ASD – Diagnosed

We finally received Micah’s autism diagnosis yesterday, after a 4 hour evaluation.  It’s actually a relief to get the official diagnosis because it’s been 5 months of chaos since he had language regression, since we first saw signs of autistic behavior & went to our first doctor’s appointment.  Since then, Sooooo many tests were done, so many blood draws, urine analyze, EEG’s, doctor’s appts, evaluations of every sort, just to rule it all down to the “A” word.

The PhD doing Micah’s developmental eval thought we might be stressed about a diagnosis of autism, but we are actually at peace.  We’ve already gone through accepting that Micah has autism and that his brain functions differently than most people.  This diagnosis wasn’t for us. It was for the insurance company, for the medical community, for the therapists, for the nay-sayers that think he is just a hyper 2-year old, eventually it’ll be for his educators (though, we were told they do another one), but not for us.
We discussed a whole lot of jargon and DSM information regarding what type of autism & what that means, but with the definition of Autism in the DSM being revamped in the next year, much of that will change too, or at least the names of the definitions will…

He is classified as having high-functioning autism, but that label means nothing to the average person.  It would be like me speaking Martian to you.  This really only helps his therapists know what type, & what level of therapies to do with Micah.  To the rest of us it’s just a fancy-sounding verb placed in front of the word Autism.  It doesn’t tell you who Micah is as a person, what his interests are, his favorite foods, favorite color, that he has a mischievous streak, or anything else for that matter.  These are the things I want people to get to know…I want them to know the REAL Micah, not his medical label.

I am glad the diagnosis is done, so we can continue down the road and fully incorporate all partners into our goals (hopefully).  It’s difficult working with so many different entities and trying to keep a consistent thought of what you’d like accomplished.  We are fortunate though and we know it.  We have been able to get Micah ABA and speech therapy through a tax-funded agency, even while we were waiting for the insurance- approved, medical diagnosis.  We know that there are many people that don’t have access to these services for their children, so we are VERY, VERY thankful.  I don’t know what we would had done without them these last 5 months.  I can’t imagine sitting around waiting for your child’s developmental appt  and feeling that lost or alone.  You really aren’t provided much information by the medical community until you have your diagnosis.  Until then you’re on you own (and whatever you glean from the internet).   Can you imagine that??

….It was hard enough early on even with the support and information we received from the Regional Center…I just can’t fathom trying to figure out the right path on your own. We need a better system in the US.  Everything is so disconnected and wonky.  I don’t care what side of the healthcare debate you may be on, you can’t argue that our healthcare system isn’t broken.  It shouldn’t be this hard to get the medical assistance you require.

Well, that said… now we have a mini plan for this next year.  Hopefully we will be able to incorporate in some OT therapy for Micah as well, and have everyone play nice and cooperate, but I know we are likely to have some more hiccups along the way. At the end of 2012 we are set for more evaluations because Micah turns 3 years old (apparently, this is a milestone age for the agencies) and he’ll transition to another system.
It’s all baby steps…we have some ground to make up…Micah has a lot of work ahead of him…we’ll just go one foot in front of the other, or whatever way neurologically diverse people walk, with maybe a hint of a skip…if Micah has his way.  🙂

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