History of Augmentative & Alternative Communication Technology for People on the Autism Spectrum Disorder

1 Introduction

This article discusses the history of Augmentative and Alternative Communication (AAC) technology for people on the Autism Spectrum Disorder (ASD) and covers: (1) the context around the technology and a description of the technology, (2) the design decisions that have led to its shape, and (3) the consequences of AAC and its future. In order to take a deep dive into its history and these three discussion points, the first step is to define AAC and ASD.

2 Definitions

2.1 What is AAC?

Augmentative and alternative communication refers to a variety of supplemental or replacement methods of communication typically for those who have difficulty with verbal or written language as a result of a physical or mental disability. According to the American Speech-Language-Hearing Association, there are two types of AAC: “aided” and “unaided” (“Augmentative and Alternative Communication”, n.d.). Unaided AAC refers to communication using only your body, including body gestures, body language, facial expressions and sign language. In this paper, the focus is drawn towards aided communication, which have two subtypes: basic and high-tech systems. Basic aided communication systems can be as simple as pen and paper, or pointing to letters, words or pictures on a board (“Augmentative and Alternative Communication”, n.d.). High-tech aided AAC devices, on the other hand, refer to systems like speech-generating devices, like SwiftKey, the one Stephen Hawking uses (“Stephen Hawking — the tech helping…”, 2017).

“Stephen Hawking — the tech helping him talk and write revealed” (2017, September 13).

2.2 What is ASD? — A Brief History

Autism Spectrum Disorder is the standardized and internationally accepted name, effective 2013, for a neurodevelopment disorder according to the Diagnostic and Statistical Manual for Mental Disorders, edition 5 (DSM-V). The current diagnosis criteria are two categories of symptoms: social communication and restricted, repetitive behaviors (American Psychiatric Association, 2013). Under each of these two categories are three severity levels, which influence the treatment or support that is recommended and provided.

American Psychiatric Association. (n.d.). Retrieved March 28, 2018, from https://www.psychiatry.org/psychiatrists/practice/dsm

In contrast with when it was first used in 1911 to describe a symptom of Schizophrenia by Swiss Psychiatrist Eugen Bleuler, it is now considered separate from the schizophrenia spectrum (Bleuler, 1911). ASD had different names in its history and at the very beginning, it wasn’t its own disorder category like it is today. Autism was initially one of the items in a checklist dubbed “4 A’s Rubric” by Bleuler as a way to diagnose Schizophrenia (Moskowitz & Heim, 2011). The other three “A’s” were association, affect, and ambivalence. The next three decades didn’t see much progress on this definition, although in the 1920s electroconvulsive therapy and dietary restrictions were introduced as ways to treat autism (“History of Autism Treatment”, n.d.).

In 1943, American child psychiatrist Leo Kanner described a condition he called “Kanner Syndrome” in which 11 children (8 boys, 3 girls) he studied exhibited “a powerful desire for aloneness” and an “obsessive insistence on persistent sameness” (Sole-Smith, 2017; Kanner, 1943). He later referred to it as “Infantile Autism Disorder”. This disorder was officially added to the third edition of DSM in 1980 (Sole-Smith, 2017). Around the same time Kanner was conducting his studies in the United States, in 1944 Austrian pediatrician Hans Asperger in Germany describes the condition he called “Asperger Syndrome” in which children had similar social difficulties as described by Kanner but noticeably stronger language ability (Asperger, 1944).

In the previous edition of the DSM-IV-TR (Text-Revision) published in 2000, Autistic Disorder and Asperger’s disorder fell under the umbrella term Pervasive Developmental Disorders (PDD) as subsets, among other disorders like Rett’s Disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder — Not Otherwise Specified (PDD-NOS) (“DSM-IV Diagnostic Classifications”, n.d.). In the most recent revision in 2013, these subcategories are now part of the Autism Spectrum Disorder.

3 Context and Content of AAC

AAC Devices hasn’t been around a long time. As a result, it may be useful to discuss some of the technologies that aren’t specifically used to support communication, as a way to explore potential connections between those technologies and how its led to the development of AAC.

3.1 Technology as Treatment for Autism

One of the first ways autism was treated using technology was electroconvulsive therapy (ECT) in the 1920s. Nowadays, ECT is still being administered but in more controlled settings where the risks are minimal and when other treatment methods are unsuccessful (“Electroconvulsive Therapy”, 2018). ECT can often be stigmatized as a result of its history of being used in settings with high electric current and no anesthesia. But under today’s circumstances, it can quickly reverse symptoms of mental illnesses by causing changes in brain chemistry (“Electroconvulsive Therapy”, 2018).

