Autism, Communication and Family

 

 

 

Autism, Communication, Family & Community

 

Pamela Block (Stony Brook University)

Hope Block

Barbara Kilcup

American Anthropological Association 2009 Meetings

November 21, 2008

(earlier version presented at the June, 2008 

Society for Disability Studies meetings in New York).

All people with autism, but especially non-speakers, face significant challenges in communication, social interaction, and acceptance. Non-speakers are often thought to be low functioning, treated with distain by disabled peers, and infantilized by family and staff. Stigma exists on multiple levels as movement and communication differences locate this group well outside the social norm. Some face additional challenges when the validity of their mode of communication is questioned or rejected outright.

Hope uses supported typing, referred to in the literature as facilitated communication/FC. She types with her mother, Barbara and with some of her staff. When she types, her wrist, arm or elbow is in physical contact with the person helping her. It is not her preferred means to communicate when easier strategies will suffice, such as body language, vocalizations and personal signs. Despite a nerve-wracking fear of a new audience's disbelief, it is in public performance spaces, such as during conference presentations, where she is best able to communicate by typing. She states:

I don’t see things like ordinary people and it feels like I’m out of sync with the rest of the world.  I am thought of as not very smart but I am very intelligent. I am awesome at presenting at conferences but have trouble with conversations.  I don’t know why that is.  It is odd that I have so much trouble talking to people one to one.  Please realize that it is me typing not my mom. I cannot type yet without support. I am perfectly capable of my own thoughts.

Hope, and others who use FC, are often subject to the disbelief of professionals, family and community members. Most recently, just a few weeks ago, a program person with the local Special Olympics team who, to our knowledge has never seen Hope type, informed one of Hope's vocational support staff that "She and Hope go way back and there is *no* way she is typing these messages herself." In our presentation we seek to explore the notion of "independent" communication in family and community life and how belief or disbelief can influence the ability to communicate.

          Autism, when studied in clinical biomedical and educational contexts is too often approached in relation to compliance or noncompliance to complex regimens. Influential researchers with an evidence base of extensive but flawed double-blind studies have deemed supported typing to be invalid and this view has been widely accepted in professional and popular cultural contexts. Anthropologists have weighed in on this debate. When beginning this paper I was pleased to find that two publications on autism authored by anthropologists were available at the public library around the corner from my house. "How wonderful," I thought, "that anthropologists were not only contributing to the literature on autism and obviously getting a wide audience, since these books (I couldn't help but check) were in regular circulation." Indeed Dawn Pince-Hughes' (2005) Songs of a Gorilla Nation and Roy Grinker's (2007) Unstrange Minds, both subjective accounts of autism, family, & community, have greatly influenced this paper. So I was crushed to find, in a single paragraph of his otherwise insightful and well-researched book, anthropologist Roy Grinker summarily dismissing supported typing as a delusion of the facilitator. He provides a single uncited example of facilitated communication interpreted a particular way in one social context – that of an ultra-orthodox Jewish sect where FC is seen as a means to channel divine messages – and leaves the reader to think this example is somehow representative.

          Indeed this research by Bilu & Goodman (1997) find the use of FC in ultra-orthadox Israel communities an interesting interaction between secular/rational and mystical/religious reasoning. The rationalist interpretations consider FC as “circus-like performances” where the “children’s precarious well-being was put at extra risk because of their harsh exposure to the limelight,” (p. 392). Compare this to Hope's earlier assertion that it is in the public presentation space, or in front of even a small group of people where she feels most able to communicate. Yet according to Bilu & Goodman “FC does empower the incapacitated children in a double sense, allegedly improving their communication skills and assigning them a high status as mediums,” (p. 396). Bilu & Goodmen appear to almost, but not quite, consider the possibility that the children may actually be participants and agents in valued and culturally relevant religious practice. Ultimately, their portrayal reveals the pejorative slant concerning not just physical difference (the terms incapacitated, damaged, deranged, deviant, used repeatedly throughout the article, are hardly value neutral) but also religious difference. Bilu & Goodman see the autistic children and other “deviant” entities are vehicles by religious authorities to maintain religious hegemony. They do not consider the possibility that the children may be willing participants in the valued mystical beliefs and practices of their communities. In ultraorthodox communities many ritualistic autistic behaviors, including the practice of FC, are not seen as deviance but as ideally suited for encouraging a mystically holy interaction with the world to which all members of this particular community strive.

