Day #163 – Coming Out of the Closet – ASD Style

On Monday I wrote about how autism has made me a better parent (See Day #161 – Better Parenting).

You know what else autism has done for me?

Made me a better human.

The day I saw the word autism on the computer screen was the day I stopped worrying about what other people thought.

Well, now…that’s not entirely true.

The origination of ‘coming out of the closet’ was about letting a private issue out to the world.  It is a journey of decision-making, of risk-taking, of strategizing.  It is about personal identity.  It is about opening yourself up for possible oppression, shame, and social stigma.

I remember the first time I saw the word.  I gasped.  I shook my head no. I walked away from the computer.  I went for a run.  I decided I wouldn’t read any more, then I got home and read until 2 AM.

The next day I called our OT, “So – this sensory integration issue – it’s autism?”

She replied, “Well…yes, sort of.  It’s all on the spectrum now – high-functioning autism, Asperger’s, low-functioning – it’s a change in the way we classify.  It’s because his ‘version’ may change, it will probably change.  So – yes and no.  You may find after we offer services and support that he develops coping skills really quickly.  Those skills can stick, but not always.  I guess I don’t really have an answer for you – other than yes, he’s on the spectrum.  His placement on the spectrum will change.  It will ebb and flow with age and maturity.”

I was in the closet about autism for quite some time.  Tucker was ‘normal’ enough that I could keep it a secret.  Only I couldn’t.  My mom knew something was up – she would say, “He can sit and do puzzle after puzzle after puzzle…but there is something.”  His preschool teacher knew something was up – she would say, “He just doesn’t play well with others.”

What would people say?
What would people think?
Had I done something wrong?
What did this say about me as a parent?  As a mother?

I continued to call it ‘Sensory Integration Dysfunction’ and then ‘Sensory Processing Disorder’ – but the more I read, the more I talked, the more I knew…it was spectrum.  It was further on the spectrum than I even wanted to admit.

So, in Kindergarten his Special Education teacher said the words.  She followed it up by saying, “It’s okay, Nikki.  I promise.  He will do amazing things in life.  He will teach you things you could have never learned.  He will amaze you…but you have to let him.  You have to let it be okay.”

One foot out.

In 1st grade it became more obvious – it became more obvious because the services were working.  I thought he would just ‘grow out’ of some of it.  He didn’t.  Well…he developed coping skills through carefully planned activities with PT, OT, Speech Therapy, Anger Management, Special Ed, etc.  He wasn’t growing out of it…he was getting used to it.  So was I.

Two feet out.

I met another mom with a boy a lot like Tucker.  She refused to have him tested.  She refused to see what I saw.  I could watch her young son and see my Tucker – see my Tucker without all of these special services.  He was retreating.  Retreating in speech, retreating in contact with others, retreating…

The door was wide open.

The moment I flung that door open was the moment that autism changed my life.

THAT was the moment that I really stopped caring [so much] about what other people thought.

I didn’t care that he threw himself on the floor at Wal-Mart.  I calmly, simply bent down to help him up.
I didn’t care that he hid under the table at a restaurant.  I calmly put his glass under the table so he could have a drink.
I didn’t care that he chewed on his books.  I simply took them away.
I didn’t care that people stared.  He is quite a handsome boy.

It’s also the moment that I realized that we think others care a heck of a lot more than they actually do.

It’s sort of like relationships.  My good friend went through a divorce and she said to me, “Just hide in your basement for a month…let it blow over.  When you come out, people will have moved on to talking about something or someone else.”

She was right.

So, when my husband writes (See Day # 131 – My Someone’s Version of God’s Plan) about everyone having a story, about not judging, about loving all people – he’s right.  I may have been prone to that school of thought…but autism made me the headmaster of that school.

Autism helped me to wear mom flats…and be totally okay with it. Seriously, you can’t go after your ‘runner’ if you have on 2 inch heels.

Autism helped me deal with my naturally wavy hair.  Seriously, I don’t have time to worry about hairstyles when I have to stick to someone else’s schedule.

Autism helped me stop worrying about my nails.  Seriously, I cannot be careful with my hands – they have to get down and dirty, daily.

Autism helped me exercise and eat right.  Seriously, I have to stay healthy and alive for him.

Autism helped me in so many ways – about knowing what is and was worth worrying about…and what isn’t.

What I’ve really learned?  Most of it really isn’t worth worrying about at all…most of it really is small stuff.

So, in essence his teacher was right.  He taught me things that I couldn’t have learned any other way.

He taught me to live, to really live.

For me.

For him.

For us.

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I’d love to hear your thoughts…

When you finally ‘came out of the autism closet’ what became very clear to you?

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2 thoughts on “Day #163 – Coming Out of the Closet – ASD Style

  1. What became “real” for me was my own judgment and ignorance. How could I advocate for others to be less oppressive of my child’s nature without being more open-minded myself? I had always thought of how much I was not a “kid person” which predominantly applied to kids and behaviors I didn’t understand or approve. Now, I love my kids and like all kids…all people… a little better than before.

    Even the ones who make ignorant and offensive comments get the benefit of the doubt (& a brief amount of education frequently). I never was a person who cared a lot of what other people thought and, now, I am training myself and my family to care even less which truly just amounts to teaching them appreciation of their and others genuine selves.

    Like

  2. Pingback: Day #327 – Indexing | 366 Days of Autism

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