ERIC EJ903163: When Autism and Deafness Coexist in Children: What We Know Now

2008·0.42 MB·English

by  ERIC

18412CX:ODYSSEY SPRING 2004** 4/21/08 1:08 PM Page 10
when autism
and deafness
Christen
coexist in
Szymanski,BA, and
Patrick J. Brice,
PhD, are both associated
with the Department of children
Psychology at Gallaudet
University in Washington,
D.C. Szymanski is a
doctoral student with
WHAT WE KNOW NOW
research and clinical
interests in working with
children with autism
spectrum disorders. Her By Christen Szymanski and Patrick J. Brice
areas of interest also
include psychological
assessment and child In February 2007, the Centers for Disease Control and Prevention
development. Brice directs
(2007a) released new statistics on the prevalence of autism in 8-year-
the clinical psychology
olds. Using data from a multistate national sample, the CDC
program and has research
and clinical interests in concluded that approximately 1 in 150 children in the United States
child development, parent- had been diagnosed with an autism spectrum disorder, a significant
child attachment,
increase over the previous estimate of 1 in 166, released six years
psychological assessment,
earlier (Centers for Disease Control and Prevention, 2007b). Either figure
and individual therapy.
represents an astounding change from earlier estimates. As the CDC
(2007b, para. 3) reports, “For decades, the best estimate for the prevalence
of autism was 4 to 5 per 10,000 children.”
While many explanations have been offered for the increased rate of autism, the true
cause remains unknown. Nonetheless, in the United States, diagnoses of autism are
increasing faster than any other diagnosis of developmental disability in children. But this
statement, like others pertaining to the characteristics of autism and the relevant
intervention services, does not tell the whole story forallchildren diagnosed with
autism. Every day, our knowledge grows about autism in those children who are hearing;
researchers and educators develop new strategies, new programs, and new diagnostic
instruments to serve these children. But research and intervention, as well as fund-raising
and media attention, typically exclude those who have additional disabilities or do not
speak English. Thus, the question becomes, “What do we really know about those
children who are deaf andhave autism?”
Though No Two Children With Autism Are Alike,
Common Characteristics Exist
Both children and adults with autism generally display a particular set of common
Right: Autism affects characteristics. The most commonly recognized include interactive difficulties (an
normal socialization, absence or insufficiency of smiling, laughing, and eye contact), limited communication
exhibited in these
photos.
Photos by John Consoli
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communicatively,
emotionally, and socially
isolated. This outcome is
essentially the same as the
core dimension of autism, a
situation that contributes
to the complexities of
diagnosis for these
children.
How Many Deaf
Children Have
Autism?
The rising estimate of the
number of children with
autism does not include
children who are deaf. To
begin to estimate the
number of children who
have both hearing loss and
autism, one can look at the
Annual Survey of Deaf and
Hard of Hearing Children
and Youth, which is
conducted by the Gallaudet
Research Institute.
In the survey for 2006-
2007, researchers reported
abilities, insistence on routines and characteristics of autism may look like
that there were 37,352 deaf and hard of
sameness (surprises and other changes are hearing loss and vice versa. If a child
hearing children in special education
difficult), repetitious play, difficulty with cannot hear, he or she will not respond
programs in the United States, including
make-believe play, challenges in when called by name—often a key item
both residential programs and public
interacting with peers, and behaviors that on checklists of autism, but also a
programs. Of that 37,352, in-depth
disrupt daily living. A diagnosis of autistic characteristic of deafness. And if a child
information was available for 35,706.
disorder is made when a child has cannot hear, social interactions with peers
Using the data from this national
impairments in his or her social may be difficult—due to an inability to
summary report, one can conclude that
interactions, communication abilities and hear conversations, not because he or she
469 deaf and hard of hearing children in
style, and behavior. Each child who is has autism. Likewise, does the child
the United States also had a diagnosis of
affected by autism is unique—in no two engage in self-stimulating behaviors
autism. In other words, 1 deaf child in 76
children with autism are the severity and because he or she cannot hear and thus
was receiving services for both a hearing
intensity of the impairments they plays independently?
