Friday, February 19, 2010

I Don't Get RDI

This is the RDI Book, written by Dr. Steven Gutstein.  He is the founder of Relationship-Development Intervention, or RDI (pretend the registered trademark is beside each mention of RDI).  RDI is a relationship/education type of intervention for autism, similar but in many ways different to DIR/Floortime (insert registered trademark here).  Floortime was incidentally the first intervention we researched.  RDI came next, then ABA.  We contacted a very agreeable RDI consultant out in the Greater Toronto Area who was pretty helpful in lending us the book and the video that introduces RDI.  Unfortunately for us, we never understood it.  Both the book and the video are long on theory and short on practical examples.

From the website rdiconnect.com:
"Families under the guidance of a certified consultant slowly and carefully construct opportunities for their child’s neural growth while adding complexity. Over time, parents create a formidable impact on their child’s ability to form reciprocal friendships, mature emotional relationships, conduct successful collaborations, engage in flexible/adaptive thought and master problem-solving abilities necessary for job attainment and success in the 21st century world."

This sounds fantastic.  But no where in the book or the video, or anywhere I can think of do I see how.  I expected to see a list of activities targeting specific milestones or goals, with the ability to take data, but there is nothing like that available in the literature.  To get more, one must sign up with a consultant (at a cost of $6000 or more) to gain access to the on-line tools and education.

To date, no one who has done RDI can explain it to me without using buzzwords like "guided participation", "guide", "dynamic thought" and other nebulous terms that do not have context.  I remember watching the video and seeing a mother work with her son on anticipating a fun activity (this concept I get), but I had to wonder how she even got her son to sit down and pay attention to her... did this child just know this, or did they skip an RDI step and not show us, or did they do ABA first to get some basic skills before trying RDI?  It's not clear.

When I explained the "lack of practical steps" to the RDI consultant, they explained you can't have steps because every child is different.  Yes, every child is different, but you still need basic steps with variations.  Are we saying we teach every person how to drive a car that much differently?  Not really.  There are variations certainly on what works for younger people, older people, nervous people, people with disabilities, etc., but to say there are "no documented steps" to me translated to "we make it up as we go along".  Teachers in the classroom have lesson plans.  They adapt it yes, but they don't go fly by the seat of their pants.  They have goals and they measure progress.

The promise of RDI is great.  I just don't understand it.  I know many people like it, but I can't justify paying so much money just to understand a therapy.  Can anyone explain it in practical terms?

71 comments:

  1. We are an RDI family. RDI is a "do-over" of the parent/child relationship.

    After 3 yrs, 3 months of ABA, where my daughter was considered a success, she wasn't able to follow/join a kindergarten classroom. When an RDI(r) consultant observed me with her, she was infant like in areas of interaction and reciprocity. We'd dumped lots of skills into her, but she was unable to interact with true reciprocity. I couldn't take her grocery shopping with me. Simple errands were a nightmare. There wasn't an "us" -- she marched to her own beat, and our family revolved around her beat.

    RDI focuses on the parent/child interaction, the "dance" between the two of them. If you, as a parent, are contributing to some learned helplessness in the child, you'll learn to use yourself differently, so the child becomes more responsible for herself. Responsible for her own attention. Attention shifting. Attention sharing. You said you wondered how the mom in the video got her son to pay attention to her and anticipate a fun activity -- well, the answer is the parent spent time using herself in a way that allowed the child to experience the foundations of attention sharing and anticipation first, and built on those.

    Consultants are not flying by the seat of their pants -- they have the experience of intense training combined a thorough understanding of development of joint attention, which encompasses reciprocity, interaction, theory of mind, etc.

    Because YOUR dance with YOUR child is different from any other parent/child dyad, your path of objectives will be unique to you. Customized.

    You'll be able to use yourself to give your daughter the opportunities to experience the building blocks of interaction intrinsically, in concert with you, and grow them, naturally.

    Check out the "autism intervention" label of my blog - www.notnewtoautism.blogspot.com. I blog a lot about my own discoveries along our RDI journey. Read them all, but make sure you find the label "Why I Decided To Homeschool" - I try to explain the importance of the foundations, there. Maybe check out the label "learned helplessness".

    On my blog, please scroll down the list of blogs I follow - there are at least two blogs by RDI consultants or trainees and quite a few by RDI parents.

    Join a yahoo group called Autism Remediation For Our Children and ask questions there.

    The DVD you watched -- it has to be old -- *sigh* - I don't think it's a good representation of what we really *do*.

    A different intervention that has similar roots in developmental psychology is one called "Communicating Partners" by Dr James MacDonald. His ARM (Adult Child Relationship Map) is an outline of the foundations of the development of interaction and reciprocity. (FYI: The system of objectives in RDI is much more intense and specific.)

    Peek at Dr Ross Greene's "ALSUP" (assessment of lagging skills and unsolved problems) - RDI happens to address every one of those on the list, in a developmental fashion, specifically for children with developmental challenges like autism, RAD, etc.

    Good luck in your journey to intervene and advocate for your daughter. Alanna is absolutely precious! I hope I've been helpful in your quest for information.

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  2. Penny said it so well. I will only add that it has worked so incredibly for us. We did it 'informally' for years and 4 months ago got a consultant. Do I think that it is a bit secretive? to a degree yes. But I am a do-it yourselfer. I homeschool, read every book on FT, ABA, diet and bio. In the time that we have started w/a consultant the dynamic of the relationship with my son has been night and day. I totally 'get' where you are coming from but quite honestly, there are NOT specific steps. I write my consult emails quite frequently and she writes back w/ a specific response. She has designed a plan for my child using RDI 'program' as a guide.

    i will tell you the KEY is a consultant that gels well with you and your child..and your whole family if possible. If you don't have that, and if THEY don't get RDI, the you are flushing $$. So if you decide to do it, make sure you go on personal recommendations of consutlants and try and find one that has been around awhile. We travel about 4 hours to our consultant..for initial eval. Then we do most of our visits (currently bi-weekly) via skype. In between those we do videos and emails.

    I was a very hard sell as well on RDI. It wasn't until I talked to a consultant on the phone regarding our son specifically that I went ahead for the initial plunge. and that was 4 years after i started reading about it.

    best of luck and you are welcome to email.

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  3. Hi, I am a mom of two children on the spectrum, and two Neurotypical children, and I am about to complete my certification for RDI as a professional. I have been an RDI Mom for over 4 years.
    Here is my website to hopefully give you abit more background
    http://mysite.verizon.net/vze3ww4z/id8.html
    I would absolutely like to know if my website is helpful because I always want feedback on how I can help people to understand RDI more completely. I also have a program that you can have a trial month, get on the operating system and see it for yourself before you decide if you wanted to go any further. I do this because when I was a parent in your exact position, I wanted to *see* it. I am pretty sure any consultant would do that for you if you asked.
    To address some of your comments and questions.
    The only way I understood RDI when I started was by going on chats, reading books and going to meetings, etc where I would learn more information about RDI. If you wanted to give me your email address I can forward to you a presentation package, which may even be more helpful.
    How to do RDI? RDI is based on a do over ( forgive me if I repeat what the others have said, I willgo back and read the other comments) so how you do RDI is going to depend on your lifestyle. RDI is meant to be incorporated into your family and their habits, interactions, etc. Part of the first step in RDI is to integrate that fact into the program. For example, working on RDI techniques will be integrated into your day when you can slow down abit and create opportunity for discoveries for your child. This is different then a skill based therapy where there is mostly prompting and drilling. What this means is if you are not rushed in the morning, you can incorporate an RDI strategy while you and your daughter brush your teeth. If you are rushed then we pick a different activity and time. RDI, since it is based on typical development, goes back to restore the point and time when typical children can share perspective, etc. This sort of therapy is not a set of written skills. That said, RDI has a comprehensive operating system that covers developmental milestones starting at birth! Your consultant can establish where your child fell off the developmental track and start there.. so that is why it looks different for each child. But like you said, of course any complete program needs steps…and yes RDI has steps, it is very structured in those steps as far as what to look for developmentally. The context and use may differ because of the child, but the objectives are all there for you to see once you are on the system.
    There is no need to do ABA before RDI. RDI will take exactly where your child left off in development. If your child cannot sit still and pay attention, that is where she is developmentally at and that is where you start!
    Please read my website and let me know if you have any other questions!

