The Challenges and Perceptions of Raising A Child Who Uses AAC - A

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The Challenges and Perceptions of Raising a Child

Who Uses AAC: A Review of the Literature
Rachel M. Mikolay
The University Of Akron, rmm100@zips.uakron.edu
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Mikolay, Rachel M., "The Challenges and Perceptions of Raising a Child Who Uses AAC: A Review of the
Literature" (2015). Honors Research Projects. 233.
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The Challenges and Perceptions of Raising a Child Who Uses AAC: A Review of the Literature 1
The Challenges and Perceptions of Raising a Child Who Uses AAC: A

Review of the Literature
Rachel Mikolay
The University of Akron
November 18, 2015

Abstract
The purpose of this review was to examine the perceptions of parents and caregivers on
raising a child who uses augmentative and alternative communication (AAC). Factors and
overarching themes in existing literature affecting parent’s perceptions were examined and
condensed in this review. Seven research studies were chosen for analysis. A variety of
common perspectives were found in the research and the conclusions relating to caregiver
challenges and thoughts on AAC were categorized, including four thematic categories:
problems with the AAC system; barriers to learning AAC; societal, family, and professional
influences; and differences among individuals who use AAC. Information gained in this
review may be used to improve professional development for speech-‐language pathologists
(SLPs) and teaming between parents and SLPs.
Keywords: augmentative and alternative communication, speech-‐language pathology,
perceptions of parents, challenges

INTRODUCTION the communicators speech that make the

device less required (Phillips & Zhao, 1993
Raising a child with complex in Lasker & Bedrosian, 2001). There is
communication needs can be socially limited data about family views of the
frustrating and emotionally demanding factors that are affecting the use of AAC
(Bailey, Parette, Stoner, Angell, & Carroll, systems (Marshall & Goldbart, 2008;
2006). The use of augmentative and McNaughton, Rackensperger,
alternative communication (AAC) systems Benedekwood, Krezman, Williams & Light,
can relieve many communication problems 2008). The purpose of this review of
but may add additional stressors to the literature is to identify what the research
child and the family (Bailey et al., 2006). says about parent perceptions and to
AAC is defined as a system that “utilizes identify limitations of the existing research.
symbols, aids, strategies, and techniques to
supplement—or augment—an individual’s METHOD
current way of communication” (King,
2010, p. 152). AAC systems encompass a Search Strategies
variety of modalities: there are high-‐tech
systems like iPads and speech generative Searches were made for scholarly and
devices, and there are low-‐tech systems peer reviewed journal articles on the
like letter boards and Picture Exchange perceptions of raising a child who uses
Communication System (PECS). AAC AAC. The search terms used to locate the
systems help users express wants and studies were “AAC” “perceptions” “family”
needs, transfer information, establish “parents” “augmentative alternative
social closeness, and demonstrate social communication” “challenges” and “impact.”
etiquette in multiple environments (King, The search was conducted on online
2010). databases ComDisDom, MEDLINE and
There is a strong need for evaluation of EBSCOhost. Studies were incorporated in
the perceptions of parents and caregivers this review if (a) they were published after
on raising a child who uses AAC (Marshall 2001, (b) if their focus was on the parents
& Goldbart, 2008). Practitioners can or caregivers of AAC users, and (c) if they
recommend a more suitable system for the asked interview questions about the
child, conduct more valuable therapy parents’ opinions on AAC devices.
sessions, and avoid AAC abandonment if
they understand the needs of the parents Data Analysis
(Johnson, Inglebret, Jones, & Ray, 2006).
According to Lasker and Bedrosian (2001), The data were organized by research
there are several possible reasons for questions, purpose of study, research
rejection of an AAC system. Avoidance of design, sampling procedure, participants,
the device happens when a person and sample size, procedure, results, significant
their family refuses to fully participate in findings, and implications. The conclusions
training of the system. Device relating to caregiver challenges and
abandonment occurs after a period of thoughts on AAC were categorized into 4
device use, when the AAC system may be domains, each of which is broken down
rejected because of dissatisfaction with the into several sub-‐themes.
technology, changes in the communicators
priorities and needs, or improvements to RESULTS

