Journal of Deaf Studies and Deaf Education
Empirical Article
Needs of Parents of Children Who Are Deaf/Hard of Hearing With Autism Spectrum Disorder Susan Wiley*,1, Samantha Gustafson2, Justin Rozniak1 Cincinnati Children’s Hospital Medical Center Vanderbilt University
1 2
Received May 5, 2013; revisions received August 21, 2013; accepted September 2, 2013
There is a significant lack of evidence guiding the diagnosis and intervention for children who are deaf or hard of hearing (D/HH) with a diagnosis of an autism spectrum disorder (ASD). The prevalence of ASD among children with who are D/HH has been estimated to be between 1 and 4% (Jure, Rapin, & Tuchman, 1991; Roper, Arnold, & Monteiro, 2003; Szymanski, Brice, Lam, & Hotto, 2012). However, the prevalence of ASD in this population is difficult to determine, and estimates have been based on older literature and *Correspondence should be sent to Susan Wiley, Division of Developmental and Behavioral Pediatrics, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Avenue ML 4002, Cincinnati, OH 45229 (e-mail: [email protected]).
incomplete sampling of general populations. The diagnostic evaluations commonly used for those children suspected to have an ASD have not been validated on children who are D/HH. In fact, the guidance on administration of the Autism Diagnostic Observation Schedule (ADOS; Lord, Rutter, DiLavore, & Risi, 1999; Lord et al., 2000) specifically states that the ADOS is not validated on children who are D/HH. The only screening or assessment tools that have been administered to small samples of children with who are D/HH include the Autism Behavior Checklist (Roper, Arnold, & Monteiro, 2003), the Sensory Profile (Gal, Dyck, & Passmore, 2010), and the Baby and Infant Screen for Children with aUtIsm Traits (Worley, Matson, & Kozlowski, (2011). Unfortunately, even these tools have not been appropriately validated in children who are D/HH. Furthermore, the evidence supporting specific autism-related educational and therapeutic interventions, or information on adapting autism-specific interventions for children who are D/HH is nearly nonexistent (Szymanski, Brice, Lam, & Hotto, 2012). Existing evidence for interventions is primarily found within case reports on single children. For example, one study focused on the use of Picture Exchange Communication System for one deaf child (Malandraki & Okalidou, 2007). Another study reported on the effectiveness of a parent-training curriculum administered to one family of a child who was D/HH with Asperger’s syndrome (Garcia & Turk, 2007). Although
© The Author 2013. Published by Oxford University Press. All rights reserved. For Permissions, please email: [email protected]
doi:10.1093/deafed/ent044
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
Little is known about children who are deaf or hard of hearing (D/HH) with a coexisting autism spectrum disorder (ASD). The objective of our study was to understand the needs of children who are D/HH with coexisting ASD. We posed questions for group discussion about diagnostic process, impact of dual diagnosis on communication, and helpful resources. Four parents of three children participated. Challenges in the diagnostic process included the challenges in the appropriateness of the evaluation tools and the limited expertise of the professionals performing the evaluations. Broad-based special educational settings were perceived as helpful. Families described a range of broad-based communication strategies (spoken, sign, and written language, augmentative communication approaches). Families prioritized a focus on behavior and day-to-day functioning over academic performance. Families recognized the lack of professionals who understand ASD and deafness but have found the internet and technology as a mechanism to connect to information and families with similar needs.
Deaf/Hard of Hearing Children With Autism Spectrum 41
Methods This study used focus group methodology with structured, open-ended questions and included parents of children with a known dual diagnosis of hearing loss and ASD. All families were identified through a pediatric urban tertiary care center housing a strong audiology/ pediatric otolaryngology program and a developmental and behavioral pediatrics division. The Division of Developmental and Behavioral Pediatrics has participated in the Autism Treatment Network (ATN/AIR) since 2008 and uses a standardized approach to ASD evaluations. Eligible children and families were identified through a clinical registry of children who are D/HH. This registry includes children who were evaluated by a developmental pediatrician who collaborates with the interdisciplinary Ear and Hearing Center in the multidisciplinary evaluations for children who are D/HH. Families of children who were D/HH and had received a diagnosis of ASD through interdisciplinary assessment were considered eligible for this study. The interdisciplinary assessment for children suspected as having an ASD has followed the autism evaluation protocol based on guidance from the ATN. This protocol includes a psychological evaluation and speech/language evaluations. The psychology protocol uses either the Stanford-Binet Intelligence scale (Roid,
2003) or Mullens scale of Infant Development (Mullen, 1995) for developmental/cognitive testing. Behavioral measures include the Behavior Rating Inventory of Executive Function (Gioia, Isquith, Guy, & Kenworthy, 2005), Child Behavior Checklist (Achenbach & Rescorla, 2001), Gilliam Autism Rating scale (Gilliam, 1995), and the Childhood Autism Rating scale (Schopler, Van Bourgondien, Wellman, & Love, 2010) and Autism Diagnostic Interview (Rutter, Le Couteur, & Lord, 1994). The speech/language evaluation includes a measure of speech and language abilities (Preschool Language scaleIV (Zimmerman, Steiner, & Pond, 2002, or Preschool Language scale-V (Zimmerman, Steiner, & Pond, 2011), or Clinical Evaluation of Language Fundamentals (CELF; Semel, Wiig, & Secord, 2003), a pragmatic evaluation with the Social Communication Questionnaire (Rutter, Bailey, & Lord, 2003), Pragmatics profile of the CELF (Semel, Wiig, & Secord, 2003), and/or an Autism Diagnostic Observation Schedule (Lord, Rutter, DiLavore, & Risi, 1999). Our clinical protocol makes some adaptations for children who are D/HH. Sign language interpreters are included in the evaluation process when appropriate. In children with significant challenges with sign production or processing sign language, we have requested that an interpreter from the child’s school be used for the evaluation process in order to convey information more effectively to the child and understand their sign utterances if they are somewhat idiosyncratic. This approach is used to gain the best “snapshot” of the child’s capabilities and needs. All of the children represented in the study were seen by a developmental pediatrician who has extensive experience with children who are D/HH. The above evaluation tools were used to clarify developmental patterns and were interpreted with the impact of hearing loss on scoring considered. A team of professionals representing expertise in ASD and expertise in hearing loss arrived at a consensus opinion for the diagnosis of ASD. Families of 22 children with the dual diagnosis of any degree of hearing loss and the presence of an autism spectrum label were identified. Eighteen families living within a 2-hr drive received a letter describing the study. This was followed by phone contact by study personnel to explain the study further, answer any questions regarding the study, and determine if
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
these two case studies provided some insight into the beneficial effects of specific interventions, it is difficult to generalize these studies broadly. Even less is known regarding family needs for these children who do not fully fit into the D/HH community or the autism community (Beals, 2004; Myck-Wayne, Robinson, & Henson, 2011). Families are excellent resources for information regarding the day-to-day needs of their children. Information gained from families can help us identify appropriate research questions as well as guide clinical programs and educational settings. Without a clearer understanding of the impact of this dual diagnosis, it is challenging to move forward our understanding of appropriate interventions for the dual diagnosis. The purpose of our study was to gain an understanding of the needs of children who are D/HH and have a coexisting ASD from the family’s perspective.
42 Journal of Deaf Studies and Deaf Education 19:1 January 2014
families were interested in participating. Of the 18 families receiving a letter, three were returned due to incorrect address. Two phone numbers were disconnected. Of those 13 families successfully contacted, six families planned to participate, and two others indicated they would be interested but distance and scheduling prohibited participation. In an attempt to accommodate family needs, child care with trained personnel, interpreter services, and dinner were offered to participants. Focus group questions were generated based on background literature review. The focus group questions included the following:
6. What items on your wish list are most important to you? During the focus group, a trained facilitator from a state educational agency focusing on autism and other low incidence disabilities was used. Responses were audiotaped and transcribed. As the results were limited by small family participation, results were described based on questions rather than by theme. This study was approved by the Cincinnati Children’s Hospital Medical Center Institutional Review Board. Results Although six families responded with interest in participating, only three families attended. The four parents who participated were Caucasian, two parent families, and were highly educated (all parents and spouses who did not attend the session had a college degree or more). Of the three participating families, there were two mothers and two fathers.
