Susan's Blog

Sunday, January 7, 2007

The Re.F.U.S.E and F.O.R.C.E Protocols

There are many autism approaches under this sun of ours, but they often boil down to basically the same thing: focused interactions with positive rewards. I know this will probably offend the rigid ABA-ists or RDI-followers who read this, and I apologize to them, but this is what I believe. Educating Nat succesfully is all about connecting but is also about familiarity and repetition, and reward (which can be praise, candy, or just letting him go do his own thing after completion). It is no secret that I use bastardized ABA , or Floortime-infused ABA, if you must call it something traditional, teach him many skills. Of all the approaches, strategies, therapies, etc., out there that I have researched or tried (and I have been doing this for 14 years so I have looked into many), this approach, of repetition, breaking a task down into doable steps, and positive reinforcement only, has been the most beneficial for Nat. I don’t live by it, or preach it, because even Floortime-infused ABA has its limitations and flaws. ABA’s origins are pretty dicey, trained dogs, punishment, fudged data, kids who were dropped from the final results, etc. You shouldn’t know from it, as my grandmothers would have said. And Floortime/RDI can be too annoying for Nat; he doesn’t respond well to overly silly attempts to get his attention, which can make him more mischievous or determined to wipe that smile off your face (or that funny hat off your head). Not that there’s anything wrong with it.

No, I don’t believe that any one approach out there will successfully educate a complex human being such as Nat. Education and learning is a shifting and evolving thing, that must be adjusted as a person grows and understands more of the world around him, and as his needs change. That being said, the general ABA style, of positive reinforcements and small steps, is one approach with which Nat is most comfortable, because he knows it so well. He has also benefited from Floortime-ish or RDI-type interactions, which are really just about playful parenting, building connection. But no one approach “works” with Nat, who is a teenager and has his good days and difficult days, and who gets wise to me whenever I try a new relational strategy. He is most comfortable learning with the ABA prompt- do it – reward protocol; he has been exposed to this method for so long that he is an expert at it! Once he gets what it is you are looking for from him, he will perform the task. For Nat it is about understanding what you want him to learn, more than the task itself. (This is why he does terribly in I.Q. tests because he is usually being asked to do something or reason something out that he’s only rarely been exposed to if at all, and so he does not understand what is being asked of him in terms of the test itself, even if he truly knows the material. So frustrating. I hate I.Q. tests, don’t speak to me of them.)

I’ve been running two ABA-ish programs with Nat for the last six weeks, as steps towards independent living: initiating, and first aid. I have had great progress with the first aid program. We are supposed to show him a cut and say, “Nat, I have a cut!” and he is supposed to go find the first aid kit and take care of it. They taught him this at school, with Nat using latex gloves, cleaning the cut, and bandaging it (they draw a cut with red pen, but sometimes they have real ones).

So the first time I did this at home, I began by showing him my cut, and what did Sweet Guy do? He kissed it. I guess the protocol is different when it’s a loved one who is cut. I’d say he got 100% with that one!

The initiating program we have been running is far more complex. This is kind of a psych-out game, I find. Here I’m supposed to stand within 5 feet of Nat when I know he wants something, not make eye contact, so that he will realize on his own that he has to come to me and ask for whatever it is. It is so ironic to me that I am not supposed to make eye contact, that Holy Grail of autism education! That is because Nat has already progressed pretty far in this way, in that he waits for eye contact (expectant look, it is called in ABA) before he asks for anything. But we are trying to get him to come to us, to not depend on our glance! So this is difficult for him to learn or perhaps it is that he does not enjoy deciding for himself? I don’t know.

So when he paces around and comes into the kitchen area, I nonchalantly stand up and walk closer to him, looking everywhere but at him. Yesterday he did it; he must have been really hungry! Today he saw me, but walked away quickly. This could go on for a long time, because this guy would rather pace undisturbed but hungry then have to ask me for something!!! But I think our failure here is because he still does not quite grasp that all is within his control here, that, ironically, what I want from him is for him to tell me what he wants from me!