loss and autism, about twice what is
encounter alike. Knowing if your child has a hearing
currently believed to be the national
loss is not always simple. And the fact
prevalence rate, 1 in 150. It is important
Does Autism Look Like that hearing loss often is not diagnosed
to remember that the Annual Survey of
Deafness? The Importance of until a child is 2 or 3 years old—the same
Deaf and Hard of Hearing Children and
Diagnosing a Hearing Loss time that autism is often diagnosed in
Youthdoes not account for every deaf child
Before characteristics of autism and children—does not make this conundrum
in the United States. Thus, these data
deafness can be described, it is necessary any easier. Children who do not have
may underrepresent the population of
to understand the importance of knowing access to communication or who do not
children with a hearing loss and autism.
if your child has a hearing loss. This express themselves—as is sometimes the
knowledge is essential because of the case with children who have an Can It Be That Autism “Does
possibility that a hearing loss is masking undiagnosed hearing loss or deafness— Not Exist Outside of Culture”?
autism. For example, several of the may grow up linguistically,
In countries other than the United States,
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Nonetheless, it is clear that children
who are deaf are also being diagnosed
with autism, and at a far greater rate.
We also know that there is an increased
prevalence of hearing loss in children
with autism. The increased prevalence of
deafness in children who have autism,
while startling, is not new. Therefore, one
would expect that we should know much
more about autism in children who have
a hearing loss. Unfortunately, the very
opposite is true—we know much, much
less about children who are deaf and have
autism.
prevalence rates of autism vary. In autism. Unfortunately, only limited
Unstrange Minds: Remapping the World of research is available to justify this Deaf Children Get Autism
Autism, Roy Richard Grinker (2007) position. In fact, the only available Diagnoses Later
suggests that a disability such as autism research indicates that deaf children with On average, a child who is deaf will be
“does not exist outside of culture” (p. 11), autism demonstrate the same diagnosed with autism later in life than a
and that the examination, diagnosis, and symptomatology as similarly diagnosed hearing child with autism. In one study,
understanding of autism must come from hearing children (Roper, Arnold, & deaf children were diagnosed an average
within a culture and not from an Monteiro, 2003). The countless variations of 1 year later: deaf-autistic group, 4.1
outsider’s perspective. With this notion, among deaf and hearing children in years old; hearing-autistic group, 3.1
one could argue that it is possible that a educational achievement, informational years old (Mandell, Novak, & Zubritsky,
child who is deaf and has autism may look exposure and access, and social interaction 2005). In another study, deaf children
very different from a hearing child with underscore the need for further research. were found to be diagnosed with autism
know the signs: 1
Possible Autism Red Flags (cid:129) Has unusual reactions to the
for Children Who Are Deaf environment that cannot be attributed
CHARACTERISTICS OF (cid:129) Resists being held or cuddled. to hearing loss, for example, fear of
autism in (cid:129) Doesn’t reply to his or her own name flashing lights, avoidance of smells
when tapped or when attention is and certain textures, refusal of hearing
shared. aids because of sensory sensitivity.
(cid:129) Has difficulty engaging in shared (cid:129) Lags behind peers in language
deaf
attention. Nonautistic children often development; signing skills develop
will visually track objects in a room or slowly even in an inclusive signing
look in the same direction that a environment.
children caregiver does. Children who are deaf (cid:129) Has difficulty understanding sign
do this often. A child who is deaf and language or verbal language unless it
has autism may not. is simplified.
(cid:129) Has difficulty imitating facial (cid:129) Does not play in the same way as
Autism and autism spectrum disorders expressions and actions of caregivers same-age peers. Play is rigid and
pose difficulties in nearly every aspect (smiling, sticking out the tongue, unimaginative.
of daily life. These disabilities disrupt a clapping). (cid:129) Shows an intense interest in a
(cid:129) Makes limited use of eye contact particular activity or object.
child’s social interactions and
even though it is needed for (cid:129) Has difficulty interacting with other
communication, and obstruct the
communication. deaf and hard of hearing students,
normal development of behaviors and
(cid:129) Has difficulty understanding others’ even with language access.
interests. Symptoms usually are needs and feelings. (If someone is hurt, (cid:129) Resists changes in routines, even
noticed before a child’s third birthday. does the child ask if the person is though changes are clearly
okay?) communicated.
