Saturday, August 19, 2006

Renegade RDI

Over the past year I've spent a great deal of time, here and elsewhere, celebrating Steve Gutstein's autism intervention program, RDI (Relationship Development Intervention.) The philosophy behind RDI makes intuitive sense to me, and the work that I've done with it seems to have made a tremendous difference for Bud.

But over the past several weeks my enthusiasm for RDI has been dampened. Early this month, Gutstein unveiled "RDI 3.0," a new "operating system" that promises to revolutionize the RDI program, streamlining it, making it more easily understood and easier for parents to implement. The catch? It will be available only to certified consultants, who can then dole it out in small portions to their paying customers.

When I've read criticisms of the RDI program, they have rarely had to do with the RDI philosophy and often with the RDI business. The full RDI "protocol" as outlined by Gutstein's Connections Center, which includes a four-day parent workshop, an intensive initial assessment, and ongoing work with a certified RDI consultant, is expensive. For many (most?) parents, it is prohibitively expensive. However, I have stayed buoyed and positive throughout the past year because it seemed to me that Gutstein had built in provisions for parents who were not able to afford the full protocol. As one of those parents I have, for the past year, pieced together a "make your own RDI" program. I attended the two-day introductory workshop, purchased the 5-hour RDI DVD, read Solving the Relationship Puzzle, lurked on a listserv for parents and consultants, participated in free chats with Gutstein and his wife and RDI partner Rachelle Sheely, purchased the official RDI tracking sheets, and purchased a book of RDI activities called Relationship Development Intervention with Young Children. This was a significant financial investment for my family, but it represented a fraction of the cost of the full RDI protocol.

And it seemed to be working. I watched Bud's progression and compared it to what I saw described on the tracking sheets; to my amazement, the activities I was doing with Bud - the way I was approaching my parenting - was producing exactly the sort of development that RDI told me I should expect to see. So I was excited to hear that the new, improved and more easily understood Operating System 3.0 was going to be unveiled. I watched the listserv faithfully for reports from the conference. I began to read exciting scraps of information about the new system, and then began following a discussion thread about the high cost of RDI, the limiting of information on 3.0 to consultants, and the exclusion of those who are unable to pay high consulting fees.

That's when I got discouraged. I read comments that suggested things like: The only people who are really doing RDI are those who are working with consultants. Those working without consultants are probably doing it wrong. They may believe they are seeing results, but they are probably not. They don't know what to look for, so they are seeing what they want to see. In fact, they may actually be doing more harm than good.

The unwritten tacit subtext that I walked away with was this: Are you really saying that your child is not worth the money?

Again, nobody actually said it. It was probably my own guilty feelings that filled in the empty space. And the comments on the listserv were not made by Gutstein or Sheely - they were made by parents or consultants (the latter of whom clearly have an interest in limiting access and maintaining the status quo.)

Here's the thing. RDI is expensive. If I thought that working with a consultant and paying the extraordinarily high cost would make a significant difference in my ability to implement the RDI philosophy, I would try to find a way to do it. I'm not sure what we would do - refinance the house? max out the credit cards? But, without knowing whether or not working with a consultant would really make a significant difference in the effectiveness of the work I'm already doing, it's hard to think about putting my family in that kind of financial peril.

I'd love to have an opportunity to work short-term with a consultant to try to get a sense of how far off I am in the work I'm already doing - Is Bud really making the kind of progress I think he's making? Am I doing more harm than good? I mean, before I hire someone else to make my chocolate chip cookies, I want to know if she's going to tell me that I've been trying to make chocolate chip cookies with molasses and cinnamon, or if she's just going to suggest that I add a pinch more salt.

But that's not how the two consultants within driving distance of my house work. I had started down the path in working with one, but pulled out when my sixth-mommy-sense said "this is not the right person for us." The fact was, before she had even spent a moment in Bud's presence, before I had any indication of her style, her talent, or her ability to connect with Bud, I was expected to sign a contract hiring her for the "RDA" assessment and three months of contract service; in effect, I would be agreeing to pay several thousand dollars to a stranger, without any sense of how much difference this person would actually make to my son.