“Stats & Facts About Modern ECT” (2017, May 29). Retrieved March 28, 2018, from https://www.cchrint.org/electroshock/

In the 1970s, Guy Bérnard developed a method he called auditory integration training (AIT), that was claimed to help with clinical depression and suicidal tendencies, as well as improving behavioral tendencies in people with autism (“History of Autism Treatment”, n.d.). In 1992, this method gained popularity as a result of the book Sound of a Miracle, where the author, Annabel Stehli described the improvements of her daughter, who has autism, after receiving AIT (Stehli, 1992). However, due to not meeting scientific standards and little empirical evidence for its effectiveness, many organizations do not recommend its use to treat children with autism (Working Group in AIT, 2004; Committee on Children with Disabilities, 1998)

3.2 Technology as Support for Autism

The world’s current leading provider of AAC devices is Tobii Technology, a Swedish high-technology company that specializes in eye tracking technology. The subsidiaries within Tobii that focus on AAC is DyanVox and Tobii Assistive Technology. Dynavox was founded in 1983 as Sentient Systems Technology by Killiany, Mark Friedman, and Tilden Bennett (Friedman, Kiliany & Dzmura, 1987). The project came out of a student group at Carnegie Mellon University to help a young woman with cerebral palsy to communicate. The system, a speech-generating device called EyeTyper, allowed users to spell out messages with their eyes and dictated the words using a computer voice. The company now has 11 devices in its AAC product line, including 6 symbol-based communicators, like the DynaVox I-12+ below.

Devices. (n.d.). Retrieved March 14, 2018, from https://www.tobiidynavox.com/products/devices/

While DyanVox has been around since 1983, it wasn’t until August 2009, with the introduction of DynaVox Xpress, before it delivered on a solution for individuals specifically with autism (“DynaVox History”, n.d.).

In the 1960s, another major AAC organization called Prentke Romich Company was created with the mission of helping individuals with disabilities (“Prentrom History”, n.d). In 1969, created their first communication device, a system based on the teletype machine. But it wasn’t until 2007 before they introduce the Language Acquisition through Motor Planning (LAMP) language system for those with autism (“Our History”, n.d). In 2009, the company created the Center for AAC & Autism to raise awareness of this language system.

Prentrom Store. (n.d.). Retrieved March 13, 2018, from https://store.prentrom.com/

The product line of devices featured in Prentrom’s store includes Accent 1400, Accent 1000, Accent 800, PriO, and PriO-mini. These devices range from just under $4,000 to around $7,500 US Dollars.

3.3 Social & Political Context that drove Public Awareness

Some of the major movements that drove public awareness and generated more traction on the development of support for people on the Autism Spectrum Disorder was the Disability Rights Movement and the Autism Rights Movement. The disability rights movement began in the United States during the 1960s and concerned issues around attitudinal, environmental and institutional barriers for people with physical, visual and learning disabilities as well as for those who have mental health issues (Frum, 2001; UN World Health Organization, 2011). It was during this time that people with different disabilities came together to fight for a common cause (Bagenstos, 2009). But while those who could readily articulate their needs and self-advocate, those with intellectual disabilities depended largely on friends and family to impact the movement.

As a result of the lack of self-advocacy, many organizations that focus on these issues typically have strong family or friend connections with those who are impacted. One such case is Dr. Bernard Rimland, whose son Mark, born in 1956, was born with autism. At the time, autism was poorly diagnosed and it wasn’t included in the DSM yet. Even Dr. Rimland, whose Ph.D. was in experimental psychology was unfamiliar with the word “autism”. The first two versions of the DSM, first published in 1952, then in 1968, didn’t include autism. But Rimland, motivated to learn more about this condition to better support his son, published his book Infantile Autism: The Syndrome and its Implications for a Neural Theory of Behavior in 1964 (Maugh, 2006). The forward was written by Leo Kanner, which helped establish its credibility and acceptance in the scientific community.

At the time, there was an unproven but widely accepted theory called “refrigerator mothers” by University of Chicago professor Bruno Bettelheim that claimed the lack of love from mothers resulted in regressive autism (Bettelheim, 1967). Bettelheim believed that the elements in the environment around the child cause autism (The Embryo Project Encyclopedia, n.d.). Rimland was the first authority who called into question Bettelheim’s theory. His argument against this theory likely drew attention from parents who might’ve felt discriminated based on their child’s condition. In 1965, Dr. Rimland, Ivar Lovaas, Ruth C. Sullivan and a small group of parents of children with autism established the Autism Society of America (Autism Society History, n.d.). It now has more than 50,000 members and 200 chapters across the United States (Autism Organizations, n.d.).

