The A-word: Autism and Advocacy

About 10 days after my son’s diagnosis, I had “the talk” with my dad. We’d been denied for ABA therapy, the amount of speech therapy permitted didn’t seem to match with what we thought he needed.

Things might be looking very big, very hard, and very expensive. (they still do)

We might need some financial help. (It is wonderful to be blessed with a generous family and resources)

It is REALLY HARD to ask your parents for financial help at age 51.

I told my sister about how awkward it was to ask Dad for money*.

Get over it.

Is what she said.

You have to be a relentless and tireless advocate for your child.

No kidding, no dancing around things. You have to fight.

The A-word

When my son was first diagnosed, my wife and I carefully crafted an email to our family to let them know that “our son needs some behavior therapy and speech therapy”.

We didn’t use the word “Autism” at all.

In fact, we asked the few people who we told about the actual diagnosis to please, please NOT USE THE WORD “AUTISM”.

We didn’t want our son tarred with the term.

ASD and “the spectrum”

Language is tricky. Autism is a loaded word. It summons pictures of extremely disturbed children and adults.

Scary movie of the week stuff.

We didn’t want to say any of that.

Our son is not “THAT”.

Dammit, our son is not “THAT”.

And the mental health field is no help. We now have “Autism Spectrum Disorder”, “ASD”, “the spectrum”.

Anything but “Autism”.

Then we got his full report.

It was impossible to deny it anymore.

Our son didn’t have “Autism lite” or “ASD”.

He didn’t just need “some speech therapy and behavior therapy”.

In black and white, in painful, painful detail, it was inescapable.

Our son is autistic.

He has autism.

Relentless Advocacy

It is painful to know and good to know.

Clarity.

Bring
It
On

Autism is autism.

Just say it.

Tell people.

Say it often until it is “easier”.

It has been liberating….

… and surprising.

Autism is less rare than you think

Around 1 in 70 children in the US are now diagnosed with autism. So, you are likely to find that most people you know either knows some family experiencing autism or has someone in their own family who has autism.

I had joined the PTA at my daughter’s school this year but I’d been reluctant to sign up for much as we were waiting on our son’s diagnosis.

  • I kind of felt like a bit of a sh*t for not volunteering.
  • I definitely thought I looked like a bit of a sh*t for not volunteering.

So, at our meeting Monday at an appropriate time I apologized for not volunteering because…

…No problem, of course.

But the surprise was that one of the Moms in the PTA committee has an autistic child herself.

!!!!

We talked.

She set up a play date yesterday with her kids, my kids, and yet another family who has an autistic child.

!!!!!!!

We were not alone.

And the more people we’ve told, the more stories we’ve heard and connections we’ve made.

And the easier it is to advocate for my son.

Because if you don’t hide behind BS acronyms and deceptive language…

…no one else can either.

* Of course my Dad said “Yes”unconditionally to doing what they could to help.

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