xmlns:og='http://ogp.me/ns#' Yeah. Good Times.: April 2014

Friday, April 25, 2014

The Dive Bar Welcomes: Adam Tanglewood

Just a reminder that I don't write Dive Bar posts. For more information see the tab at the top. This post was sent to me by a good blogger friend who wishes to remain anonymous.

Any time a parent takes the life of their child it is a tragedy independent of neurology. Any time a parent takes the life of an autistic child not only is it tragic, but it inevitably also turns into fuel for the ongoing Autism Wars and acts as a lightning seed to a shitstorm. A shit-ning seed, if you will.

Well, it’s happened again. And it sucks, and it’s tragic, tragic for the child, tragic for the mother, just straight up tragic. And now the sides will again rise up… and inundate the comments of your favorite autism bloggers.

I haven't seen a shitstorm yet. I think because I don't really watch my timeline anymore and only look at groups I miss most of this stuff.

From my perspective, I wish there was someone who would just address the "severe needs" side of this to ANYONE'S satisfaction. Someone who could talk intelligently about it from a self-advocate's perspective without saying that the reason child "A" self harms, or is aggressive is because the parent is doing something wrong. Someone who understands that it isn't practically possible to wrap our lives in fucking bubble gum and rainbows because they're not typically for sale, and when they are they're being sold by quacks and they're not ACTUAL rainbows, and the bubble gum is sugarless.

I wish someone would write something that said "Here is the evidence supporting the way to sensitively get children to stop harming themselves and being aggressive".

But there's not anyone. Because this is autism. And the autistic self-advocates, though in possession of great insights about what it is like to be autistic, and what things helped them...and despite their hatred of the phrase, "your autism is not like my child's autism" will never acknowledge that they are just as ignorant as NT (or autistic) parents about how to make it stop and how to make it better.

When I was at my lowest point getting slammed by self advocates for slights both real and imagined, a very close autistic friend of mine said something to me that made me feel a lot better. She said, "Do you think these people speak for ME? Because they don't." And while I get that they speak for SOME...so do the Autism is an Epidemic people, so do the I Hate Autism People, so do the neurodiversity people, and the Autism is a Blessing people and so do I. And I can't help but think that we each know just as much about this shit as any of the others do...nothing.

It feels like the analogy is this: if I raise an NT daughter, then I can't speak for that daughter because I'm not an NT woman. And only an NT woman (childless or a parent, really doesn’t matter for the analogy) would truly understand what an NT girl is going through. So what I should do is find an NT woman who doesn't know my daughter or her life and get her to please explain to me how to best parent my daughter because I'm a man and as a man don't "understand" my child the way this childless, but female person would.

Fuck you. I'm sorry. I reject the notion that you know what my daughter is going through because you hypothetically share neurology. Because the truth is you actually don't. Autism Spectrum contains within it a HOST of different conditions and issues that are all labeled under this huge autism umbrella. It's like treating "Cancer" (Yeah, I went there) as all one cancer and ignoring that leukemia gets treated differently than skin cancer gets treated differently than breast cancer gets treated differently than prostate cancer.

So that if you get breast cancer you should go ask someone who had skin cancer what to expect...because that's what those fucking assholes are implying...that Retts and Asperger's and PDD NOS and Classic Autism and every other disorder and comorbid condition from SPD to Epilepsy you can include on the spectrum are all the same and feel the same and should be treated the same. And they know best because they are autistic. Fuck that.

If you’re someone who is a parent who is trying to make sense of this all, and failing. and you’re surprised/shocked/saddened that autistic people are, because of your thinking, calling you a bigot, a murderer, an abuser, then this post is for you.

Those people don’t speak for the autism community. They do not represent “the majority” of autistics. They do not represent your son or daughter (unless your son or daughter is reading this and saying, “yeah, those guys represent me). They are just angry, angry fucking people. And I get why they’re angry. I do. But being angry isn’t the same thing as being right.

Bad things happen in this world. NT parents have killed their NT kids. NT kids have killed their NT parents. NT parents have killed their autistic kids. Autistic kids have killed their NT parents…people kill people. It’s fucked up. It’s tragic. We’ll never stop asking “why did that happen?” But it's not the foregone conclusion of someone’s politically charged “NT Parents are murderers” agenda.

Tuesday, April 1, 2014

April 1, 2014: it's not a joke

About a week ago I heard about Travis Stratton, a 4 year old autistic boy in California who went missing and drowned. There was only about a 3 hour period between his parents calling the police and when his body was found in a neighbor's swimming pool. My heart was shattered for this boy and his family. And honestly? I was angry. Because little 4 year old boys should not be drowning, but also because he was another in a too long line of names of autistic children who have died. I thought it would be a nice gesture to light a virtual candle in remembrance of the lives that have been lost, and so the Candlelight Vigil for Autistic Children Who Lost Their Lives After Wandering was born.

Child 1 is not what we call "a runner," I don't have to spend any time (at this point) worrying about his safety if I'm not keeping a constant eye on him. But this is my personal experience with autism, this is not the universal experience. I have way, way too many friends who spend literally every moment of their lives afraid of what might happen to their babies if they look away for just one second. My point in creating the vigil is not only to remember the people that have died, but to help show that there are many experiences with autism, and regardless of our personal opinions we all can agree that when children die it is an unimaginable tragedy.

If autism acceptance and awareness really is the true goal, we need to put egos aside and stand together. We all need to recognize that our personal experiences are not universal experiences, that each of us is unique in our own way, we all bring a different voice to the table, and working together is the only way to achieve this goal. And you can dislike me for the things I've written about in the past, but you can't just ignore this very real issue because I'm the one trying to bring awareness to it.

This isn't about me. This isn't about you. This is about all of us. Together. 

Are you willing to acknowledge that acceptance and awareness is a group effort? I am.  Will you join me?