An autism awareness avatar, designed by my son.
(I'm going to start out this blog's new direction with a cross-post of my FlashBlog contribution.)
We interrupt our irregularly scheduled romance novel conversation to participate in a Flashblog. This is a response to a recent "Autism Speaks" fear-mongering money grab declaration that autism is an
overwhelming tragedy which inevitably leads to broken parents and destroyed lives.
The experience of autism is actually very different for each family -- and for each autistic person. And no, it's not all unicorns farting rainbows for anyone, and as with any disability, support and accommodations are vital. But denying the personhood of autistic people to get money for an organization with dubious goals doesn't sit well with a lot of people. And we want to share what autism looks like in our world.
This is autism: suddenly noticing a round hole in my front door, and realizing it's because my 2 year old dismantled the deadbolt.
This is autism: a toddler who, for a short time, insisted we sing all his bedtime books to him. Even the non-rhyming ones.
This is autism: having a son who thinks that prejudice against people because of their sexual orientation is the stupidest thing he ever heard of.
This is autism: Video games programmed using PowerPoint.
This is autism: a child who can be trusted to buckle his own seatbelt, take his medication, and sensibly parcel out his Halloween candy.
This is autism: being able to show my child pictures of cute t-shirts or toys on the internet without worrying that he'll whine for me to buy them.
This is autism: a new Vi Hart video is cause for celebration.
Like many autistic children, my son is fond of schedules. And can be a little obsessive.
This is autism: The invention of Serious Kid, who would walk into the room at random moments and announce, "Hi, I'm Serious Kid. Always wear a helmet whenever you ride a bike," or, "Hi, I'm Serious Kid. Brush your teeth carefully after meals."
This is autism: having a son in middle school who bursts into smiles when he sees me, hugs me constantly, makes up little songs about how much he loves me, and never forgets to find me for a goodnight kiss before going to bed.
This is autism: relishing every small movement my son makes towards independence and taking care of himself.
This is autism: part of who my son is. He wasn't "stolen" from me. He's exactly who he's supposed to be. And because he's a person with his own identity, I checked with him first before posting this.
And because of the worldview Autism Speaks is helping to perpetuate, this is also autism: seeing another autistic boy trying to show a toy to his mom, who stops him because he's spinning it. A passing troll commenting on my blog to call my son a retard.
And taking my young son on an outing to Toys R Us, and discovering that they're running a campaign to get money for Autism Speaks, with "Autism - Solve the Puzzle" posters up everywhere. Seeing my son turn very quiet. He didn't yet have the ability to express how that made him feel, but here's a newsflash for Autism Speaks and Toys R Us: some autistic kids can read.
And even enjoy Internet slang.
Guess what... the one's that it's directed towards... CAN'T or like my youngest who can out read kids his own age... wish they could be "normal". It's not wonderful or glorious to miss out on summer camps, becoming a "normal" teen, to go outside without your Mommy following you everywhere or having to hold her hand so you don't bolt on her. Yes... he's adorable and amazing... but the meeting for the drug trial is on the 12th and I hope we get the drug not the placebo and it helps... Yes, Yes, I know those people you found online they'll tell you how DARE I attempt to "CURE" him.
ReplyDeleteI also have little sympathy for the "aspie" parents... if I can take a mild non-verbal one and make him "normal"... When they've started so far ahead of me... Oh wait... I'm not suppose to mention the lack of sleep, the lack of life, the lack of...
That's OK... the V will remove them all... including my eldest... After the last 10yrs in autism-land online... I'm looking forward to returning autism to a DISABILITY and not a hijacked dx by those that aren't.
Off to remove this blog from my feed...
I'm glad you posted, and I hope you will read this, because I really want to continue this conversation with you. The first time I saw one of the AS reaction posts, I had much the same response -- that's all good stuff, why aren't they mentioning any of the hard stuff? But that's because this flashblog had a specific goal of countering the idea that it's all despair and misery. In fact, quite a lot of people mentioned the hard parts anyway, as you'll see if you look. Not all the pieces were by "Aspie" parents. And you can't tell everything about a parent or a child or an autistic adult and where they are by one piece of writing.
ReplyDeleteYes, there are a few people out there who insist on talking about autism as if it's not a disability at all, but most of the people who believe in acceptance are also well aware that it is and that it's hard to deal with. They just don't want that to be all that gets heard.
I'm trying not to be offended at the implication that my son has a hijacked dx and isn't disabled. Yes, he's smart and has many talents, none of which add up to the ability to take care of himself. He would also probably accept a cure in a second if such a thing were possible, because he's so freaking miserable in a world that doesn't accept him. All he wants is to be a normal kid like everyone else.
I love Vi Hart films too especially the ones with songs.
ReplyDeleteAnd singing books are wonderful.