Howard Shane

Last updated
Howard C. Shane
Howard Shane.png
Shane at Boston Children's Hospital
Born
Leominster, Massachusetts
NationalityAmerican
Alma materUniversity of Massachusetts at Amherst
Occupation(s)Speech pathologist, researcher, author, professor
Medical career
FieldSpeech pathology
InstitutionsCenter for Communication Enhancement at Boston Children's Hospital
Sub-specialtiesCommunication enhancement for the disabled
Website childrenshospital.org/researchers/howard-shane

Howard C. Shane is director of the Autism Language Program and Communication Enhancement Program at Children's Hospital in Boston, Massachusetts, [1] former director of the Institute on Applied Technology, [2] and associate professor at Harvard Medical School. He is internationally known for his research and development of augmented and alternative communication systems to support the communication needs of people with neuromuscular disorders, autism and other disabilities. [3] [4]

Contents

Education

Shane graduated from the University of Massachusetts at Amherst in 1969 with a B.A. in sociology. [5] He went on to earn an M.A. in speech pathology and audiology in 1972 (also from the University of Massachusetts) [5] and a PhD in speech pathology in 1975 from Syracuse University. [3] He completed a doctoral fellowship in 1975 at the Mayo Clinic. [3] [5] [6] [4]

Career

Howard Shane - 2014 Photo of Howard Shane.png
Howard Shane – 2014

Shane began his career as an assistant professor of communication sciences at the University of Vermont in Burlington, Vermont (1975–1977). [6] He served as associate professor at Emerson College, Department of Communication Studies, (1977–1995), and visiting associate professor for the University of Massachusetts (1985–1990). [6] Shane was an assistant professor at Harvard Medical School's Department of Otology and Laryngology (1986–1995) before becoming an associate professor (1996–present). [3] [6] Shane is also a professor of communication science and disorders at MGH Institute of Health Professions (1997–present). [5] In 1977, Shane was appointed associate scientist of otolaryngology at Boston Children's Hospital. [3] [6]

Also in 1977, Shane was appointed the director of speech pathology and audiology at the Developmental Evaluation Clinic [6] at Children's Hospital Boston. [1] and held that position until 1991. In 1985, he was appointed director of the Communication Enhancement Center (CED), the augmentative communication program, at Boston Children's Hospital. In 2005, he assumed leadership of the Center for Communication Enhancement (which encompassed the old CEC and five other programs), a role he continues to hold as of February 2016. [3] [6]

For his lifetime achievements at Boston Children's Hospital, Shane was awarded the Center for Communication Enhancement's inaugural Directorship Chair in 2015. The endowed Chair, which will be named for him in future, is funded by the Boston Children's Hospital Otolaryngologic Foundation. [7]

"Whether it be wheelchair mounted computers, finger-touch computer screens, voice banking prior to a procedure that takes away a child's ability to speak, or computer software applications, Dr. Shane has enabled thousands of children to communicate with the world around them."

— Michael J. Cunningham, Otolaryngologist-in-Chief and the Gerald B. Healy Chair in Pediatric Otolaryngology at Boston Children's Hospital [7]

Communication and technology

Shane has spent much of his career researching and developing assistive technologies that support children and adults, including Stephen Hawking, [8] [9] [10] whose ability to communicate in spoken or written language forms is "limited by autism, cerebral palsy, language disorders, spinal cord injuries, or neuromuscular diseases." [10] The systems have become so refined that a person does not need dexterity to activate a computer on their own and select letters, words or pre-programmed phrases from a screen. Small muscle movements suffice. Finger twitches, head nods and eye blinks, as well as the spoken voice for those with that ability, are all that is required for individuals to communicate independently. [10] [11]

If we can find some movement a person can control to use the computer, then we're on our way.

— Howard Shane [10]

Touch 'N Speak

In 1983, [6] Shane directed a program through his Institute on Technology to create technology solutions for students at Boston College. Other team members included Allen Field from Boston Children's Hospital [ citation needed ], Katharyn Dawson, a speech and language pathologist, and Don Ricciato, principal of the school. The team was dedicated to designing and implementing teaching tools to assist people who were unable to speak in their efforts to communicate. The school worked with students whose ages ranged from 10 to 25 and who exhibited a wide range of neurological, physical and intellectual challenges. [1]

This collaboration led to the creation of Touch 'N Speak, a software program that allowed students to use movement (i.e., of an elbow or head), to activate touch-sensitivity keyboards to access pre-programmed messages and activate a vocal mechanism. [1] This also marked the first time that a computer (an Apple IIe) was successfully mounted on a wheelchair. [12] Ground-breaking at the time, this was one of the first innovations in the field of "augmentative communication," recognized as a valid form of communication by the American Speech–Language–Hearing Association in 1981. [1]