Search Results Theme 1: Problems with the AAC System

Seven research studies were chosen Issues that are most directly related to
that followed the specified criteria. Six of the AAC systems and their inherent
the studies used qualitative analysis in the characteristics characterize the domain of
form of semi-‐ structured or in-‐depth Problems with the AAC Device. Four
interviews. (Hines, Balandin & Tocher, research articles were found to relate to
2011; Rackensperger, 2012; Bailey et al., this domain (Bailey et al., 2006; Marshall &
2006; Marshall & Goldbart, 2008; Dew, Goldbart, 2008; McCorda & Soto, 2004;
Balandin, & Llewellyn, 2011; McCorda, & McNaughton et al., 2008). The factors
Soto, 2004). One study used an online focus found in current research that contributed
group discussion with questions to spark most to parents’ perceptions of AAC
conversation topics (McNaughton et al., systems are speed of conversations,
2008). In McCorda and Soto (2004), the malfunctions, vocabulary, and cost.
researchers used naturalistic observations
and a review of the artifacts collected. The Speed of Conversations
study was chosen because it specifically
investigated perceptions of AAC in AAC can be a slow and exhausting form
Mexican-‐American families, a minority of communication for some children, which
culture where there is limited research on caused parents to allow and often
perceptions of AAC. (McCorda, & Soto, encourage their children who
2004). In Hines, Balandin & Tocher (2011), communicated faster non-‐symbolically to
the researchers looked at the perceptions put away their AAC devices at home (Bailey
of older parents caring for an adult son or et al., 2006). Parents encouraged non-‐
daughter using AAC. symbolic communication such as body
gestures, intonation of vocalizations, and
DISCUSSION facial expressions because of how quickly
they got a message across (Bailey el al.).
Through research of the current Familiar communication partners may
literature on perceptions of easily interpret non-‐symbolic forms of
parents/caregivers of children who use communications, however, unfamiliar
AAC, central themes have been selected to communication partners may have trouble
categorize the qualitative data collected deriving meaning from them. One reason
and to determine current barriers and many families do not always practice using
facilitators. The factors contributing to AAC at home is that there is too little
parental views on raising a child who uses emphasis on using multi-‐modal
AAC are presented in four themes, each communication and too much focus on
with three to six sub-‐themes. The themes non-‐symbolic communication (Bailey et al.,
comprise of Problems with the AAC Device; 2006if).
Barriers to Learning AAC; Societal, Family, According to Marshall and Goldbart
and Professional Influences; and (2008), parents frequently expressed
Differences Among Individuals who use concern about their child’s speed of
AAC. The themes will be reviewed conversations. Often, they purposely
thoroughly in order to find implications for overlooked recommendations of speech-‐
future practitioners and researchers. language pathologists and constantly asked
their child closed ended questions in order speed of conversation is always a concern
to save time. Even when parents knew that and the child’s time is cut short, his or her
their child was capable of communicating proficiency and speed using the device will
more and that using complex sentences not improve.
was educational and beneficial, they often
found situations where they purposely cut Malfunctions
their son or daughter short for the sake of
time (Marshall & Goldbart, 2008). When working with an electronic
McCorda and Soto (2004) found device, there is a possibility it will
parents were concerned about their child’s malfunction. A device malfunction can be
slow speed of conversations when AAC was upsetting to the user if the device is heavily
used. Depending on the physical limitations relied on for education, safety, and social
of the child, communicating with AAC may participation. In Bailey et al. (2006),
seem inefficient compared to other modes research showed parents were
of conversation. Mexican-‐ American disappointed by the length of time a device
families often chose speed over more needed to be in the shop for repair. The
complex conversations (McCorda & Soto, parent also complained about not having a
2004). technical support number to call during a
One reason that AAC can be so slow is device malfunction (Bailey et al., 2006).
the level of effort many children have to In addition to being discourage by the
put forth to communicate (McNaughton et length of time it took to repair a device,
al., 2008). Due to severe physical/motor parents were also discouraged by how
limitations, children may have difficulties frequently the AAC device malfunctioned
accessing messages stored in an AAC (Bailey et al., 2006). Malfunctioning
system. Therefore, users may need devices prevented users from
alternative access methods, or adapted communicating in times of need. For
equipment to access their system. In example, in McCorda and Soto (2004), a
McNaughton et al (2008), a mother participant reported that without their
described her son’s use of the AAC device device, her son could not participate fully
as “effortful” because her child’s physical in his IEP meeting and plans had to be
strength and mobility made it difficult to rescheduled, delaying progress.
even use a switch device. However in Parents consistently blamed technical
comparison to verbal speech the device breakdowns as a leading cause for their
made communication much easier frustration, and linked malfunctioning
physically for many children (McNaughton devices to interruptions in learning,
et al., 2008). In McNaughton et al (2008), a limitations in communication, and device
participant reported that she would get abandonment (McNaughton et al., 2008).
irritated and angry with communication
partners who would walk away before her Vocabulary
child finished preparing his message.
Parents who are more understanding of the Participants in four studies
extra time their child takes to communicate emphasized their concerns with
find it frustrating when others are less vocabulary (Bailey et al., 2006; Marshall &
understanding. A child requires frequent Goldbart, 2008; McCorda & Soto, 2004;
and consistent training and practice to McNaughton et al., 2008). In Bailey et al.
increase efficiency at using a device, but if (2006), parents voiced a need for their
child to access vocabulary that would make understandable sentences (McNaughton et
it easier to carry on a conversation al., 2008).
Although parents described wants and The capabilities of vocabulary on AAC
needs of everyday items to be the most systems often pleased parents. Parents
common communication topics at home, were thankful for the technological
many parents found it challenging to talk supports built into many AAC systems. For
about events that happened outside the example, a participant was happy her
home (Bailey et al., 2006). Parents were child’s device had an icon-‐prediction
often disappointed by limitations for word system because it helped her daughter
storage on the AAC systems. Most parents learn new vocabulary (McNaughton et al.,
believed AAC assisted their child’s ability to 2008).
converse about complex issues and
abstract ideas but due to limitations in Cost
vocabulary it did not completely resolve
the problem (Marshall & Goldbart, 2008). For many parents, the cost of AAC
Most parents were happy with the systems is a major concern (McNaughton et
increased opportunities that AAC brought al., 2008). More specifically, parents were
in the form of vocabulary. However, they concerned about obtaining funding for the
found it very time consuming and best AAC systems for their children
frustrating they had to program in each (McNaughton et al., 2008). One example of
new word in order for their child to expand concern came from a family who believed
his expressive vocabulary (McCorda & that the only way to use Medicaid for
Soto, 2004). An issue that makes AAC less funding was if they wrote a report
accessible for use at home in Mexican-‐ stressing their need for safety purposes. In
American households is the lack of their situation, if it were mentioned the
vocabulary built into the system that is device was for education the school would
appropriate for bilingual families. A be expected to pay and could deny that
participant was disappointed in the device and choose another that may only
practicality of vocabulary available to her be beneficial for current IEP goals, with
daughter (McCorda & Soto, 2004). less room for growth. Parents felt stressed
Parents of children who use AAC by the need to strategically and carefully
agreed that AAC required a high level word these requests.
linguistic competence. Linguistic In a separate study, parents were
competence refers to the innate knowledge under the misconception that if the school
of grammar and what allows a person to district paid for certain devices their child
make meaning out of sounds and words would not be allowed to take them home,
(Fernandez & Smith Cairns, 2010). For thus making them pay out of pocket for
example, most people can identify if a equipment that was accessible in the home
sentence is contradictory or doesn’t make environment (Marshall & Goldbart, 2008).
sense, even without a formal lesson on the It can be time consuming, stressful, and
grammar used in the sentence (Fernandez intimidating for parents to fill out
& Smith Cairns, 2010). For many children paperwork for grants or reimbursement on
with limited language proficiency and devices, despite how funding systems and
experience, it could be challenging to select special needs laws have been improving
appropriate vocabulary and to create (Marshall & Goldbart, 2008).