    Thanks
    Kathy Darrow

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  4. I also just started a blog last week for the very purpose of helping people who struggle with the concepts of RDI!!!
    http://autismremediationforourchildren.blogspot.com/

    Ask as many questions as you want...it will give me material for my blog :)

    Kathy Darrow
    RDI Consultant (IT)

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  5. You have inspired me to add a post to my blog!
    http://autismremediationforourchildren.blogspot.com/2010/02/intersubjectivity.html

    Kathy Darrow- RDI consultant (IT)

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  6. So what are some examples of activities/lessons that you *do* with your child? Thank you all for taking time to explain, but I'm still only seeing theory.

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  7. Becca, we incorporate relationship development into what we do during the day.

    A lot of children on the autism do not feel themselves taking an action. The kind of ABA we did made this worse. (The clip of ABA on this blog at Alanna's 4 month mark is very similar to what we did.) ABA puts children into the position of passive responder to prompts.

    So, let's imagine the RDI(r) Program Certified Consultant sees in the parent/child interaction that the parent does so much for the child that the child doesn't feel herself taking an action. So, an early foundation is feeling self taking an action.

    There's an example in a book about co-regulation (talking about typical development) that describes a baby who is trying to sit up. The mother doesn't take the baby by the hands and jerk the baby into a sitting position. No, in observation after observation, the mother holds the baby's hands or arms in a way that provides enough support for the baby to pull himself upright. The baby experiences the feeling of taking his own action -- and co-regulation. These are important foundations. (And no, gross motor imitation is not a foundation.)

    So, the consultant would sit down with you and talk about opportunities to allow the child to feel herself taking an action. What would the parent have to change in the way she behaves in order to give the child those opportunities?

    Setting the table together. The mom hands the plate to the child, silently offers the plate, waits for the child to notice (attention) and accept the plate, which means she takes her own action to turn her head and shift her attention and notice and move her arm/hand to accept the plate and set it on the table. Same with cup/glass, spoon, fork, napkin.

    Unloading the dishwasher. Mom waits for child to hand her an item and mom puts it away.

    Laundry. Mom hands child item, waits for child to accept it, puts it in a sorting bin, or the washing machine.

    Cleaning up toys. Mom holds the box or bucket, child puts in the blocks. Silently, yet RICH with all the non-verbal channels of communication.

    What do you do during the day? Each objective naturally fits within your routine (just as it does naturally in typical development).

    In the simple objective of giving the child opportunities to feel herself taking an action, she is experiencing (from the inside) turn taking and foundations of reciprocity, she's beginning to navigate some uncertainty, she's taking her own action in concert with yours, she's establishing early foundations of "meaning making". You're working on coordination and co-regulation. The list of experiences she gets to practice is quite long, and she's *active* with you. It's within this context that imitation can be used appropriately. New vocab and concepts are learned.

    I am AMAZED by what my daughter has learned that we did not teach her directly. (I had become convinced by the ABAers that my child needed the ABA way to learn. That's a myth.)

    Hope that is a more concrete example for you.

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  8. Becca, I did not start RDI until three years ago (almost to the day). My daughter is now 20yo. Before starting, she could give eye contact when prompted but did not reference: she did not know when to look at people much less why. Now, she reads and uses facial expressions and body language. She goes beyond eye contact--she studies our facial expression to see if we mean what we say. If I make a remark that she thinks is a joke, she will even wink at me and say, "You're joking!"

    Here is an example of a lesson. Last month, my daughter started taking a watercolor class because she is ready for small groups. I noticed last week that she was referencing the teacher beautifully. She listened to what the teacher was saying. When the teacher demonstrated a skill, Pamela copied it. When the teacher called her name, she looked, thought about what the teacher did or said, and took an action.

    But, I noticed a problem. When the teacher was busy with another student, Pamela waited while other students forged ahead. The day before class, I set up an art class with her and her brother. I imitated what the teacher does and situated the table so that my son was between Pamela and me. The objective was to give Pamela the opportunity to realize that, when I am busy, she can watch what her brother does. Once we got into a groove, I said, "Oh, I have to do some dishes." David continued working, but Pamela stopped. Then, through the nonverbal communication, David let Pamela know that he was still working. So she started referencing him. I have video of this process here: http://aut2bhomeincarolina.blogspot.com/2010/02/watercolor-homework.html

    The next day in class we sat her next to another student whom she had referenced well in the past. A couple of times, I made declarative comments about what the other student was doing. We don't give direct commands or prompts because that robs the child of the opportunity to think. Not only did she shift attention between the teacher and student well, Pamela thought about what she did very carefully.

    At one point, they were drawing blocks. Pamela selected a cylinder and rectangular solid. Her fellow homeschooler chose a cube and rectangular solid. The teacher demonstrated how to draw a cube, and the fifth-grader copied her. Pamela did not draw a cube. She waited patiently for the teacher to draw a cylinder. Then, Pamela carefully drew her cylinder, peeked at the girl's drawing of a rectangular solid, and then copied that. She did not require any prompting or input from me. She thought through what she should and should not do, all on her own: http://aut2bhomeincarolina.blogspot.com/2010/02/another-amazing-day-in-watercolor-class.html

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  9. Alanna is not yet three years old, right? The developmental gap is not that big right now. Seriously consider closing the developmental gap -- not the skill gap -- now. I wish someone had explained this to me. We have not done ABA in 5.5 years, and we are still undoing some of it. The repetition of ABA can build some strong neural pathways that are not natural. At the end of our 3 years 3 months of ABA, my daughter was screaming and frustrated in every session in the last 3-6 months. She was "on stage" and always "performing" in some way, having to have the one right answer all the time. We prompted, managed her, she was passive, echolalic, couldn't "dance" at non-verbal levels - oh, I could go on and on. When I look at video from when she was 2 (we began ABA before she turned 2), I am so angry, now that I understand development. We extinguished a lot of non-verbal communication as a by-product of ABA programs. We knew what we were behaviorally reinforcing as we targeted a skill, but we didn't know what we were behaviorally reinforcing and simultaneously extinguishing in the same programs.

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    1. when you say ABA are you talking IBI Therapy? ABA is the science upon which IBI programs are based. It sounds like you didn't get into a good program with Natural Environment Teaching and solid Generalization practices to ensure prompt dependency doesn't occur. In my opinion RDI is a watered down approach. They use the same principles as ABA but want you to think they are something new. The strategies I have seen proposed by RDI are based on ABA priniciples. they are the same thing. You must have had a very uneducated and inexperienced ABA provider.

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  10. I'll follow Penny's lead and give more examples of situations that happen impromptu where I give her opportunities to think and take an action:

    * I notice a ketchup stain on Pamela's shirt. I stare, point, and wrinkle my nose. She looks down, but unfortunately she cannot see it from her perspective with her chest in the way. She says, "What?" "Your shirt's dirty." "No, it's not!" I grab a camera and take a picture of it and show her the picture. She sees the stain and goes to her room to change her shirt. I never told her to change her shirt. She had to process and think.

    * I have a handful of groceries and Pamela has a free hand. She opens the door to the house but forgets I'm behind her. She shuts the door. We have window in our door. I bang on the glass. She looks and I hold up the bangs. She opens the door for me. I never told her to open the door. She had to think about it.

    In the early stages, we used all sorts of daily lifestyle things to give her opportunities to learn nonverbal communication:
    * Shopping (the list was in my head)--I stop at an aisle and look down it. She sees what I did and points to the aisle and raises her eyebrows with a slight nod (she could not do this before RDI). I nod too. We pick items in the same fashion.
    * Hanging laundry--I'm the hanger, she is the teller. She points to where I should hang the laundry to dry outdoors (I have a rack and my porch railing).
    * Folding clothes--she watches me while I fold a dish towel and imitates me step by step.

    Because she can watch and do (it took three years to get there), she learned to tie her show by imitating my actions in four, tearless lessons that totalled up to less than 30 minutes of effort. http://aut2bhomeincarolina.blogspot.com/2010/01/tear-free-shoe-tying-lessons.html

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  11. Becca
    this comment may come in several parts over the next day as I have a ton going on but wanted to get a few thoughts out..
    part of the reason no 'activities' are given is that it is sooo individual. For example, we are working on the first child objective of syncronizing actions. some folks throw balls for this... but andrew would chuck them at my head. The GOAL in each rdi objective is NOT the skill...it is a relationship goal. And like ABA, you want to be successful and then make it more challening. So, b4 rdi 'proper' with consultant, i would have done the 'ball' exercise. and would have failed. But with our consultant we came up w/ specific things to do for both me, and my DH, to achieve this goal with Andrew. I have a blog somewhere in my old blogosphere that 'shows' the difference in objectives between Ft, ABA and RDI. I'll try and dig that up this afternoon and repost....