          In contrast to the way FC has been represented within anthropology, there is actually a growing body of qualitative and quantitative evidence to support the validity of FC (Biklen 2005, Bara et al. 2001, Cardinal et al. 1996, Niemi & Kärnä-Lin 2002, Rubin et al. 2001, Sheehan & Matuozzi 1996). Recently there have been several insightful examinations of the socio-cultural and historical contexts of supported typing and the process by which individuals, such as Sue Rubin (portrayed in the Oscar-nominated documentary 'Autism is a World') and others, have moved from supported to independent typing (Baggs 2008, Biklen 2005, Rubin et al. 2001). Erevelles (2005) and Kliewer et al. (2006) provide extensive historical analyses of how systemic disbelief in the literacy and intelligence of people with physical differences has lead to organized and often successful attempts to discredit and disenfranchise. Famous examples include eighteenth century slave and poet, Phillis Wheatley, and 19^th century writer Pierre Rivière, and 20^th century writer Helen Keller. Though not anthropologists, Biklen, Kliewer et al., Rubin et al. and Erevelle’s painstaking use of ethnographic, archival, and subjective data are consistent with anthropological methodologies. In addition, their emphasis on questioning established understandings of "truth" maintained by authoritative individuals and systems is consistent with an anthropological emphasis on inclusion and helping groups and individuals previously rendered silent and invisible to "voice". My coauthors and I seek to correct misrepresentations and exclusions within the anthropological literature and to better understand the experience of autism by moving beyond rigid biomedical notions of what autism is/is not/should be. Our goal is to transcend positivist binaries which have served to limit the scope of autism research to a near exclusive focus on proving or disproving the “scientific” reliability and validity of various treatment and communication techniques. We wish to examine the disconnection between how applied professionals view and classify autism and how it is experienced directly by individuals and families (Offit 2008).

          My co-authors and I focus on the social context of communication: the inter-relationships and interactions between the people involved. Using our own family experiences we seek to: (1) investigate the role of communication in reinforcing or subverting social stereotypes; (2) establish how communication strategies influence social relationships, community presence and the capacity of autistic adults to lead fulfilling and rewarding lives, and; (3) identify social factors that encourage or discourage communication. We will provide examples of interactions we have had with professionals and experiences of “supported” living (which has at times included secret behavior programs, restrictions tantamount to house arrest and physical restraints) and explore how behavioral intervention strategies and classification systems have shaped our lives.

          In our ongoing dialogues about the limits and horizons of autism we are constantly challenged, as individuals and as a family, to define ourselves, our rights, our positions in each others' lives and what we seek from each other, from friends, from professionals, and from our local and national communities. In our larger project we consider the following questions:

1.  How do presumptions of ability and disability shape quality of life and significant relationships for nonspeaking adults with autism?

2.  What opportunities are created or precluded by the belief (or disbelief) that communication is possible?

3.  What types of social interactions encourage or inhibit communication? What social contexts and supports build capacity to move from supported to independent typing?

4.  What strategies can be used to guard against excessive influence, manipulation or abuse of supported typing?

 

In Rubin et al. (2001), Sue Rubin describes supporting and motivating factors for her move from supported to independent typing, including: (1) a desire to show her intelligence and (2) anger at skeptics. The article suggests that strong social support from family, community, professionals and staff is essential for success in independent typing. We will further explore the role that these and other factors play Hope's experience with regard to supported vs. independent typing.

     In the fall of 2004 I was participating by phone in a meeting that was happening in another state. Hope and Barbara were there in person as were an administrator, clinician, and staff person from Hope's residential agency. Also present was one of Hope's vocational administrators, who was from a different agency. Vocational program staff had learned by chance, and informed us a few weeks previously, that the residential agency had, several years before, instituted a behavior program that included, among other questionable components, approval for the use of a physical restraint and confinement to her bedroom and home. Apparently the agency administration thought including Hope's family in a discussion of challenging behaviors would violate her right to privacy. In other words, it would violate her human rights to let us know that the agency was violating her human rights.

          At the meeting, while Barbara tried to explain movement differences using examples from a book by autistic author Donna Williams, the residential program staff person rolled her eyes and the agency administrator explained (with greater diplomacy than I'm about to use) that, unlike Hope, Donna Williams is not mentally retarded. The agency psychologist then proceeded to pontificate about how the agency professionals were more qualified than the family in understanding and addressing Hope's needs, using a patronizing tone and words clearly meant to put us in our place. During his speech, I was pacing about my house, muttering to myself, and pounding my fists into my thighs. I later realized that, based on Hope's 8-level "problem behavior" program, I was at "Level III Anxiety" defined as "rocking, flapping of arm/hand, intense and constant heavy nasal breathing, observation of pulse in neck, and, if standing, marching, kicking, flailing."