Theme 2: Barriers to Learning AAC

Hines et al. (2011) addresses the
There are several barriers in learning perceptions of families who did not pursue
with and about an AAC system. The the use of AAC because they believed that
research completed in this area found that the difficulties of raising an older son or
accessibility of AAC systems within various daughter with autism were inevitable and
environments, misconceptions on speech unfixable. Most parents’ reasons reflected
therapy services related to AAC an incorrect understanding of the
capabilities, training and programming, opportunities that AAC could provide their
and the ease of use and care are all child. Regular use of an AAC system can
contributing factors in parents’ perceptions improve a child’s communication
of raising a child who uses AAC. Five competence, expressive vocabulary,
studies conducted interviews or memory, and sentence structure (Bailey et
discussions to determine how these al., 2006). According to Hines et al. (2011),
barriers affected the parental views on many parents did not seek speech therapy
AAC. (McNaughton et al., 2008; Hines et al., for their children because they believed
2011; Bailey et al., 2006; Marshall & therapists would be focused solely on
Goldbart, 2008; McCorda & Soto, 2004). articulation rather than language
development or AAC. A semi-‐frequent
Accessibility concern of parents is whether their child is
getting premium services from their SLP.
According to McNaughton et al. (2008), Parents recognize the limitations of
participants believed it was very important professionals, but worry whether they are
for children to have constant and getting optimum quality and quantity of
consistent access to their AAC devices in therapy (Hines et al., 2011).
order to be comfortable with them and
maximum proficiency. The problem for Training and programming
many individuals who require a wheelchair
for ambulation is that the devices can only After selection of an AAC device, a
be used when seated in their electric significant amount of time must be
wheelchair (McNaughton et al., 2008). If invested in programming it for the
the child went somewhere that was not individual's needs, and training the
wheelchair accessible, like relative’s and individual on how it could be used (Bailey
friend’s homes and parks, the device could et al. 2006). According to Bailey et al.
not be used (McNaughton et al., 2008). (2006), parents expected programming for
Also, users of AAC who do not have a an AAC system to be fully provided by
mounted device may find the device less professionals and school personnel.
accessible in certain situations because However, with so many students on an
devices could be heavy or bulky. According SLP’s caseload, she or he may only have an
to the results of McNaughton et al. (2008), hour a week to teach the child about the
it is very important for SLPs to interview system. Parents are then required to help
families to find out where they desire to their child further learn at home (Bailey et
use AAC before choosing a device. al. 2006).
Programming barriers also influenced
Misconceptions on Speech Therapy and parents’ perceptions on the devices. Many
AAC Capabilities parents were concerned with the
responsibility and time involved in According to McNaughton et al. (2008),
programming a device (Bailey et al., 2006). a lack of confidence with computers and
Programming was described as a burden similar technologies greatly influenced
and families often felt unprepared and parents’ attitude towards AAC. Parents
would have benefited from more training. who were intimidated by computers had to
Concerns on training were proportionally overcome the additional challenges of
related to the technological level of the programming. Parents stated that they
device; training on the higher tech devices learned how to operate the AAC device by
concerned parents the most. Even once the reading manuals, attending trainings from
child is knowledgeable on the device, the speech language pathologist, and using
parents want readily available technical free courses and telephone support from
support. One parent voiced his stress from manufacturers. Those who did not feel the
the lack of information and training for his training that they received was very helpful
son’s device. The analysis of interviews complained that the information was not
showed that families want more education detailed enough and lacked information on
and training on the use and programming organizing vocabulary and programming
of AAC devices. Specific needs included the device (McNaughton et al., 2008).
more information on how to integrate the Many parents were forced to take the
use of the AAC device in the community primary responsibility of programming and
and home (Bailey et al., 2006). teaching their child how to use a new
According to Marshall and Goldbart, device, but many also were satisfied with
(2008), information on the use of AAC the help they received from the SLP
systems should be available to parents at (McNaughton et al., 2008). A mother
various stages of their education. It was commented on how much the SLP taught
found that families could only absorb so her child that she could not. The SLP
much training at once and may need taught different ways to express one’s self
information repeated back to them during and how to use proper sentence structure
several meetings. Parent’s often felt that and pre-‐verbs. She was very impressed
the need for on-‐going AAC intervention with the level of respect the SLP showed
was not made explicit during the for her son and how she believed in his
introductory training period. This abilities (McNaughton et al., 2008).
misunderstanding could affect the quality Both parents and children found that
of the child’s educational development training offered from device manufacturers
(Marshall & Goldbart, 2008). was an important resource (McNaughton et
According to McCorda and Soto (2004), al., 2008). Families had many positive
the Mexican-‐American families studied perceptions on the assistance they received
perceived that AAC was complex and from technical representatives on
mysterious. The majority of family manufacturers’ telephone assistance
members perceived that it required too (McNaughton et al., 2008).
much training and knowledge to program
or repair the equipment. They did not Ease of Use and Care
think they had the skills or knowledge
needed to anticipate the next steps in their Bailey et al. (2006) identified “ease of
child’s communication development use and care” as one of the four most
(McCorda & Soto, 2004). reported areas of satisfaction. A system’s
“ease of use and care” is determined by
how much effort a client and family has to