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  12. i will say one thing about activies...EVERYONE does laundry :) tee hee...

    and... RDI is not 'anti-behavioral.' one of the intial parent objectives is 'limit setting' and we also have several behvioral tools to get at some challening behaviors that my son has.

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    1. I attended a seminar today and there were three examples where the attendees asked specific questions to the presenters. In my opinion that was an opportunity to engage the audience - but the presenters just read their power point slides and didn't offer up any relevant thought processes for the parents to work through. Also - the trademark symbol after the letters RDI appeared on the workshop and we were told we would find out what RDI was later - but we never did. I thought this was workshop I was attending but in reality it was a cleverly disguised advertisement. I would still have attended the advertisement but I would have liked to have known up front that RDI is an approach to treating autism and a franchise.

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  13. for what it's worth..I re-posted a comparison I did a few years back. I linked it below. fyi- i noticed you now do ABA. You really can't do both at the same time. (someone may have already said that.) so do your learning now on RDI if you want but you will not get the true capability of RDI while even trying things while doing ABA at the same time. A bit about ourselves; we did AVT...auditory verbal therapy...after my son got his cochlear implant. It isn't ABA but is 'aba-ish' in that we focus on skills (language and speech) and it is 'reward focused.' I am glad we did it.. it served us well. We did not do ABA though. So I defer to folks who have done that ..as they already have commented. I will say that although I am glad we did it, we do now have to back track in the 'relationship' department. Knowing what I know now, i might have done the AVT differently.

    http://growing-fruit.blogspot.com/2010/02/rdi-comparison.html


    my most recent blog (right before this comparison one) talks about 'look at me' and some of my thoughts behind demanding responses vs. waiting for them.

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  14. Hi Becca,
    As you can see from the other posts....the activities are things you would do in your day or with any child. The difference in RDI is the INTENT of the activity. Behaviorial approaches prompt for skills, RDI fosters mindfulness in order to restore that typical development.
    Since I have done ABA with both my children and saw results the first 6- 9 months ( Only for the progress to stall once more advanced skills are introduced), I can give you an 2 examples that you may be able to relate too. The first example is trying to get my son to talk.....we had the say program. Say Dog, say Cat, etc etc. He started to talk, and I was thrilled. However, he would say "say" before the item so we had to create a program to get him to stop saying "say". I had to undo the residual effects of learning language out of the order of his development because he would ask me questions when he simply wanted to make comments and he would script because words were merely words to him with little meaning other then getting his needs met. If you reflect on your daughter, her communication is solely for her needs and not to share anything. RDI begins with Non verbal communication, the same place that neurotypical children being!

    Another example is getting my son to sit down to a task. The *do this* command taught him that if he does what I say he will be rewarded with an item or to be able to go off, away from me to play. This is contrary to what we want to teach our kids. We want the reinforcer to be time with US and understanding the beauty of the dance of the give and take of relationship. Again, I had to undo the improper motivation that was taught to my son. This took a year to undo so I do not take it lightly! With RDI, we teach co regulation to help a child discover that he wants to be with us and pay attention from intruistic motivation. I realize that you see results from her program right now....but I can tell you it will not be long term results. If you think about typical development, a baby learns from us. We certainly are not offering reinforcers to our babies to interact with us. Again, RDI affords a child a do over instead of trying to build skills from reinforcers.

    Kathy

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  15. Just a quick comment about ABA and RDI. I did not immediately stop ABA once I was introduced to RDI. As a parent, I fought hard to get ABA for my children, and I needed to learn for myself if ABA was helping my child or hurting progress. It was a process of discovery for me. RDI believes in doing no harm to a child. Some programs may be compensations and sometimes that is necessary short term. Some programs do harm. That is something you and your consultant would determine together, as a team. There are objectives that focus on this. So while the previous posters may have come to the conclusion that they cannot be done together, and as a parent I came to that same conclusion in the time frame that was right for me and my children, as a consultant I look at these situations in a very individual basis and I need for my parents to see what the best route instead of me just telling them. ( ok can you tell I hated it when people told me what to do with my children when I didn't get it! lol)
    :)

    Kathy

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  16. * I have a handful of groceries and Pamela has a free hand. She opens the door to the house but forgets I'm behind her. She shuts the door. We have window in our door. I bang on the glass. She looks and I hold up the bangs. She opens the door for me. I never told her to open the door. She had to think about it.

    Tammy I love this example!! :)

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  17. I don't me to intrude but this is such an interesting discussion and I'm really interested in some aspects of RDI now.

    We've had our son in ABA for almost 3 months (he's 3.5) and we've seen great progress. There are a few things I have reservations about but overall its been great. The one thing I really like about ABA is the documentation and being able to have tangible proof of Tristan's progress. Does RDI do something similar in terms of tracking progress to know when to go to the next step?

    Many of your examples are about the nonverbal cues, but when you have a child who is nonverbal you want to do everything to get those words. I don't really get how speech would develop if your using those nonverbals. Or are those more examples for older children?

    It sounds like its a great form of therapy for older kids, giving them opportunities to do things for themselves. But for little kiddos they still need so much support.

    Off to read all your blogs now! I feel like my research for autism never ends! :)

    BTW thanks for this great post Becca!

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  18. Andrea, join a yahoo group called "communicating". Dr James MacDonald, or "Dr Jim", as his clients call him, has an intervention similar to RDI (RDI has a bigger, more specific system of objectives). Dr Jim is *excellent* at explaining how speech develops AFTER non-verbal reciprocity and communication are in place.

    Additionally, Dr Gutstein of RDI(r) teaches us that words are the last enhancement of a very complex communication system -- borrowing a concept from Barbara Rogoff in her book, "Apprenticeship in Thinking", typically developing kids are rich communicators before words are part of the currency of communication.

    I was like you -- I WANTED THOSE WORDS. With ABA, we created a one-sided word machine, a demanding little mander who could answer questions we'd practiced but not have a conversation with us. She scripted all the time, reciting lines from videos over and over and over, but there was little real reciprocity.

    I didn't realize that we could program words in her without getting reciprocity in the process, but we did.

    Undoing that -- we're still undoing it -- has taken a long, long time.

    Communication with recprocity is more important than words in the beginning. You'll have to trust me on that -- I'm a mom who went about it the wrong way in the beginning. Please learn from our mistakes.

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  19. PS: Yes, RDI has documentation built in. The system of objectives is amazing, more thorough than the ABLLS.

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  20. Wow I love all the comments ( I think they did a much better job than me at explaining haaha) - I know you said something about "fuzzy" in your email AutisticWisdom, you know life is fuzzy. When you interact with NT kids there are no "goals" and tables to fill. I see RDI as accepting your child's deficits and parenting your autistic child just as you would an NT child, only its personalized parenting - something a great parent does naturally - but in this case its just VERY VERY slow, deliberate, reading your kids body language, eye movements, analysing their verbalization, context of situation, moods, developmental age and so on - when teaching some as simple as peekaboo!! For me its great parenting - individualized for my child who has issues - for that RDI mindset helps you identify the issues your child has - but the ABA lens is completely different to the RDI lens to view autism and that is why a lot of parents do not get RDI.

    I wish you lots of luck in your endeavor to understand more. All I can say is, its totally worth it for me!!!! (and sooooooooo mch cheaper than a 40 hour "IBI" program).

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  21. Stranded, what a great description -- I sometimes describe RDI as a parenting program, but your term "personalized parenting" is so much better! Love it! ;) (Becca's probably sick of me by now. So, POOF! I'm out of here! *grin*)

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  22. Hi everyone,

    Thanks to all who responded - I did not expect such a debate and great discussion!

    One of difficulties I have in understanding RDI I think stems from the terminology used that appears to be deliberately "fuzzy". For example:

    The "dance" with your child - why not say the reciprocal communication, give and take that you try to foster? This seems to be "RDI-ese" and is not very understandable to those outside the RDI world.

    Co-regulation is not a word in the dictionary but it seems like it was introduced by a psychologist (Alan Fogel). The best way I can describe this word is the reading of subtle cues of communication, such as body language, prosody and facial expressions. I would agree this is a difficulty for people with autism.