Among the three children represented, there was a wide range of hearing loss and severity of autism represented. Table 1 illustrates the characteristics of interest for each child whose family participated in the focus group. One child had unilateral hearing loss of unknown etiology and high functioning pervasive developmental disorder, not otherwise specified (PDD NOS). The other two children had profound bilateral sensorineural hearing loss: one due to congenital cytomegalovirus (CMV) with autism and the other due to a complex genetic syndrome with PDD NOS. All children were identified with their hearing loss and their diagnosis of an ASD at a tertiary care center. The children attended suburban public school programs. Two of the three children had been enrolled in Early Intervention Services within the state that provides home-based services with providers knowledgeable in deaf education. The child with unilateral hearing loss was identified after the age of Early Intervention Services eligibility. Family Responses About Suspicions Beyond Hearing Loss and Diagnostic Process Two families recognized concerns related to an autism spectrum at 3–4 years of age. These concerns became most obvious by children’s structured exposure to peers in preschool programs. The experience around the diagnostic process varied for the families. There were some consistent concerns raised by the families related to a lack of parental involvement in the evaluation process and all three families noted that their children were asked to do things they knew the child could not do. Families described concrete examples of strategies used to encourage participation in testing that were not effective, such as using nonmotivating reinforcement for participation. For instance, one child was given stickers as a reward for completing tasks during testing. The parent expressed that “They used stickers in his evaluation to get him to participate, but he didn’t care about stickers. They never asked for my input, like what would help reinforce him or keep him in the room, keep him happy.”
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
1. Tell us about your experiences as you received your child’s diagnosis of ASD. 2. How has the diagnosis of an autism spectrum paired with hearing loss impacted your family? 3. How has the dual diagnosis impacted communication decisions and strategies for your child? 4. What resources/supports have you found helpful? Where did you find out about these resources (professionals, website, other people, and so forth)? 5. In thinking about your child with hearing loss and an ASD, what is on your wish list?
Characteristics of Children Represented
Oral Visual schedules Social stories
Communication mode
Autism-specific strategies used
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
Note. ASD, autism spectrum disorder; CI, cochlear implant; CMV, cytomegalovirus; EI, early intervention; HL, hearing loss; HA, hearing aid; IEP, individualized education program; PDD NOS, pervasive developmental disorder, not otherwise specified; PECS, picture exchange communication system.
Visual schedules PECS Dynavox
Autism classroom Home-based EI Classroom for children with motor disabilities Special needs preschool Developmental disabilities classroom Signing
Social communication classroom Home-based EI School for the Deaf with manual approach in apraxia program
Mainstream setting with IEP supports Special needs preschool
Total communication: writing, signing, spoken language Visual schedules Use PECS
CHARGE syndrome Profound bilateral Birth due to syndrome 6 months Unilateral CI, no longer using PDD NOS 6 years Unknown
Child 3
Congenital CMV Profound bilateral 2 months 4 months Bilateral CI Autism 4 years 3 years
Child 2
Unknown Unilateral mild to moderate 3 years 4 years HA PDD NOS 6 years 4 years
Child 1
Etiology of HL Type and degree of HL Age of HL identification Age of amplification Type of amplification Autism spectrum label Age of identification of ASD Age family suspected developmental difference Current educational placement Early educational placements
Characteristic
Table 1 Characteristics of children
Deaf/Hard of Hearing Children With Autism Spectrum 43
44 Journal of Deaf Studies and Deaf Education 19:1 January 2014
Families recognized that the evaluation process must include things that go beyond a child’s capabilities, but they specifically commented on the challenges put before their children with the evaluation tools and process. They just tried to do stuff that you knew was a waste of time. They went way over his head.
Impact of Diagnosis on Family The families all reported some challenges with informing their extended family about their child’s diagnoses; however, extended family members showed an interest in learning more. They were interested in understanding how to communicate effectively or provide appropriate behavioral approaches once they gained an understanding of the child’s needs related to ASD. For the family of a child with the complex genetic syndrome, the diagnosis of the syndrome had the greater impact on extended family members than the label of an ASD. Some families experienced denial from extended family members in accepting a child’s needs. Extended family challenges with acceptance related to both hearing loss as well as behavioral differences from the ASD. One grandparent was concerned about pointing out a child’s difference by choosing a colored hearing aid earmold that could be easily visible to others. Families were also sometimes given advice by extended family members about behavioral challenges that did not take into consideration challenges related to ASD.
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
One family also noted a challenge with the communication needs of their child during the evaluation process. Although, there was a sign language interpreter available for the evaluation to provide access to the child’s communication and provide a mechanism for conveying information to the child, this was insufficient due to the child’s lack of experience in using an interpreter. “The evaluation included an interpreter. He had never used an interpreter. He had no concept she was talking to him by someone else.” Families also had varied emotional experiences related to receiving the diagnosis of an ASD. One family felt “validated” about their prior concerns and suspicions of the autism spectrum label and noted it was “freeing.” They were “ready” for testing to know for sure what they thought was going on. Despite these feelings of validation and recognition that a label would open more opportunities for their child, the experience was still emotional. The experiences related to the evaluation process varied among the families. One family felt the process was very open and honest, whereas another family experienced considerable problems. One family described an evaluation that was particularly concerning. This family felt they were not considered as part of the evaluation process; that inappropriate intellectual assessment tools were used (i.e., a tool not valid in children who are D/HH), and most importantly, that the evaluator was insufficiently trained and inexperienced in assessment for the dual diagnosis for children with hearing loss and an ASD. It is important to note that this family’s child was evaluated and diagnosed by a graduate student with a supervising professional observing through a twoway mirror. This parent commented that the process was semiprofessional and that she “felt like he was a guinea pig.”
Not only was this parent concerned with the diagnostic process but she also expressed discomfort in the diagnostic delivery. This parent felt anger about how the information was conveyed as she considered the person disclosing the diagnosis to have “limited qualifications” to convey the information, have given “blanket statements which were not true,” and unaware of her emotional cues of needing tissues causing her to “have to ask for the box of tissues which were behind the student.” This parent conveyed feelings of being alone and having significant anger around the diagnostic process. She recognized that they needed the child’s diagnosis on paper but wished she did not do the testing. She also recognized that the student conveying the diagnosis was likely quite nervous. In general, families who had an emotional response to the diagnostic process noted a need to have a diagnostic label to access additional services related to their child’s communication disorder and seemed to recognize that the assessment battery was insufficient to take into consideration their child’s needs related to his/her hearing loss.
Deaf/Hard of Hearing Children With Autism Spectrum 45
Finding Effective Resources All three families noted that schools were their primary resources for information and support. Teachers were specifically identified as critical professionals for assisting them in learning more about their child’s needs and in identifying interventions and resources for their child. It was particularly important for families to have strong communication between school and home to allow consistent followthrough for supporting their child’s development at home. “It all depends on your teacher. We used to get materials to bring home that we could work on with her on vacations and breaks. Now we aren’t getting any of that.” Additionally, the internet was noted as a consistent resource used among the families. All three families used the internet to learn more about strategies to help their children, to network with other families, and to connect with professionals via e-mail for providing guidance when problems arose. One family mentioned the positive impact of daily e-mail communication with their child’s teacher.
