

Support group: http://community.babycenter.com/groups/a6635/children_with_autism_spectrum_disorder

Blog Directory: http://autismblogsdirectory.blogspot.com/
The blog directory is HUGE. To see Lexi’s favorites, look who links up over at the Special Needs Ryan Gosling Meme’s.

..and about the Special Needs Ryan Gosling Meme: it’s done every Friday at Adventures in Extreme Parenthood, it’s a great way to “meet” other members of the SN community….not limited to parents of children with autism)) http://www.extremeparenthood.com/search/label/Ryan%20Gosling

New Favorite Autism Facebook page: http://www.facebook.com/autismdiscussionpage, TONS of fantastic information about autism.

 

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