Rain Man [DVD] [1989]. (n.d.) Retrieved March 28, 2018, from http://www.amazon.co.uk/Rain-Man-DVD-Dustin-Hoffman/dp/B00004VY3E

In 1986, Dr. Rimland served as advisor for Dustin Hoffman when he was filming for his role in Rainman, an American comedy-drama film also starring Tom Cruise (“‘RAIN MAN’ ADVISER $75,000”, 1997). It helped establish worldwide awareness of autism. It is not documented whether Dr. Rimland and the movie Rainman had a role in the revisions of DSM but in 1987, DSM-III-R was published, detailing a checklist of criteria for diagnosing autism (“Autism at 70”, 2012).

4 The Design Decisions that have led to its shape

To create the ideal design of any device, not to mention an AAC device, one should have a clear concept of who the intended human is and in what situations they would be using it. Because autism is still being understood, and its diagnosis only recently been updated, previous AAC devices have likely relied on myriad of trial and error in its design process. Below, two core concepts that influence the design of AAC are discussed: picture communication symbols and language acquisition through motor planning.

4.1 Picture Communication Symbols

Many AAC systems used by those with autism use Picture Communication Symbols (PCS), developed by Mayer-Johnson. Mayer-Johnson was acquired by Dynavox in 2004 and is still used in its existing products. Before PCS, there were two graphic symbol systems for communication called Bliss Symbols and Picsyms. In a study conducted by Mark Mizuko, it was determined that PCS and Picsyms were easier to learn among normally developing 3-year-old children (Mizuko, 1987). One of the key reasons why PCS is popular as a communication tool is that individuals who have developmental disabilities are thought to be strong visual learners (“Teaching the Special Needs Learner”, n.d.). However, according to a recent article in The Conversation (2015), there is growing evidence that picture-based communication systems are effective only for some children with autism.

PCS High Contrast. (n.d.). Retrieved March 14, 2018, from https://mayer-johnson.com/collections/pcs-collections/products/pcs-high-contrast-vol1-cd-win-mac

4.2 Language Acquisition through Motor Planning (LAMP)

Language Acquisition through Motor Planning was first introduced by Prentke Romich Company in 2007 as a framework to help individuals with developmental disabilities develop spontaneous and independent communication (“What is Lamp”, n.d.). It is built upon six main principles: readiness to learn, joint engagement, consistent and unique motor patterns, single words, auditory signals and natural consequences. It is an attempt to cover different aspects of communication when using an AAC as a communication partner so that the device is used to its full potential. For example, as part of the first principle, readiness to learn, partners should assess and match the difficulty of the activity and the state of the individual. When the individual is passive or disinterested, or distracted and, the activity or environment should be modified to best suit the individual.

5 Consequences of AAC and its Future

There are many success stories of children using AAC (“Success Stories”, n.d.; AAC Success Stories/Videos, n.d.). Below, two perspectives are discussed with regards to the future of AAC for those with autism.

5.1 The ECHOES project

In 2012, an interdisciplinary approach to develop technology for autism was developed by Porayska-Pomsta, Frauenberger, Pain et al. (2012). Its design methodology was a combination of Action Research, participatory design and applied AI through an interdisciplinary collaboration. The experts involved come from fields of developmental psychology, visual arts, human-computer interaction, artificial intelligence, education and other cognate disciplines (Porayska-Pomsta et al., 2012).

Porayska-Pomsta, K. (2018, January 09). Retrieved March 28, 2018, from http://www.ucl.ac.uk/ioe/research/featured-research/echoes-project

This interdisciplinary approach was developed within the context of the ECHOES project, whose goal was to develop a technology-enhanced learning environment for both typically develop children and children with ASD. A key aspect of this project was building the technology whilst engaging the users through participatory design. This meant that carers, teachers, parents and sometimes older individuals with autism served as knowledge experts for the design of their technology.

5.2 Microsoft Inclusive Design

As a result of the disability rights movement, there have been attitudinal changes in society towards disability. This is especially apparent in Microsoft’s Inclusive Design manual. Supporting its company mission statement “empowering every person on the planet to achieve more”, its principles of inclusive design draws focus on those with “disability”. Microsoft emphasizes the perspective that “disability”, rather than as a personal attribute, is context dependent (Inclusive Design at Microsoft, n.d.). As defined by the World Health Organization, “Disability is not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives”.