So I'm discouraged. But, really, I still love RDI. I love that it's designed to help Bud become a more flexible thinker, a broadband communicator who can "read" a situation by taking in and making sense of several streams of information simultaneously. And I really do think that the work I'm doing without a consultant is making a difference.

Last night my husband was upstairs listening to music and I wanted to let him know that supper was ready. I stood at the bottom of the stairs and shouted his name. He didn't answer. I shouted his name again.

From the next room I heard Bud shout to me, "He can't hear you!"

I walked into the room where Bud was. "I think you're right, Bud. Poor Daddy. He doesn't know that supper is ready."

"I can go talk it him," Bud said.

No big deal, right? Wrong. That brief 20-second interaction involved Bud attending to, interpreting and responding to an extraordinary amount of information. In rapid succession, and often simultaneously, Bud had to think:

Mom is shouting Dad's name because she wants to tell him that supper is ready.
Dad is not answering her because he can't hear her.
Mom is still shouting Dad's name because she doesn't know that he can't hear her.
Mom's plan is not working.
I know this, and Mom does not.
This information would be helpful to Mom.

I would like to be helpful to Mom.
I will give Mom this information.
Dad still doesn't know that supper is ready.
If Dad doesn't know that supper is ready, he won't come downstairs to eat.
Dad will be sad if he doesn't get to eat supper.
Mom doesn't want Dad to be sad.
Mom wants Dad to be happy.
I want Dad to be happy.

Eating supper will make Dad happy.
If Dad knows that supper is ready, he will come downstairs to eat.
Mom does not have another plan for letting Dad know that supper is ready.
Going upstairs and telling Dad that his supper is ready is another plan.
I could go upstairs and tell Dad that supper is ready.

I could be helpful to Mom and Dad.
That would make Mom and Dad happy.
I would like Mom and Dad to be happy.
Mom doesn't know that I have come up with another plan in which I can be helpful and make them happy.
I will tell her.

Flexible thinking. Intersubjectivity. Social coordination. Dynamic intelligence. Regulation and repair. Relational information processing. Broadband communication.

This may not technically be RDI we're doing, but I have to think that whatever it is, it's a very good thing.


Steve said...

This interaction IS a VERY good thing, one that should never be diminished by "the professionals".
Keep going, it's working.

n. said...

i was lately thinking a lot about how people get poor trying to help their kids and i think there should be more people teaching parents how to teach their own kids communication and life skills. this must be possible, at least for all but single parents working long hours.

my mother is a teacher for the deaf / special ed, and she can teach a parent to do speech therapy with their kid, so that she never actually gets paid to do the therapy herself, she can just teach them to do it and they do it. well, i hope they do it. but anyway, that's their business.

I think this should be a service that the autism-acceptance movement should be providing, and i am pleased to see that you figured out how to do the method that works for your kid, without caving in to anyone's whole advertising spiel... Now what if people could share the methods they learn in a sort of P2P (parent to parent?) network, so that one person can learn one way, another learn another, and both share the things they learned so that then both learn both methods. Say you were new to this... There would be more possibility to hit on something that worked for your kid, if you didn't have to pay for learning all the different methods.

is this crazy, unethical, or a pretty good idea?

Jannalou said...

The high cost thing is one of those things that is also a problem with ABA. Well, with pretty much everything out there these days.

I have the skills, if I had the time and the resources, I'd teach parents for free. Do free seminars and workshops and whatnot, group sessions and 1:1 sessions, train in-home therapists, train the parents, whatever.

For free.

I just don't have the time right now. I work "35 hour weeks" (which are often more like 40 hour weeks) at my day job and usually about 4 hours on the weekend with kids.

I need to get my web site sorted... then I can at least provide free information to parents...!