    Penny, you have mentioned a system of objectives but it seems to see this list I have to pay, because no one can tell me what the objectives are. Knowing some of these explained layman's terms without the RDI vernacular (e.g., step 1: get your kid to co-regulate a "do-over" while he dances and attention shares) would go a long way to explaining RDI.

    Stranded, I don't agree with your comment that parents of neurotypical kids don't have "goals" or tables to fill. I see parents interacting all the time with their kids, asking them questions like "what colour is this ball?" and being interested in what they are learning. I suspect many parents don't, but the ones who know about child development are probably encouraging early learning. Sure they don't keep data intensively but they are doing it informally.

    Penny, I do understand your explanation about the difference between being verbal to get stuff versus actually communicating. However, because children with autism need to have their needs met, they need some way of doing this early on or they will become frustrated and communicate in other ways. Since we introduced PECS to Alanna she has been far happier in getting her needs met and as such other behaviour has ceased. I think the reciprocity will come once she is able to communicate well enough to have some back and forth.

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  23. Kathy, you mention communication being solely for Alanna's needs and not for reciprocity. That is completely true, but we have to remember children with autism struggle with "theory of mind" - understanding that others can have differing opinions and have their own needs. So to be frank, she is not particularly interested in my needs. She's also 2, and most 2-year olds are not interested in others needs, autism or not.

    Babies do in fact get reinforced when they interact with us - they receive a lot of social reinforcement such as smiling or looking or playing. For typically developing children this is very natural and they enjoy having their interaction rewarded. Children with autism do not care much about this type of reinforcement at first but can learn how to appreciate it. Alanna very much likes social reinforcement but only on her terms.

    To address the examples several people gave me:

    Setting the table: Before ABA Alanna would probably not even notice I am setting the table, nor notice the plate, or even respond to her name. She would likely be bouncing up and down or spinning off in her own world. Even now, she would come to me if I asked her to but would probably throw the plate. If I prompted her gently to set the plate down and reinforced it, eventually she would "get" that what you do with plates is set them down nicely. I understand the skills we are trying to teach here (attention sharing, shifting, etc.) but there is just no way a child with autism is going to do this task without some basic prerequisite skills.

    Folding laundry: Alanna does not spontaneously imitate yet. She is getting better at it through ABA but to expect her to do it spontaneously is ridiculous. That's a big problem and a huge part of their learning disability - normal children imitate, children with autism don't. As she learns to imitate, she will generalize the skill and we will practice in the natural environment, and then I think this kind of activity (folding laundry) would be an appropriate activity for sure.

    Perhaps the best question to ask is, where would you start with a non-verbal child who has no skills at all? Doesn't respond to their name, no eye contact, doesn't track with their eyes, doesn't point, is completely in their own world? How would RDI tackle that?

    For those of you who had bad experiences with ABA - that sucks and I'm sorry about that. But what I see now is a little girl who used to be unable to communicate her needs and was unable to follow basic instructions. Now she can communicate her needs, she can understand us better, she has improved motor skills so she can play catch and kick balls around (and giggles and has fun doing it too!) She no longer throws toys in frustration but understands their purpose and has fun sitting down to play with them, then looks at us in anticipation of our reaction of how well she has done.

    It seems to me RDI is a great technique to employ with older children who have learned the basic skills through ABA, or for Asperger's kids who are primarily struggling with social deficits and NOT communication and cognitive deficits. I think kids need to be able to communicate and think before they can understand the complexity of social interaction. I suppose in this way I am thinking like Andrea. I would love to incorporate RDI techniques into our parenting but I still do think Alanna needs ABA principles to learn.

    Lastly, Becca is my wife and has been monitoring this post closely :)

    Thanks again all!

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  24. By the way, if anyone knows of an RDI consultant who is willing to work hourly and not on a six month contract basis, let me know. I'd feel better sinking a few hundred dollars than six thousand on something I am not sure about...

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  25. Hi Autistic wisdom,
    I differ with you about a 2 year old not being interested in others needs. They have in fact developed theory of mind in the primary stages of intersubjectivity
    Please see my blog on this-http://autismremediationforourchildren.blogspot.com/
    Alanna is controlling the interaction ( in her own terms) because she does not understand the function of the interactions. This gap will progressive widen.
    Like Penny said earlier, the gap that you see with your child is not that wide yet because she is 2. Teaching a child skills and behaviors will not teach them theory of mind. It will though teach them how to perform the skills...much of like you talked about where you see progress. of course this seems great, and an improvement. But as skill programs progress, the gap widens and this is when you see the results of ignoring developmental gaps.
    I agree babies get reinforced, with social communication and a trust that develops in the interaction. There is no need to give babies candy, etc to get them to perform because social interaction has little to do with performing and all to do with intent.

    How do typical children learn how to set the table? The parent is the guide, and shows the child how to set the table. There is no reward other then the intruistic motivation of the underlying relationship. By interrupting that with a system of rewards for skills, you are bypassing the understanding of why relationships exist and why we care about others perspectives. You are bypassing the development of theory of mind. If setting the table the right way were the goal, then ABA hits the mark. But the goal, is for the child to be able to care about setting the table because of their relationship with the parent and being able to share perspective. When my 6 year old NT daughter was 2, she wanted to (help) Mommy whenever she could. This was not for a *reward*.
    Behaviorial programs teach children how to set tables, and they do it well. Developmental programs teach children how to care about the guide, and to want to set the table because of their relationship. The problem with forgoing teaching the relationship piece is that when the child is an adult, skills will not help them live in the real world. Employers want people who can think on their feet, problem solve and are good with understanding and interacting with people. That only comes with theory of mind.
    I dont think anyone is disputing that you can teach a child to set the table with secondary reinforcers and prompting. You can teach a child pretty much any skill through secondary reinforcers. You have to establish if you think skills are enough to prepare her for life, or if she needs the ability to take on someone elses perspective.
    She will definitely learn how to fold laundry..but you missed the point of the posters. The goal was not to fold laundry, the goal was the relationship and intent. Again, you can teach a child any skill with bribery....but what we want is to foster mindfulness and this will remediate Autism. She will not be able to generalize mindfulness from the skill of folding laundry.
    My son was absolutely non vocal, I was told he would never talk. He was dx severely autistic. How rdi tackles this is by going back to where they stopped developing typically and building the relationship through activities that foster the parent and the child each being able to take an action...that is what co regulate means.

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  26. What you see now in ABA is a little girl who is learning skills. I understand! I was there. I of course thought I was doing the best for my child. For the record, I had a great ABA program. I only realized it failed when my son graduated from it 4 years later and had no clue about relationships. he could perform any skill though....but that really does not mean much....in the world. So I get it, and I think everyone else here has been where you ahve been. We get that you see progress because she can now perform some skills. But if you think long term...you will realize that skills will not produce a quality of life that you would want for your daughter. That is why there is a crisis of Adults on the spectrum now. if ABA was so successful...then why are there 88 percent of adults who cant live independantly?
    My sons ABA therapist told me when we discovered RDI that she has seen how ABA falls apart once the child is in 2nd0 3rd grade when all the kids can think dynamically and skills are no longer the yardstick of success. She has a masters in ABA...and now is an RDI consultant. So I loved my ABA program during my ABA program...it was only after I saw the unsuccess of it that I realized what I had done!
    RDi is for children struggling with language and young children. RDI is for all children on the spectrum because it fills in the developmental gaps of those children...so no, RDI is not for children who are only high functioning or children who have gone through ABA programs. That said, half of my clients are indeed children who are older that have gone through ABA programs....and they NOW see the limitations...and I now have to instruct them how to undo what was done with skill training compared to relationship training. It is safe to say that those here would like to spare you this fate....but you have to make that discovery on your own...we certainly cannot convince you. It breaks my heart....actually, when a parent comes to me with their older child and are now freaking out because it is obvious they will not live independantly...and they ask me if RDI can help.
    Infants can communicate non verbally before they can communicate verbally. They can think without using words. RDI starts there. When you are able to fill in your daughters developmental gaps, and catch her up developmentally to her age, then she will learn typically. There is nothing wrong with using some behavior modification to help her with a skill...but the difference is thinking behavior modification is going to give her the ability to obtain the ability to have theory of mind. Since she is young, you are an excellent opportunity to catch her up developmentally before she enters school, etc.
    To answer your question about an RDI consultant to work hourly...I offer a package that you can try RDI for a month. I gave you my website in an earlier post. This will give you an entire month to see all the objectives and view the elearnings that take you step by step through Autism remediation. I would be willing to talk about hourly but to be honest, packages tend to be abit cheaper because as consultants, we dont want to nickel and dime people and tend to spend alot of hours on clients that are not included in the packages. That said, I think you may have a better understanding how the process works once you have done it for a month and then can make the decision....that is why I offer the introductory offer that I do. But I, as well as other consultants, do offer hourly.
    Kathy

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  27. Here is my site again
    http://mysite.verizon.net/vze3ww4z/id8.html

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  28. I have noticed many negative comments regarding ABA. Not all ABA programs are created equally and not all ABA therapists are equal either. A good ABA therapist will not rely too heavily on discrete trial teaching. We are still "green" in our journey. Our son is a little over 2 years old and has been getting ABA therapy for the last year. We think it's amazing. His ABA program is not all unnatural. It includes play, Natural Environment Teaching and lots of incidental teaching. Our ABA therapist encourages creativity and spontaneity.