Microsystems Software

In 1989, Shane consulted with the programmers of Microsystems Software Inc., a company owned by Richard and Deborah Gorgens to develop software packages to assist people with disabilities in their efforts to participate in the workplace. The result was HandiWare, a collection of computer programs that ran on IBM-compatible PCs and sought to assist people with "physical impairments, visual impairments and those individuals requiring computer-aided speech." [13] HandiChat, targeted for people with speech impairments, allowed individuals to type on a keyboard and have their words spoken through a DECtalk speech synthesizer. HandiWord, a "word prediction program", was responsive to individuals' most frequently used words and finished spelling out words based on the first few letters. At the time these programs were being introduced, the Americans with Disabilities Act was newly enacted. Communication technologies like HandiWare enabled individuals who had not worked in 10–15 years because of their communication difficulties return to and become productive members of the work place. [2] [13] [14]

Starbright World

In 1995, a computer-generated play world called Starbright World was made available to the children's hospital, as well as other hospitals in New York, Pittsburgh and California, that allowed patients to connect through cyberspace. Starbright World, an interactive network financed by Steven Spielberg, was intended to help patients with serious and chronic illnesses escape in the world of play and, if desired, connect with others facing the same kind of diagnosis and treatment. Initially, access to Starbright World relied on a child's ability to use a mouse or type on a keyboard. Shane and his team worked to find alternate navigation techniques for children whose motor skills were impaired or for those who did not yet have the required computer skills. [15]

Monarch School

In 2002, the Monarch School for Autism, in Shaker Heights, Ohio, began a collaboration with Boston Children's Hospital, and MGH Institute of Health Professionals to support children with autism in their use of communication and development of life skills. The Monarch School for Autism, an intensive one-one-one, language-enrichment program, was the first of its kind in Ohio, serving only children with autism whose needs are often under-served in the public school system. At the time, Shane had more than 30 years experience assisting people with autism and, as a result, had developed computer software specifically designed to "boost verbal communication skills" using visual information. The focus of the collaboration, headed by Shane, was to develop a curriculum using the software and other complimentary technologies reliant on visual cuing that could serve as a model for educational programs throughout the U.S. [16]

We're giving them [students with autism] the ability to express themselves through a medium that is an effective one for them and to reduce the frustration associated with their difficulties in communicating.

— Howard Shane [16]

Visual Immersion System

Shane led a team to develop the Visual Immersion System (VIS), a visual curriculum to support the communication needs of people with disabilities. [17] The curriculum makes use of communication technology, including the iPad, which allows people with autism to engage in visual activities that aid in the development of language skills. [18] The effectiveness of the program is currently under study, with clinical evidence "still emerging," but, as Shane states, "the excitement and interest in these technologies exist because they are working." [19]

QuickPic AAC

With Christina Yu (Boston Children's Hospital) and Human–computer interaction scientist Mauricio Fontana de Vargas, Shane created the first artificial intelligence augmentative and alternative communication application for autistic users. QuickPic greatly accelerates the generation of vocabulary sets relevant to a given image, a useful tool used by speech language pathologists to teach grammar. [20]

Facilitated Communication

Facilitated Communication (FC), popularized in the early 1990s in the United States by Douglas Biklen, [21] is an alleged communication technique in which the facilitator (usually a parent, educator, or caregiver) holds the hand, shoulder or arm of a person with disabilities in order to type on a paper letter board or mechanical keyboard. [22]

In an interview with Susan Gerbic, Shane says that he first learned of FC in Sweden, when he attended an International Society for Augmentative and Alternative Communication (ISAAC) conference where Rosemary Crossley gave a speech. [23] He questioned claims from promoters that individuals with severe disabilities, some as young as 5 or 6 years old, without formal training in reading or written language could produce messages that included "perfectly spelled sentences" and whether or not the communications were originating from the children or the adult facilitators. [21] [24] On the 1993 Frontline show, Prisoners of Silence, produced by Jon Palfreman, Shane questioned the sophistication of the sentences being typed using FC. Students, with the help of facilitators, were typing out grammatically correct and accurately spelled sentences that, according to Shane, held "insights that go far beyond their years." [25] Proponents maintained that these children learned language and written language skills by being "immersed in language-rich environments." [25]

Already versed in communications technology that allowed people with autism and a wide range of physical disabilities to communicate independently and without someone else's touch, [25] [26] Shane criticized FC as "bogus nonsense" [27] and "a complete waste of time." [28]

"It (Facilitated Communication) is not an accepted clinical practice and many associations have written it off because of its unreliability."