          How did we get here? A family dedicated to disability rights, self advocacy, and disability studies? I have a Ph.D. in cultural anthropology, specializing in disability studies and Barbara has a master's in special education. We go to all the right conferences. In fact, the residential agency administrator goes to some of the same conferences. So, how did we get to this place? Quite easily in fact, since the system is set up to treat autistic behaviors and autistic communication as "problems."  In Hope's behavior program an escalating measure of problem behaviors places "refusal" or noncompliance at the eighth and highest level. When Hope moved away from home, attempts were made to train her staff in the use of supported typing but these quickly degenerated into "facilitating" with pen and paper and simple dictation where Hope was told what letters and words to type. Hope's use of supported typing had all but stopped during this same period the so-called "behavior program" and the so-called "problems" it addressed were taking place.

          In 1903 Mark Twain wrote in a letter to Helen Keller: "You are a wonderful creature, the most wonderful in the world--you and your other half together--Miss Sullivan, I mean, for it took the pair of you to make a complete and perfect whole." By this statement, Twain was not diminishing Helen's individuality or independent personhood. Rather, attempting to comfort Helen after her traumatic experience of being accused of plagiarism, Twain goes on to discuss the interactive nature of ideas and discourse. As scholars, writers, artists and activists we know that concepts are fluid and, despite attempts at appropriate citation, ultimately become community property. Rubin et al. discusses how her communication process is influenced, indeed interfered with, by her facilitators. Once, she could only type when she had physical support. Now that she can type "independently" (with reduced or no need for physical support) she can discuss the more subtle factors that influence her communication. Differences of opinion, knowing that some would prefer that certain information not be shared with others can all influence communication whether we have someone physically prompting us or not. As Twain so insightfully comments, when we collaborate, work in partnership or even work against each other, communication is profoundly relational. When the environment was hostile, the people disbelieving, not supportive and, in some cases actively abusive, when access to preferred technologies and techniques were denied her, Hope did not type. Away from that service provider, once again surrounded by supportive family and staff and with access to preferred technologies and techniques, that has changed.

When we asked her, "how did you feel when you were at [previous residential agency] and you could not adequately communicate?," she responded:

I am trying to forget about it. It was frustrating and difficult to get my way all the time. I am much happier now. I can communicate much more easily. Now I love my life and can safely face the day. I can tell people how I feel with my device and be like a typical person when I type. I get easily frustrated when it [the device] doesn't work.

 

Hope lives with the daily skepticism of people who have interacted with her for years and claim to "know" her. This includes family, friends and service providers. Barbara and I have witnessed her tolerance, patience and also some incredibly subtle (and sometimes not so subtle) ways of defending and protecting herself. Yet we are also disturbed by her vulnerability to the consequences of the doubt and disbelief of others, and this threatening influence to her quality of life. As an anthropologist, I explore how systems of power influence my sister and other autistic people. As a sister, I want to shake up the social structures and beliefs that result in her being treated as less than competent, less than human in some others' eyes. I am heartened that although we continue to have individuals like the former residential service providers, and the Special Olympics staff person, there are others, like the professor of Physical Therapy who has invited Hope to speak to her class, and the peer reviewers from the many professional, activist & scholarly conferences where she has been invited to present across the country. It is in the public sphere of presenting and the tensions created with the conflicting influence of an audience's potential for belief and disbelief that Hope can communicate most clearly. Given the 2009 conference theme on inclusion it is appropriate to consider the significance of who is being included in or excluded from a greater social dialogue.

References

 

Baggs, Amanda (2008). "Autistic Aug Com Users." Downloaded November 12, 2008. http://ballastexistenz.autistics.org/?page_id=143

Bara, B.G., Bucciarelli, M., and Colle, L. (2001). Communicative abilities in autism: Evidence for attentional deficits. Brain and Language, 77:216-240.

Biklen, D. (2005). Autism and the Myth of the Person Alone. New York City: New York University Press.

Bilu, Y. and Goodman Y.C. (1997). What Does the Soul Say?: Metaphysical Uses of Facilitated Communication in the Jewish Ultraorthodox Community. Ethos 25 (4): 375-407

Cardinal, D.N., Hanson D., & Wakeham, J. (1996). Investigation of authorship in facilitated communication. Mental Retardation, 34:231-42.