    RDI sounds interesting, but like the author if this blog, I found it heavy on theory.

    Can someone explain whether there are significant differences between RDI and Floortime? We have Greenspan's book and have found Floortime be easier to understand a bit more intuitive.

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  29. Anonymous, I tend to agree that Floortime is easier to follow (Greenspan's book is very readable). I suspect this has to do with the fact that the objectives and stages are not hidden until you pay...

    I also agree Natural Environment Teaching is different that discrete trial and encourages creativity and spontaneity if done properly.

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  30. We tried Floortime for a year, combined with ABA, in our 3rd and last year of ABA. I *hated* every second of Floortime -- all my daughter did was shut me out and close circles. She had all these beautiful one-sided skills but no desire to interact in relationship with me. Every second of Floortime was painful.

    I know quite a few Floortime families who completed the program and began RDI, only to realize the kids had zero reciprocity and had to start at stage zero in RDI. Floortime kids tend to be good LEADERS, and look good from the outside as long as everyone is joining and following them, but they are not good joiners and followers themselves. I'm guessing there are Floortime successes that I don't know about. But I know speech therapists and a couple of RDI consultants who are working w/ former Floortime families who also report what I'm telling you.

    The difference between RDI and Floortime (in my opinion as a parent) is the beginning. Floortime is child led, with adults following the child's lead in a big way. RDI works early on to establish the parent as a guide (not the master who rewards targeted behaviors).

    Parents all over the world raise their children in the same way, within a cultural context, where the children learn to think from the parents. Whatever the culture values will be the values transferred to the child, as the guide gently leads the child, in age-appropriate ways, including a lot of fun and play in the youhger years. My understanding of Floortime is following the child's lead is the focus, and the adult is never established as the guide.

    You have to decide what you value and how to get there, and make sure you're not accidently reinforcing:

    "I don't have to pay attention because someone does that for me. They'll call my name when I need to attend."

    "I don't have to shift my attention because someone does that for me."

    "I don't have to know how to join, follow, row with the flow, because everyone joins me."

    If we'd had a better instrument than the ABLLS to guide the guides, we might have had a much better shot at "ABA-ing" the remediation process.
    But we needed a more neurodevelopmental instrument than the ABLLS provided. I look at RDI(r) as being very behavioral as I change how I
    use myself. For example, if a child doesn't have to shift his own attention, then he won't. But changing the adult in a way that stops the adult from verbally directing attention all the time gives that child opportunities to shift his own attention. You're making a change in the adult's behavior that shapes the child's experiences.

    RDI(r) has the objectives.

    Within RDI, you can use anything else you need. PECS. Discreet trial for a skill (but not for something that is a function of a continuous process). A communication device. OT. PT. Biomedical treatment.

    Autistic Wisdom Dad, the first steps would be in setting up opportunities for Alanna to join you and be successful as an active particpant (not a responder to prompts) - you'd discuss this with your consultant and he or she would give you ideas and ways to do this without the possibility of broken plates at the dinner table. *grin* My examples were probably a bit out of Alanna's reach -- I'm sorry I chose poor examples. At her level, peek-a-boo type interactions, row-row-row-your-boat type games etc may be more appropriate.

    She needs the between-you-and-me joint-attention experiences, the first level of intersubjectivity, that involves facial gazing and what we make together, you and me. That's the foundation.

    I like you two -- you are so much like me! We're getting close to 10 years after the regression and 9 years after diagnosis, and I still research and read a lot.

    Good luck! Your children are beautiful and are blessed to have such go-getter parents!

    Penny

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  31. The whole in-RDI-the-objectives-are-hidden-until-you-pay thing is interesting to me. Yes, I understand the way that it looks like it's a money maker. And maybe it is. However, when I actually LOOK at the objectives, I am overwhelmed in terms of my own child, and I have been through part of the consultant training (and I stopped mid-way). RDI consultants don't assess the child. This isn't an intervention to CHANGE THE CHILD. It's the first intervention we did that focused on ME and not HER.

    I really NEED another consultant looking at my daughter and me together, and scanning the lists and lists of objectives in the system.

    Has my daughter met this milestone or that one? Has she made this discovery? Is this foundation in place?

    We just returned from a couple of days with our consultant (we are long distance clients). The consultant and I see my daughter touching some objectives THREE STAGES HIGHER than where her foundational delays are right now. I can look at the delays and her current level and see why getting these lower level foundations in place is necessary -- a child will fall apart later if these foundations are shaky or missing.

    Dr Gutstein talks about prototypes -- the parent child relationship is built on prototypes. The peek-a-boo game is a prototype for the next level of interaction, where you add a toy to the relationship (an external referent), and the parent child dyad expands a little. The basic prototype remains the same, but it becomes more complex over time and stages, and you can see this in the objectives. Sometimes, (a lot of times, actually) teasing out the subtleties between and among the objectives as they apply to your situation requires that "other" set of eyes.

    You can't look at the system of objectives and begin to work through them one at a time.

    We got into a place where I was overwhelmed by work on objectives, and my consultant moved me to some parent objectives, and ironically, by focusing on me again and not my daughter, my daughter made DRAMATIC progress in that 6 month period because I became a better guide. The objectives had me in a skill based behavioral mode for some reason that I can't explain -- it was a me thing -- and yet the discoveries my girl made and the objectives we checked off without working on them directly was amazing!

    A lot of development happens naturally when the parent, as a guide, is able to use herself in such a way that the child is an active participant. Period.

    Okay, I'm done -- Sorry I took up so much space here. Hope I've been helpful.

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  32. Sorry, I was wrong. I'm not done.

    CLARIFICATION: The RDI consultant assesses the "child-&-parent" together. I didn't mean (literally) that the consultant doesn't assess the child. Note to self: I need to re-write that last comment into a post on my own blog.

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  33. To Anonymous,
    My two childrens ABA therapists were excellent!! So excellent that when we decided that RDI would serve my children better, I begged them to look into it further. As they did, they were excited to believe RDI was exactly what was missing in the life…and our head therapist at the time, started training for RDI and is now our RDI consultant. She is the best of the best!! Creative, spontaneous and she said my son was the furthest she had ever seen with a child…..yet he started at the basic low stage once we started RDI…. SO I just want to be clear that my children had an excellent ABA program!! My RDI consultant has a Masters in ABA….that she no longer practices because she sees the difference! ABA is amazing to teach skills…but my goal for my children were not just for them to know skills…I wanted my children to be able to think.
    Teaching skills can be done to dolphins, dogs, etc with stimuli….and it works well. Teaching skills for children have their place, but not to develop thinking, problem solving, theory of mind…I want to build a mind, not just merely have behaviors in place. Behaviorism does not teach theory of mind. The studies show this and there are no studies with a positive outcome for adults with Autism that have done ABA. Since ABA and behaviorism has been around the longest, we should be seeing positive results within the adult community. I know that within the developmental community, we are seeing great results for the future of children on the spectrum….to overcome their obstacles. What we do see as far as the *research* quoted and studies concerning ABA, is that there is improvement for their skills after a year, etc. I don’t dispute that at all. Again, knowing skills is very different then knowing how to interact in the real world. That is why time and time again, clients will say to me, he knows all he needs to know academically, but does not know how to make a friend…. Making a friend and interactions and social competence has its roots in development way back when the child is 6 months old! RDI is about filling in those developmental gaps so that the *skills and social* follow a typical path!
    Kathy

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  34. To add to what Penny has said, here is a page from my website discussing some of the differences between RDI and DIR
    http://mysite.verizon.net/vze3ww4z/id12.html

