Friday, April 13, 2007

Welcome to My World



Imagine being diagnosed with cancer. Now, imagine that once the doctor delivered the diagnosis he turned around and said, "Well, as I see it, there are a bunch of different things we can do to help get you healthy. I'm going to give you a list. Go home, do some research, and then when you decide which treatment you'd like to proceed with, try and find someone who specializes in that treatment. Oh, and your insurance probably won't cover most of it. Oh, and there's a waiting list for most of the good specialists. Good luck!" In essence, this is what parents are told when their children receive a diagnosis of autism. There is no consensus on treatment and there is no real network of providers, except for a few cutting edge programs in the world. Personally, I can't even begin to imagine the confusion and fear that most of the parents face as they begin their journey down the road of autism treatment. I am impressed every day at how dedicated some of these parents are in finding the best care they can for their children.

I rarely speak of my occupation as I am bound by so many ethical constraints. But, as some of you know, I am a case manager for a behavioral consultation firm and I provide home-based educational services for children with Autism Spectrum Disorder (ASD). April is Autism Awareness month and I felt it was time for me to speak a bit about these children that I have come to know and love through my work. Since Autism now affects 1:150 children born, chances are you've heard of Autism or have read reports about Autism or know someone with Autism. I won't go into great detail about the disorder itself other than it primarily affects social, language and play skills in children. What I do want to talk about is the fact that considering the high prevalence rate, diagnosis and treatment are in what is essentially the Stone Ages. While there is no known cause or cure at this time, there are several therapies that have been proven to be effective in reducing some of the symptoms. What is confounding to me, is the difficulty that parents have finding valid information about treatment. I am not exactly sure what has to happen to change this scenario, but I know something needs to happen.

I also know that time is of the essence for treatment. Ideally, children should engage in intensive treatment up until approximately age seven, when the neural connections become less plastic. All of this leads to an epidemic headed for our school systems. Underfunded to begin with, schools struggle to provide appropriate services due to the high cost of intensive services. Families struggle with the high costs as well, as much of the private treatment isn't covered by insurance. The bottom line is that with intensive services delivered in the early learning years, lifetime cost of services decreases exponentially. For now, the system is broken and we all are going to be faced with paying for this epidemic in one way or another.

This is my life's work, my passion and my pleasure. Like any job, there are ups and downs, but on the whole, I couldn't be happier with my job. Really, it's the kids. So many people have the misconceived notion that children with autism are incapable of forming meaningful relationships. While the work to develop a relationship is a little more arduous, the payoff is well worth the effort. Recently, one of the most moving moments I had at work was with one of my little guys who doesn't have much language. He is accustomed to pulling us around to get to an object he desires. While I knew he really enjoyed our play time, he had never really asked for it. I was sitting at the table tabulating some data and I felt this little hand on my shoulder pulling me around. As I turned, he got the biggest grin on his face and yelled, "Tickle me!" Now for some of you, this isn't a profound experience. For me, I knew that this meant so many wonderful things were coming. He had learned that his words got him what he wanted and he had learned that people are fun. To me, that's worth it all.

These kids are a part of me. I understand them even when they can't talk to me. In some ways, I feel like I speak another language. I've learned to catch the most fleeting glance. I've learned the hidden secrets of tantrums. I've learned that sometimes they can't look at me and listen at the same time. Most of all, I've learned that just when you think you've run out of patience, there's always a little more.

11 comments:

Bubs said...

Thank you Ten.

MizBubs was a one-on-one aide for an autistic boy (the child of some friends of ours) in his kindergarten year. It was exhausting work. At the same time, the son of a coworker was found to be autistic. In the case of my coworker, the strain of going from doctor to doctor trying to figure out what was "wrong" with his son nearly wrecked his marriage. No one figured out the kid was autistic until he was like 4 or 5 years old.

Tenacious S said...

I have stacks of stories of people who were told by their pediatrician to just "wait and see." Meanwhile, precious time is slipping away. One on one work is indeed tiring. Hats off to Mizbubs!

Dale said...

It's very important work you do Ten S and and an important problem you highlight.

Phil said...

I second Dales comment.

Tenacious S said...

Thanks guys. It's just my little niche in the world.

Coaster Punchman said...

It always saddens me to hear about these diseases that are not well funded or researched. It is surprising to hear that about autism since 1:150 seems like a pretty high ratio to me.

Nonetheless, this part of your post did make me happy: "This is my life's work, my passion and my pleasure."

Tenacious S said...

CP-I always feel bad when people tell me they don't like their job, because I love mine. There are always crappy bits, but on the whole, I can't imagine doing anything else. I feel very fortunate. As for funding, it has been stepped up now, but we're so far behind that there's still a lot to do.

Beth said...

I didn't know that's what you did, Ten S. Great post. I have friends whose children are autistic or suffer from Asperger's, so I'm glad they have someone like you working for them.

Flannery Alden said...

Thanks for this insight. I've forwarded this post to my pal, Big Orange, who has three children on the autism spectrum. It does my heart good to know there are people like you doing this kind of work. You really are a pioneer.

Big Orange said...

Hey, this IS Big Orange, with three of his children on the Autism spectrum!! Big Orange has been working a helluva lot lately and hasn't commy-ented until just now, but I shall:

Thank you for all the work you do in healing the world.

There's soooo much else I could say, but I'm actually @ a bit o' a loss, and two of the aforementioned three Auties are wrecking the house while I sit here and type.

Thanks again!!

Tenacious S said...

Big Orange-Hang in there. Love to talk to you sometime.