Erevelles, N. (2005). “Signs of reason: Riviere, facilitated communication and the crisis of the subject. In Shelly Tremaine (Ed.), Foucault and the Government of Disability. Ann Arbor: University of Michigan Press.

Grinker, R. R. (2007). Unstrange Minds: Remapping the World of Autism. Cambridge, Massachusetts: Basic Books.

Kliewer, C., Biklen, D. & Kasa-Hendrickson, C. (2006). Who may be literate? Disability and resistance to the cultural denial of competence. American Educational Research Journal, 43(2):163-92.

Niemi, J. and Kärnä-Lin, E. (2002). Grammar and lexicon in facilitated communication: A linguistic authorship analysis of a Finnish case. Mental Retardation, 40(4):347-57.

Offit, P.A. (2008). Autism’s False Prophets: Bad Science, Risky Medicine and the Search for a Cure. New York: Columbia University Press.

Prince-Hughes, D. (2004). Songs of the Gorilla Nation: My Journey Through Autism.  New York: Harmony Books.

Rubin. S., Biklen, D. Kasa-Hendrickson C., Kluth, P., Cardinal, D.N. & Broderick A. Independence, Participation, and the Meaning of Intellectual Ability. Disability and Society, 16(3): 415-29.

Sheehan, C.M. & Matuozzi, R.T. (1996). Investigation of the validity of facilitated communication through disclosure of unknown information. Mental Retardation, 34:94-107.

Twain, M. (1903). "Letter to Helen Keller from Mark Twain" downloaded May 22, 2008 from Helen Keller Kids Museum Online http://www.afb.org/braillebug/hktwain.asp .

 

Hope’s comments Part 1 (w/Barbara)

Q. What do you think about the things Sue Rubin says about the "awful interference"...

A.  She is right about it.  I am influenced by what I think people want to hear and have intuition about what they think. The interference is not as bad for me.

Q. How much do people's opinions influence your
ability to type?

A. It is harder when people don't believe I can type.

 

Hope’s comments Part 2 (w/Barbara)

I am a nervous wreck about New york.  It is more people tjat I don't know who don't believe I can type.

Q.  Ar there people in your life who question whether you are really typing?
A.  My dad, my grandparents and my Aunt Marty.  I can deal with it because i know they love me.

 

Hope’s comments Part 3 (w/Carol and malfunctioning device)

1.  What make's it easier for Hope to communicate? pppaeeeeeeeeeettttientttt,

 

2.What makes it harder for Hope to commuincate? loooooooooooouuuuuuuuuuuuuuuuuuuuuudddddd

 

3.What does it feel like when typing with:

 

Mom:  more helpfffuullllllllll

Staff:  nnnnervoussssssss

Self:  i do notttttt knowwwwwww

 

4.  What do you want people to know about Hope/me?

 

bouupyyyyyyyy  bout tttttreatt trrrrrrrrrrruuuuuuusssssstttttttt  happyyyyyyyyyyyyyyy

 

hopeeeeeeeeeee

 

Pam, its Carol.  I asked Hope your ?'s and these are the above responses.

 

1. Patience

2. Loud

3. More helpful (with mom), nervous (with Staff), I don't know (Self)

4. treat, trust, happy

Barbara’s comments

Hope stopped typing at the old agency because the device she had been using stopped working, and the company went out of business so it couldn't be repaired.  At the same time, I was having some health issues, and wasn't as available to type with her. She was reluctant to type even when I was available because it was hard using a computer because of her heavy touch.  She would type occasionally with a staff person who supported her during the day, using a letter board.  I don't believe she trusted staff from the residential agency because of previous misuse.

I went to various advocacy conferences (TASH) where I saw several people who used supported typing (fc), and saw them presenting and conversing with each other
using this method.  I hoped that being involved in such conferences might encourage Hope to start typing again. I took her to one where Linda Rammler who serves on the New England board with me was presenting. She was able to type with Hope, after some initial resistance. Linda subsequently offered workshops training staff to use the method, with her consultant Jacob who has since presented with Hope.

By this time, she was living with me again, and it took a year to obtain funding for the Dynavox which she is currently using. As supported typing is not considered a valid method by alps in RI, it has been difficult to find one who is familiar with the device, and has an open mind toward the method.  We still have not been successful, and have used Dr. Rammler and Jacob for training.

Hope still is reluctant to type with staff and with me.  However, when she is presenting an audience, there is no resistance. She still will not use it in general conversation which limits her ability to communicate with others. She has expressed that it is hard for her to initiate dialogue.