    Kathy

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  35. Some background on the pay to see the objectives comments. RDI used to publish a book with each and every objective. I think I purchased it back in 2004. That was when I was starting to look into RDI. I was able to attend FREE chats where Dr Gutstein himself answered our questions once a week! What happened, and I was there when it was unfolding, was that ABA therapists was getting the RDI information, and turning the developmental objectives into behavior programs. Since I was still rooted in the ABA community I know a few people who were doing this…and on the chats it was obvious ABA therapists were participating. The developmental objectives are not programs to teach discreet skills….and Dr Gutstein was appalled that his developmental program that was based on rock solid developmental research was being twisted and compromised. He eventually withdrew the chats and started working on a system where people who understood the theory of RDI could obstain the objectives, and those who did not, would not be able to turn these very precise developmental foundations and milestones into a behaviorial program…oh all the while say they were * doing RDI*
    I did not have a consultant at this point because I was still trying to do this all on my own, so I was effected by the situation but I totally understood what was going on and the effects of it. I pretty much within the next 6 months started the official RDI program, and my childs success skyrocketed by having a consultant guide me through guiding my child(ren) through their individual developmental track.
    The privacy of the objectives are for good reason! And also as Penny stated, there are hundreds of objectives…and so to follow the system of RDI means you need to understand the intent of the objectives and follow exactly where your child is in those objectives. This cannot be done without the help of a consultant who is trained on exactly how to do this for their families.
    One more note…..The reason RDI is HEAVY on theory is because Dr Gutstein wants to empower families so the first part of RDI is to help parents understand all the theory before implementation. This is with any good program! On the note of empowering people, The goal of an RDI consultant is to work herself out of her client….meaning, my goal is to get the parents to be an excellent guide for their child, restoring their development. Once that is accomplished, they can graduate from RDI yet still remain on the Operating system….that is a policy not of a program who is looking for money, but of a program who wants to empower families. That is what I love about RDI…so I understand that some of you may find it a lot of theory, but that is only the first step. And I am thankful that it is set up like that because I want to know why I am doing something before I do it. If you look at the theory behind ABA…it is totally different.
    This article may be helpful to you! I am definitely not trying to convince you of anything….I merely came to this blog to try and answer any questions you may have….I so appreciate your enchange and will probably add to my website a frequently asked questions page to help those who want to know the differences with behaviorism and developmental/cognitive approach.
    Anyway here is that article lol…
    http://copland.udel.edu/~jconway/EDST666.htm


    Kathy

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  36. Thanks for the clarification Penny! I know your journey with your child has been incredible! As a consultant I do assess the child along with helping the parents be able to restore the developmental track of the child by what * they* do with the child. I assume that is what you mean when you say that RDI does not change the child. RDI absolutely changes the brain of the child with Autism and restores them developmentally. As you stated… RDI remediates the challenges of Autism for the entire family, the child’s obstacles with brain development and the parents, with strategies to restore the relationship of Guide/apprentice that typical development is based on….and again, exactly as you stated, returning the child to become a mindful active participate. I loved reading your posts!
    Kathy

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  37. Keep in mind too, that my school district over the 5 years for my one child with ABA, spent over 400,000.00. This does not include the remaining years that the child may need a shadow or special school. I was able to show my district the immense savings that RDI posed, so they happily funded RDI compared to ABA. I was very diligent in fighting for my children to get services. 5 years of RDI costs approx 25,000.00...and that is if you even need 5 years of RDI ( typical graduation rate is well under 5 years)
    So I never *get* the topic of how RDI is expensive and ABA is not. ABA is a huge business of therapists, etc....RDI is 1 consultant and the family.

    Kathy

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  38. Kathy, you're right -- again, my wording is poor. In ABA, our goal was completely focused on changing the child, on "getting" something from the child. Floortime was focused on following the child, "getting" the child to allow us to expand those circles. RDI(r) was the first intervention that's focus was on ME, on changing ME, with the pressure OFF of the child, off "getting" something from the child. We aren't trying to "get" her to "change". We're giving her opportunities to experience us and herself in new ways, and allow the experiences to create change in her because she's actively participating in her own interactions and making her own discoveries. Yes, she is ultimately changed. (Clear as mud?)

    I feel some journaling coming on, and maybe a blog post.

    Now I've taking over the comments section of AutisticWisdom as my place for personal reflection. *wink*

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  39. I know Penny...we have sort of taken over! :) Well I hope you all know it is because we are passionate about giving ASD children an excellent prognosis and quality of life into adulthood! Ultimately for any family, treatment options are a matter of choice. I just wanted to give feedback so that you can make the most informed choice possible. I hope the information has been helpful as you navigate your options! Best wishes for your beautiful little girl and your family!
    Kathy

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  40. On reciprocity, my daughter is 20 and has aphasia as well as autism. She had a large vocabulary for many years, but no ability to put words into a sentence. At 15, we started doing the association method for her syntax and we finally saw progress. She could speak in sentences and ask questions. That did not teach her reciprocity!

    RDI helped me see that the development gaps were so large that, even being able to speak, did not teach her reciprocity, which is required for being able to hold a conversation. She fell into verbal stims and spoke only about topics that interested her (calendars, Disney, highways, etc.). Being able to speak does not translate to having a conversation. Many social and emotional milestones have to fall into place first.

    Most two year olds may not be interested in meeting your needs. But, they are interested in doing things together, sharing joint attention, talking about what they see and feel and think, etc. Children with autism do not imitate, but they can learn once you redo those gaps. I know this sounds absolutely bizarre, but three years ago, when we started RDI, my daughter was missing infant level milestones. I was absolutely skeptical for I had sat in a workshop in 1995, hearing the neurologist Eric Courchense explain what parts of the brain made it impossible for autistics to shift attention rapidly. He also explained that once that developmental window has passed, the brain is altered for good. I believed him until 2007 when we started seeing that our teenager learn to do "impossible" things like read and use facial expressions, rapidly shift attention, follow eye gaze, etc.

    I am sorry for deluging you with this information, but you stated you did not get RDI in your post and you raised some great questions! I think it is better to make informed decisions based on people who have experience. Your daughter who is an absolute cutey is at a perfect age for RDI. I know this sounds crazy but I wish I had discovered RDI BEFORE the association method (which helped her with her aphasia). I had to undo "bad habits" with my daughter who had only recently started speaking in sentences. With a nonverbal child, you have a greater opportunity to redo a typical progression of milestones.

    To answer another question, the basic bottomline difference between RDI and Floortime, in my opinion, RDI is parent guiding the child in sharing experiences while Floortime is following the child's lead.

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  41. I have a question about RDI. Is it possible to do ABA with therapists and then us parents to RDI with the child? How much time per day is required for RDI?

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  42. Hi Anonymous,
    What I recommend is having RDI extenders instead of ABA therapists....RDI extenders work with the child based on developmental strategies. If you have an ABA program going and dont want to stop that immediately..( or cannot find extenders)..That is something that a consultant will look at for your individual familiy. ( reasons behind ABA compensations, family dynamics related to time)
    Eventually though RDI and ABA contradict each other as RDI builds intruistic motication and ABA simply uses a system and reward training. That of course is something that a family has to decide. I have one client that continues an ABA schooling experience while doing ABA. I did them both for abit with my children so I understand your question.
    RDI is based on slowing down your pace and increasing opportunities for guiding, etc....so the amount of time can range depending on how quickly you would like to see a progression. Many families learn all the strategies and make RDI pretty much an ingoing lifestyle so *time* to do RDI is not seperated from just being with their child. Other families start off with 1 or two activities per day. Your consultant will help you find times within your day, within your personal schedule, to incorporate RDI. The goal of RDI is not to ADD anything to your day ( Lord knows we do enough already) but instead to teach you how to increase opportunity within the time and schedule that you already have.
    That said, of course the more you do RDI strategies, the quicker you will see progress.
    Hope this help!
    Kathy Darrow
    RDI (R) consultant ( IT)

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  43. Anonymous, I do know people mix both but I suspect you have to be careful since there can be some interference based on what I'm reading...

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  44. oopes, sorry meant to say while doing RDI!
    Kathy

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  45. Yes autistic wisdom,
    there are definitely people who mix both, but I find once they see the progress with RDI they realize that they do not *need* both. My thought is, it is better to start RDI with an ongoing ABA program compared to not doing RDI because of an ABA program :)

    Kathy

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  46. In regards to the hidden objectives and RDI research:

    1. RDI is one of the only autism treatment options that does not publish this information without paying a consultant. This has honestly made me somewhat cynical it is more about money than helping people.

