My Autism, Colette Evangelista- Fellow Fridays

My autism is a part of who I am, like the sound of my laugh and the color of my hair….”

At this point and time I am a dinosaur.  Ten years ago when I noticed that my son seemed a bit “off”, Google predominately said that the three signs of autism were “non-verbal, doesn’t make eye contact, not affectionate”.  Or something to that effect.  My son was a hugger.  He had 12 whole words (for a solid year).  It can’t be autism.  When I questioned our pediatrician at a chronic ear infection visit, he got frustrated that my son kept flipping the lights on and off and opening the cabinet doors over and over.  He was however extremely impressed that a 15 month old could write the most perfect alphabet on the crinkled paper covering the examination table using crayons.  His expert opinion was that I was a “first-time mom” hypochondriac.

When the diagnosis actually came, it knocked my feet out from underneath me.  It would take years before I would even begin to find my equilibrium again.  Why?  Because I hit the hamster wheel.  Fix it.  Fix it. Fix it.  Try this.  Try that.  Do this.  Do that.  Diet.  ABA.  Therapy.  Shots.  Horses…….  WHERE IS MY MAGIC WAND?!?!?  Everyone else seemed to have one.

One night I lay in bed choking on my fear and failure.  I got up, went downstairs, banged out “My Autism” in about twenty minutes, and then promptly forgot all about it.  For 3 years.

I gave up.  Not totally.  I would never do that.  Too much at stake.  But I let go of the intensity of it.  I did my best.  I started to realize that I sucked at implementing ABA in our day, but I was good at pushing my son outside his comfort zone.  I tried to give him as much solid nutrition as possible but didn’t cry over another night where I allowed  Dominos to be for dinner.  

And one typical day in the middle of the week, my son was standing in our kitchen.  I looked at him and had a breathtaking moment of clarity.  He was perfect.  As he was.  I no longer saw “autism” flashing on his forehead.  Autism was one part of who he was, but certainly not all of it.  Autism was now neutral.  How did that happen?  When did that happen?  For years it was something to fight.  To fix.  What total crap.  What a total waste of energy.  My son deserved to have every part of him loved.  And that included the autism.  How could I have conveyed that there was a part of him that was not right?  That his beautiful self could have aspects to it that were scary and broken?  

Let’s be clear.  I had to stop right there.  I had already spent years punishing myself with the guilt of all the things I had done wrong.  Or worse, there were the “right” things I didn’t do enough of.  Now my energy would be directed at acceptance.  “Dear Lord…please help me to love with kindness and without judgment or agenda.”  It was time to celebrate all the good and do our best with what we had to work with.

And then I remembered “My Autism”.  I went back and looked at it.  I wrote THAT?  This positive story from a child’s perspective about having autism?  But  that wasn’t MY truth at the time.  How could I have done that?  

It’s been said that…as autism advocates….it is our job to be the voice of those who need help communicating their message.  “My Autism”  is my son’s truth.  This is our kid’s truth.

My autism is a part of who I am, just like the sound of my laugh and the color of my hair….”

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Colette’s Website: http://www.everyonehasautism.com/

Colette’s “My Autism” Facebook Group: https://www.facebook.com/MyAutismbook/

Writing for Autistic Children

Back in February of this year (2016) I had the pleasure of visiting a class via Skype. I didn’t know this going in, but the class was mostly composed of children on the Autism spectrum. They had a profound love of my books and that drove me to understand more about their needs and how to better serve their families.

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I went on Instagram and started interacting with the parents of ASD children. This led to a lot of fantastic conversations and a heaping helping of empathy on my part. I realized that I had an unusually large number of autistic friends (and former partners) and that the connection between myself and ASD was that I tended to be both over-sensitive and over emotive. My illustrations and writing also have the same tendency.

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So the question became, what kind of books could I make specifically for this audience?  One mother in particular, Mrs. Contreras (who also wrote the dedication for the new book), had a striking story to tell. Her three children are all on the spectrum, albeit at varying ends of the chart, and her household peace exists in a precarious balance. I asked her directly “What could a book do to improve your life?”

“Honestly,” she replied, “I just want to tell my son that it’s okay to hug me.”

I can’t imagine much that’s more painful than your own child refusing physical contact with you.

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From there we discussed pattern breaking (as I brutally phrase it) where a parent is able to convince or coax an ASD child off of an ingrained habit. Usually the pattern is disruptive in some way to either the child’s life or the parent’s well being. Notable examples include needing the parents nearby to sleep, keeping the house pin-drop quiet, or having one specific toy at bath time.

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I couldn’t address all of these issues, but I wanted to create a frame for discussion and specifically talk about Mrs. Contreras chief concern: intimacy. This subject became the central point of the book. The rest of the story, and I’m using that term loosely here, is focused on statement pairs. The first statement normalizes the pattern behavior while the second statement suggests something new that is outside of the pattern. I didn’t want to chide children for doing something that comes natural to them, neither did I want to fall into the trope of “you are a special snowflake that needs separate treatment because you’re not normal.” (I hate any attempt at division, even well-intended division.) The final pattern can be replicated endlessly and my hope is that parents will create their own pairs for their children.

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Once we had the story and the sketches down, I started showing the book to other parents on Instagram. The feedback was fabulous and contributed a lot to the look and feel of the book (even my own father got in the act by demanding better backgrounds.) I also met a therapist that specialized in working with ASD children, Saundra S. Harris M.Ed., CCC-SLP, who was kind enough to create a letter to the parents for the book- to which I am supremely grateful. Other parents noted that the simple language and direct illustrations were well suited to the audience. They were glad that I didn’t go into metaphor land.

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All in all, let his was the most collaborative project I have ever done. It’s my sincerest hope that this work is truly helpful to families out there coping with ASD issues. Doing work like this restricts the audience, as “It’s Ok to Hug” is by no means a bedtime story, but that’ skins of the point. Books are like shoes, there’s no one size fits all, and I much prefer to make books that people need rather than guess what people will want.

“It’s Ok to Hug” is available now on the Amazon Kindle store and on Apple’s iBook platform.