this is autism – flashblog

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As you may know, there’s a flashblog happening today called This is Autism, in response to Suzanne Wright’s recent repeated use of the phrase in last week’s Autism Speaks to Washington: A Call to Action. The request for submissions reads as follows:

Tell us what “This is Autism” means to you. You can write a paragraph or a blog post, contribute a poem or a video, make a comic or a graphic. Use your imagination. Let’s tell the world what autism is in the words and works of autistic people and those who love and support them.

I was asked by the organizers of the flashblog for permission to use my recent post, and I happily agreed. And then I went on my merry way.

And then, just after dropping Brooke off at school, I read THIS. And holy crap on toast people, I could barely wait to pick her up again. Because … YES .. THAT!

Please take a moment to follow the link and read the post. I won’t go anywhere. I promise.

Okay, so now you get it, right?

Emma wrote, “Autism is a method of energy.”

I mean, right?

My wheels were turning.

Until recently, I would have been convinced that Brooke was not ready to participate in something like this on her own.

But guys, Emma wrote that post using a letter board and a pencil.

And my God, what she wrote.

We could figure this out.

It wasn’t a matter of “when” or “if,” it was just a matter of “how.”

After school, Brooke took some much-needed down time. It may or may not have included Dora the Explorer and a stack of Chips Ahoy, but you didn’t hear that from me.

And then I handed her Luau’s phone. And, sitting right next to her on the couch, I explained that I was going to ask her a few questions. That’s what I did. The conversation is long. And meandering. And contains a LOT of scripting. But I’m not going to edit it all because I think it’s important. I think the fact that there are very real answers to some really deep questions RIGHT IN THE MIDDLE OF THE SCRIPTS matters. So here goes.

Me: I’m going to ask you a couple of questions, k?

Brooke: Ok, Jessica

*fits of laughter*

Me: Oh dear. Try again, giggle monkey.

Brooke: Ok Meema

Me: Ok, here goes. What is Autism?

Brooke: Me an you

Me: What does Autism feel like?

Brooke: What we have. Now I will ask you questions.

Me: Ok! You ask me one and then I’ll ask you another, k?

Brooke: When I googled a Joe’s Clues video what comment did Barby say?

Me: Oh man. That was schruvey*!

*Brooke’s word for “not okay.”

Me: Ok, my turn. Is Autism a good thing, a not-so-good thing, or just a thing?

Brooke: Did you take it away?

Me: I closed the video down, yes.

Brooke: Pee and poop

*giggling uncontrollably*

Me: Yuck! It’s your turn to answer my question. Is Autism a good thing, a not-so-good thing, or just a thing?

Brooke: Did the comment say Go die in a hole Joe I hate you?

Me: Yes it did. And that wasn’t okay. I answered your question, can you answer mine? Is Autism a good thing, a not-so-good thing, or just a thing?

Brooke: It’s all right not all wrong.

Me: I like that answer a lot. May I ask you another question or do you want to ask me one first?

Brooke: Bye Jessica. I have to go now

*giggles* 

Me: Not yet, silly! If you had to tell someone who was new in class* what Autism is, what would you tell them?

*A favorite script is welcoming a new student to class, so I thought this would be a good way to frame a question

Brooke: I saw Gymbo. Don’t that the hat off just leave the hat on.

Me: Hmmm. I don’t think that would help the new student know what Autism is. Can you tell me how we should explain Autism to the new student?

Brooke: Aaaaaaaaali

*giggles*

Me: Is it something you wear like a hat?

Brooke: It means what you always have when you are strong like a sissy.

Me: What do you mean like a sissy?

Brooke: It is what BJ calls Baby Bop*.

*characters from Barney

Me: Oh! Because Baby Bop is his sister?

Brooke: Yes

Me: That’s awesome.

Brooke: It means good

Me: So it means what you always have when you are strong like a dinosaur?

Brooke: Yes

Me: Thank you for explaining that to me! I was confused about the sissy part. I have two more questions, ok? If the new student asked you if you like being autistic what would you say?

Brooke: I don’t know Jessica

*giggles*

Me: Try again, Missy.

Brooke: Not sure Moooma.

Me: Well, here’s what I want you to remember, okay? You are awesome. Autism is a part of you. Therefore Autism must be part of what makes you so awesome. Promise me you’ll remember that?

Brooke: *sends me a photo of her pretending to eat her foot* and laughs herself silly.

We call it a day.

When I asked if I could share this conversation she said, “Yes, You would do that.”

So, to be clear …

To Brooke, Autism is all right, not all wrong. It means what you always have when you are strong like a dinosaur. It means good.

To her Mama, it is part of what makes her awesome.

Flashblog entry complete.

Infinite gratitude to Ariane and Emma for inspiring us to find a way for my girl to contribute her voice to this conversation. This is … everything. 