Other Identified Themes: Challenging Behaviors Families also identified behavioral struggles as potential challenges from time to time. The need for routine and the need to prepare their children for change was a common experience. One parent described the necessity of preparing for change related to their child’s anticipation of needing to change his hearing aid battery. “If the hearing aid battery goes dead, you have to work him through that. We have to have a plan. It’s little things like that.” Another family noted the broad need for preparing their child on what to expect from the day. You really have to prep him for what it is going to be ahead of time otherwise you don’t know what is going to happen, or when it is out of his expectations, you really have to deal with a meltdown. He is extremely routine driven. Another family struggled substantially with behavior when out in the community. “This is a child who is doing well in several subjects, but in the hallway, he’s attacking other children, he’s hitting or kicking, he lays around on the floor.” These challenges prompted the families to discuss their priority to focus on functional and social skills over academic skills. It’s very difficult to teach him what’s socially acceptable…At some point, I’m going to look at him and say, it doesn’t matter to me you know your multiplication table, I can’t take you anywhere, I can’t take you to the grocery store. Other Identified Themes: Child’s Communication Needs The impact of the dual diagnosis on communication was also evident. The use of visual schedules was also a common theme among the families. All families noted how important and helpful visual schedules are. Social stories and social skills groups were also mentioned as helpful, but families were limited by geographical considerations because most social skills groups were housed far from their region of the city and would require scheduling considerations and travel time in order to participate.
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
One family chose to share evaluation reports with extended family members. This seemed to help their understanding and processing of the child’s needs. They now ask more questions such as “did I deal with that okay, or how did I deal with that?” Another family noted that extended family members were in denial and commented that “he’s an only child and he’s been spoiled.” However, over time, extended family members have sought out more education and shown an interest in taking sign language classes. This parent reported that “having them on board and not in denial has been very helpful.” Positive comments about extended family members indicated that the impact of “having a child with autism and hearing loss has been on-going and constantly evolving. It has made them more compassionate and brought us closer to our relatives.” One family discussed how they decide who to disclose information about a child’s needs. They prioritized sharing information about their child’s needs with people who have closer interactions and a need to know how to respond to specific needs.
46 Journal of Deaf Studies and Deaf Education 19:1 January 2014
Other’s noted that it is difficult to follow through with communication strategies that are used at school (picture exchange communication system [PECS]) in the home setting. I don’t force it. I follow his lead. At home, if he weren’t communicating with me, I would force the issue (PECS). He really is a total communication child. He does best if you put things in writing, and you sign, and you speak. He can soak and absorb everything you throw at him.
Wish List Families were asked to convey what was on their wishlist. Two families indicated that they had found schools
Discussion With the paucity of information about family needs in the literature, focus group methodology can serve as a first-step to address the tremendous gap in care that children who are D/HH with an ASD experience. Despite a small number of parent participants, valuable information related to the diagnosis and care of children with a dual diagnosis of hearing loss and ASD were shared. Challenges in the diagnostic process included the impact of not having appropriate evaluation tools that can take into consideration a child’s hearing loss and communication needs as well as difficulties with comfort level of the professionals who are evaluating children with ASD. In our setting, many members of the team of providers are knowledgeable in ASD but do not have much exposure to or experience evaluating children who are D/HH. Many families indicated concerns about their child being asked to do things that they felt were beyond their capability. This is a common aspect of structured evaluations as many tools require children to miss a number of consecutive items in order to obtain a “ceiling” of capabilities. Whereas this information may be helpful in understanding a child’s strengths, it is important to convey this aspect of evaluation to families. Families
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
One family noted it was challenging for their child to initiate communication. “He has a hard time expressing his wants. He can’t express when he is hurt. I have to prompt him to use his signs and he is getting better with that.” Another family described the importance of amplification for their child. Their child gets very upset when he does not have his amplification. This child has unilateral hearing loss and can understand and communicate when not using amplification, but this comment suggests he relies on unilateral amplification for processing information. Issues related to interpreters were raised by two families. One family noted that using an interpreter during the diagnostic process posed challenges as their child had never used an interpreter. Over time, this child was able to rely on an interpreter to access communication. This parent described current concerns about losing interpreter services through the school program as he was doing well with oral communication as well. Another family had to advocate strongly for an interpreter for their child during school. This addition to the child’s programming has allowed expansion of the child’s communication strategies. The qualifications and expertise of professionals were important to families. Having at least a master’s in the content area (autism/special education or deaf education) was mentioned as important. It also was noted that it would be helpful if the clinical therapists outside of the educational system who focus on ASD were knowledgeable about needs related to deafness.
in other states with specialized instruction for dual diagnosis (deafness and autism, deafness and vision impairment) that they wished were readily accessible. Access to social skills groups near their home region was also noted as desirable by two families. Families were appreciative of extended school year (ESY) services, but in general found them insufficient to meet their children’s needs. “He qualifies for ESY, but it’s two days a week for just a couple of hours. I appreciate them doing it, but it is not enough. He needs intensive programming year-round.” It was also important to families to be able to observe their children’s outpatient clinical therapy. In some settings there are video monitors where families can observe therapy. This was appreciated by families who had experienced this technology and agreed by others that if they had access to this, they would find it very helpful and allow them to observe interventions to try at home with their child.
Deaf/Hard of Hearing Children With Autism Spectrum 47
settings, services may be provided with little opportunity to collaborate with individuals outside the content area of expertise. The lack of proximity and time to build teams of providers is a significant limitation for the interventions of these more complex children. Families indirectly mentioned a number of needs related to communication. Similar to the findings of Myck-Wayne et al., the children represented in our small group used communication systems relying on multimodal strategies. This was the case even with all participating families having pursued amplification and when clinically appropriate, cochlear implantation. Families described a range of strategies, including reliance on visual supports, social stories, Picture Exchange Communication System, written language, sign language, and augmentative communication devices. These strategies span well beyond the traditional communication choices of families with typically developing children who are D/HH. Providers within the field of deafness should recognize that the traditional communication tools used by children who are D/HH are insufficient for addressing the underlying communication disorder of children who are D/HH with an ASD. By limiting the communication intervention to traditional strategies and misunderstanding the need to develop foundational communication skills such as joint attention, turn taking, and choice making further delays in the development of an effective communication system for children with the dual diagnosis are likely to occur. Within educational settings, families preferred to identify goals and interventions which focus on behavior and day-to-day functioning over academic performance. Families found schools to be a strong resource for information. This may relate to the interdisciplinary nature of school intervention and the opportunities within their specific school districts for collaborative intervention. Furthermore, families found the internet to be very helpful in finding resources and in family-to-family networking. Connecting with families with similar experiences is limited by the geographic spread of children with the dual diagnosis as well as the lack of support groups specific to the dual diagnosis. Thus, the internet can serve as a source of connection to others with similar needs for some families.