(Inclusive Design at Microsoft, n.d.) Retrieved March 14, 2018, from https://www.microsoft.com/en-us/design/inclusive

6 Conclusions

Three key communities have influenced the past, currently influence the present and will influence the future of autism and the support that are provided for them. First, the scientific and research community, who will continue to advance our knowledge of autism. Second, the community organizations that continue to support families and raise awareness about those affected by autism. Finally, the organizations who have a more open-minded and inclusive perspective that shape the infrastructure and technology of tomorrow, so those with autism aren’t excluded from society.

References

1. AAC Success Stories/Videos. (n.d.). Retrieved March 14, 2018, from https://www.pinterest.com/lasenders/aac-success-storiesvideos/?lp=true
2. American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders (Fifth Edition). American Psychiatric Association. https://doi.org/10.1176/appi.books.9780890425596
3. American Psychiatric Association. (n.d.). Retrieved March 28, 2018, from https://www.psychiatry.org/psychiatrists/practice/dsm
4. Asperger, H. (1944). Die „Autistischen Psychopathen” im Kindesalter. Archiv für psychiatrie und nervenkrankheiten, 117(1), 76–136.
5. Augmentative and Alternative Communication (AAC). (n.d.). Retrieved March 13, 2018, from https://www.asha.org/public/speech/disorders/AAC/
6. Autism at 70 — from Kanner to DSM-5. (2012, July 24). Retrieved March 13, 2018, from https://www.autismspeaks.org/science/science-news/autism-70-%E2%80%93-kanner-dsm-5
7. Autism Organizations. (n.d.). Retrieved March 13, 2018, from http://www.autismkey.com/autism-organizations/
8. Autism Society History. (n.d.). Retrieved March 13, 2018, from http://www.autism-society.org/about-the-autism-society/history/
9. Bagenstos, Samuel (2009). Law and the Contradictions of the Disability Rights Movement. New Haven: Yale University Press. ISBN 978–0–300–12449–1.
10. Bettelheim, B. (1967). The empty fortress: infantile autism and the birth of the self. Free Press. Retrieved from https://books.google.com/books?id=IBsEAQAAIAAJ
11. Bleuler, E. (1911). Dementia praecox, oder Gruppe der Schizophrenien. Leipzig: Deuticke.
12. Committee on Children With Disabilities, American Academy of Pediatrics (1998). “Auditory integration training and facilitated communication for autism”. Pediatrics. 102 (2): 431–3. doi:10.1542/peds.102.2.431. PMID 9685446. Archived from the original on 2009–04–26.Policy reaffirmed May 1, 2006.
13. Devices. (n.d.). Retrieved March 14, 2018, from https://www.tobiidynavox.com/products/devices/
14. DSM-IV Diagnostic Classifications. (n.d.). Retrieved March 13, 2018, from http://www.autism-society.org/dsm-iv-diagnostic-classifications/
15. DynaVox History. (n.d.). Retrieved March 14, 2018, from http://www.dynavoxtech.com/company/history/
16. Electroconvulsive therapy (ECT). (2018, January 16). Retrieved March 13, 2018, from https://www.mayoclinic.org/tests-procedures/electroconvulsive-therapy/about/pac-20393894
17. ERROR COSTS ‘RAIN MAN’ ADVISER $75,000. (1997, August 13). Retrieved March 13, 2018, from https://www.washingtonpost.com/archive/lifestyle/1997/08/13/error-costs-rain-man-adviser-75000/ddeeffba-9aea-4c0d-8acb-325303431961/?utm_term=.8a5812d6b7c6
18. Flannery, B., & Horner, R. (1994). The relationship between predictability and problem behavior for students with severe disabilities. Journal of Behavioral Education, 4, 157–176.
19. Friedman, M. B., Kiliany, G. J., & Dzmura, M. R. (1987). U.S. Patent №4,648,052. Washington, DC: U.S. Patent and Trademark Office.
20. Frum, David (2001). How We Got Here: The ’70s. New York, New York: Basic Books. pp. 250–251. ISBN 0–465–04195–7.
21. History of Autism Treatment. (n.d.). Retrieved March 13, 2018, from https://www.appliedbehavioranalysisprograms.com/history-autism-treatment/#chapter1
