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 19th
century writer Pierre Rivière, and 20th 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
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.
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.
