OK

... that much is certain.

That's what the doctor said, calmly, carefully. He's a psychiatrist, so he was carefully gauging the reactions of both my wife and myself.

Andrew sat in his chair, smiling, watching us with his careful eyes. He'd been giggling a moment before, but fell quiet when the doctor spoke.

And in that moment, everything, and nothing, changed.

We both knew Andrew was autistic long ago; the usual signs, so often reported that I wont even bother to go through them here. Textbook in many ways, so far from textbook in so many others. He was always incredibly engaged, so connected and attuned to us and the world that we knew it was mild in many areas, severe in others.

But the world is not like it should be, of course.

Here in rural Missouri, there's no real support system. Doctors, wearied by patients coming in month after month to fill prescriptions for Vicodin that they know will just be sold for $10 a pop, just refused to shoulder the burden of writing the obvious diagnosis ("I'm not qualified; you need a child psychiatrist, or a specialist") and then refused the apparently heavier burden of writing a referral to just such a specialist.

My mother-in-law, who has spent the last six years dying in slow-motion, could not be abandoned for the four days it would take for us to go to St. Louis or Columbia and have Andrew fully evaluated, and nor could she have come with us on such a long journey.

And the school system, when he finally started, misdiagnosed him either accidentally or deliberately (and we firmly suspect the latter) as having a "sound system disorder". Fortunately, my wife is a psychologist (Ph.D from Cambridge, not a BA from University of Online Fraudistan), so she knew that that little misdirect was completely meaningless.

So now, Autism Spectrum Disorder diagnosis firmly clutched in hand, we can finally, finally, get our son the help he needs.

Now if only we had some sort of integrated, central National Health Service that, you know, was National, and provided a Service, like, say, Health.

About Andrew
He cannot speak in an interactive way; he has outbursts of frenetic activity, running back and forth and yelling. He has poor motor planning skills, and poor fine-motor skills. He can be disruptive.

He is also smart. He is in 2nd grade, and at school, when he has finished his work, he plays with 5th grade math problems for fun.
He speaks in quotes. Our theory is that a quote requires no assembly at the point of delivery - the phrase is there, pre-packaged and ready to use. The quotes he uses may be obscure, but they are always appropriate to the situation. He will also tailor or personalize a quote to make it fit more perfectly.
He began school at age 6 in Pre-K before being moved to another school with access to the resources he needed. That year he graduated from Kindergarten, and has moved through first and second grades at a completely normal pace.
He is making huge progress in speech and occupational therapies, but they are not tailored to autism as far as we can see at the interminable IEP meetings. Now that he has been formally diagnosed, that will change.
He is affectionate, outgoing, creative and bold.

He is Andrew. He is our son.

He is not Autism.

Originally posted to Freelance Escapologist on Fri Jan 04, 2013 at 09:00 AM PST.

Also republished by Parenting on the Autism Spectrum.

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