— Howard Shane [24]

Shane became involved with FC further when he was called as an expert witness in a court case. The parents were accused of sexual abuse through facilitator Janyce Boynton who using FC with their autistic child. [29] [23] Shane established simple double-blind protocols to test the validity of the message and determine authorship of the messages. The results indicated that not only was the child incapable of typing out the messages, the content produced was based on facilitator's knowledge of the materials presented. [22] [25] In Facilitated Communication: The Clinical and Social Phenomenon, [30] Shane outlines a "wide range of tasks and procedures," that practitioners can use to establish the source of the facilitated messages. [31] Since that first court case, Shane has continued to serve as an expert witness with the results, to date, always the same. [24] [32] [33] [34] Rather than support people with autism in their efforts to communication, FC, according to Shane is "hurtful and harmful" and deprives "children of their right to independently communicate." [35] Facilitator Boynton, realizing she had been the one doing the communication pressured her school administration to err on the side of caution and end the practice of FC. Over the years Shane kept in touch with Boynton and continued to encourage her to speak out about FC. [29]

Shane believes that FC messages originate from facilitators who "subconsciously guide the hands and fingers of people they are assigned to help." [22] [25] [32] via the ideomotor phenomenon. [36] With regard to the ideomotor phenomenon and FC, the facilitators become so absorbed in the typing process, they are unaware of their own movements while holding onto their disabled communication partner. Shane stated on Prisoners of Silence:

You can't be a one-finger typist and not look at the keyboard. You just can't get oriented. You don't have a home position. And when you watch children who are F/C – facilitated communication – users, they may not be looking at the language board, but the facilitators are not taking their eyes off it. They're fixed on it. [25]

Critics of Shane's stance on FC claim that testing is unfair to the person with disabilities who, they claim, might exhibit test anxiety or "freeze in their ability to respond." [21]

Donald P. Oswald, who reviewed The Facilitated Communication: Clinical and Social Phemenon, [30] praised the book for its "valuable perspectives on the FC story," citing chapters written by Jon Palfreman, Gina Green, Wolf Wolfensberger, Barry Prizant, and Shane that provide a "preliminary retrospective of the FC fad in the United States," but criticized the book for its sometimes "dispassionate discourse." He wrote:

The authors in this work occasionally reveal the personal distress they have experienced and as a result, at times the tone of their writing is defensive or aggressive. Nonetheless, this book offers valuable perspectives on the FC story and, depending on the reader's personal position, will stimulate, enlighten and, at times, enrage. [31]

Supporters of FC state that often people start out using a facilitator and eventually learn to type without physical support. Shane responded by saying '"If someone’s going to be a typist, they don’t need somebody to facilitate them."' [37]

Memberships and appointments

Conferences and summits

Awards and honors

Select books

Select articles

Related Research Articles

<span class="mw-page-title-main">Assistive technology</span> Assistive devices for people with disabilities

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Diagnoses of autism have become more frequent since the 1980s, which has led to various controversies about both the cause of autism and the nature of the diagnoses themselves. Whether autism has mainly a genetic or developmental cause, and the degree of coincidence between autism and intellectual disability, are all matters of current scientific controversy as well as inquiry. There is also more sociopolitical debate as to whether autism should be considered a disability on its own.

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<span class="mw-page-title-main">Augmentative and alternative communication</span> Techniques used for those with communication impairments

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The rapid prompting method (RPM) is a pseudoscientific technique that attempts to aid communication by people with autism or other disabilities to communicate through pointing, typing, or writing. Also known as Spelling to Communicate, it is closely related to the scientifically discredited technique facilitated communication (FC). Practitioners of RPM have failed to assess the issue of message agency using simple and direct scientific methodologies, saying that doing so would be stigmatizing and that allowing scientific criticisms of the technique robs people with autism of their right to communicate. The American Speech-Language-Hearing Association has issued a statement opposing the practice of RPM.

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Soma Mukhopadhyay is an Indian educator and the creator of Rapid Prompting Method. Her use of RPM with her autistic son Tito Mukhopadhyay garnered media attention in America in the late 1990s and early 2000s.

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Deaf and hard of hearing individuals with additional disabilities are referred to as "Deaf Plus" or "Deaf+". Deaf children with one or more co-occurring disabilities could also be referred to as hearing loss plus additional disabilities or Deafness and Diversity (D.A.D.). About 40–50% of deaf children experience one or more additional disabilities, with learning disabilities, intellectual disabilities, autism spectrum disorder (ASD), and visual impairments being the four most concomitant disabilities. Approximately 7–8% of deaf children have a learning disability. Deaf plus individuals utilize various language modalities to best fit their communication needs.

