5 Autism Paradoxes (#170)

"Paradox" could almost be a synonym for living with autism, or for life in Autismland.

Autism Paradox #1. What is stim-play and what is real, actual play?

Charlie carefully carries up his lighthouse placemat, "mife spoon fork," and Bob the Builder plate upstairs and arranges them on a pillow on my bed. He goes back down, comes back up with a pot filled with dry brown rice (he snatches the bag from my hand). The pot goes on a stool, Charlie goes under the covers, laughing all the way. "Sick-kenn, no sick-kenn! Phissh, I want phissh!" He gets up and checks the pot where the rice is still raw.

Is he pretending to cook himself dinner? Or simply re-enacting–scripting–a process he finds fascinating? Or did I simply write a definition of a child’s early pretend play?

Autism Paradox #2. I love living where we do; we would be in a place we did not like and not here, had Charlie not had autism.

Autism Paradox #3. How poorer my life would be without meeting so many of the great people–the Stellas, Taras, Arielahs, Vershas–(this includes you, my blog friends) we have thanks to Charlie.

Autism Paradox #4. Education and treatment therapies ought best to be individualized for each child. How, then, can we talk about all of our child with autism, PDD-NOS, Asperger’s, as a group with common traits?

This evening I went out with four other autism mothers. Some have children who are mainstreamed, some are still in need of special ed classes, some (this would be me) have children in private autism schools. Earlier today I had spoken with my case manager about high school students with Asperger’s who have been able to be integrated (as much as they can–as much as a teacher and other staff are willing to reach out to the students) and to go to college.
We talk about "the autism spectrum," a term which implies that there are different gradations–of colors–of autism. I both like this metaphor and also find it limiting. What if we spoke of the "different shades of autism" in the same language that has been used to describe the ethnic, racial, religious diversity of the United States? We’d then have to talk about an "autism melting pot" in which the different types of autism all meld together–in which we have a sense of what we share (that "triad of impairments," in communication, play and social skills) first and foremost.

One thing is for sure about all of us parents wherever our kids may be: "No one fights harder for their kids than parents of kids with autism," I heard early on in our entry into Autismland. This leads me to

Autism Paradox #5. Do I love the autism my child has? I love my child with autism.

Charlie has autism, autism is Charlie, Charlie is autism: None of these are paradoxes. They are just plain true.

While I was out with the autism moms, Jim took Charlie to the McDonalds drive-thru. "How did it go?" I asked after they picked me up. "He took it up and ate it on our bed," said Jim. "Another good day, right?……Oh, what’s this with the rice in the pot?" He glanced up at the stairs to where Charlie had settled into sleep. "What a character–what a great kid."

2 Responses to “5 Autism Paradoxes (#170)”
  1. Wade Rankin says:

    You have once again hit the nail on the head in putting a word (this time: “paradox”) to a feeling we all have. Thanks for a great post.

  2. Lora says:

    “Charlie has autism,autism is Charlie……They are just plain true.” Kristina you always say it so well and reflect my true feelings about autism and Griffin. As always, thanks for sharing.

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