Lauren Matter, SPPA 680
Hines, M., Blandin, S., & Togher, L. (2011). Communication and AAC in the lives of adults
with Autism: the stories of their older parents. Augmentative and Alternative
Communication, 27(4), 256-266. Retrieved May 30, 2013, from
http://ehis.ebscohost.com.proxy-tu.researchport.umd.edu/eds/detail?sid=a57d810e-246b41a6-90b5-273c30432e4d%40sessionmgr110&vid=4&hid=3
Many studies related to Autism Spectrum Disorder (ASD) or Augmentative and Alternative
Communication (AAC) focus mainly on children. This study is unique in that it takes an in depth
view of adults diagnosed with ASD and the impact AAC devices impact their lives, as well as
the lives of their parents. This study utilizes a qualitative narrative methodology to determine the
relationship of adults with Autism and their parents, and is part of a larger study which explores
life experiences of older parents of individuals with Autism.
This particular study took an in depth look at 16 parents (3 couples, 10 individually interviewed
parents) over 60 years of age who had adult offspring with Autism. Each parent, or set of
parents, participated in two structured interviews following a specific topic guideline regarding
communication, finances, and concerns about the future. Interviews were audio-recorded and
transcribed according to a specific set of predetermined transcription rules agreed upon by the
investigators, and later analyzed using narrative, structural, thematic, and performative analysis.
Similar situations or storied were coded and used for the investigation, while atypical situations
were coded, used as outliers, and saved for additional research questions.
Results found that only two families mentioned the use of AAC devices in facilitating
communication with their sons or daughters. Most families reported a lack of meaningful
conversation with their child, and reported that communicating can be exhausting and
demanding. Similarly, many parents reported that in social or public settings, they often
practiced avoidance strategies to prevent these same types of communication breakdowns with
other individuals their child might engage with. Almost all parents felt that it was better to avoid
a communication altercation than to attempt to coach the child through it or mediate afterward.
Interestingly, most parents also reported a minimal need or desire to obtain Speech and
Language services. Three main reasons for this were noted. First, parents felt their children’s
speech and understanding of language appeared to be perfectly intact. Secondly, many also
believe that their child’s language deficits are an inherent part of who they are, and cannot be
remediated. Finally, an overlapping misconception was observed about the roles of SpeechLanguage Pathologists, with many parents mistakenly believing SLPS only treat articulation
disorders.
Strengths included participant matching in some areas; all parents were middle to upper class
families and lived in a major urban area. More weaknesses, however, appeared throughout the
study than strengths. Participant matching ended at the aforementioned criteria: all but one of
the individuals with ASD were male, and there was no participant matching as far as parent
relationship status (married, divorced, widowed), living situation of the individuals with ASD (at
home, group home, independent living), or the level of functioning (high, low). Not all questions
were asked to each parent; instead some were chosen over others in response to answers the
parents gave. This did provide a great deal of sensitivity to the parents’ during the interview
process, but it did not allow for precision in collecting equal data from each participant.
Implications of this research are vast. One common theme that I noted as I read through different
parents’ accounts of their children’s differing situations, was a lack of accurate information on
not only the causes of Autism, but also appropriate expectations for individuals with Autism.
One parent believed her daughter’s Autism occurred because she was in shock over the death of
a sibling. Another parent noted that he believed his son did not want to talk or communicate and
that is why he chose not to. Additionally, I was surprised at the number of parents who wrongly
believed that Communication Services solely served articulation impairments. The overarching
theme that can be taken from this is a need to address misconceptions through education. Parents
need to be educated about what their child is living with and should be given numerous avenues
to pursue to assist them. Pediatricians, the first to see, and likely diagnose children with ASD,
should take special precautions to not only expose the parents all of their options, but also
explain thoroughly the benefits each could have on the life of their child as they grow into a
member of the community.
I also felt that coding atypical situations, or ones that seemed to be directly opposite of situations
most parents described, provided useful information for researchers to investigate. It
demonstrates that each individual with Autism is different, and that there is not one single
category their behaviors can be lumped into. Need for support groups and parent classes became
all the more prominent because of misconceptions illustrated in this article. The field of SpeechLanguage Pathology has come a long way, but until all individuals who need assistance are
aware of and benefitting from it, our job is not complete.