Anonymous said...

current western society has brainwashed its citizens in thinking that they're not able to do anything themselves; they have to be taught by others, have to pay professionals, can't cure themselves, and anything they believe isn't true or valid unless it's confirmed by a "professional."

your story reminded me or when i started making homemade cat food for my cat. doing research on the best ingredients, i came across people that said anyone who would make their own pet's food is stupid, irresponsible, and obviously no one possesses the ability to make food for a pet.

these people honestly believed this. in the meantime, my cat's health was improving, coat getting glossy, and energy kept improving. on the food i'd made for him.

the word "professional" should be taken with a grain of salt. yes, those taught, who've studied, embraced the meta-ness of a concept, they frequently do tend to know many things that an "amateur" won't know. but an amateur, every so often, though not usually, can know as much as a "professional." and professionals should be wary of telling the very people they're trying to help that they're stupid, incompetent. it's one of the most damaging and fallacious things anyone can do to someone who is trying to get help.

-longwinded comment from a new reader

Mamaroo said...

Reading both yours and Kyra's blogs have gotten me really thinking how "I" CAN learn and DO RDI with Roo and won't have to spend thousands and thousands of dollars to do it. I am still thinking I CAN. I am still planning on trying without a consultant.

"Do more harm"...I don't think so! What you are doing with Bud is wonderful! Keep up the great work, MOM!!!

Daisy said...

Keep on truckin', Mom! You know your child. You recognize progress and know how to encourage it. And yes, you know Bud best!

kristina said...

This is why we parents need to be teachers and therapists ourselves, and why it behooves us to be educated. We get what we pay for----what we put in of ourselves for----what we discern our kids truly need.

Anonymous said...

I'll join those advocating that you keep doing what you're doing. I've been doing RDI-type things for years, have attended the two day seminar, bought the books, etc. I think many parents can do this on their own.

When I saw Guttstein, someone asked him about the controls that were on the program, including the often heard approach that if it wasn't done by a professional, it wasn't RDI. His response was that the controls were needed to support studies and research. He, interestingly, didn't say that professionals were required to assemble a program that would help specific individuals.

AshleyLeo said...

Good for you MOMNOS! You rock!
It's been my experience that significant progress is made when parents can be their child's best therapist including carryover at home.

If only parents would follow their intuition and believe in themselves, and have the time. (as anon pointed out, we are trained otherwise)

RDI-NOS is obviously the best program for Bud at this time. Your description, as always, of the dinner example is outstanding. I'll have to add this string to my site as an example of Theory Of Mind (or Primacy Of Minds per Gutstein). I'm always asked about good examples!

Anonymous said...

Catching up on reading on a rainy day...
1) RDI - trust your gut, and the feedback of others you trust - change is occuring, and it's all good. :)
2) That 1st grade teacher is a "sister" of mine too - my gut told me it was going to be a good fit. I've been keeping tabs from afar, as it should be, and it all makes me very happy.
3) Guess I'll have to accelerate my research into RDI training...hmmm. Is "Steve" Steve G.?

MothersVox said...

The move toward limiting access to working therapies -- creating a cabal of approved "professional" providers -- is disturbing, but not surprising. It's all part of the intellectual property, "branding" and trademarking movement that limits access to resources that need to be held in common.

But property theory aside, it sounds to me as though you're doing an amazing job with Bud, and just keep going. Don't put your family in financial peril to get the "help" of professionals who are likely to be less thoughtful about RDI and Bud than you are! You're amazing. Keep it up.

I always like to remember that Clara Clairborne Park and Jessy Park had their successes becauses Clara spurned conventional wisdom and didn't institutionalize Jessy. (Ellie was the fictionalized name in Park's first book.) I'm not saying one should never trust a professional . . . but most I've met are pretty overrated.

Alana said...

That interaction. AMAZING. I can't imagine you needing an RDI have teaching (RDI, ABA, PRT, whatever you want to name it, but "teaching") in your MOM-NOS DNA. Bud's progress amazes me. Sadly your feelings of RDI mirror what myself and some of my colleagues have been feeling ("it's amazing philisophically, but I simply can't afford to pay to go through the certification process...RDI is a great, but the business-side of it bothers me a little"...these are actual assesments I have gotten from very talented therapists that I've worked with). I realize more and more that it is less about the "brand" and more about the intuition...intuition and instincts that you have and use with Bud. You are an amzing mom, Mom-NOS!!

Kaethe said...