22. Inclusive Design at Microsoft. (n.d.). Retrieved March 14, 2018, from https://www.microsoft.com/en-us/design/inclusive
23. Kanner, L. (1943). Autistic disturbances of affective contact. Nervous child, 2(3), 217–250.
24. Mandal, D. A. (2018, February 16). Autism History. Retrieved March 12, 2018, from https://www.news-medical.net/health/Autism-History.aspx
25. Maugh, Thomas (November 26, 2006). “Bernard Rimland, 78; author was the father of modern autism”. Los Angeles Times. Retrieved 15 May 2014.
26. Mizuko, Mark (1987) Transparency and ease of learning of symbols represented by Blissymbols, PCS, and Picsyms, Augmentative and Alternative Communication, 3:3, 129–136, DOI: 10.1080/07434618712331274409
27. Moskowitz, A., & Heim, G. (2011). Eugen Bleuler’s Dementia Praecox or the Group of Schizophrenias (1911): A Centenary Appreciation and Reconsideration. Schizophrenia Bulletin, 37(3), 471–479. https://doi.org/10.1093/schbul/sbr016
28. Mudford OC, Cullen C (2005). “Auditory integration training: a critical review”. In Jacobson JW, Foxx RM, Mulick JA. Controversial Therapies for Developmental Disabilities: Fad, Fashion, and Science in Professional Practice. Routledge. pp. 351–62. ISBN 0–8058–4192-X.
29. NDi Media — A History of Augmentative and Alternative Communication (AAC) Devices — Part 1: The Pioneers. (n.d.). Retrieved March 13, 2018, from http://www.ndimedia.com/a-history-of-augmentative-and-alternative-communication-aac-devices-part-1-the-pioneers/
30. PCS High Contrast. (n.d.). Retrieved March 14, 2018, from https://mayer-johnson.com/collections/pcs-collections/products/pcs-high-contrast-vol1-cd-win-mac
31. Porayska-Pomsta, K., Frauenberger, C., Pain, H. et al. Pers Ubiquit Comput (2012) 16: 117. https://doi.org/10.1007/s00779-011-0384-2
32. Porayska-Pomsta, K. (2018, January 09). ECHOES Project. Retrieved March 28, 2018, from http://www.ucl.ac.uk/ioe/research/featured-research/echoes-project
33. Prentrom History. (n.d.). Retrieved March 13, 2018, from https://www.prentrom.com/our-history
34. Prentrom Store. (n.d.). Retrieved March 13, 2018, from https://store.prentrom.com/
35. Rain Man [DVD] [1989]. (n.d.). Retrieved March 28, 2018, from http://www.amazon.co.uk/Rain-Man-DVD-Dustin-Hoffman/dp/B00004VY3E
36. Sole-Smith, V. (2017, December 06). The History of Autism. Retrieved March 12, 2018, from https://www.parents.com/health/autism/the-history-of-autism/
37. Stats & Facts About Modern ECT. (2017, May 29). Retrieved March 28, 2018, from https://www.cchrint.org/electroshock/
38. Stehli, A. (1992). The sound of a miracle. New York: Avon.
39. Stephen Hawking — the tech helping him talk and write revealed. (2017, September 13). Retrieved March 13, 2018, from https://blog.swiftkey.com/swiftkey-reveals-role-professor-stephen-hawkings-communication-system/
40. Success Stories. (n.d.). Success Stories. Retrieved March 14, 2018, from https://www.aacandautism.com/success?page=1&sortBy=date&sort=desc
41. Teaching the Special Needs Learner: When Words Are Not Enough. (n.d.). Retrieved March 14, 2018, from https://joe.org/joe/2011october/tt4.php
42. The Embryo Project Encyclopedia. (n.d.). Retrieved March 13, 2018, from https://embryo.asu.edu/pages/infantile-autism-syndrome-and-its-implications-neural-theory-behavior-1964-bernard-rimland
43. UN World Health Organization (WHO), World Report on Disability : Summary, 2011, WHO/NMH/VIP/11.01, available at: http://www.refworld.org/docid/50854a322.html [accessed 13 March 2018]
44. What is LAMP? (n.d.). Retrieved March 13, 2018, from https://aacapps.com/lamp/what-is-lamp
45. Working Group in AIT (2004). “Auditory integration training: technical report”(PDF). ASHA Suppl. American Speech-Language-Hearing Association (24): 96–102. Archived from the original (PDF) on 2008–04–07.
46. Wurtzburg, S., & Campbell, L. (1995). North American Indian Sign Language: Evidence of Its Existence before European Contact. International Journal of American Linguistics, 61(2), 153–167. Retrieved from http://www.jstor.org/stable/1265726