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
were also interested in providing more guidance to evaluators related specifically to how their children may participate more effectively. With the realization that evaluation items may need to be presented in a specific manner, it is helpful to have the family’s expertise about their child’s interests to encourage continued participation. A struggle one family experienced during their child’s evaluation was the inclusion of a trainee. Many tertiary assessment locations also serve as training sites. This is helpful in exposing new professionals into the field to the complex presentations of children. However the inclusion of individuals newer to the field of assessment may contribute to families being less trustworthy of the conclusions from the assessment. In these more complex evaluations, it may be appropriate for supervisors to be more actively involved in the evaluation and the discussion of the results with the family. It is also noteworthy to mention that the established protocols for children with autism are not fully appropriate for children who are D/HH. However, even with the lack of validated protocols, it is reasonable to make a case for the use of standardized measures to evaluate children rather than relying solely on clinical impression. There are limitations in using protocols. For example, the cognitive testing battery commonly used for children with ASD may not be appropriate for children who are D/HH. Therefore, evaluators need to recognize when to shift from a protocol to choose a more appropriate measure of a similar construct. Families also noted a challenge in finding knowledgeable professionals in therapeutic settings where there is a paucity of providers with expertise in both content areas of hearing loss and autism. This challenge is similar to that of the families described by the work of Myck-Wayne et al. This study noted that families described fragmented care, challenges in responsiveness of professionals to collaborate, and insufficient knowledge within the deaf education programs to address needs related to an ASD. The families who participated in our study found broad-based special educational settings to be more effective for their children than deaf education programs or clinical therapeutic settings. This may be due to the educators and therapists in school settings having access to expertise across disability labels with close proximity. In clinical
48 Journal of Deaf Studies and Deaf Education 19:1 January 2014
the information from this study may be difficult to generalize to a broader scope of families. Furthermore, participating parents were particularly effective advocates for their children, were technologically knowledgeable, and had ready access to the internet. Studies of this type often include information from mothers rather than both caregivers. The inclusion of two fathers participating in the focus group provided a broader perspective on important issues. Despite these limitations, this forum was an important step in beginning to understand the needs of families of children who are D/HH with ASD. The information gleaned from families’ experiences is important to help guide knowledge, provision of care, and prioritizing research questions to answer in order to develop and implement evidence-based practice for this complex group of children. Funding Health Resources and Services Administration (R40MC21513); The Health Resources and Services Administration, US Department of Health and Human Services (HRSA-11–036); Leadership Education in Neurodevelopmental and Related Disabilities. Conflicts of Interest No conflicts of interest were reported. Acknowledgments We wish to thank the participating families for helping guide our understanding of the unique needs of children who are D/HH with an ASD. Their candor in sharing their personal experiences is invaluable, and we hope their knowledge will make us better people and professionals. We would also like to thank Donna Owens from the Ohio Center for Autism and Low Incidence for facilitating the focus group. References Achenbach, T. M., & Rescorla, L. A. (2001). The child behavior checklist. Manual for the ASEBA school-age forms and profiles. Burlington, VT: University of Vermont, Research Center
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
It is important to recognize that there were positive experiences that families had in their journey. They described that family members became more accepting of their child’s needs and their child’s needs have prompted extended family members to become more compassionate. Our families conveyed some similarities and differences in their experiences as compared with families of children who are D/HH. Within the literature regarding family needs and perspectives about early identification of hearing loss Young & Tattersall (2007) and McCracken, Young, & Tattersall (2008) noted that, in general, families felt positive about identifying a hearing loss at a young age; however, there were pressures related to achieving based on a time table. They also noted families were desiring to avoid abnormal development and had greater dissatisfaction when it was not clear how to best intervene for their child’s needs. These investigators also indicated family’s desire for family-to-family support as well as receiving familycentered practice. Families were willing to convey how a system might be improved. The overlapping experience of the families in our study were in their desire for family-to-family support and willingness to convey improvements in the current system of care. Safe, Joosten, & Molineux (2012) interviewed families of children with ASD. The families of children with ASD described similar challenges as compared with the families in our study. Safe’s families described changing expectations of normality, frustrations in finding the right supports, including within school settings, and a sense of social isolation. These families also noted difficulties in finding peers for their children. These families also indicated it can be difficult to manage behaviors and they experience restrictions in activities in which their families can participate. Many families noted low levels of social supports. This study was limited by low participation despite offering skilled daycare and interpreter services for children. We had hoped these strategies would assist with the children’s care needs and allow families to more readily participate. However, as the parents who did participate indicated, it is hard for their children to have a different schedule, particularly without knowing specifically how to prepare their child for a new experience. With a small group of highly educated parents,
Deaf/Hard of Hearing Children With Autism Spectrum 49 Myck-Wayne, J., Robinson, S., & Henson, E. (2011). Serving and supporting young children with a dual diagnosis of hearing loss and autism: the stories of four families. American Annals of the Deaf, 156, 379–390. Roid, G. (2003). Stanford-Binet Intelligence scales (5th Ed.). Torrance, CA: Houghton Mifflin Harcourt. Roper, L., Arnold, P., & Monteiro, B. (2003). Co-occurrence of autism and deafness: diagnostic considerations. Autism, 7, 245–253. Rutter, M., Le Couteur, A., & Lord, C. (1994). Autism diagnostic interview-revised. Rottance, CA: Western Psychological Services. Rutter, M., Bailey, A., & Lord, C. (2003). Social communication questionnaire. Rottance, CA: Western Psychological Services. Schopler, E., Van Bourgondien, M. E., Wellman, G. J., & Love, S. R. (2010). Childhood Autism Rating scale (2nd Ed.). Torrance, CA: Western Psychological Services. Safe, A., Joosten, A., & Molineux, M. (2012). The experiences of mothers of children with autism: managing multiple roles. Journal of Intellectual & Developmental Disability, 37, 294–302. Semel, E., Wiig, E., & Secord, W. (2003). Clinical evaluation of language fundamentals. (4th Ed.). San Antonio, TX: Psychological Corporation. Szymanski, C. A., Brice, P. J., Lam, K. H., & Hotto, S. A. (2012). Deaf children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42, 2027–2037. doi:10.1007/s10803-012-1452-9 Worley, J. A., Matson, J. L., & Kozlowski, A. M. (2011). The effects of hearing impairment on symptoms of autism in toddlers. Developmental Neurorehabilitation, 14, 171–176. do i:10.3109/17518423.2011.564600 Young, A., & Tattersall, H. (2007). Universal newborn hearing screening and early identification of deafness: Parents’ responses to knowing early and their expectations of child communication development. Journal of Deaf Studies and Deaf Education, 12, 209–220. Zimmerman, I. L., Steiner, V. G., & Pond, R. E. (2002). Preschool language scale (4th Ed.). San Antonio, TX: Harcourt Assessment Company. Zimmerman, I. L., Steiner, V. G., & Pond, R. E. (2011). Preschool Language scale-V. San Antonio, TX: Pearson.
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
for Children, Youth, and Families, Achenbach System of Empirically Based Assessment. Beals, K. (2004). Early intervention in deafness and autism: one family’s experiences, reflections, recommendations. Infants and Young Children, 17, 284–290. Gal, E., Dyck, M. J., & Passmore, A. (2010). Relationships between stereotyped movements and sensory processing disorders in children with and without developmental or sensory disorders. American Journal of Occupational Therapy, 64, 453–461. Garcia, R., & Turk, J. (2007). The applicability of WebsterStratton Parenting Programmes to deaf children with emotional and behavioural problems, and autism, and their families: annotation and case report of a child with autistic spectrum disorder. Clinical Child Psychology and Psychiatry, 12, 125–136. Gilliam, J. E. (1995). Gilliam autism rating scale (2nd Ed.). Torrance, CA: Western Psychological Services. Gioia, G. A., Isquith, P. K., Guy, S. C., & Kenworthy, L. (2005). Brief behavior rating inventory of executive function (BRIEF). Lytham St Annes, England: PAR. Jure, R., Rapin, I., & Tuchman, R. F. (1991). Hearing-impaired autistic children. Developmental Medicine & Child Neurology, 33, 1062–1072. Lord, C., Rutter, M., DiLavore, P. C., & Risi, S. (1999). Autism diagnostic observation schedule-WPS (ADOS-WPS). Los Angeles, CA: Western Psychological Services. Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Jr., Leventhal, B. L., DiLavore, P. C., & Rutter, M. (2000). The autism diagnostic observation schedule-generic: a standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders, 30, 205–223. Malandraki, G., & Okalidou, A. (2007). The application of PECS in a deaf child with autism: a case study. Focus on Autism and Other Developmental Disabilities, 22, 23. McCracken, W., Young, A., & Tattersall, H. (2008). Universal newborn hearing screening: parental reflections on very early audiological management. Ear and Hearing, 29, 54–64. Mullen, E. (1995). Mullens scale of early learning. Upper Saddle River, NJ: Pearson.
