Thursday, April 02, 2009


Today is World Autism Awareness Day.

One of my nephews is autistic. One of my friend's sons is autistic. Oddly enough, the kids (both boys) were born three days apart. Total coincidence since they had never met at this point and lived states away.

Each one of my four sisters (including the somewhat aforementioned one) has had a speech delayed son. It might be a coincidence, but maybe it is just a sign of the times. About 1 in every 162 children born has Autism. Isn't that fucking crazy?

I'm sure it existed when I was a child, but I will assume we never saw those kids. I never did. I think families hid them away.

Max, my nephew, is a great kid. He is fun, funny, social and loving. He has his moments of meltdowns, but he's a kid. Maybe they are a bit more severe because of the A word. (btw...when you see a kid having a screaming fit in public, don't just assume they are some kind of a brat. Sometimes it is something so out of their control you would not believe and the parents can't possibly be equipped to control as well.)

He is what I'm assuming clinical folks would call "high functioning". That has more to do with his mother than anything else, I imagine. She was smart enough to figure out the signs early - and she was his biggest advocate and champion.

She lobbied the state (NY) for services - and at no cost, other than her time and temporary hold on her career to do this. Getting these services can be a full-time job on their own. But Max had in-home treatment at least five days per week and six hours per day. One-on-one care with a behavioral, speech and occupational therapists. Unthinkable when you really think about it. No school in the world gives you that much attention.

But I do believe due to that it has made him much more mainstream. I know there are groups out there who do not believe in mainstreaming their Autistic kids, but I cannot see how this is doing them a service in the long run. It's hard to say - since I'm not a parent, and not a parent of a special needs child.

There is no good explanation on what causes Autism. Too much heavy metals in the blood system? Immunization? Genetics? All good thoughts, but no one agreeing on this. Which does not help the cause of these advocates trying to find cures.

It simply amazes me that insurance and social programs (local, state and federal) are so slow to respond to the needs of these kids, these families - if they respond at all. Treatment is so frickin' expensive in the best of circumstances and the families I see with multiple children in this situation is horrific.

And by 'treatment' I mean therapy. There is no treatment or cure. Not yet.

I have talked with some neurosurgeons on this. There is preliminary development of using Deep Brain Stimulation for some cases - the way they are currently doing for Parkinson's Disease and doing trails for OCD, Chronic Pain, Depression and Addiction. Different parts of the brain have certain responding mechanisms. So there is hope, but this is not a cure either - just a treatment. And probably a decade away.

It'd be nice if people would lobby their local and state leaders. The parents of autistic kids can't do it all. They don't have time. How could they. And let's face it - Jenny McCarthy can't do everything for these kids.

Song by: Delerium featuring Sarah McLachlan


rebecca said...

I still don't see what this has to do with Marisa.

And you're right -- Max is a great kid, and your sister is amazing.

Blobby said...

Ummmmm....because everything has something to do w/Marisa. Pay attention. She'd be the first to tell you! Sheeesh.