Our team meeting is Tuesday and I will present this data, such as it is, to them. I am not sure what to conclude vis a vis being able to teach him things on my own. I know that I can; but I am not nearly as organized or focused as a professional would be. I still feel that we need someone who is not Nat’s parents to come in a few hours a week and work consistently on several of these kind of programs to teach him independent living skills. Things get all sloppy and confusing for Nat when we suddenly switch to running programs with him (as in the delightful kissed wound or the elusive retreat from initiating).

But more and more, I feel that Nat is improving in terms of communicating and joining in with the world. This is because he is becoming more comfortable in this crazy world of ours due to development and understanding and exposure. For Nat it is about Repeated Familiarity and Universally Sweet Encouragement, (ReFUSE) and and Fearless Openhearted Repetitive and Caring Exposure (FORCE), more than anything else. All he needs is to become familiar with something, anything, almost, and he will eventually do it and like it. This is what happened with reading him books, when he was a tiny boy (remember the Corduroy story, chapter 1?) taking him to parties and holiday gatherings, with teaching him swimming, with taking him to movies, and now with playing on a basketball team. He is better and better at listening and responding to the others on his team; yesterday Phil passed him the ball and he caught it. He also took a shot and made a basket. Last year was much worse.

And so, I have come to see that of all the approaches out there, ReFUSE and FORCE are my number one autism strategies. Ned and I invented them, and I’m sure many of you are already using them in your own adaptations. That is the cool thing about ReFUSE and FORCE. You can adapt them to fit your own lifestyle and no one feels like an idiot using them! They costs nothing, there is only one book to buy. (Just kidding!)

It is not always possible for me to follow through, but Nat seems to thrive with them. ReFUSE and FORCE are my favorite approaches, not to be confused with “refuse” and “force.” There is no “forcing” in FORCE, and no “refusal” in ReFUSE. They must be practiced with a real smile, hidden sweat, eyes on the kid, employing your spine, your muscles, your heart, and your metaphorical cojones.


Just a note from an RDI follower who was not offended, but who wants to clarify: RDI and Floortime are not the same thing. (Maybe you’re confusing RDI with DIR?) RDI is not about playing silly games. In fact, lots of parents “do” RDI using activities like household chores, yard work, and grocery shopping.

— added by Anonymous on Sunday, January 7, 2007 at 11:04 am

I agree with this approach, mainly because it is adaptive; children are first and foremost people.

If you are going to use outside therapists it may be good to leave a video camera running in the background on a regular basis. It will help them and you get on to the same page. Some of the therapists I have met treat a video almost like a football team treats a game tape, they look for what worked and why. It is difficult to capture a great deal when working at home but even short clips or the sound track when everyone moves off camera can be helpful.

I thought Nat’s response to your cut was wonderful. He deserves a 100% mark.

— added by Anonymous on Sunday, January 7, 2007 at 12:53 pm

I’m glad that you are confident to adapt to Nat’s needs. I know all too well about the muddle and my own amateur approach. Here again we have to disregard the labels and terminology and forge our own way [with lots of help from the experts]

— added by Anonymous on Sunday, January 7, 2007 at 3:03 pm

i’m glad that you’re finding teaching styles and strategies that are working for your sweet guy. the kissing of the boo boo, that is so dear!

and yes, RDI and floortime are two very different things AND RDI is MUCH much more than simply being silly. but the point here is that you are the best judge for finding what works for your own wonderfully, unique child.

— added by kyra on Sunday, January 7, 2007 at 9:29 pm

I hope you all understand that I was being a little silly here. I know that RDI, ABA, and Floortime are all different and have a lot behind them, take dedication and hard work to make them succeed.

— added by Susan Senator on Sunday, January 7, 2007 at 9:33 pm

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