You're doing great. The most cursory glance at this stuff has shown that it is excellant advice for all parents, and unlikely to harm anyone. The point about studies and rigor is well taken, but shouldn't concern you.

Anonymous said...

you are doing a WONDERFUL job with bud, mom-nos! the proof is in the pudding! i wouldn't doubt yourself for one minute. you know what you know and see and hear what you see and hear. and then WE get to 'see' it too!

i would just keep doing what you're doing. the tracking sheets have served RDI families for years now, why would they stop being accurate and effective now? trust your gut, your heart, your mind, and your eyes!!!

as someone who read and posted to the listserv, i will say that i only read one person's comment saying those doing RDI without a consultan were probably doing it wrong. i might have missed others? i read more posts lamenting the high cost of RDI and while i don't think it's cheap, i compare it to the cost of other therapies and it comes out ahead since i am paying someone $400 a month to teach me how to 'be' RDI all day, every day. how much is ABA? and that is done only by ABA professionals. what about OT and SIT and speech? and that's by the HOUR. RDI-ers don't tout themselves as the experts when it comes to your child. at least, not in my view. i have felt and been incredibly empowered as a parent in what i've learned through RDI. i'm the one implementing this program, not some 'professional' who i hire to come into my house x hours a week. it's me and my husband at home with our son.

my only issue with what i've heard about the new system is whether it will prevent families from having access if they don't have a consultant. i hope it doesn't. i don't have the final answer on that. we'll have to wait and see what january 2007 will bring. dr. g's not a god. yes, he is trying to run a business, yes. it's true. but he also spends hours of his time each week for free, making himself available to families, to answer questions, to provide information, to modify his program based on family feedback, to create an intervention that may be the only thing that is changing the ASD brain , creating pathways that may lead to more autonomy and choice. he's set the bar higher than anyone else in the field for these kids and for the families of these kids. i, for one, am floored by that.

hang onto those tracking sheets. keep at stage 5! you're in LEVEL 2 now!! keep reading the listserv! and why not write dr. g. yourself? he needs to hear from families like yours! far from being a guy who doesn't like dissagreement, he thrives on hearing what isn't working, what doesn't feel right, and what parents need and want.

AshleyLeo said...

I agree, it's always about the person(s) rather than the brand. The one that designs and implements... If you have a Porche convertible but don't know how to drive, well, you aint getting nowhere! ha ha, I just made myself laugh. So, I guess you are a Porche AND a race car driver, nos!

Anonymous said...

I agree with ALL the other smart, intuitive parents on here that recognize the beauty of RDI concepts, but think the business model is ridiculous. YOu are RIGHT.

We spent $2000 and $1500 travel expenses to go to a 4-day training. I had already purchased an RDI book called "Relationship Development Intervention for Young Children" that was written by Dr. Gutstein and Dr. Sheely, and we were implementing this at home on our own for months with great progress. Anyhow, the 4-day was a joke. I cannot say enough about how frustrating it was and the poor quality of it. I was asked to send in a video beforehand also, of doing activities with our child. When the consultant critiqued it at the conference, she had NOTHING for us to improve on. Basically, we were doing great on our own. Instead of empowering us at the conference with objectives, we were told we had guessed it...get them from our consultant when we returned home. They sent us home with starting point. And they didn't even mention or feature the book that THEY wrote and that we were using succesfully at home. I finally wrote Dr. Sheely about this, and here was her response:
Per your recent inquiry, we do not recommend the activity books as they were never published the way we intended. Because of this, parents and professionals have grossly misused them. Doing activities from the book couldn't be further from what RDI Program is, which is why we no longer recommend or refer to them. I'm sorry you are confused by this.

When I wrote her back to challenge this and state that "yes, I was indeed confused, since she is STILL featuring this book that is "not RDI" on her website for sale", she NEVER wrote back again.

Needless to say, there is something VERY wrong with the RDI business model. We got virtually NOTHING for our $2000 except a PowerPoint that they read to us. However, the RDI program content as we use it at home in the books has been very successful. Save your money parents!