put forth to become comfortable with In Bailey et al. (2006), parents were
navigating the system and keeping it disappointed because of their initial
running. Parents were appreciative of expectation of immediate benefits from the
devices that were easy enough to maintain AAC system. Much of this distress was
that even their children could learn how to attributed to the difference in outcome
charge them and use them. Parents were expectations of school professionals and
thankful that SLPs made caring for devices parents. Parents desire to be acknowledged
a goal in therapy, teaching clients how to for the burden they are under and want to
charge them themselves. Parents feel that their child’s communication issues
expressed that the large amount of time are a priority to professionals (Bailey et al.,
they spent stressed while familiarizing 2006).
themselves with the AAC system could Marshall and Goldbart (2006) found
have been reduced with better training. that parents expect to have their child’s
Although there are difficulties related to personality taken into account on AAC
the care and use of AAC systems, parents related decisions. Practitioners also must
agreed that the AAC systems were a understand that families desire to develop
necessary component to their children’s different levels of expertise. Many families
communication and worth learning to care are comfortable with knowing only the
for and use (Bailey et al., 2006). basics of AAC use, while others will always
wish to know more. Communication
Theme 3: Societal, Family, and between the family and professionals
Professional Influences about their expectations is necessary for
effective teaming (Marshall & Goldbart,
External perceptions and attitudes 2006).
towards AAC have a large impact on how
parents and users feel about using Intimacy of the Device
communication devices (McCorda & Soto,
2004). Discouragement or negative According to McCorda and Soto (2004),
attitudes from others associated with AAC Mexican-‐American families did not always
can affect the user’s confidence and level of consider the speech generative device to be
use. This domain examines how four sub-‐ equal to talking. They found it impersonal
themes affect perceptions of raising a child and only believed it to be important for
who uses AAC. The sub-‐themes are family special circumstances, like with new
member expectations, intimacy of device, communication partners. One father did
support systems, and acceptance from not allow his son to use the DynavoxTM in
familiar and unfamiliar communication his home; he felt that unaided
partners. Of the seven studies examined, communication systems, such as eye-‐gaze,
six offered insights in the areas of societal, body posture, and facial expressions, were
family and professional influences (Bailey more intimate and natural. Despite his
et al., 2006; Marshall and Goldbart, 2006; preference, he wanted his son to learn the
McCorda & Soto, 2004; Rackensperger, device for use with less familiar or less
2012; McNaughton et al., 2008; Lasker & intuitive communication partners. Another
Bedrosian, 2001). father considered his daughter’s AAC
device to be a barrier between
Family Member Expectations communication partners as it barred more
intimate contact. He compared the According to Marshall and Goldbart,