Empirical Article
Needs of Parents of Children Who Are Deaf/Hard of Hearing With Autism Spectrum Disorder Susan Wiley*,1, Samantha Gustafson2, Justin Rozniak1 Cincinnati Children’s Hospital Medical Center Vanderbilt University
1 2
Received May 5, 2013; revisions received August 21, 2013; accepted September 2, 2013
There is a significant lack of evidence guiding the diagnosis and intervention for children who are deaf or hard of hearing (D/HH) with a diagnosis of an autism spectrum disorder (ASD). The prevalence of ASD among children with who are D/HH has been estimated to be between 1 and 4% (Jure, Rapin, & Tuchman, 1991; Roper, Arnold, & Monteiro, 2003; Szymanski, Brice, Lam, & Hotto, 2012). However, the prevalence of ASD in this population is difficult to determine, and estimates have been based on older literature and *Correspondence should be sent to Susan Wiley, Division of Developmental and Behavioral Pediatrics, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Avenue ML 4002, Cincinnati, OH 45229 (e-mail: [email protected]).
incomplete sampling of general populations. The diagnostic evaluations commonly used for those children suspected to have an ASD have not been validated on children who are D/HH. In fact, the guidance on administration of the Autism Diagnostic Observation Schedule (ADOS; Lord, Rutter, DiLavore, & Risi, 1999; Lord et al., 2000) specifically states that the ADOS is not validated on children who are D/HH. The only screening or assessment tools that have been administered to small samples of children with who are D/HH include the Autism Behavior Checklist (Roper, Arnold, & Monteiro, 2003), the Sensory Profile (Gal, Dyck, & Passmore, 2010), and the Baby and Infant Screen for Children with aUtIsm Traits (Worley, Matson, & Kozlowski, (2011). Unfortunately, even these tools have not been appropriately validated in children who are D/HH. Furthermore, the evidence supporting specific autism-related educational and therapeutic interventions, or information on adapting autism-specific interventions for children who are D/HH is nearly nonexistent (Szymanski, Brice, Lam, & Hotto, 2012). Existing evidence for interventions is primarily found within case reports on single children. For example, one study focused on the use of Picture Exchange Communication System for one deaf child (Malandraki & Okalidou, 2007). Another study reported on the effectiveness of a parent-training curriculum administered to one family of a child who was D/HH with Asperger’s syndrome (Garcia & Turk, 2007). Although
© The Author 2013. Published by Oxford University Press. All rights reserved. For Permissions, please email: [email protected]
doi:10.1093/deafed/ent044
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
Little is known about children who are deaf or hard of hearing (D/HH) with a coexisting autism spectrum disorder (ASD). The objective of our study was to understand the needs of children who are D/HH with coexisting ASD. We posed questions for group discussion about diagnostic process, impact of dual diagnosis on communication, and helpful resources. Four parents of three children participated. Challenges in the diagnostic process included the challenges in the appropriateness of the evaluation tools and the limited expertise of the professionals performing the evaluations. Broad-based special educational settings were perceived as helpful. Families described a range of broad-based communication strategies (spoken, sign, and written language, augmentative communication approaches). Families prioritized a focus on behavior and day-to-day functioning over academic performance. Families recognized the lack of professionals who understand ASD and deafness but have found the internet and technology as a mechanism to connect to information and families with similar needs.
Deaf/Hard of Hearing Children With Autism Spectrum 41
Methods This study used focus group methodology with structured, open-ended questions and included parents of children with a known dual diagnosis of hearing loss and ASD. All families were identified through a pediatric urban tertiary care center housing a strong audiology/ pediatric otolaryngology program and a developmental and behavioral pediatrics division. The Division of Developmental and Behavioral Pediatrics has participated in the Autism Treatment Network (ATN/AIR) since 2008 and uses a standardized approach to ASD evaluations. Eligible children and families were identified through a clinical registry of children who are D/HH. This registry includes children who were evaluated by a developmental pediatrician who collaborates with the interdisciplinary Ear and Hearing Center in the multidisciplinary evaluations for children who are D/HH. Families of children who were D/HH and had received a diagnosis of ASD through interdisciplinary assessment were considered eligible for this study. The interdisciplinary assessment for children suspected as having an ASD has followed the autism evaluation protocol based on guidance from the ATN. This protocol includes a psychological evaluation and speech/language evaluations. The psychology protocol uses either the Stanford-Binet Intelligence scale (Roid,
2003) or Mullens scale of Infant Development (Mullen, 1995) for developmental/cognitive testing. Behavioral measures include the Behavior Rating Inventory of Executive Function (Gioia, Isquith, Guy, & Kenworthy, 2005), Child Behavior Checklist (Achenbach & Rescorla, 2001), Gilliam Autism Rating scale (Gilliam, 1995), and the Childhood Autism Rating scale (Schopler, Van Bourgondien, Wellman, & Love, 2010) and Autism Diagnostic Interview (Rutter, Le Couteur, & Lord, 1994). The speech/language evaluation includes a measure of speech and language abilities (Preschool Language scaleIV (Zimmerman, Steiner, & Pond, 2002, or Preschool Language scale-V (Zimmerman, Steiner, & Pond, 2011), or Clinical Evaluation of Language Fundamentals (CELF; Semel, Wiig, & Secord, 2003), a pragmatic evaluation with the Social Communication Questionnaire (Rutter, Bailey, & Lord, 2003), Pragmatics profile of the CELF (Semel, Wiig, & Secord, 2003), and/or an Autism Diagnostic Observation Schedule (Lord, Rutter, DiLavore, & Risi, 1999). Our clinical protocol makes some adaptations for children who are D/HH. Sign language interpreters are included in the evaluation process when appropriate. In children with significant challenges with sign production or processing sign language, we have requested that an interpreter from the child’s school be used for the evaluation process in order to convey information more effectively to the child and understand their sign utterances if they are somewhat idiosyncratic. This approach is used to gain the best “snapshot” of the child’s capabilities and needs. All of the children represented in the study were seen by a developmental pediatrician who has extensive experience with children who are D/HH. The above evaluation tools were used to clarify developmental patterns and were interpreted with the impact of hearing loss on scoring considered. A team of professionals representing expertise in ASD and expertise in hearing loss arrived at a consensus opinion for the diagnosis of ASD. Families of 22 children with the dual diagnosis of any degree of hearing loss and the presence of an autism spectrum label were identified. Eighteen families living within a 2-hr drive received a letter describing the study. This was followed by phone contact by study personnel to explain the study further, answer any questions regarding the study, and determine if
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
these two case studies provided some insight into the beneficial effects of specific interventions, it is difficult to generalize these studies broadly. Even less is known regarding family needs for these children who do not fully fit into the D/HH community or the autism community (Beals, 2004; Myck-Wayne, Robinson, & Henson, 2011). Families are excellent resources for information regarding the day-to-day needs of their children. Information gained from families can help us identify appropriate research questions as well as guide clinical programs and educational settings. Without a clearer understanding of the impact of this dual diagnosis, it is challenging to move forward our understanding of appropriate interventions for the dual diagnosis. The purpose of our study was to gain an understanding of the needs of children who are D/HH and have a coexisting ASD from the family’s perspective.
42 Journal of Deaf Studies and Deaf Education 19:1 January 2014
families were interested in participating. Of the 18 families receiving a letter, three were returned due to incorrect address. Two phone numbers were disconnected. Of those 13 families successfully contacted, six families planned to participate, and two others indicated they would be interested but distance and scheduling prohibited participation. In an attempt to accommodate family needs, child care with trained personnel, interpreter services, and dinner were offered to participants. Focus group questions were generated based on background literature review. The focus group questions included the following:
6. What items on your wish list are most important to you? During the focus group, a trained facilitator from a state educational agency focusing on autism and other low incidence disabilities was used. Responses were audiotaped and transcribed. As the results were limited by small family participation, results were described based on questions rather than by theme. This study was approved by the Cincinnati Children’s Hospital Medical Center Institutional Review Board. Results Although six families responded with interest in participating, only three families attended. The four parents who participated were Caucasian, two parent families, and were highly educated (all parents and spouses who did not attend the session had a college degree or more). Of the three participating families, there were two mothers and two fathers.
