New hope? RDI: The first of my research.

If it's not new hope then it is certainly something new to research for the Lunatic Autism Mom! This week I interviewed a new provider for Cameron for the Maryland Autism Waiver. I liked what she had to say, I liked her philosophy and I liked her energy. I'm pretty confident in my decision to chose her to take over our waiver services. Additionally she can use some of the waiver funds to provide Relationship Development Intervention (RDI). This is something I have heard in passing for years but I never slowed down long enough to do the research on it. Honestly, it sounded like something that was potentially out of our reach both budget wise and time wise. But with cost help and using time we've already allocated to therapy, it certainly is worth another look! For me, another look means research, research, research. 

The first thing I did was go to RDIconnect.com and I ordered the book: The RDI Book: Forging New Pathways for Autism, Aspergers and PDD with the Relationship Development Intervention Program. I probably won't receive it for a week or so why not check my own library for any mention of this intervention in my current reading list? 

Dr. Sears gives us 2 paragraphs in The Autism Book where he directs us to RDIconnect.com and explains the goal of RDI as, "to correct the core social deficits of Autism. It teaches children to understand the job and value of personal relationships." Dr. Sears goes on to say that this intervention can help moderately affected children and it is ideal for high functioning children, especially those with Asperger's. (pages 151-152)

I am sad to report that a book I recently purchased (It's So Much Work to Be Your Friend: Helping the Child with Learning Disabilities Find Social Success by Richard Lavoie) did not mention RDI at all. I think this book will be very helpful for addressing specific socialization issues that may arise after we've started the intervention. I haven't had a chance to really read this book although I think it is going to be a great reference.   

The last book I pulled from my shelf is Adolescents on the Spectrum: A Parent's Guide to the Cognitive, Social, Physical, and Transition Needs of Teenagers with Autism Spectrum Disorders by Chantal Sicile-Kira (page 229). It tells us that RDI is, 

"a parent-based clinical treatment that begins at each child's level and teaches skills to the next level. Dr. Gutstein has identified six different abilities that are essential for success in dynamic systems: Emotional Referencing, Social Coordination, Declarative Language, Flexible Thinking, Relational Information Processing and Foresight and Hindsight."

Of course no research session is complete without a Google search, Google loves Autism Speaks and pointed me to this great quick reference page with a link to RDIconnect.com for more information. 

http://www.autismspeaks.org/treatment/rdi.php 

(Thanks again Autism Speaks!) 

This week I met with Cindy Lenzy, MS at Connect & Learn here in Frederick, MD. I was fascinated by the science of this intervention. The basic idea as I understood it is that Dr. Gutstein observed that the neural connections within the brain of an Autistic patient are somewhat thin and scattered compared to a "typical" brain where the connection from the Frontal Cortex to the other parts of the brain are thick and direct. 

I likened this to the mathematical idea of distance, the shortest distance between two points is a straight line. If you travel that line again and again you will carve a grove within the earth and will be able to re-trace your path again and again even without directions. 

The other thing about this intervention that stuck with me is that is it parent-based and requires a promise from both parents to attend the meetings, do the homework and to watch the webinars. You are effectively putting everyone "on the same page". Rob is an engineer, I am a mom, our methods are not the same but with this intervention consistency is not just a great idea, it is absolutely necessary.  

Obviously, I am just learning about this therapy, as I learn more, I will share more. If we start the program I will probably chart our progress here. But to get down to the nitty gritty, how much are we talking here? How much time? How much money? 

The estimates I have gathered so far show that the intervention runs between $5,000-6,000 per year with an additional $50/month for access to an online site which provides information and webinars as well as a direct connection with your RDI consultant. This cost is offset by the Maryland Autism Waiver which provides 40 hours per year for "Family Training" of which RDI is considered (but I am unsure if you are able to use ALL 40 hours specifically for RDI, I think it is limited). It is possible that IF you had the Autism Waiver and IF you followed treatment without any breaks for the entire year you could reduce the annual cost down to $1,000-2,000. It is possible to reduce this cost further with normal breaks for vacations and holidays and possibly implement at $0 cost to the family (aside from the web fee which is not covered). 

And I was JUST trying to figure out if the Maryland Autism Waiver was worth all the headaches and problems I've been having this year. I guess it is! Its been a while since I've read about a therapy that I was really excited about. This one looks very goal orientated, family involved and quantifiable; right now that gives me hope that we can help Cameron navigate life with less anxiety, better communication and more happiness.