Open Letter to ASHA from The I&I Guys

Re: [TIME SENSITIVE] ASHA Policy Statement on RPM

My name is Thomas Pruyn and I am a nonspeaking autistic who uses spelling to communicate.

I am Ryan McMahon and I am a nonspeaking autistic who uses spelling to communicate.

Like many other nonspeaking autistics, I, Ian Nordling, have found my voice by spelling on a letterboard to communicate.

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Tom: We are a group of young adults who have undergone various tests, interventions, techniques and methods all trying to fix something that was purportedly broken.

Ian: The many other therapies fall short as they do not necessarily meet the basic need for meaningful communication. Do not limit my expression to a handful of pictures or icons. I have so much more to share.

Ryan: When one experiences apraxia, which is the difficulty connecting brain and body and executing purposeful motor, and is given tests using or requiring fine motor skills to measure intellectual ability he will undoubtedly fail. How valid can the results be?

Tom: My life is different because my body is wired differently than yours. However, my brain is bright. I have emotions and a thirst for knowledge, relationships, and to lead a life that is fulfilling.

Ian: Our story is not unique to us. We are a group of friends but more pertinent to the proposal, we are nonspeaking people who need a letterboard to communicate.

Tom: Being able to express ourselves reliably requires a letterboard and a trained communication and regulation partner.

Ryan: We deserve to have a voice. Stopping proper research through an attempt to discredit methods that use letterboards means people like me must speak louder than ever.

Tom: We write to you to implore you to consider the extremely negative impact of this proposal. Using the letterboard has allowed me to show my intelligence, to participate in the activities that guys my age enjoy like family game nights and intellectual conversations, and more importantly, to share my needs, wants, and dreams.

Ian: Like most people, I just need the basics to live. I need communication to live a life of autonomy. It is as important as food and water.

Ryan: It is most important to realize that this proposal promotes exclusion.

Tom: We ask you to reject the proposal and stand by those with motor, sensory, and communication differences. Include us. Accept us. Hear us.

Sincerely,

Ian Nordling, Thomas Pruyn, and Ryan McMahon

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5 thoughts on “Open Letter to ASHA from The I&I Guys

  1. To whom it may concern,

    Dearest all, THANK YOU for sending me this email. I am profoundly proud of the eloquent, gifted and outstanding guys that wrote this to ASHA. As a SLP for 20-years, I can attest to you all and everyone, that RPM has been the most effective technique that I have ever learned and used with my beloved clients with all types of needs (non-verbal, limited verbal, oral-expressive, apraxic, dyspraxic, prosodic, etc. the list goes on!). I wrote to ASHA to protest and oppose their ridiculous, inadequate, unprofessional, unsubstantiated and unethical proposal, however, my letter was not as touching and impressive as yours. I will rescind my ASHA membership if this proposal goes into effect. I am with you all one hundred percent. Please keep up the good work. Let’s fight for what is right!

    Best regards always,

    Vanessa M. Tapia, M.S., CCC-SLP

  2. The position statement by the ASHA against the use of RPM as a therapeutic tool seems to me to be a situation of throwing out the baby with the bathwater. Like anything else, there may be facilitators who are either poorly trained or overly enthusiastic who may be doing excessive prompting, but there are most likely a larger majority who are not. My grandson spent many years working with speech therapists with very frustrating results. On his own, he decided not to attempt to speak anymore. RPM has provided him with a voice to communicate and further his education and join a group of colleagues who support each other. There is no cure-all or one-size-fits-all remedy to enable these children to communicate and express their thoughts. But if RPM works well for some, it should be part of the toolkit available to professional therapists and sanctioned by ASHA.

    Elliot B. Koffman, PhD

  3. Am very moved by this letter and Vanessa’s comment. I have seen the world open to my son who needs an avenue to communicate. Please know that there are many of us who benefit from this method and take the time to understand how it works properly in the lives of non speaking persons.

    Nancy Porter, Parent of 16 year old son who has a wonderful vocabulary

  4. “Needs” obviously includes medical care and other open letters to ASHA have made mention of medical care needs, including life-saving medical care needs unknown to others without the use of a letterboard. I am trying to accumulate such information in cooperation with others to prepare a positive public article about such important benefits of FC and RPM. I am the father of a 46 year-old son Ben who does not speak at all and was diagnosed with autism as a young child. My son Ben was introduced to Facilitated Communication in February 1991 at age 19. I have asked others to contact me by private email, on a strictly confidential basis and so far two persons have contacted me by email at golden.arthur@gmail.com

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