Among the three children represented, there was a wide range of hearing loss and severity of autism represented. Table 1 illustrates the characteristics of interest for each child whose family participated in the focus group. One child had unilateral hearing loss of unknown etiology and high functioning pervasive developmental disorder, not otherwise specified (PDD NOS). The other two children had profound bilateral sensorineural hearing loss: one due to congenital cytomegalovirus (CMV) with autism and the other due to a complex genetic syndrome with PDD NOS. All children were identified with their hearing loss and their diagnosis of an ASD at a tertiary care center. The children attended suburban public school programs. Two of the three children had been enrolled in Early Intervention Services within the state that provides home-based services with providers knowledgeable in deaf education. The child with unilateral hearing loss was identified after the age of Early Intervention Services eligibility. Family Responses About Suspicions Beyond Hearing Loss and Diagnostic Process Two families recognized concerns related to an autism spectrum at 3–4 years of age. These concerns became most obvious by children’s structured exposure to peers in preschool programs. The experience around the diagnostic process varied for the families. There were some consistent concerns raised by the families related to a lack of parental involvement in the evaluation process and all three families noted that their children were asked to do things they knew the child could not do. Families described concrete examples of strategies used to encourage participation in testing that were not effective, such as using nonmotivating reinforcement for participation. For instance, one child was given stickers as a reward for completing tasks during testing. The parent expressed that “They used stickers in his evaluation to get him to participate, but he didn’t care about stickers. They never asked for my input, like what would help reinforce him or keep him in the room, keep him happy.”
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
1. Tell us about your experiences as you received your child’s diagnosis of ASD. 2. How has the diagnosis of an autism spectrum paired with hearing loss impacted your family? 3. How has the dual diagnosis impacted communication decisions and strategies for your child? 4. What resources/supports have you found helpful? Where did you find out about these resources (professionals, website, other people, and so forth)? 5. In thinking about your child with hearing loss and an ASD, what is on your wish list?
Characteristics of Children Represented
Oral Visual schedules Social stories
Communication mode
Autism-specific strategies used
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
Note. ASD, autism spectrum disorder; CI, cochlear implant; CMV, cytomegalovirus; EI, early intervention; HL, hearing loss; HA, hearing aid; IEP, individualized education program; PDD NOS, pervasive developmental disorder, not otherwise specified; PECS, picture exchange communication system.
Visual schedules PECS Dynavox
Autism classroom Home-based EI Classroom for children with motor disabilities Special needs preschool Developmental disabilities classroom Signing
Social communication classroom Home-based EI School for the Deaf with manual approach in apraxia program
Mainstream setting with IEP supports Special needs preschool
Total communication: writing, signing, spoken language Visual schedules Use PECS
CHARGE syndrome Profound bilateral Birth due to syndrome 6 months Unilateral CI, no longer using PDD NOS 6 years Unknown
Child 3
Congenital CMV Profound bilateral 2 months 4 months Bilateral CI Autism 4 years 3 years
Child 2
Unknown Unilateral mild to moderate 3 years 4 years HA PDD NOS 6 years 4 years
Child 1
Etiology of HL Type and degree of HL Age of HL identification Age of amplification Type of amplification Autism spectrum label Age of identification of ASD Age family suspected developmental difference Current educational placement Early educational placements
Characteristic
Table 1 Characteristics of children
Deaf/Hard of Hearing Children With Autism Spectrum 43
44 Journal of Deaf Studies and Deaf Education 19:1 January 2014
Families recognized that the evaluation process must include things that go beyond a child’s capabilities, but they specifically commented on the challenges put before their children with the evaluation tools and process. They just tried to do stuff that you knew was a waste of time. They went way over his head.
Impact of Diagnosis on Family The families all reported some challenges with informing their extended family about their child’s diagnoses; however, extended family members showed an interest in learning more. They were interested in understanding how to communicate effectively or provide appropriate behavioral approaches once they gained an understanding of the child’s needs related to ASD. For the family of a child with the complex genetic syndrome, the diagnosis of the syndrome had the greater impact on extended family members than the label of an ASD. Some families experienced denial from extended family members in accepting a child’s needs. Extended family challenges with acceptance related to both hearing loss as well as behavioral differences from the ASD. One grandparent was concerned about pointing out a child’s difference by choosing a colored hearing aid earmold that could be easily visible to others. Families were also sometimes given advice by extended family members about behavioral challenges that did not take into consideration challenges related to ASD.
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
One family also noted a challenge with the communication needs of their child during the evaluation process. Although, there was a sign language interpreter available for the evaluation to provide access to the child’s communication and provide a mechanism for conveying information to the child, this was insufficient due to the child’s lack of experience in using an interpreter. “The evaluation included an interpreter. He had never used an interpreter. He had no concept she was talking to him by someone else.” Families also had varied emotional experiences related to receiving the diagnosis of an ASD. One family felt “validated” about their prior concerns and suspicions of the autism spectrum label and noted it was “freeing.” They were “ready” for testing to know for sure what they thought was going on. Despite these feelings of validation and recognition that a label would open more opportunities for their child, the experience was still emotional. The experiences related to the evaluation process varied among the families. One family felt the process was very open and honest, whereas another family experienced considerable problems. One family described an evaluation that was particularly concerning. This family felt they were not considered as part of the evaluation process; that inappropriate intellectual assessment tools were used (i.e., a tool not valid in children who are D/HH), and most importantly, that the evaluator was insufficiently trained and inexperienced in assessment for the dual diagnosis for children with hearing loss and an ASD. It is important to note that this family’s child was evaluated and diagnosed by a graduate student with a supervising professional observing through a twoway mirror. This parent commented that the process was semiprofessional and that she “felt like he was a guinea pig.”
Not only was this parent concerned with the diagnostic process but she also expressed discomfort in the diagnostic delivery. This parent felt anger about how the information was conveyed as she considered the person disclosing the diagnosis to have “limited qualifications” to convey the information, have given “blanket statements which were not true,” and unaware of her emotional cues of needing tissues causing her to “have to ask for the box of tissues which were behind the student.” This parent conveyed feelings of being alone and having significant anger around the diagnostic process. She recognized that they needed the child’s diagnosis on paper but wished she did not do the testing. She also recognized that the student conveying the diagnosis was likely quite nervous. In general, families who had an emotional response to the diagnostic process noted a need to have a diagnostic label to access additional services related to their child’s communication disorder and seemed to recognize that the assessment battery was insufficient to take into consideration their child’s needs related to his/her hearing loss.
Deaf/Hard of Hearing Children With Autism Spectrum 45
Finding Effective Resources All three families noted that schools were their primary resources for information and support. Teachers were specifically identified as critical professionals for assisting them in learning more about their child’s needs and in identifying interventions and resources for their child. It was particularly important for families to have strong communication between school and home to allow consistent followthrough for supporting their child’s development at home. “It all depends on your teacher. We used to get materials to bring home that we could work on with her on vacations and breaks. Now we aren’t getting any of that.” Additionally, the internet was noted as a consistent resource used among the families. All three families used the internet to learn more about strategies to help their children, to network with other families, and to connect with professionals via e-mail for providing guidance when problems arose. One family mentioned the positive impact of daily e-mail communication with their child’s teacher.