impersonality of the device to be similar to (2008), many parents believe that speaking
the Internet. He stated that because he with other parents of children with
wouldn’t talk “machine to machine” it was communication difficulties is useful and
not a good enough goal for his daughter informative. They believe that those who
(McCorda & Soto, 2004). have been through the struggle are the
most knowledgeable (Marshall & Goldbart,
Support Systems 2008).
Bailey et al. (2006) discovered that
A participant who uses an AAC system families across ethnic groups desire some
in Rackensperger (2012) attributed her extent of involvement in AAC decision
academic success to family accommodation making with professionals. According to
and support in aiding homework McNaughton et al. (2008), many parents
completion. Homework is a gigantic did not feel satisfied with their level of
potential barrier to success academically, input in selecting an AAC device for their
and the participant was thankful that her child. One family reported that it was very
siblings helped physically write out her difficult to get a thorough evaluation for
homework assignments after she their daughter, and the professionals gave
communicated to them her answers little support and no information on AAC.
through the AAC system. A family without Parents described the lack of AAC trained
helpful siblings may feel overwhelmed with professionals as one of the barriers that
the amount of homework they need to help hinder teaching and learning process for
with. Parents who had more time and the AAC. This shortage of trained professionals
motivation to advocate for their child’s often resulted in delayed and/ or
education usually saw more academic inappropriate interventions. Delayed
success and were more satisfied with their intervention can be very detrimental to a
child’s improvements. Rackensperger’s child because it can be much harder to
study reinforces the need to instill in integrate AAC later in the child’s
parents the notion that their child with development (McNaughton et al., 2008).
complex communication needs can be Parents reported feelings of isolation
successful academically and attain a and frustration when they struggled with
diploma. their school system (McNaughton et al.,
Teaming between family, teachers, and 2008). One family was frustrated with the
professionals is most effective when limited knowledge that their SLP exhibited.
participants felt included, respected, and The mother believed the SLP was not
valued (Rackensperger, 2012). School productive and wasted therapy time, most
systems should make an effort to likely because of her inexperience. The
understand the family and give father believed his daughter’s SLP should
opportunities to contribute have admitted a lack of knowledge in the
(Rackensperger, 2012). area and referred her to a specialist
Even with professional help, parents (McNaughton et al., 2008).
may wish for additional support from
families in similar positions as theirs Acceptance from Familiar and
(Bailey et al., 2006). Bailey et al. (2006) Unfamiliar Communication Partners
found that parents desired more
information on finding support groups.
All seven participants in the Bailey et their children, but were often discouraged
al. (2006) study perceived AAC as a due to rude comments. The more
successful facilitator in helping their equipment their children used the stranger
children interact with a variety of they seemed to outsiders (McNaughton et
communication partners. The AAC system al., 2008).
bridged the communication gap between
both unfamiliar and familiar partners when Theme 4: Differences Among
they showed a level of respect and Individuals Who Use AAC
acceptance for the different
communication style (Bailey et al., 2006). Besides the obvious differences that
Statistical analysis performed by individuals with different disorders and
Lasker and Bedrosian (2001) found that diagnoses have, there are several factors
family members ranked AAC digitized that can change a mother or father’s
speech mode as the most favorable mode opinion on raising a child who uses AAC to
of communication for their family member communicate. Cultural differences, the
with Aphasia. A large percentage of peers child’s level of independence, and the age
also ranked digitized speech as a preferred of the child are three topics discussed in
method of communication as opposed to current literature. Five studies (McCorda &
watching the speaker “struggling” with Soto, 2004; Bailey et al., 2006; Marshall &
aphasic speech. This finding indicates that Goldbart, 2008; McNaughton et al., 2008;
unfamiliar adult peers are accepting of Hines et al., 2011) provide insights on how
AAC, and that extreme anxiety over these differences among individuals may
whether AAC may be accepted by affect parent perceptions.
unfamiliar communication partners is not
always warranted (Lasker & Bedrosian, Cultural Differences
2001).
Obtaining acceptance of the device As the Spanish speaking population
within the school system is also crucial for grows larger in the US, it is important to
optimum support and use (McNaughton et acknowledge the differences that Latin
al., 2008). A father in McNaughton et al. cultures and other minority cultures have
(2008) emphasized that having a on speech therapy in regard to AAC
recommendation from a professional in the (McCorda & Soto, 2004). According to
school system before purchasing a device McCorda & Soto (2004), many families are
would make the devices acceptance easier. overwhelmed by the high expectations
According to McNaughton et al. (2008), from speech-‐language pathologists of
support from classmates is also important parental participation in assessment and
in encouraging communication. A mother intervention. Results of the study found
noticed the impact that negative attitudes that social class, family members’ literacy
towards AAC had on her child. She levels, cultural values, and previous related
believed that if more clubs and groups experiences may influence the amount of
were available to her child he would have participation from parents. These barriers
more to talk about with peers and would may be even more difficult to overcome for
be more accepted by them. When dealing minority families. Parents report they feel
with difficult people parents believed it like they do not have enough authority to
was part of their responsibility to teach claim their rights if they believe the
others about acceptance and advocate for partnership between the family and
higher-‐status professionals are not equal One of the most commonly reported