    2. There is no evidence of "rock solid developmental research" for RDI. I know of only one study done on RDI and it was not independent nor was it well controlled. I'm not saying RDI doesn't work, I'm just saying there is not a lot of evidence it works based on studies but that may change over time. Dr. Gutstein claiming it works is not a valid study, by the way, and neither is anecdotal stories from parents.

    Again, thanks for all the comments, good discussion, I learned a lot!

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  47. Hi Autistic wisdom,
    1. I understand why you may be cynical. Like I said before RDI used to publish the information and the book has all the information except the objectives. The objectives are from years of studying development and so they are copywrited and protected, but I do understand why that is frustrating. I also understand why they are protected from everyone seeing them and using them out of context. His older books have many of the older set up of objectives in them...much like the book engaging Autism by greenspan. But Engaging Autism is nowhere near as detailed as RDI.... I can post samples if you would like!
    2. RDI is based on development and RDI has based its concepts on books by developmental professionals ( The list of books are on my website)...and yes, being only 10 years old more studies are forthcoming. My question would be, for the 1st generation Autism treatment ( ABA) that has been around for 30 years, why is there a crisis with adults on the spectrum. Why are there NO Studies of what happens to ABA children into adulthood? We are still waiting for a follow up study from Loovas....concerning quality of life. I get that ABA increases a childs skills... they can do all sorts of skilled behaviors. I read blog after blog of parents who have dedicated their life to helping their children with ABA, only to admit they cannot live independantly. Their success is their child can go to school, Etc but absolutely admit that deficits are still severe! That is because Autism is not going to be remediated by increasing skills. Autism will be remediated by increasing mindfulness. My own children are proof for me as my older son does not qualify as *autistic* by nature of the progress he made developmentally. My younger son is not far behind. I was not going to wait another 20 years for studies who have followed a child from 2 or 3 to use RDI. My children needed remediation now! But yes, parent stories are not scientific...but either are clinical trials yet cancer patients flock to them! People want the newest based on current research and just like when someone has cancer, they are not going to wait on someone else to prove to them something is successful! There was absolutely nothing for me to lose by looking into and starting RDI, and everything to gain. Which thankfully, RDI has changed my familes life and has given my children opportunity to grow up and have the quality of life as a typical person would!
    It was a great discussion! I am serious, I am going to take all this information and make a page on my website!! lol We covered good info here!
    Kathy

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  48. Just to add-
    RDI is based on the developmental research of ALan Fogel, Barbara Rogoff, Peter hobson, Daniel Siegel, and more....I believe Peter Hobson is in the process of a controlled study for RDI ( He was introduced to RDI after Dr Gutstein contacted him telling him how he based his remediation program on some of his research findings!....So it is coming!!
    Here is my website for the info on the books!
    http://mysite.verizon.net/vze3ww4z/id9.html

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  49. HANDLE is another intervention doesn't publish info w/o paying a consultant. I highly recommend, "The Fabric of Autism," by Judith Bluestone. A few activities are listed in the book and on the web site, but most are obtained via an eval w/ an experienced practitioner.

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  50. Kathy, looking forward to the research.

    Regarding outcome in adulthood... you are right, there is no study. However, Lovaas did show that most of the "best outcome" kids kept their skills as they aged (study here):
    http://www.ctfeat.org/articles/Lovaas93.htm

    Also, here's an interesting website from an individual who was part of this original study:
    http://www.joeslivingproof.com/joes_story.php

    I do realize however that outcome at age 7 is not outcome at age 18, and Joe is one person.

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  51. Hi!!!
    I have to run out and so more later but this is a perfect example of what I am talking about...taken from the CF article-
    ***When re-evaluated at a mean age of 7 years, subjects in the experimental group had gained an average of 20 IQ points and had made major advances in educational achievement.

    At the time of the present follow-up (1984-1985), the mean CA of the experimental group children was 13 years (range = 9 to 19 years). All children who had achieved normal functioning by the age of 7 years had ended treatment by that point. (Normal functioning was operationally defined as scoring within the normal range on standardized intelligence tests and successfully completing first grade in a regular, non special education class entirely on one's own.) ***
    Notice the wording.... Read what defines normal functioning! My then 8 year old graduated from ABA, was 2 grade levels above his peers in most subjects, yet, his *autism& was not remediated because Autism is NOT an academic disorder! Children with Autism are actually quite good at memorization!!
    We start RDI with him ( He is now almost 13 btw) and we started at the beginning, as he had the cognitive social understanding of a 1 year old.
    So their normal functioning is to be able to sit in the classroom and IQ point rose 20 points.I get that...but it is improvement on skills!! Not mindfulness. When these kids attend school all their life knowing skills and then graduate, they cannot function in the real world because the focus was on skills.... ( measuring IQ is not social understanding, it is static skills) If IQ was all that mattered, then employers would ALWAYS hire the person with the highest IQ....Employers looks for someone with excellent program solving skills too....people who work well with people...
    Gotta run! Does that make sense? This study means little in terms of quality of life!

    Kathy

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  52. ps...Handle is for sensory dysfuntion and brain integration and does not remediate the core deficits of Autism.... Some children need additional help because of a co occurring condition with sensory integration! This can be determined within the objectives of RDI.
    Am I correct Penny?
    Kathy

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  53. Hi Kathy,

    Respectfully, I disagree with your assertion that autism is not an academic disorder. It is a disorder that includes social, communicative and usually cognitive disorders. Your son is in a small minority of people known as high-functioning (HFA) autistics, or perhaps Asperger's syndrome (aspies). Aspies and HFAs generally do not struggle with cognitive and communicative deficits, but primarily with social deficits. I agree 100% that resolving these deficits are crucial to be independent as we understand independence. For HFAs and aspies, focusing on social deficits makes sense. For the rest of us, including children with autistic disorder, there does have to be some remediation of the cognitive and communication deficits.

    From http://www.intellectualdisability.info/diagnosis:

    "Although commonly associated with general intellectual disabilities - approximately 75% of people with autism have a non-verbal Intelligence Quotient (IQ) below 70 - autism can also occur in individuals of normal, or even superior intelligence."

    From:
    http://www.nidcd.nih.gov/health/voice/autism.htm

    "Experts estimate that as many as 25 percent of all children with autism may never develop verbal language skills."

    Being able to communicate and being able to think are important pre-requisites to sorting out the nuances of social communication. This isn't to say you don't teach kids social skills at all until they can talk and do mazes. I'm saying it's one piece of the overall autism puzzle and for many parents, having improvements in adaptive functioning, self-help skills and IQ is to be celebrated. This is why I think ABA is needed and I'm starting to think RDI is a good adjunct, especially for someone who has graduated from ABA like your son!

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  54. Hi again!
    My son was Dx Severely Autistic at 1 years old and I was told he would never speak..and I would probably have to institutionalize him..when I say it is not an academic disorder I mean that measurable gains for quality of life is not about academics. So no, my children were not Dx as aspergers or HFA. I of course am now told that my younger son must be HFA because you cant tell..but that was not his Dx...that was from hard work remediating his deficits.
    RDI absolutely works with developing language in a typical fashion instead of out of the developmental sequence. When my son finally did talk, btw, was not until he was 5, he did not have the same scripted language that a child who is taught language through behaviorial means.

    So I respectfully disagree that ABA is needed at all....because what I had to UNDO once I started RDI was something I would never want to ignore when giving advice to others!

    Kathy

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  55. Hi I looked at both sites you gave me....look at the criteria
    ***Problems in developing reciprocal social relationships; lack of shared attention; impaired empathy; failure to understand social "rules"; inability to relate to peers; unusual eye-contact and facial expression

    Communication Deficits About 50% fail to develop useful speech. In the remainder, language development is delayed, except for Asperger's syndrome, in which first words/phrases develop at normal age.

    Expressive language is characterised by: repetition; delayed echolalia; stereotyped utterances; lack of reciprocal conversation or "chat"; pronoun reversal & neologisms; abnormalities in rhythm and pitch; abnormal use of gesture. Internal language (the capacity for pretend or imaginative play) is also affected.

    Comprehension is limited and very literal; understanding of abstract concepts is particularly impaired.

    ***

    None of these have to do with skills....they have to do with mindfulness. Language forms through understanding communication...babies cannot speak yet they understand non verbal communication.

    Just to be clear, both my sons, one Dx with PDD and the other with Infantile Autism, did not speak by 3...one spoke at 4 and the other at 5 years old.

