Autism

HAPPI ACT Helping Autistic Persons Participate Independently (through
All Communication Techniques)

Formerly  AAAC (Alliance for Augmentative and Alternative Communication)

Please visit the HAPPI ACT Website  www.Happiact.org.

Some history

In 1997 I, Phyllis-Terri Gold, Ph.D., along with others, founded  AAAC -  Alliance for Augmentative and Alternative Communication .   Its purpose was to help bring recognition, respect and opportunity for those with autism and others categorized as having Developmental Disabilities, who cannot speak verbally, or not adequately, to communicate with letter boards and computer like devices.  While AAAC was a separate entity, our aims were closely in line with the Syracuse University Facilitated Communication Institute, and with advocates such as DEAL and the like.  In 2005 we changed our name to HAPPI ACT -  Helping Autistic Persons Participate Independently through All Communication Techniques  - thus expanding our aims to include advocating for all forms of communication, including verbal and behavioral, for persons with autism.  Communication means engaging with others effectively; there are many high functioning persons with autism who speak very well but have difficulty with interpersonal communication.

Our viewpoint is that while research is conducted into causations, many persons with autism are locked in silence.  This is  unfair, wrong and unnecessary.  Moreover, we take a different viewpoint about autism from the majority.  We consider that these individuals may be more aptly considered differently-abled than disabled.

History

       In the mid-1970s, Australian educator Rosemary Crossley rediscovered a method of communication which Roz Oppenheim, parent of an autistic child, and others, had come upon previously. Namely, to provide emotional and physical support to persons with autism and others categorized with Developmental Disabilities, who have absent or limited speech, allowing those individuals to communicate by pointing to either pictures, letters to form words, or entire words.  When actual support of the hand or arm of the person communicating is required, that form of Augmentative Alternative Communication (AAC) is termed Facilitated Communication (FC). The person providing the support is called a Facilitator.

       Rosemary's first student to use FC was Anne McDonald, a sixteen year old girl thought to be mentally retarded.  Using FC to communicate, Anne went on to earn her Bachelor's Degree, and the last I heard, was studying for her Master's Degree. She eventually used a computer without hand support, but used FC with her letter board.
 

      Dr. Douglas Biklen, a professor of education at Syracuse University, traveled to Australia to observe Rosemary Crossley's work. As a result, he's credited with bringing the technology to the United States, where he started the Facilitated Communication Institute at Syracuse University.  Through this Institute, many have been taught to communicate with FC, and trained to be Facilitators.  A number of those who began with FC, have become able to communicate without physical support.

       In the 1990 AAC, especially FC, received some very bad media coverage, as well as ridicule and scorn by academia and the scientific establishment.  The majority of facilities that had made FC available to those needing it, removed it from their programs.  They even managed to convince many of the educators and parents who had been facilitators, that the latter had been imagining that FC had worked in the first place.  Pressure was very strong to believe that FC was wrong or invalid.

       There were some of us who continued to believe our own eyes, ears and experiences, and persevered.

       I have been using the technology since 1990 - seventeen years as of 2007; a skeptic upon initial exposure, today I have no doubt in my mind that it is valid, and crucial for many.

       Freedom of speech is a basic human right for us all.  For certain individuals to be cruelly deprived of that right, just because their method of speech differs from ours, is unacceptable.

Present

       In January of 2003, finally three positive presentations of AAC and FC hit national television. The first two featured Tito Mukhopadhay, a fifteen year old boy with autism and his mother, Soma, who taught AAC to Tito and now is teaching it to others. She teaches a form of AAC which she calls RPM, or Rapid Prompting Method. Tito writes independent of hand or arm support. Tito started writing with support and progressed to writing independently. Originally from India, Tito and Soma were brought to the United States in July, 2001, by Portia Iverson, co-founder of a Los Angeles research foundation, Cure Autism Now ( CAN).  Soma taught other children with autism to communicate with these methods, including Ms. Iverson's son, Dov, at the Carousel school which he attends.  Soma now teaches in Arizona under her own company name, Halo.  People have asked me, "Isn't what they're doing amazing!" My answer is that while we might indeed term it amazing, people should understand that it is by no means unique.  There are many individuals throughout the world who previously have done similar and more, and continue to.  What stands out with Tito, Soma and Portia Iverson's son's school, is that they're the first ones, to my knowledge, to receive such favorable media coverage about it. That is unique, and certainly should help toward acceptance of these methods of communication. It turns out that the best proponents of alternative communication are becoming those individuals who use it. They are increasingly making their own case, and doing it very well.

The goals of HAPPI ACT, are:

To help bring all forms of communication, including AAC, into the light, and to encourage its incorporation into schools, programs and residential settings for those individuals, and or their parents/guardians, who desire it.

To cooperate with such facilities regarding the establishment of effective, inclusive and ongoing usage of communication in their programs, and if FC is needed, to provide that on-site and in outreach activities, including excursions, vocational training and during transportation on vehicles.

To offer validation, respect and support for those speakers communicating with AAC, as well as verbal speech.  To document experiences of those using FC, and subsequent benefits from such communications.

We maintain that all experience, including scientific observation, is somewhat subjective and subject to refutation. (If that were not true of scientific research, scientific findings would remain forever undisputed and unchanged, which has not been science's history.)

To work in close cooperation with other oroganizations and individuals with similar views and aims.
 

We are a non-profit corporation by the state of New York. We gratefully accept donations -nothing is too small - to help us carry on our work. Our immediate modest but important goal is to help purchase talking computers and other technology, those specifically made for AAC purposes, for those individuals who cannot qualify for assistance in obtaining them, thus could not otherwise have them (They have come down somewhat in price, but are still expensive). Donations can be mailed payable to Alliance for Augmentative and Alternative Communication (AAAC)  c/o P-T Gold  10 Stirrup Lane  Fort Salonga, NY  11768

There ae a number of websites on AAC/FC.  A few are: DEALat http://home.vicnet.net.au/~dealccinc/welcome.htm 

Syracuse University Facilitated Communication Institute; http://soeweb.syr.edu/the/fci

German sites like http://www.fc-netz.de/fc-netz.htm will be readable only to those who know the language, but it is included to show international support.

We are interested in hearing from you at autism@happiact.org if we are of interest to you. (DEletethis subject  is of interest to you.)

Tax deductible Donations can be mailed to

Happi Act

C/O of P-T Gold

10 Stirrup Lane

Fort Salonga, NY 11768

 We thank you.

 © 2007 Dr. Phyllis-Terri Gold Mindworks Center for the Self ~ 631-269-5330