A Willful Woman…

Thoughts about books from a romance addict.

This is Autism (for me)

on November 18, 2013

Awesome Avatar

An autism awareness avatar, designed by my son.

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.

9 responses to “This is Autism (for me)

  1. autisticook says:

    “He’s exactly who he’s supposed to be.”

    Couldn’t have said it better. This is beautiful.

  2. willaful says:

    Thank you! It was inspired by a beautiful boy.

  3. sonomalass says:

    YES. Each child is who he/she/zhi is. We need to treasure and nurture that while we teach them to navigate in the world.

  4. Sunita says:

    Damn, it’s dusty on my bus home.

    Fantastic post. Thank you.

  5. Diana DC says:

    Very nice! Your son got exactly the right parents.

    • willaful says:

      He used to tell us a story about how before he was born, he went to a bunch of different parents and none of them wanted him, until he came to us. Kind of horrifying, but it also really resonates with me. We have our fights and problems, but we’re mostly such a good fit.

  6. fw2 says:

    Autism speaks was trying to deal with the ND crowd that hijacked the DX yrs ago but with the V will no longer be ASD. Autism is expensive. Supports are few. I spent today Alone at the PEDs. I cannot work so dh has 4 per Diem’s on top of the farm and is rarely home. Let’s not get started on adult supports and housing. Autism sucks. Yes children are wonderful but adulthood comes quickly and I will not live forever…. Then who will protect my 12yr old? My 14 yr old will be trying to live his own life and bang against his own end of the spectrum.

    • willaful says:

      Of course, that’s a tremendous worry, one I share… but I don’t think Autism Speaks is doing anything that’s going to make that better for me. One of the biggest complaints about them is that they ignore the existence of autistic adults.

  7. […] This is Autism (for me) – Autism Speaks made another public policy statement that was full of language that marginalized those with autism. Willaful, a book blogger and mother of an autistic child, writes a lovely rebuttal. […]

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