This is Ben. He is 3 and 3 quarter years old. He is a big brother. He loves cars and trucks. He enjoys music and singing (lately, the Beatles.) And he has an autism spectrum disorder.
Okay, so that's how I originally was going to start this post. But, seriously. Over-the-top dramatic is just not my thing. I mean, hey, I can *do* dramatic, but then that's all it is--drama--not the real thing. And Ben is absolutely the real thing. He's not dying of malaria and in need of your help. (Just pennies a day can feed his whole village!) He's not pathetic nor requiring your sympathy. He's just a guy with some incomplete, wayward neural pathways. You might call it 'neurologically atypical'.
What used to be just "autism" is now ASD. The spectrum refers to the wide and varied ways the Big A can effect a person. Some people with ASD have no verbal language, others talk non-stop. Some are "locked in their own world" while others are very social. Whatever "symptom" you can describe in one person, can be demonstrated with the opposite in another. With such variance you might think that Autism is just a throw-away category for what would otherwise be called "quirky" or "delayed" or "we don't have a name for that, let's check this box". And yet. Once you have a little bit of experience with someone with this diagnosis, you can recognize it and call it out in another almost immediately.
As a teacher I never could quite put my finger on what it was that made it so clear when a child walked in the room that they were, without a doubt, On the Spectrum. Whatever it was, I couldn't just claim it as my "special gift" for long-range, armchair dignosis, as others in my field (early childhood intervention we're talking here, so teachers, therapists, social workers, etc.) could see it, too. It's how "On the Spectrum" came to be (at least, how it did in my world). It was a description of the indescribable. A label for the unlabelable (not a word, I'm sure, but you know what I mean). "On the Spectrum" was a way to categorize a collection of symptoms or behaviors that were not necessarily always present, nor did they look exactly the same from one person to the next. It wasn't and isn't a catch-all, though. There are definite "traits" or similarities among behaviors that are a clear indicator that something, some things, are *missing*.
And that, right there, is the crux of Autism Spectrum Disorder.
The "what's missing" is what I know now as the "core deficits" of Autism, as defined by Dr. Steven Gutstein, the founder of Relationship Development Intervention or
RDI. The deficits are the same for people across the spectrum, even if their "symptoms" look completely different. Rigid thinking, aversion to change, inability to understand other's perspectives, failure to empathize, and absolute, "black and white thinking" are the things I couldn't put my finger on. It's not that I didn't know students that were lacking in these areas, I did. I never put them all together and realized these were issues for *all* of the kids with autism I knew. As I said before, they don't look the same from one person to the next--one person's shy, withdrawn behavior is another's aggressive lashing out is another's echolaic language and repetitive play...
The problem with school and special education school, especially, is that so much time is spent on BEHAVIOR. Managing, controlling, planning, shaping, and correcting. Whatever
B.F. Skinner may say, people are made up of more good stuff than just how they respond to stimulus 'x'. The important part of what's
behind the behavior, or what causes it gets glossed over in favor of the more pressing issue of MAKING IT STOP or making it happen RIGHT NOW BECAUSE I SAID SO. Skinner's operant conditioning experiments with rats, levers and pellets of food never sat well with me as being appropriately applied to human beings. People are just way more complex than that.
My distrust of Behaviorism (technically, Radical Behaviorism) did not bode well for finding early intervention services for Ben. I simply refused to hand him over to therapists or teachers who would "reward" his developmental gains with skittles and stickers, or expose him to continuous loops of
"good job!" And preschool? Let's just say being on the other side of the desk, per se, has given me a whole new perspective on how I feel about small children with social deficits being thrown into a large group of peers to "learn social skills". It's far more important to me that Ben learn about relationships with the people he already has a connection with, people who accept and love him--his family. He has plenty of time to learn how to develop relationships with strangers and frankly, I don't believe you can do the latter well without the framework and foundation of the former.
Enter
RDI. A brief stroll through the website was like a breath of fresh air. The "program" is family-based. The principles are squarely based on current brain research and the goal is not for children to learn to adapt, to learn "skills" for survival in a world that is forever changing the rules on them, but for REMEDIATION. That's right. Going back and "doing over" what was missed in the first go-around in development. But the best part is 'how' this is done. It's not with skills and drills, artificial "reinforcements", or within an unfamiliar environment (which then, has to be transferred to other settings or "generalized").
RDI takes place in our home and is facilitated by US (Mark and I). The developmental goals we have for Ben will be fulfilled within our daily routines. You can't get a more natural setting than our home, nor does "rapport" need to be established as we are already The Most Important People in his little life. There is an entire Operating System in place chock full of information in multiple media forms--print, video, podcasts, online community, scheduled chats with Dr. Gutstein himself, webinars (that's an electronic seminar), access to the thousands of goals and objectives that make up the developmental steps for filling in those core deficits... And that's just the beginning. Our consultant, April, provides ongoing support and guidance, as well as performing Ben's initial evaluation/assessment.
The focus on
attachment and connection in
RDI speaks to my core. The control freak in me is also very pleased to be "in charge". God bless the Internet for offering the opportunities of this program to whomever has access.
RDI was not widely available just ten years ago and mere serendipity brought it into my sightline. Building new neural pathways is a challenge we are looking forward to. We're excited and optimistic for positive changes in our Ben. We'll begin in earnest after Ben's initial evaluation/assessment at the end of March.
This post is a lengthy one and I thank you for reading along.
As we're perched on the cusp of this new journey, documentation seemed in order. I'll keep you posted.
We may have to build him a bird house.