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between their fifth and sixteenth An Ironic auditory processing
birthdays, while hearing children were Development: deficits (Ruttenberg &
diagnosed between their fourth and The Success Gordon, 1967).
eleventh birthdays (Roper et al., 2003). of Sign Therefore, vocal
The substantially later diagnosis of Language with languages may not be
autism in children who are deaf is Children with usable for communication or
alarming. Researchers and educators Autism even understood by the child
speculate that the reason behind delayed The use of signing with children with autism. Instead, a visual
diagnoses is the difficulty encountered who are autistic has been gaining communication system—for example,
in distinguishing characteristics of recognition and acceptance for more than the Picture Exchange Communication
deafness from characteristics of autism, 40 years, even during times when using System, or PECS (Frost & Bondy,
as well as limited resources for parents any visual language with deaf children 2002)—or sign language may be helpful,
and educators guiding the identification was prohibited. It seems ironic that the enabling the child to bypass any
of autism and deafness. Also, it is use of sign language has been successful difficulties with spoken languages. Some
possible that deaf children are diagnosed with children who have autism, since the researchers believe that communication
later because there are relatively few terrible difficulties with eye contact with an autistic child is impossible
psychological tests that have been made experienced by people with autism would without gestures and facial expressions
for or even include considerations for appear to prevent or interfere with any such as those used in sign language
children who are deaf. In fact, there are visually oriented learning. (Chamberlain & Mayberry, 2000).
no approved instruments for making a Some suggest that children with Sign language requires not only eye
diagnosis of autism in a child who is autism have language difficulties because contact but a skilled language model.
deaf. The current “gold standard” for they struggle with cross-modality— Sign language is often taught in public
diagnosing autism, the Autism converting auditory information to vocal schools to hearing children with autism
Diagnostic Observation Schedule, utterances (Bonvillian, Nelson, & Ryne, and other disabilities with success but in
includes a specific statement that it may 1981). Others have suggested that many cases on a limited basis because the
not be used with children who are deaf. children with autism have severe language model is not fluent. While
3
Socialization Milestones Communication Milestones Behavioral Milestones
Birth–6 months:Babbles, coos, and Birth–6 months:Babbles, coos, and Birth–6 months: Can smile and look
laughs, even if deaf; looks at others and laughs, even if deaf. at others in his or her visual field.
smiles.
6–12 months:Understands “no,” 6–12 months:Can look for hidden
6–12 months:Enjoys games that recognizes his or her own name, can obj4ects, explore the environment, and
involve reciprocal interaction and wave “bye-bye.” Uses “mama” or “dada” repeat behaviors that get praise.
2expressions of enjoyment by the child signs and words.
1–2 years:Can recognize himself or
such as “peek-a-boo” and “Where’s
1 year:Has well-developed gestures and herself in a mirror, looks at pictures in
baby?”; should raise his or her arms to
eye contact; is able to request or refuse. books, and begins to explore. Shows
be picked up.
affection—will offer hugs and kisses.
2–3 years:Can take turns in
1–2 years: Is very curious about other Begins to parallel-play with others, not
conversations and understands what
people and surroundings; will point, necessarily interacting but playing
sharing and helping are. Develops the
show, and bring objects to others. alongside them.
ability to copy and internalize signs and
2–3 years:May cry or throw tantrums words, and begins to develop two-word 2–3 years:Begins to pretend and
to get attention but is consoled when sentences (age 2 years) and ask questions engage in make-believe play with other
held. Can answer simple questions, asks (age 3 years). Vocabulary grows rapidly, children and adults; wants to be
others simple questions, and begins to from 200 or more words at age 2 to independent and begins to understand
understand language play (for example, more than 900 at age 3. others’ feelings.
rhymes). Begins pretend play with
3–4 years:Understands the perspectives
others.
of others and can empathize with them;
can tell stories and understand plays on
words.
