If you read this blog and my posts on BlogHer, you know I consider Rethink Autism's "web-based autism treatment platform for parents and professionals" an incredibly useful and long-needed addition to the autism and education fields.
What you may not know is that I am a former software producer, and so am floored by the scale of Rethink Autism's production effort, and its resulting product quality. I could tell that Rethink Autism is a truly content-rich, dynamic, and flexible learning resource for autism families and professionals, but I wanted to know more about the process and philosophy behind the site: How was it developed, and why? How does the team decide what kind of lessons to include? Who are they planning to reach, and how will they make it more accessible to families with financial and language concerns?
Fortunately for me and for you, Jamie Pagliaro from Rethink Autism agreed to answer these questions, and more. Please do leave a comment if you have a question of your own, or would like clarification.
Can you tell us, briefly, why Rethink Autism was founded? Who was the primary team? What are your primary goals? Who are you trying to reach?
The mission of rethink autism is to offer parents and educators immediate access to effective and affordable Applied Behavior Analysis-based intervention tools for the growing population affected by autism spectrum disorders. Our core team has expertise in three main areas: clinical, technology, and filmmaking.
I have personally worked in the field of autism education for the past fifteen years, most recently as Executive Director of a public charter for children with autism in New York (the New York Center for Autism Charter School). During that time, I have been faced with many desperate parents trying to gain access to services, and many educators struggling to appropriately meet the needs of children with autism. With growing numbers of newly diagnosed children, the task ahead for policy makers and the professional community is even more daunting. For parents, this means longer wait lists, more diluted funds, and limited access to experts. What compelled me to join Rethink Autism was the idea of making research-based treatment tools accessible to everyone -- not just a select few -- in a cost-effective way.
Simply put, our goal is reach as many children with autism [as we can] through parent and organizational subscribers. We currently have individual parent subscribers around the globe. Some are in rural areas working with limited access to professional support, while others have professional support and are using the system to coordinate treatment across team members. We also have a number of organizational users across the country, including public school districts, early intervention providers, and nonprofit service agencies. They are using our platform to enhance their staff training, curriculum planning, and outcome monitoring. We are committed to keeping all of our users on the cutting edge of autism treatment research.
Can you tell us the scale of the Rethink Autism effort, and how long it took to build content and develop the site?
The entire site and its content were developed in one year. This was a tremendous undertaking that took a team of committed professionals on the clinical, technology, and filmmaking fronts. On the clinical side, we worked with about forty families in NYC who brought their children with autism in for filming sessions with our therapists on a weekly basis. During the year, we filmed thousands of hours of therapeutic sessions, each one carefully planned to help us create our 400+ training and lesson videos.
Our clinical team was also fully integrated into the filmmaking aspect, working with our production team to coordinate shoots, and edit each session. In fact, each lesson video was reviewed for clinical integrity by at least three separate clinicians. Our senior clinical advisor, Dr. Bridget Taylor, personally worked with our therapists to plan each lesson before filming, and reviewed each lesson for clinical integrity as a final checkpoint before adding it to our library.
In parallel, we designed the website interface to be aesthetically pleasing and incredibly user friendly. The families that we worked with also helped us test the interface at every step of development. For this reason, we are proud to say it has been parent tested and approved! It is also worth noting that thanks to their insights and suggestions for improvements on the design, using the website requires no formal training, explanation, or manual once you log on.
Do you plan to keep expanding the content and curriculum? If so, via existing plans or community feedback?
Absolutely! One of the aspects of this project that attracted me was the opportunity to continuously evolve and develop new content. And because we are web-based, this happens seamlessly for our users (i.e., they don’t need to buy or download anything new -- it’s added automatically!).
We are creating new content in our production studio every week. The ideas come from parent requests for specific lessons, suggestions from our scientific advisors, and plans that we have developed internally for curriculum expansion. For example, a few weeks ago a parent asked us about getting her son to tolerate wearing a band-aid. We developed a lesson to teach this, filmed it, and within two weeks added the lesson to our site. We also spent some time with one of our scientific advisors earlier this summer, Dr. Peter Gerhardt from the Organization for Autism Research, and he worked with us on developing new content for adolescents (e.g., pre-vocational and self-care skills) and higher functioning children with autism.
Sections of the site are freely available/not password protected, e.g., the sections on general autism information and advice. Do you have plans to expand those sections as well?
Yes -- in fact this September we rolled out a series of free back-to-school webinars, which included live chat with our senior clinical advisor, Dr. Bridget Taylor. There was also a free back-to-school tips video that accompanied the webinar. The response to this was overwhelmingly positive, so we will be doing additional free “tips” videos and live webinars on a monthly basis. Coming soon is Participating in Social Events, and later this fall we will have two special webinars on Managing Problem Behavior at Home and an Orientation to Parents of Newly Diagnosed Children. The later we are doing in conjunction with our friends at Autism Speaks.
How does email support work? Do you have behavioralists on staff to answer email queries, a professional customer support staff, or a combination?
We have a team of committed clinicians on staff to respond to parent questions regarding use of our curriculum. They are led by a PhD-level Behavior Analyst, and all of them have significant experience working with children with autism at home and in school programs. We want to be clear that we cannot offer formal clinical recommendations to families, as we do not come out to directly observe or work with your child. However, the Curriculum Support we offer has been an invaluable resource to many families working with limited or no professional support at home. All of the Curriculum Support is done via email, and we always respond within 24 hours during the week.
Rethink Autism is currently available in English. Do you have plans to translate the site and content into other languages? (As a former software producer for content-heavy products like world atlases, I understand the massive scale of a localization effort. But I also live in California, and constantly see families affected by autism falling through the cracks due to language barriers.)
Our goal is to begin translating into Spanish next year (2010). We recognize the need for translation, and have already had requests from individual families and organizations throughout the world. Once we have a critical mass of English-speaking users, we hope to deploy more resources into this international dissemination effort. As you have noted, this is a massive undertaking due to the amount of video content we currently have, and would therefore need to translate.
Do you plan to offer a sliding scale or scholarships for families and institutions in need? The $100/month personal subscription exceeds many autism families' budgets, especially during current financial tough times.
We fully recognize that there are many families in need, and our commitment is to making Rethink Autism accessible and affordable to as many of those families as possible. One of our goals is to be a self-sustaining company that keeps the cost of a monthly subscription at a level roughly equivalent to one hour of professional consultation. In the future, as our company grows we hope to offer subscription assistance to low income families, and have started to engage local and national nonprofit organizations about this. We have already donated free content to a number of these organizations as a way to support them in the short-term.
Rethink Autism has already hosted webinars, as well as live chats with professionals like Dr. Bridget Taylor. Are there any plans to host live, IRL seminars or conferences?
We are actively considering many different options, including live seminars. We already attend and exhibit at a number of national conferences in an effort to raise awareness about Rethink Autism. In the coming months we will be exhibiting at:
- Autism NJ conference in Atlantic City, NJ (Oct. 8-10)
- American Academy of Pediatrics conference in Washington, D.C. (Oct. 16-18)
- Organization for Autism Research conference in Arlington, VA (Oct. 22-24)
- NY State Association for Behavior Analysis conference in Albany, NY (Nov. 4-6)
- National Autism Association conference in Weston, FL (Nov. 12-13),
- OCALI conference in Columbus, OH (Nov. 17-19).
We are also continuing with the Free Live Webinars this fall, and will be sure to keep you posted!