    Kathy

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  56. ***"Experts estimate that as many as 25 percent of all children with autism may never develop verbal language skills."**

    I am sure that some experts believe this....but unless there is a language disorder slongside Autism, children with Autism learn to speak once their developmental understanding of language is filled in...starting at non verbal communication ( Prosidy, etc)

    Kathy

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  57. ok I was able to look at the study again and also joes living proof.... Pretty much the study shows not much other then children were able to retain skills but the study does not speak about quality of life or relationships.
    ANd with Joe living proof....well, I will tread lightly because I absolutely respect families who have done what they have done. I am obviously happy for this family. They were obviously completely dedicated to their child! I did notice that his utube video was absolutely scripted ( since he said the exact thing that his website says) compared to Utubes of Raun Kaufman presenting on the developmental program son-rise ( he is recovered from Autism). Dr Gutstein showed us many clips of adults who have recovered and I of course know children who have recovered. ( there is a back and forth conversation) So I dont want to comment much on this other then what I saw still focused on academics and skills on Joes website....there was no talk about friends or marriage or the social aspect.. etc....that is all I will say on that. Joe actually reminds me of how my oldest was before RDI...lacking that non verbal prosidy, etc....
    Again though, i definitely do not want to personally criticize someones choice....I am here merely to give you the RDI info since you guys posted that you dont get it. :):)

    Kathy

    Kathy

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  58. I also had researched the sonrise program....decided that RDI was a better fit and more percise for my family...but I talked to Raun Kaufman personally and I would of went with Sonrise if there was no RDI :)
    I think this is my favorite clip from him....
    http://www.youtube.com/watch?v=qgOiKz3c0Ts

    Kathy

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  59. Kathy - you are right about Joe in the sense that we have no idea how he is doing socially and that the prosody of his presentation is pretty monotone, and that it's probably "scripted" in the sense of being the same as what's on his website. I'd have to meet him to really get a good feel I guess. Good points!

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  60. How far away are you from Lansing, Michigan? (Ontario is pretty big, but Windsor is not so far, isn't it?)

    Simplify your Parenting: Autism and other Developmental Delays
    Type: Education - Lecture
    Date: Thursday, February 25, 2010
    Time: 7:00pm - 9:00pm
    Location: Wycoff Wellness Center

    Description"Simplify your Parenting" aims to make parenting a child with autism or other developmental delays EASIER. Based on the behavioral approach of Relationship Development Intervention, you will learn the simplest and most important change you can make (and your child has to do nothing!). Presented by Horizons Developmental Remediation Center. FREEl.
    Confirmed GuestsThis event has 2 confirmed guestsSee All

    ReplyDelete
  61. This has been a very informative discussion. While we will still continue to primarily use ABA with our 2 year old, I do agree that the social realm and its challenges may not be addressed adequately by ABA (despite the fact that our ABA therapist incorporates lots of NET and incidental teaching). Our son has recently had a burst of language which includes a mix of spontaneous speech and some scripted language that is more rigid. I'd really like to encourage more spontaneity and a fluid back and forth between him and others he interacts with.

    Thanks for the information. This has been enlightening.

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  62. Autistic wisdom, Im glad that I was able to make my point without offense! Anonymous....Im glad that you see the issues abit clearer and wish you much success with your child!
    I think I left lots of info on how to get ahold of me lol so Im here, out in cyberspace if you need me!! :)
    http://autismremediationforourchildren.blogspot.com/


    Kathy

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  63. Anonymous, the key to reducing the echolalia (scripted language) and increasing the spontaneous dialogue and conversation is to give him practice and experience with non-verbal prototypes of unscripted interaction, back-and-forth, between-me-and-you. Make sure you're not over spotlighting gross motor imitation -- because "look at me!" + "do this!" is a prototype for echolalia.

    Something I learned from experience w/ "our" ABA and later RDI.

    GOOD LUCK TO ALL OF YOU! :)

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  64. I think a post I wrote yesterday might give you an idea of how to do this. My daughter used to have massive echolalia. Now, what is left is a focus on her favorite topics, which is her way of stimming. I used to go along with it because, hey, SHE'S FINALLY TALKING.

    Because she is older (20 yo), it took us three years to get to the point of being able to share joint attention and talk about what we are doing and seeing. Some things that help:

    * This takes time but it is so necessary. We developed her nonverbal communication skills that she had as an infant but lost: shifting attention from one thing or person to another, following eye gaze, back and forth interactions with enough variation to increase excitement but not too much to overwhelm, reading my nonverbals for information (nod means yes, shake means no, smile means you're on the right track, frown means somethings not going well, etc.). This foundation is critical.

    * I revamped my communication style trying to stick with nonverbal attention grabbers. If I want her attention, I gasp with surprise or express an emotion. This took time but laughing and looking at the computer now will create enough curiosity that she will walk over to the computer to see what is so funny.

    * I sloooooowed down the pace. Her brain processes more slowly, so when I slow down and give her time to think and process, she feels good about herself and her ability to be a partner. Rushing through things shuts her down and she becomes more mindless and robotic.

    * I try to use declarative language, focusing what I think and observe. When we saw a helicopter preparing to land at the hospital, instead of saying, "What is this?" I said, "Wow!" to give her the opportunity to name the item. She was sharing joint attention but did not speak. Instead of saying, "Where's the helicopter going?", I said, "I wonder where the helicopter is going." That gives her a wider variety of answers she could give. Asking a question usually means there's only one right answer. By being declarative, she has options, "I don't know" or "What do you think?" or "Helicopter, what helicopter?" and so on.

    Of course, in the initial stages of RDI, you overemphasis nonverbals because that needs to happen first developmental. Speaking declaratively and leaving them the option to speak or not to speak paves the way for conversation once the nonverbal foundation is built.

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  65. Looks like I missed the discussion, but AutisticWisdom, I just wanted to say that I 100% agree with you, and I have been involved with RDI programs in the past. Essentially, I see a lot of good theory in the idea behind RDI, but not a lot of application.

    Yes, every child is different, but ask a speech therapist, reading teacher, physical therapist, etc., what they work on in what order during skill development, and they can usually give you at least a general idea of what's appropriate for what age / level. So the shroud of mystery with the 'every child is different' explanation doesn't fly with me. Parents should have a strong idea of where they are, what they will be working on, and where they're going before shelling out thousands for a consultant.

    To me, using declarative language, slowing down, simplifying the environment, etc., are all great, but do not qualify as intense therapy in my book. Again, only my opinion, but I think the bulk of what they do now in RDI could be summarized in a 30 page booklet entitled "Environmental Accommodations to Facilitate Social Learning In Autism". Yes, do slow down and comment more, etc. - but you don't need a 4-5 figure therapy program to dole out that simple advice.

    My experience with RDI programs is that families tend to experience a burst of enthusiasm at the onset and then it kind of peters out after 6-18 months. Once they 'get' what the program has to offer, it seems like there's not always a lot to get out of it after that. How long can you talk about the fact that you're slowing down and exaggerating your expressions, etc.?

    Again, all of this is just my opinion. I have no problem with the program per se, but I worry about families spending tons of money, cutting out other 'competing' therapies, etc., all for the sake of RDI.




    M

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  66. This is the best RDI discussion I've seen so far! my son was diagnosed 6 months ago, we're starting ABA this month, it took this long because we just don't have the financial means to get my son therapy without insurance and the state picking up most of the cost. I think RDI would be a better way to go but there are only 2 RDI consultants in AZ, the cheapest one is $1200/month and I cannot afford that at all, if any one could recommend a consultant for $400 max it would still be kind of a struggle but more do-able so again any consultant recommendations???
    Thank you!!

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  67. As a mom who took both her sons through RDI and now an RDI consultant helping other families...I see that when my name is typed in Google this blog posts comes up :)'here are two of my blogs-
    www.whatisrdi.blogspot.com and www.autismremediationforourchildren.com

    Kathy Darrow

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  68. My experience with RDI programs is that families tend to experience a burst of enthusiasm at the onset and then it kind of peters out after 6-18 months. Once they 'get' what the program has to offer, it seems like there's not always a lot to get out of it after that. How long can you talk about the fact that you're slowing down and exaggerating your expressions, etc.?

    Dear Anonymous, this is just the beginning steps of the program..I assure you if you stuck with it then each objective would of taken your child through missed specific developmental milestones. Declarative language and slowing down pace just PREPARES you for the real job of restoring milestones!
    Kathy

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