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that spontaneous social responses system. Items on the survey included
and reactions of children who are those that typically appear on currently
deaf and have autism appear to used measures of autism. All of the
be the same as those of children children scored high for interaction
who are hearing (Roper et al., deficits with family members, peers, and
2003). However, in that study, others around them. But parents who
the deaf sample used only a few were deaf reported that problems with
research shows that hearing children with signs or gestures. None of the communication skills and behavior skills
autism acquire sign language and can use deaf sample used sign language; most interfered far less with their child’s life
it to communicate on a limited basis, one communicated with pictures while all than socialization problems. Parents who
could theorize that with continuous the hearing children used spoken were hearing reported that behavioral
access, a child who is deaf and has autism language, a difficult comparison. The problems and socialization were the most
would have even more exposure and be experience of the world by children who problematic areas. But the question
able to learn even more. After all, most are deaf is different from the experience becomes why are there differences?
deaf and hard of hearing children rely on of children who are hearing. Therefore, it Parents who were deaf reported that their
visual skills (Rosenhall, Nordin, would make sense that differences in children did not have the same behavioral
Sandstrom, Ahlsen, & Gillberg, 1999). behaviors or socialization patterns would characteristics (repetitive behaviors, self-
If visual skills are essential to the deaf be found; yet at this time there is no injurious behaviors, twirling, staring
child, and visual skills and visual definitive evidence of such. It also may through people) that one would expect
languages are essential to the child with be possible that socialization differences from a child with autism. Neither did
autism, then the communication needs of exist but are difficult to recognize for these children have the same
the child who is deaf and has autism researchers and educators not familiar characteristics reported by hearing
would appear to be best served visually. with deafness. For example, a child who
While not much recent research is is deaf and has autism may bang on the
available on the use of sign language table or wave to a classmate to get his or The Facts
with children who are deaf and have her attention. But how is this being
autism, early studies found that teaching interpreted? As a method of social
FACT 1:Deaf children are diagnosed
sign language led to spontaneous use of interaction (attention getting) typical of a
more often with an autism spectrum
communication in social situations and deaf child? Or as a behavior oddity in a
disorder than what is currently
some social interactions, as well as child with autism?
considered the prevalence rate of 1 in
unprompted responses (Fulwiler & Fouts,
150 children (Gallaudet Research
1976). More recently, in 2007, in a What Do Children Who Are
Institute, 2005).
predissertation study, the lead author of Deaf and Have Autism Look
the present article (Szymanski) found Like? FACT 2:Research has shown that
that children with a sign language The biggest question remains: What do hearing loss occurs more often in
vocabulary of more than 50 words did children who are deaf and have autism children who have autism than in
significantly better than those with more look like? Right now we are still not children without autism (Rosenhall et
limited vocabularies (less than 50 words) sure, but promising research, both recent al., 1999).
on questions relating to stereotypical and in the works, is slowly beginning to
autistic behavior, difficulties with provide some answers. In Szymanski’s FACT 3:Visual methods of
communication, social concerns, and 2007 predissertation project, 19 parental communication (e.g., sign language
interpersonal relationships. reports of deaf children with autism were and PECS) appear to be easier for
examined. Sixteen responding parents children with autism to understand
Between Deaf and Hearing, were deaf and 3 were hearing. All of the and use than spoken language.
Do Socialization and Behavior children included in the study had an
FACT 4:There are no known
Patterns Differ? existing diagnosis of autism. But, as has
instruments for diagnosing autism in a
There has not yet been a published study been suggested previously, the
child who is deaf.
solely investigating whether socialization complexities of distinguishing deafness
or behavior patterns of children who are from autism may very well mean that FACT 5:Development is just
deaf and have autism differ from those of some of the children included did not beginning of an understanding of how
children with autism who are hearing. meet all of the diagnostic criteria for children who are deaf and have autism
The only available information comes autism. However, all children did meet are best served, what they look like,
from Britain, where researchers reported the criteria for services within the school and which interventions are effective.
