My husband and I recently watched the documentary A Mother's Courage: Talking Back to Autism. It is the touching story of a family who live in Iceland seeking more information and help for their youngest son, Keli, who is severely affected by autism. Keli's mother, Margret Dagmar Ericsdottir, a movie producer, sets out to film her journey so that she can share it with us. She visits many experts in Europe and the United States. Among these, she interviews Temple Grandin, who was diagnosed with autism and is now a Professor of Animal Science in CO and an autism author and advocate. Among other researchers she meets Dr. David G. Amaral who is the Director of Research at the Davis MIND institute in CA. Eventually, she finds Soma Mukhopadhyay who worked with her own autistic son in India and developed the Rapid Prompting Method (RPM) - a unique style of education and communication through tearing paper, writing, and pointing. Soma founded HALO in Austin, TX, where she continues to refine her methods and teach them to others. Along the way Mrs. Ericsdottir meets other parents whose non-verbal children were helped by RPM. They are able to use letter boards and electronic augmentive communication devices to express their thoughts and demonstrate their ability to learn in spite of all of their challenges. The movie itself is quite moving. One cannot help but love Keli and root for him as he begins to use RPM to communicate with Soma and his mother. Director Fridrik Thor Fridriksson is masterful in his use of dramatic cinematography to weave the tale of the mother's journey with the son's progress. Images from Iceland's rugged and beautiful scenery give some physical sense to the treacherous path this family must walk. I like that the film just tells this family's story without getting caught up in any of the controversies that surround autism (and there are many); yet it also gives a level-headed description of the various challenges that individuals with autism face. In this way it is a great awareness tool, particularly for families and friends of an individual who is non-verbal.
That is not to say the film is not controversial. I know there is some debate regarding the use of facilitated communication (FC) which looks at least on the surface like RPM. This article nicely summarizes the pitfalls of FC. The risk for fraud is great. If the facilitator knowingly or unknowingly guides the communication of the non-verbal individual then no true communication has occurred. If false information is passed it could be damaging to the affected individual or their family or caregivers. RPM is apparently distinct from FC in that no physical support is given to the non-verbal individual as they point or type. HALO has a frequently asked questions page where they explain the differences as they see them between RPM and FC. I haven't had much time to research and delve into this controversy, so I recommend doing your own research. My gut feeling tells me there is certainly space for fraud to occur and that great care should be used when investigating and using such techniques with anyone.
Finally, stories like this always make me wonder...what has happened since it started? The movie was made in 2009. What has happened to Keli since the film was made? I did a little Google searching, and didn't find much direct information, but evidently Keli continues to use RPM to communicate with his family, and to write poetry. Kate Winslet, who narrates much of the documentary, is working together with his family and a group of Hollywood celebrities to publish some of his poems as a way to raise funds and awareness for families affected by non-verbal forms of autism. You can read more about that project, The Golden Hat, here. It is due for release in November 2011 - I am not much of a celebrity-phile, but I'll be watching for this.
This individual story is heart-warming, and the ideas and questions it surfaces will draw in a broad audience. As always your thoughts and comments are welcome.