(McCorda & Soto, 2004). areas of satisfaction with AAC devices in
An often forgotten barrier that is Bailey et al. (2006) is “increased
magnified by cultural and language independence and improved
differences is the transparency and communicative competence.” With AAC,
relations of icons and picture cues children improved in their ability to
(McCorda & Soto, 2004). Often schedule their day and organize activities
manufactures organize icons by pairing a of daily living (Bailey et al., 2006). Parents
picture of an object with the letter it starts of children with limited communication
with. For less common languages than regularly feel isolated and exhausted from
English, the device may require a lot of the additional responsibility in acting as an
time-‐consuming customization. The interpreter for their children (Marshall &
semantic associations of the icons could Goldbart, 2008).
also provide a challenge, as they are Although independence is a goal for
preprogrammed based on the dominant every family, rapid changes in dependency
culture. Certain symbols may be very can also leave parents feeling confused
ambiguous and unclear for the children about their role in parenting (McCorda &
and their families (McCorda & Soto, 2004). Soto, 2004). After first introducing an AAC
Mexican-‐American families recognized device parents may have to make changes
that the language system, including dialect, in how they are involved with their child’s
picture symbols, and order of symbol education. One mother reported feeling
combinations, of the device was its largest threatened by the AAC device’s capabilities.
obstacle to regular use at home (McCorda After her daughter became a better
& Soto, 2004). Most of the families studied communicator, the teachers and therapists
spoke primarily Spanish, yet the device stopped sending home as many progress
synthesized English speech. Spanish notes and messages, and the mother
speaking families studied reported that perceived she was no longer included
they did not perceive that the AAC device (McCorda & Soto, 2004).
improved the fluency or speed of In the McNaughton et al. (2008), the
conversations in the home. This may be highest level of success reported by many
due to literacy and language differences parents was watching their child
between family members. The child may independently use an AAC device to
be learning English at school, therefore the communicate. One mother described her
AAC system uses English spoken output, emotions when she heard her daughter
but at home cannot communicate fully with first make a sentence without coaching.
family and friends. Even if a family The relief of not having to probe her
member has a strong understanding of daughter with questions and strain to
English, the mechanical voice output may understand her unintelligible speech made
be difficult to interpret because English is the mother so happy she was brought to
not their first language. In this case non-‐ tears. Another mother loved how the
verbal communication may seem more device allowed her son to jump into
effective (McCorda & Soto, 2004). conversations whenever he desired.
Parents were also pleasantly surprised
Independence when the AAC device aided in independent
learning. One father noticed and was
excited that his daughter’s vocalizations
improved just from playing with her device Implications for Speech-‐Language
and listening to it repeat words Pathologists
(McNaughton et al., 2008).
No matter the perceptions or attitudes
Age of Child of the parent with regards to an AAC
system, it is the SLPs responsibility to
According to Hines et al. (2011), recommend whichever AAC system is best
parents were interviewed to provide for that child (Marshall & Goldbart, 2008).
insight into the experience of mothers and However, in order to promote successful
fathers caring for an adult with autism who implementation and maintenance of AAC
has received an AAC system to systems, practitioners need to learn more
communicate. strategies for working with parents.
Only two of the thirteen families of Speech-‐language pathologists need to have
Hines et al. (2011) reported active use of a plan for on-‐going and as-‐needed support
AAC systems, most had abandoned their for maintenance of the AAC system in order
AAC system over the years, although most to address family concerns, device upkeep,
reported a want for more meaningful identify and program additional vocabulary
conversation. Many families reported that (Marshall & Goldbart, 2008), and
conversation, both with and without the ultimately avoid AAC system abandonment
AAC system, was emotionally demanding, (McNaughton et al., 2008).
exhausting, and a burden. The article’s Successful implementation and
implication to service providers is that maintenance of an AAC system requires
more on-‐going and as-‐needed support and collaboration amongst all stakeholders
information needs to be provided to (McNaughton et al., 2008). If possible,
families of adults with autism (Hines et al., practitioners should work with AAC users
2011). to identify their goals when using the AAC
As a child grows, relationships with system. Speech-‐language pathologists
peers and communication partners may should align their intervention goals with
change (Dew et al., 2011). A mother in the the goals identified by the AAC user and
McNaughton et al. (2008) study noticed share the information with all invested
and was saddened by how peer parties including teachers and parents.
relationships grew harder for her child as Communication between team members
he grew older and entered a clique filled can help divide the workload and allow for
high school. She believed kids were more faster progress (McNaughton et al., 2008).
willing to play with her child in elementary Results of research indicate a
school. The mother became less content relationship between users’ cultural
with her child’s communicative backgrounds and their acceptance of and
participation when he was a young adult progress with AAC (McCorda & Soto,
than she was when he was a child 2004). SLPs need to be aware and sensitive
(McNaughton et al., 2008). According to to the influences of the users’ culture when
Hines et al. (2011), it is important that choosing and programming an AAC system.
speech therapy is utilized throughout a Additionally, different cultures will require
client’s adult life. different service delivery methods and
support. Professional stakeholders, such as
IMPLICATIONS SLPs, school personnel, and case managers,
need to work to remove culturally biased
communication practice barriers in the McNaughton et al. (2008) recommends

