Thursday, June 27, 2013

Spotlight is on...RDI Part 4

Part one click here

Part two click here

Part three click here

Continuing the series on RDI from a Dads perspective...

One of the distinct differences between RDI and the other traditional ASD therapies is the concept of relationship over task. Traditional ABA (Applied Behavior Analysis) is known primarily as behavioral therapy. You change the behavior of an ASD child through tasks, skill development, etc. There is no real, strong attempt at focusing on a relationship. Remember Gabriel’s goal on saying hi to people? On the surface, it appears as if Gabriel is learning to interact with people. But what’s really happening is that he’s just learning a skill that CANNOT be generalized across all social mediums.

In RDI, one of the foundational principles is the focus on the relationship (or connection with the person acting as a the guide or therapist) in the context of a task or activity. If you stop and think about it, it sounds so simple: the common denominator for any child on the spectrum is social impairment. Rooted in this social impairment is the inability to understand social relationships, the social nuances, non-verbal cues, etc., etc., etc. If it sounds so simple, why aren’t other behavioral therapies working towards this?

I don’t know. Part of the reason may be due to the fact that therapies like ABA have a long, quantifiable, data-driven history...but from what I’ve read, success is spotty.

But how does one emphasize the relationship over the task in the context of an activity? In a word: spotlighting.

Huh? (That’s what I said when I started learning about it...)

Behavioral therapies strive to help a social impaired ASD child through discrete skill development. Once again, therein lies the problem: you cannot remediate some with ASD through the tasks or discrete skills. Think of all the skills an ASD child requires to simply navigate through an hour of lunch!

In RDI, parents (or therapists) are encouraged to come up with activities that emphasize cooperation, joint attention, and referencing (instinctive glancing at the other person to let him/her know that you’re there, and you’re paying attention). Throughout the activity, we’re equally encouraged (if not more so) to let the child know how much we’re enjoying doing the activity with him/her, how much fun it is, how cool it is to always do things together, etc. In other words, the activity or task takes a backseat to the relationship itself. In fact, it really doesn’t matter what the activity is. The spotlight is on the relationship...not the task or activity. When the guide (or therapist) is verbally emphasizes the enjoyment of the relationship, in RDI parlance, this is known as spotlighting. Simply saying “Good job” after a joint activity places the focus on the task and the skill developed through the task. Rather, the guides are encouraged to say, “I had so much fun with you!” or “I love doing (insert the name of the activity) together as a team!” puts the focus on the relationship and strengthens the connection an ASD child will have with the person rather than the skill.

The issue Edie and I have with a lot of the traditional behavioral therapy is the focus on the skill. Or discrete skill, to be exact. Coming up with novel activities complete with new toys becomes more important than relationship with the child him/herself. Logically think about this: an ASD child is already having struggles understanding and navigating through all the social nuances in this a purely skill-based behavioral therapy going to address this child’s core deficits? Will a purely skill-based behavioral therapy enable the child to develop meaningful friendships?

Is there a place for skill-based behavioral therapy? I hesitantly say yes, but I think the vast majority (like 95%+) of the child’s remediation lies in RDI...the development of certain skills can develop in an RDI context. Edie likes to remind that even though it feels like we wasted 3 ½ years of the boys lives with the discrete skill-based behavioral therapy, some good did come out of it. RDI has just proven itself to be more effective and is potentially putting the boys on the path to full remediation.

Why Isn’t Everyone Doing RDI?

So, if RDI has proven itself to be so effective, why isn’t everyone doing it? I won’t get into all the political reasons, the controversies that I’ve read, the anti-RDI stances some ABA people have, etc., etc., etc. My comments here are purely from a parental perspective.

Note that this section of this entry is filled with nothing but Bun’s opinions and unsubstantiated theories based on my 4+ year ASD journey and observations. They don’t reflect anyone else’s opinions or biases in the RDI community.

1. Parents haven’t heard of RDI - the standard answer for therapy is ABA or another form of behavioral therapy. It’s what’s out there. It has history. It’s what health care providers give you.

2. It can be cost-prohibitive - if you haven’t heard of our financial ASD history...well, don’t ask! (j/k!) ASD is EXPENSIVE. After a financially tapped-out family kinda-sorta discovers RDI but discover that their medical insurance probably won’t cover it, it’s just too overwhelming to have to pony up another couple of thousands of dollars here and there. On top of that, each RDI coach charges a little differently, so the costs can vary. Either way, the bill can be pretty high, and again, for a family that’s more than likely struggling financially after being hit with all their therapy bills, why add something else on?

3. Parents think that ABA or their current services are enough - I’m probably going to catch a lot of flak for this one. First off, I’m grateful to be married to a woman who completely sells out for her kids and her family. I knew something was wrong, and I thought I was seeing some improvement, but when Edie said that our boys were becoming more autistic with their ABA therapy, I had a hard time believing her opinion. It wasn’t until I read how RDI (Gutstein, really) redefined ASD that I realized that, no...our services weren’t enough. In fact, they were troubling.

4. Parents have to put in the bulk of the work - look, ASD parents are beaten down. Emotionally, financially, physically, mentally wiped out. The emotional support for an ASD family is generally pretty thin. Few people get us, and we’re generally too prideful to ask for help and explain our situation (especially us Asian folk, like myself!). We’re trying to maintain our marriages, keep our houses reasonably clean, put food on the table, advocate for our kids at church, fight the medical system, fight the school system, fight the therapy agency, balance the family budgets, stay out of debt, work hard so we’re not getting our butts fired from taking time off to take care of the kids...and NOW you’re telling me that Mommy and the Daddy are the primary therapists (or guides) and need to do the bulk of the “therapy work”? I’m sorry, but “HELL TO THE NO!!!” (Yes, that was my initial reaction.) But as I thought about it, yes...Mommy and Daddy SHOULD be the ones doing the therapy. Why? Which two people should a child trust, build a connection with, and feel safe and secure around FIRST?

5. You need a good RDI coach - just like any professional relationship, the authority figure you decide to submit to needs to be a good, knowledgeable leader who is looking out for your family’s (kids and otherwise) best interest. We are grateful to have a good RDI coach who’s been down this road before and provides both RDI and life coaching (through the Scriptures!!). She knows how to spot things, correct things, provide good coaching, bluntly tell us when things are good (or bad), encourage us, and just do life with us. I’m not going to even get into what a bad coach might do.

There are probably a few other reasons which I might document later, but these are the first five that are on my list...

Next post...the milestones that caught my attention and convinced me that something was going on.

Proverbs 16:3, 1 Peter 2:24, Isaiah 53:5

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