Other Identified Themes: Challenging Behaviors Families also identified behavioral struggles as potential challenges from time to time. The need for routine and the need to prepare their children for change was a common experience. One parent described the necessity of preparing for change related to their child’s anticipation of needing to change his hearing aid battery. “If the hearing aid battery goes dead, you have to work him through that. We have to have a plan. It’s little things like that.” Another family noted the broad need for preparing their child on what to expect from the day. You really have to prep him for what it is going to be ahead of time otherwise you don’t know what is going to happen, or when it is out of his expectations, you really have to deal with a meltdown. He is extremely routine driven. Another family struggled substantially with behavior when out in the community. “This is a child who is doing well in several subjects, but in the hallway, he’s attacking other children, he’s hitting or kicking, he lays around on the floor.” These challenges prompted the families to discuss their priority to focus on functional and social skills over academic skills. It’s very difficult to teach him what’s socially acceptable…At some point, I’m going to look at him and say, it doesn’t matter to me you know your multiplication table, I can’t take you anywhere, I can’t take you to the grocery store. Other Identified Themes: Child’s Communication Needs The impact of the dual diagnosis on communication was also evident. The use of visual schedules was also a common theme among the families. All families noted how important and helpful visual schedules are. Social stories and social skills groups were also mentioned as helpful, but families were limited by geographical considerations because most social skills groups were housed far from their region of the city and would require scheduling considerations and travel time in order to participate.
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
One family chose to share evaluation reports with extended family members. This seemed to help their understanding and processing of the child’s needs. They now ask more questions such as “did I deal with that okay, or how did I deal with that?” Another family noted that extended family members were in denial and commented that “he’s an only child and he’s been spoiled.” However, over time, extended family members have sought out more education and shown an interest in taking sign language classes. This parent reported that “having them on board and not in denial has been very helpful.” Positive comments about extended family members indicated that the impact of “having a child with autism and hearing loss has been on-going and constantly evolving. It has made them more compassionate and brought us closer to our relatives.” One family discussed how they decide who to disclose information about a child’s needs. They prioritized sharing information about their child’s needs with people who have closer interactions and a need to know how to respond to specific needs.
46 Journal of Deaf Studies and Deaf Education 19:1 January 2014
Other’s noted that it is difficult to follow through with communication strategies that are used at school (picture exchange communication system [PECS]) in the home setting. I don’t force it. I follow his lead. At home, if he weren’t communicating with me, I would force the issue (PECS). He really is a total communication child. He does best if you put things in writing, and you sign, and you speak. He can soak and absorb everything you throw at him.
Wish List Families were asked to convey what was on their wishlist. Two families indicated that they had found schools
Discussion With the paucity of information about family needs in the literature, focus group methodology can serve as a first-step to address the tremendous gap in care that children who are D/HH with an ASD experience. Despite a small number of parent participants, valuable information related to the diagnosis and care of children with a dual diagnosis of hearing loss and ASD were shared. Challenges in the diagnostic process included the impact of not having appropriate evaluation tools that can take into consideration a child’s hearing loss and communication needs as well as difficulties with comfort level of the professionals who are evaluating children with ASD. In our setting, many members of the team of providers are knowledgeable in ASD but do not have much exposure to or experience evaluating children who are D/HH. Many families indicated concerns about their child being asked to do things that they felt were beyond their capability. This is a common aspect of structured evaluations as many tools require children to miss a number of consecutive items in order to obtain a “ceiling” of capabilities. Whereas this information may be helpful in understanding a child’s strengths, it is important to convey this aspect of evaluation to families. Families
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
One family noted it was challenging for their child to initiate communication. “He has a hard time expressing his wants. He can’t express when he is hurt. I have to prompt him to use his signs and he is getting better with that.” Another family described the importance of amplification for their child. Their child gets very upset when he does not have his amplification. This child has unilateral hearing loss and can understand and communicate when not using amplification, but this comment suggests he relies on unilateral amplification for processing information. Issues related to interpreters were raised by two families. One family noted that using an interpreter during the diagnostic process posed challenges as their child had never used an interpreter. Over time, this child was able to rely on an interpreter to access communication. This parent described current concerns about losing interpreter services through the school program as he was doing well with oral communication as well. Another family had to advocate strongly for an interpreter for their child during school. This addition to the child’s programming has allowed expansion of the child’s communication strategies. The qualifications and expertise of professionals were important to families. Having at least a master’s in the content area (autism/special education or deaf education) was mentioned as important. It also was noted that it would be helpful if the clinical therapists outside of the educational system who focus on ASD were knowledgeable about needs related to deafness.
in other states with specialized instruction for dual diagnosis (deafness and autism, deafness and vision impairment) that they wished were readily accessible. Access to social skills groups near their home region was also noted as desirable by two families. Families were appreciative of extended school year (ESY) services, but in general found them insufficient to meet their children’s needs. “He qualifies for ESY, but it’s two days a week for just a couple of hours. I appreciate them doing it, but it is not enough. He needs intensive programming year-round.” It was also important to families to be able to observe their children’s outpatient clinical therapy. In some settings there are video monitors where families can observe therapy. This was appreciated by families who had experienced this technology and agreed by others that if they had access to this, they would find it very helpful and allow them to observe interventions to try at home with their child.
Deaf/Hard of Hearing Children With Autism Spectrum 47
settings, services may be provided with little opportunity to collaborate with individuals outside the content area of expertise. The lack of proximity and time to build teams of providers is a significant limitation for the interventions of these more complex children. Families indirectly mentioned a number of needs related to communication. Similar to the findings of Myck-Wayne et al., the children represented in our small group used communication systems relying on multimodal strategies. This was the case even with all participating families having pursued amplification and when clinically appropriate, cochlear implantation. Families described a range of strategies, including reliance on visual supports, social stories, Picture Exchange Communication System, written language, sign language, and augmentative communication devices. These strategies span well beyond the traditional communication choices of families with typically developing children who are D/HH. Providers within the field of deafness should recognize that the traditional communication tools used by children who are D/HH are insufficient for addressing the underlying communication disorder of children who are D/HH with an ASD. By limiting the communication intervention to traditional strategies and misunderstanding the need to develop foundational communication skills such as joint attention, turn taking, and choice making further delays in the development of an effective communication system for children with the dual diagnosis are likely to occur. Within educational settings, families preferred to identify goals and interventions which focus on behavior and day-to-day functioning over academic performance. Families found schools to be a strong resource for information. This may relate to the interdisciplinary nature of school intervention and the opportunities within their specific school districts for collaborative intervention. Furthermore, families found the internet to be very helpful in finding resources and in family-to-family networking. Connecting with families with similar experiences is limited by the geographic spread of children with the dual diagnosis as well as the lack of support groups specific to the dual diagnosis. Thus, the internet can serve as a source of connection to others with similar needs for some families.