area of AAC (McCorda & Soto, 2004). that parents of AAC users seek out high-‐
AAC is an area within the field of quality services and become experts in
speech-‐language pathology that impacts their child’s technology. Parents can
individuals of all ages, disabilities, become advocates for their child’s best
severities, and cultural backgrounds. interest by continuing education on global
Therefore, all SLPs should evaluate their AAC topics or the particular AAC system
own professional knowledge and skills their child uses, joining support groups for
with regards to AAC systems. Those who parents of children with similar disabilities,
do not feel confident with their knowledge seeking out trained professionals in their
and skills in AAC should seek additional area, and contacting SLP organizations for
training in current AAC technologies and resources (e.g., American Speech-‐
evidence based practices for evaluation Language-‐Hearing Association). If parents
and implementation of AAC systems. There utilize support groups they may feel less
are an overwhelming number of parents isolated in their struggles. Parents should
who were frustrated by inexperienced SLPs also learn how to create motivating
(McNaughton et al., 2008). The parents’ opportunities for their child to learn and
frustration may indicate that more SLPs use AAC.
and professional stakeholders need to Parents who are unsatisfied with their
research and learn about AAC in order to child’s current means for communication
provide the appropriate support and and/or AAC system need to consult the SLP
information to key stakeholders. before disregarding recommendations.
Research showed families were more Parents need to report any changes in their
likely to abandon the AAC system when child’s communication capabilities, needs,
there was miscommunication between the and/or the AAC system to professionals
SLP and parents (Hines et al., 2011). More immediately so assistance or modifications
specifically, parents tended not to share can be given.
their concerns or challenges about the AAC
device (McCorda & Soto, 2004). In order to ADDITIONAL CONSIDERATIONS
address instances of miscommunication,
the SLP could collect information from the As technology rapidly changes, so does
parent using a survey. SLPs need to work the type of AAC systems that are available
to understand parents’ perceptions of AAC, to assist a person with complex
so that once understood, the SLP can work communication needs. More data about
with the family to address their concerns caregivers’ perceptions are needed to
and lack of training. One way to learn and continue to stay up-‐to-‐date on the issues
record how parents feel is through a survey with AAC within the family dynamic (e.g.,
that is constructed based on the fifteen changing technology, availability of
themes found in literature. The survey, at resources, support for AAC use and
the end of this review, can be administered maintenance). Collecting more data would
to parents in order to understand their also aid in training professionals on how to
perception of AAC. address issues in order to better meet both
AAC users’ and their families’ needs.
Implications for Parents Individuals with complex
communication needs are now more likely
to outlive their parents, often placing the
caregiver responsibilities on siblings (Dew Taking on the viewpoint of parents who