References

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  36. 1 2 Burgess, Cheryl A.; Kirsch, Irving; Shane, Howard; Graham, Steven M.; Bacon, Alyson (January 1998). "Facilitated Communication as an Ideomotor Response". Psychological Science. 9 (1): 71–74. doi:10.1111/1467-9280.00013. JSTOR   40063250. S2CID   145631775.
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  47. ↑ Shane, Howard C.; Weiss-Kapp, Sharon (November 1, 2007). Visual Language in Autism. San Diego, CA: Plural Publishing, Inc. ISBN   978-1-59756-063-4. Archived from the original on 13 March 2016. Retrieved 23 January 2016.
  48. ↑ Kenna, Margaret A.; Shane, Howard C.; Woolf, Alan D. (January 15, 2001). The Children's Hospital Guide to Your Child's Health and Development. Da Capo Press. ISBN   978-0-738-20241-9.
  49. ↑ Lilienfeld, Scott O.; Marshall, Julia; Todd, James T.; Shane, Howard C. (February 2, 2015). "The Persistence of Fad Interventions in the Face of Negative Scientific Evidence: Facilitated Communication for Autism as a Case Example". Evidence-Based Communication Assessment and Intervention. 8 (2): 62–101. doi:10.1080/17489539.2014.976332. S2CID   145366255.
  50. ↑ Shane, Howard; Laubscher, Emily; Schlosser, Ralf; Flynn, Suzanne; Sorce, James; Abramson, Jennifer (June 2012). "Applying Technology to Visually Support Language and Communication in Individuals with Autism Spectrum Disorders". Journal of Autism and Developmental Disorders. 42 (6): 1228–1235. doi:10.1007/s10803-011-1304-z. PMID   21691867. S2CID   33918002.
  51. ↑ Shane, Howard C.; Blackstone, Sarah; Vanderheiden, Gregg; Williams, Michael; DeRuyter, Frank (March 8, 2012). "Using AAC Technology to Access the World". Assistive Technology. 24 (1): 3–13. doi:10.1080/10400435.2011.648716. PMID   22590795. S2CID   21918427.
  52. ↑ Schlosser, Ralf; Shane, Howard C.; Sorce, James; Koul, Rajinder; Bloomfield, Emma Frances; Debrowski, Lisa (December 2011). "Animation of Graphic Symbols Representing Verbs and Prepositions: Effects on Transparency, Name Agreement and Identification". Journal of Speech, Language, and Hearing Research. 55 (2): 342–358. doi:10.1044/1092-4388(2011/10-0164). PMID   22207700 . Retrieved 23 January 2016.
  53. ↑ Gosnell, Jessica; Costello, John; Shane, Howard (April 2011). "There Isn't Always an App for That!". Perspectives on Augmentative and Alternative Communication. 20: 7–8. doi:10.1044/aac20.1.7.
  54. ↑ Shane, H.C.; O'Brien, M.; Sorce, J. (December 2009). "Use of a visual graphic language system to support communication for persons on the autism spectrum". Perspectives on Augmentative and Alternative Communication. 18 (4): 130–136. doi:10.1044/aac18.4.130 . Retrieved 31 January 2016.
  55. ↑ Shane, Howard C.; Albert, Patti Ducoff (September 2008). "Electronic Screen Media for Persons with Autism Spectrum Disorders: Results of a Survey". Journal of Autism and Developmental Disorders. 38 (8): 1499–1508. doi:10.1007/s10803-007-0527-5. PMID   18293074. S2CID   26713115.
  56. ↑ Shane, Howard C. (1985). "Selection of Augmentative Communication Systems: American Speech-Language-Hearing Association". In Cherow, Evelyn; Matkin, Noel D.; Trybus, Raymond J. (eds.). Hearing-Impaired Children and Youth with Developmental Disabilities: An Interdisciplinary Foundation for Service. Washington, D.C.: Gallaudet College Press. pp.  270–292. ISBN   978-0-913-58097-4.
  57. ↑ Shane, Howard C. (1981). "Decision Making in Early Augmentative Communication System Use". In Schiefelbusch, Richard L.; Bricker, Diane D.; Hoyt, Robert (eds.). Early Language: Acquisition and Intervention. Baltimore, MD: University Park Press. pp. 389–425.
  58. ↑ Shane, Howard C.; Bashir, Anthony S. (August 1980). "Election Criteria for the Adoption of an Augmentative Communication System: Preliminary Considerations". Journal of Speech and Hearing Disorders. 45 (3): 408–414. doi:10.1044/jshd.4503.408. PMID   6447823.
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