14 ODYSSEY SPR/SUM 2008
parents of their deaf children—especially are deaf and have autism really look like? What we really do know without a
in the areas of behavior and language. And there is that group of dedicated doubt is that researchers, educators, and
Knowing that these differences are out parents who have embarked on their own parents are more aware of the concerns
there makes it important for us to persist, effort to understand their children by related to autism in all children, and that
finding out not only why but also how establishing Autreat, a gathering for in the future, children with both deafness
best to serve these children. families of children with both hearing and autism will be guaranteed to have a
loss and autism (see http://www.deafautism. group of adults dedicated to making sure
In the End, com/autreat.html). their needs are met.
Just What Do We Know?
What we know about children who are
deaf and have autism is limited (see Box
References
on page 14). Some of the information
may be controversial and other
Bonvillian, J., Nelson, N., & Ryne, J. (1981). Sign language and autism. Journal
information still only ideas and
of Autism and Developmental Disorders, 11(1), 125-137.
hypotheses. We are not sure of the
communication, Centers for Disease Control and Prevention (2007a). Autism spectrum disorders
socialization, and overview.Retrieved from http://www.cdc.gov/ncbddd/autism/overview.htm
behavioral
Centers for Disease Control and Prevention (2007b). CDC releases new data on
implications of
autism spectrum disorders (ASDs) from multiple communities in the United States.
deafness for
Retrieved from http://www.cdc.gov/od/oc/media/pressrel/2007/r070
autism and
vice versa. Chamberlain, C., & Mayberry, R. I. (2000). Theorizing about the relation between
We are not American Sign Language and reading. In C. Chamberlain, J. P. Morford, & R. I.
sure how to Mayberry (Eds.), Language acquisition by eye(pp. 251-259). Mahwah, NJ: Erlbaum.
test these
Frost, L., & Bondy,A. (2002). The picture exchange communication system(2nd ed.).
children and
Newark, DE: Pyramid Educational Products.
even where to
educate them—in
Fulwiler,R., & Fouts, R. (1976). Acquisition of American Sign Language by a
deaf programs or
noncommunicating autistic child. Journal of Autism and Childhood Schizophrenia,
mainstreamed programs. Wealso are
6(1), 3-51.
still not sure which professionals are best
suited to work with these children. Gallaudet Research Institute. (2005). Regional and national summary report of
Though we have far to go, some small data from the 2004-2005 Annual Survey of Deaf and Hard of Hearing Children and
steps have already been taken. Youth.Washington, DC: Gallaudet University.
Residential schools are hiring increasing
Gallaudet Research Institute. (2007). Regional and national summary report of
numbers of qualified aides for children
data from the 2006-2007 Annual Survey of Deaf and Hard of Hearing Children and
who need them, and public schools are
Youth.Washington, DC: Gallaudet University.
inviting researchers to share information
on interventions. Young scholars are Grinker, R. R. (2007). Unstrange minds: Remapping the world of autism.Cambridge,
taking up the challenge of understanding MA: Basic Books.
language development in children who
Mandell, D., Novak, M., & Zubritsky,C. (2005). Factors associated with age of
are deaf and have autism in Texas, while
diagnosis among children with autism spectrum disorders. Pediatrics, 116(6),
educational interventions and practices
1480-1486.
for these children are being explored in
Missouri and Utah. Other researchers are Roper, L., Arnold, P., & Monteiro, B. (2003). Co-occurrence of autism and
looking to the neurological sciences to deafness. Autism, 7(3), 245-253.
explain why children with autism who
sign do better than children who do not Rosenhall, U., Nordin, V., Sandstrom, M., Ahlsen, G., & Gillberg, C. (1999).
on specific psychological tests. Research Autism and hearing loss. Journal of Autism and Developmental Disorders, 29(5), 349-
into the developmental characteristics of 357.
children who are deaf and have autism is
Ruttenberg, B., & Gordon, E. (1967). Evaluating the communication of the
occurring in hopes of answering the
autistic child. Journal of Speech and Hearing Disorders, 32,314-324.
essential question, What do children who
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