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Screw You, Autism

Figuring out what to do first, and who to call, and what meetings to set up, and where we go from here... We are in that mode again. And I can do that.
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Something else has changed. Again. Something else has shifted in our lives. Imperceptible to anyone but us. How a single word -- perhaps a word we were expecting, that we found unsurprising, even -- can make me crumple to the ground in a heap is something I should understand as a writer, as someone who attempts to find the power in words. But I don't. I am still at the mercy of the people who yield these words, I am still crippled by them.


The words she uttered afterwards like "high-functioning" and "cognitive potential" were cold comfort after that word. I asked her outright if it was really true, if it was really so.

"Off the record," I began, "I apologize if this is unprofessional, but I have to know for myself, I have to know the truth -- are you labeling him as autistic because he desperately needs these services or is he actually autistic?"

"No," she replied while gesturing towards the seemingly endless numbers and test results and percentages and age equivalents she had just spent more than an hour going over with us...

"He's actually autistic."

I felt my eyes well up with tears and my lower lip tremble. I heard my voice begin to shake while I asked the question, but managed to get through it without letting my emotions pour out onto her vast mahogany desk. I didn't dare look over to my left where Scott sat, just out of arm's reach. I knew, from the variety of meetings and diagnoses and news like this before, that I could not look over at him. That if our eyes met and I saw his -- red-rimmed and on the verge as well -- I would not be able to contain what was building up behind my own.

So, I stared forward at the doctor. I again scanned the words on what were now heavily marked-up pages in front of me, even though I knew these words had already been burned into my memory.

Owen K: Actual Age, 3 years, 9 months.

Age equivalent of 2 years, 10 months.

9th percentile.

Developmental Test, 5th percentile, Range: Low

Expressive Vocabulary Test, Age Equivalent of 2 Years, 6 months.

Adaptive Level (High, Moderately High, Adequate, Moderately Low, Low)

Owen's Scores: low, low, moderately low

Low, low, moderately low, low

Low, low, low, low

Low, low, low

Overall score: Low.

I felt like I had one of those Magic 8 balls in my hands and it kept coming up as "Outlook Not So Good." And somehow, the fact that he remained playing happily behind us while the doctor asked us a series of questions, and made this diagnosis, and discussed the wide gap between where he should be and where he was, well, it broke my heart just a little bit more.

It had only been just over 10 months since his last major diagnosis. Since the last bomb had been dropped. Since our hearts had been broken. Since new fights had to be fought, plans rearranged, therapies reevaluated, medical journals pored over in some masochistic late-night exercise...

When can we let our guard down? When can we be allowed to feel the weight of what is, without also needing to feel the tug, the pull, of what might still be?

This is not his most devastating diagnosis. It is not similar to the stroke or the brain malformation that deeply frighten us with their rarity and lack of definitive prognosis -- and that's sad, isn't it? It says so much about the road our life has taken us on. And this is scary, and has looming questions of its own, and the unknowable stretching out before it, too. But we are playing triage now. Figuring out what to do first, and who to call, and what meetings to set up, and where we go from here... We are in that mode again. And I can do that.

Somehow, one day, all of this changed something in me and I became something new.

I went from feeling powerless over our future to feeling powerful within our present.

I can do this. I know this mode. I know about calling, and advocating, and fighting, and finessing, and when to ask politely, and when to push harder, and when to feel guilty that you called someone an asshole before hanging up on them (and when they just deserved it), and when to ask for a supervisor, and how to schedule, and just how much I can accomplish while listening to hold music from the insurance company on speaker.

So here are my facts about my son.

Diagnoses: Stroke in utero, Cerebral Palsy, right-sided hemiparesis, missing Arcuate Fasciculi bilaterally, brain malformation, autistic, f*cking adorable.

Weaknesses: Cognitive impairment, cannot climb stairs unattended, poor trunk strength, word retrieval, very poor retention of learned materials, impulse control and self-regulation, chocolate.

Strengths: Unusually high pain tolerance, very strong, loves helping, incredibly hard-working -- will go through hours of intense therapy without complaint, affectionate, charming, contagious giggle, can fart on command.


What are the chances that this new diagnosis will slow him down in any way? Low.

What are the chances that you will quit fighting for him to get the services he needs? Low.

What are the chances that this will break you? Your family? Your marriage? Parker's childhood?

Low. Low. Low. Low.

Screw you, Autism.

This post originally appeared on Jamie's blog Our Stroke of Luck.
You can follow Jamie on Facebook, Twitter, and Instagram.

Also on HuffPost:

Facts About Autism