We are educated parents, and work with the special education population. I wish we had not wasted our money, but the other parents that mention that you CAN be self empowered and do things on your own are absolutely right. If you are seeing progress, keep doing what you're doing and be proud of yourself!

Shakespeare Rocks You! said...

I'm just starting to investigate RDI from the UK. There aren't too many consultants here anyway so if we go down the RDI path, we going to hve to do it in a similar manner to you. I have to say, the website and the brochure made me very suspicious that Gustein's motives were not entirely benevolent. The 'sales-pitch' language really put me off contacting them. However, as you say, the rationale behind the programme makes a lot of sense so I'm starting to think about running it along a slightly reduced VB programmes that we've been running for six months. My daughter has progressed very well on VB but as Gustein suggests, it really doesn't address those 'core' deficits too well. I don't think your problem regarding consultants is unigue to RDI, though we never had to sign a contract with our consultant. The guy really knows his stff but he doesn't know our daughter, so his assessments and suggestions have varied from spot-on to extremely wide of the mark. We often have wondered if we would be better off working with a few good books and our own instincts as parents and teachers. May I suggest we try to beat the corporate attitude of selling information that could drastically improve our children's life chances by sharing any information gained about the new programme amongst parents in similar situations. Maybe we could lobby Gustein himself. Ask him why, if his system can change so many lives so drastically, why he is not sharing it freely or at least affordably.

Anonymous said...

Such a great discussion...too bad I found it so late. If anyone is still checking it I 'd like to add the perspective of someone who makes a living from consulting RDI.

Not everyone is in it for $$. In fact most of my work is paid for by public funds at a reasonable rate. Therefore the parents do not pay.
I know the $$ issue is difficult..some consultants work with insurance too. RDI consultant training is expensive, so we are also working on making a living.

Be aware: certified RDI consultants are very highly trained, study ASD deeply and are here to help parents to be empowered to help children the best we can. I think you can probably learn many great concepts from the books and video training. I do not doubt that this great Mom has helped her son, but if parents want to go much deeper, a consultant is an essential aid.

FYI I am planning to travel to teach RDI concepts in impoverised areas of the

Anonymous said...

As a professional with many years of experience working with children on the spectrum (including ABA, TEACCH, PECS, Social Skills training, etc.), RDI offers something very special and unique -- and the guidance of the right consultant with background and training to help parents foster their children's development is integral to the program. Many parents can grasp aspects of RDI intuitively, others though really struggle when trying to do it on their own...and when there are wobbles or you do need help, having the consultant there to guide you is what RDI is about in the beginning. Parents do gradually internalise the model and become independent in a good program.

Some parents are naturals! But we all benefit from guidance and the RDI model is all about fostering the natural capacity for parents to link with their children -- parents are the agents of change and those trying to do it all on their own may get it right, or may not be aware of some of what comes with having the guidance of a Consultant.

In order to get RDI funded by health and education services, evidence is needed that RDI as it is meant to be is effective. It is cost-effective in the long run, usually by two years parents don't need a Consultant anymore.

But as a therapist who would love to (and who has often) volunteer all my time, it is important to stress here that we are actually not making more money, we're making less or the same as we would make spending our time in other ways - and if our time were free than good, qualified professional people would not be going into this important work.

The problem is that parents should not be expected to pay for costs of treatment - these costs should be assumed by insurance and education systems. To get there, we need evidence of RDI-effectiveness. To get there, we need good-quality RDI intervention packages that can be evaluated and adopted by Consultants who can guide parents on this important journey.

While the financial cost to families may be high at the moment, it is certainly not making the treatment providers money in the business sense described above...we are all in this because in our hearts we are devoted to making a real difference to the families and children affected by autism. In the short-term it is expensive, in the long-term it is priceless.

Anonymous said...

Try this website to address some of the issues raised here:

Shayna said...

I come back to this post again and again because it is such an inspiration.

Your little boy and mine have the same diagnosis, though mine is much younger. We were recently introduced to RDI at a workshop but could never afford the traditional consultant route.

Your success has inspired us to try doing RDI ourselves at home from the book.

Juliet said...

I know this is an old blog but does anyone still have rdi worksheets? Thanks juliet