et al., 2011). There is a need to study the are raising a child who uses AAC can be
perception on AAC of siblings, study useful in successfully implementing AAC
strategies to feel comfortable with AAC practices and avoiding device
systems, and study strategies to foster use abandonment.
of the AAC system. In these cases, siblings
step into a ‘parent’ role. The success of a NOTE
sibling caregiver relationship is associated
with several different factors. Dew et al., 1. ‘Parents’ can include other primary
(2011) found in their study that siblings caregivers of a child, such as foster parents
who lived and played together growing up or grandparents.
were more welcoming in caring for their
brother or sister. If the child were REFERENCES
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CONCLUSION Fundamentals of psycholinguistics. Wiley-‐
Blackwell.

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Survey for Parental Perceptions of AAC

The questions below are intended to help parents communicate their concerns to speech
language pathologists. Please answer all questions honestly. You may circle N/A if the
question is not applicable to your situation.

1. Do you believe that your child’s AAC system allows for efficient conversation speed?

Yes No N/A Explain: __________________________________________________

2. Are you disappointed in the amount of malfunctions associated with your child’s AAC
system?

Yes No N/A Explain: __________________________________________________

3. Are you frustrated by limitations in vocabulary on your child’s AAC system?

Yes No N/A Explain: __________________________________________________

4. Are you satisfied with the amount of financial aid provided for your child’s AAC system?

Yes No N/A Explain: __________________________________________________

5. Are you pleased with the convenience and accessibility of your child’s AAC system?

Yes No N/A Explain: __________________________________________________

6. Are you content with your knowledge on speech therapy and AAC capabilities?

Yes No N/A Explain: __________________________________________________

7. Do you believe that you and your child have received enough training to efficiently use
your child’s AAC system?

Yes No N/A Explain: __________________________________________________

8. Do you find it easy to use and care for your child’s AAC device?

Yes No N/A Explain: __________________________________________________

9. Were your expectations of AAC fulfilled?

Yes No N/A Explain: __________________________________________________
The Challenges and Perceptions of Raising a Child Who Uses AAC: A Review of the Literature

10. Does communication through your child’s AAC system feel impersonal?

Yes No N/A Explain: __________________________________________________

11. Are you happy with the level of support your child receives for AAC help?

Yes No N/A Explain: __________________________________________________

12. Do you believe that communication partners respect and accept your child’s AAC
system?

Yes No N/A Explain: __________________________________________________

13. Do you believe that your culture negatively effects AAC use for your child?

Yes No N/A Explain: __________________________________________________

14. Do you believe that AAC increased your child’s level of communication independence?

Yes No N/A Explain: __________________________________________________

15. If your child who uses an AAC system is now an adult, does his or her age change the
amount of time the AAC system is used?

Yes No N/A Explain: __________________________________________________

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