17 thoughts on “this is autism – flashblog

  1. Hi, I loved this so much!! I am currently in the waiting (forever) process of having my daughter Morgan tested for Aspergers Syndrome, she is 11. The thought of her being on the spectrum is something I’ve been thinking (known) for years. saying the words out loud and sharing this with other people is a lot different than just silently thinking about it. The hardest part for me was saying it to my daughters face, “We are having you tested for something called Asperger’s, do you know what Autism is?” What happened next was amazing, she was relieved. She opened up about things she had been holding in and just let it pour out. I have the page Scarred For Life on facebook and Morgan has many fans due to her creativity. I asked her if we could share about this so maybe we could meet so other kids with magical minds like hers. She decided she wanted to be a part of my writing and we did the same thing, the question and answer. Her answers were awesome. I found that I just couldn’t put it into words so we made a video (it’s on the page somewhere) and have made some great connections. I’ve followed your page for a while and you inspire the hell out of me..so thank you!!

  2. “Autism is something that changes development in a child. It could be good or bad. For me, in a way, things are different than I expected but at least nothing bad happens, really. I think for me, being autistic is a good thing, but for some others it might be a serious condition.”

    That is my 9 year old autistic daughter’s answer to “What is autism?”

  3. Pingback: What is Autism? | Looking at life through amethyst colored glasses....

  4. I love this. That Brooke experiences autism as you and her and it feels like what you (plural) have, reading the ‘strong like a sissy’ part and that sissy = sister I wonder if Brooke was also thinking about herself as a sister and/or Katie as her sister? So strong like her and Katie and not just strong like a dinosaur? Or maybe I just interpreted it that way because I’m so often struck by your stories and what incredible young people they each seem to be, and the beautiful relationship they share.

  5. My daughter created a video to explain her autism to her classmates. Its been two years and I cry every time I see it. A man in Colorado contacted us and asked if their school district could use it. It has been shown at a local university to all of their special education majors. Her voice. Their voices.

  6. My son was asleep when I read your blog post today about asking Brooke. I almost wanted to wake him up and ask him, almost – but I refrained. Tomorrow will be here soon enough! Thanks for providing me with some ideas on how to bring this subject up to my son.

  7. It’s interesting and fascinating to read about so many kids taking ownership of their identity in this way. My 14-year-old Aspie son, who has known he’s “different” since he was two and a half, shies away from the autism/ASD/Asperger’s label as much as possible. He wants nothing more than to fly under the radar as neurotypical.

    He knows that just about everything is harder (but not impossible) for him, which makes him that much more determined to do whatever it takes to do and be what he wants — with no label attached. I’ve often remarked that embracing his autism and sharing more with others about it might be a relief. But for now he says no. And I have to respect that.

  8. I read a comment on the Huffington Post about the whole Autism Speaks fiasco. I have copied the comment and my reply to the commenter. Please let me know if I handle this well. I tend to get annoyed with the broad strokes families are painted with when it comes to autism. Maybe I was too harsh. I am asking you all to let me know.

    (jened wrote:)
    Linda, agreed that it’s quite jarring. The sad thing is, though, families are torn apart by this tragedy (the case of Alex Spourdalakis being a recent example where the hospital and medical system and ultimately the parents failed him) and sadly there are more children who die of wandering, drowning deaths etc. What I find hard to take is this “Susie Sunshine” view of autism that we currently have shoved in our faces (the ‘neurodiverse’ crowd claiming that autism is just ‘a different way of being’) This doesn’t serve us well either. I agree with you that all children are worthy of dignity and respect. I just feel that on the other side of the balance that autism is being brushed off as no big deal- just a socially awkward person that may work at SV. Sadly, many of the kids I work with will likely not be able to work in any sense of the word. The ‘neurodiverse’ do not speak for them.
    18 NOV 8:35 PM

    (tracyacrosley wrote:)
    @jened Actually, your facts seem a bit skewed. There is a higher percentage of lost kids who wander off and drownings with kids who have no autism, or any other neuropathic problem. I agree that families need more support when there is autism in the mix. I also agree that “Susie Sunshine” mentalities are quite prevalent among people with autism. My niece is a 17 year old senior that is duel enrolled at a prestigious college. She, also happens to have Aspergers. I have a cousin who is severely autistic and will always need lots of care. I don’t think he would want to be the face of autism’s dark side anymore than she would want the Susie Sunshine role. Autism is very different for each individual as much as each person’s journey can have many common factors. The problem the autism community is having is the broad strokes that are being painted by Autism Speaks. Neither horror nor sunshine should be shoved into anyone’s face because there is a middle ground where most walk daily. My niece doesn’t want sympathy. She wants acceptance. My cousin doesn’t want sympathy. He wants acceptance.

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