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
were also interested in providing more guidance to evaluators related specifically to how their children may participate more effectively. With the realization that evaluation items may need to be presented in a specific manner, it is helpful to have the family’s expertise about their child’s interests to encourage continued participation. A struggle one family experienced during their child’s evaluation was the inclusion of a trainee. Many tertiary assessment locations also serve as training sites. This is helpful in exposing new professionals into the field to the complex presentations of children. However the inclusion of individuals newer to the field of assessment may contribute to families being less trustworthy of the conclusions from the assessment. In these more complex evaluations, it may be appropriate for supervisors to be more actively involved in the evaluation and the discussion of the results with the family. It is also noteworthy to mention that the established protocols for children with autism are not fully appropriate for children who are D/HH. However, even with the lack of validated protocols, it is reasonable to make a case for the use of standardized measures to evaluate children rather than relying solely on clinical impression. There are limitations in using protocols. For example, the cognitive testing battery commonly used for children with ASD may not be appropriate for children who are D/HH. Therefore, evaluators need to recognize when to shift from a protocol to choose a more appropriate measure of a similar construct. Families also noted a challenge in finding knowledgeable professionals in therapeutic settings where there is a paucity of providers with expertise in both content areas of hearing loss and autism. This challenge is similar to that of the families described by the work of Myck-Wayne et al. This study noted that families described fragmented care, challenges in responsiveness of professionals to collaborate, and insufficient knowledge within the deaf education programs to address needs related to an ASD. The families who participated in our study found broad-based special educational settings to be more effective for their children than deaf education programs or clinical therapeutic settings. This may be due to the educators and therapists in school settings having access to expertise across disability labels with close proximity. In clinical
48 Journal of Deaf Studies and Deaf Education 19:1 January 2014
the information from this study may be difficult to generalize to a broader scope of families. Furthermore, participating parents were particularly effective advocates for their children, were technologically knowledgeable, and had ready access to the internet. Studies of this type often include information from mothers rather than both caregivers. The inclusion of two fathers participating in the focus group provided a broader perspective on important issues. Despite these limitations, this forum was an important step in beginning to understand the needs of families of children who are D/HH with ASD. The information gleaned from families’ experiences is important to help guide knowledge, provision of care, and prioritizing research questions to answer in order to develop and implement evidence-based practice for this complex group of children. Funding Health Resources and Services Administration (R40MC21513); The Health Resources and Services Administration, US Department of Health and Human Services (HRSA-11–036); Leadership Education in Neurodevelopmental and Related Disabilities. Conflicts of Interest No conflicts of interest were reported. Acknowledgments We wish to thank the participating families for helping guide our understanding of the unique needs of children who are D/HH with an ASD. Their candor in sharing their personal experiences is invaluable, and we hope their knowledge will make us better people and professionals. We would also like to thank Donna Owens from the Ohio Center for Autism and Low Incidence for facilitating the focus group. References Achenbach, T. M., & Rescorla, L. A. (2001). The child behavior checklist. Manual for the ASEBA school-age forms and profiles. Burlington, VT: University of Vermont, Research Center
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
It is important to recognize that there were positive experiences that families had in their journey. They described that family members became more accepting of their child’s needs and their child’s needs have prompted extended family members to become more compassionate. Our families conveyed some similarities and differences in their experiences as compared with families of children who are D/HH. Within the literature regarding family needs and perspectives about early identification of hearing loss Young & Tattersall (2007) and McCracken, Young, & Tattersall (2008) noted that, in general, families felt positive about identifying a hearing loss at a young age; however, there were pressures related to achieving based on a time table. They also noted families were desiring to avoid abnormal development and had greater dissatisfaction when it was not clear how to best intervene for their child’s needs. These investigators also indicated family’s desire for family-to-family support as well as receiving familycentered practice. Families were willing to convey how a system might be improved. The overlapping experience of the families in our study were in their desire for family-to-family support and willingness to convey improvements in the current system of care. Safe, Joosten, & Molineux (2012) interviewed families of children with ASD. The families of children with ASD described similar challenges as compared with the families in our study. Safe’s families described changing expectations of normality, frustrations in finding the right supports, including within school settings, and a sense of social isolation. These families also noted difficulties in finding peers for their children. These families also indicated it can be difficult to manage behaviors and they experience restrictions in activities in which their families can participate. Many families noted low levels of social supports. This study was limited by low participation despite offering skilled daycare and interpreter services for children. We had hoped these strategies would assist with the children’s care needs and allow families to more readily participate. However, as the parents who did participate indicated, it is hard for their children to have a different schedule, particularly without knowing specifically how to prepare their child for a new experience. With a small group of highly educated parents,
Deaf/Hard of Hearing Children With Autism Spectrum 49 Myck-Wayne, J., Robinson, S., & Henson, E. (2011). Serving and supporting young children with a dual diagnosis of hearing loss and autism: the stories of four families. American Annals of the Deaf, 156, 379–390. Roid, G. (2003). Stanford-Binet Intelligence scales (5th Ed.). Torrance, CA: Houghton Mifflin Harcourt. Roper, L., Arnold, P., & Monteiro, B. (2003). Co-occurrence of autism and deafness: diagnostic considerations. Autism, 7, 245–253. Rutter, M., Le Couteur, A., & Lord, C. (1994). Autism diagnostic interview-revised. Rottance, CA: Western Psychological Services. Rutter, M., Bailey, A., & Lord, C. (2003). Social communication questionnaire. Rottance, CA: Western Psychological Services. Schopler, E., Van Bourgondien, M. E., Wellman, G. J., & Love, S. R. (2010). Childhood Autism Rating scale (2nd Ed.). Torrance, CA: Western Psychological Services. Safe, A., Joosten, A., & Molineux, M. (2012). The experiences of mothers of children with autism: managing multiple roles. Journal of Intellectual & Developmental Disability, 37, 294–302. Semel, E., Wiig, E., & Secord, W. (2003). Clinical evaluation of language fundamentals. (4th Ed.). San Antonio, TX: Psychological Corporation. Szymanski, C. A., Brice, P. J., Lam, K. H., & Hotto, S. A. (2012). Deaf children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42, 2027–2037. doi:10.1007/s10803-012-1452-9 Worley, J. A., Matson, J. L., & Kozlowski, A. M. (2011). The effects of hearing impairment on symptoms of autism in toddlers. Developmental Neurorehabilitation, 14, 171–176. do i:10.3109/17518423.2011.564600 Young, A., & Tattersall, H. (2007). Universal newborn hearing screening and early identification of deafness: Parents’ responses to knowing early and their expectations of child communication development. Journal of Deaf Studies and Deaf Education, 12, 209–220. Zimmerman, I. L., Steiner, V. G., & Pond, R. E. (2002). Preschool language scale (4th Ed.). San Antonio, TX: Harcourt Assessment Company. Zimmerman, I. L., Steiner, V. G., & Pond, R. E. (2011). Preschool Language scale-V. San Antonio, TX: Pearson.
Downloaded from http://jdsde.oxfordjournals.org/ at Oakland University on June 9, 2015
for Children, Youth, and Families, Achenbach System of Empirically Based Assessment. Beals, K. (2004). Early intervention in deafness and autism: one family’s experiences, reflections, recommendations. Infants and Young Children, 17, 284–290. Gal, E., Dyck, M. J., & Passmore, A. (2010). Relationships between stereotyped movements and sensory processing disorders in children with and without developmental or sensory disorders. American Journal of Occupational Therapy, 64, 453–461. Garcia, R., & Turk, J. (2007). The applicability of WebsterStratton Parenting Programmes to deaf children with emotional and behavioural problems, and autism, and their families: annotation and case report of a child with autistic spectrum disorder. Clinical Child Psychology and Psychiatry, 12, 125–136. Gilliam, J. E. (1995). Gilliam autism rating scale (2nd Ed.). Torrance, CA: Western Psychological Services. Gioia, G. A., Isquith, P. K., Guy, S. C., & Kenworthy, L. (2005). Brief behavior rating inventory of executive function (BRIEF). Lytham St Annes, England: PAR. Jure, R., Rapin, I., & Tuchman, R. F. (1991). Hearing-impaired autistic children. Developmental Medicine & Child Neurology, 33, 1062–1072. Lord, C., Rutter, M., DiLavore, P. C., & Risi, S. (1999). Autism diagnostic observation schedule-WPS (ADOS-WPS). Los Angeles, CA: Western Psychological Services. Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Jr., Leventhal, B. L., DiLavore, P. C., & Rutter, M. (2000). The autism diagnostic observation schedule-generic: a standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders, 30, 205–223. Malandraki, G., & Okalidou, A. (2007). The application of PECS in a deaf child with autism: a case study. Focus on Autism and Other Developmental Disabilities, 22, 23. McCracken, W., Young, A., & Tattersall, H. (2008). Universal newborn hearing screening: parental reflections on very early audiological management. Ear and Hearing, 29, 54–64. Mullen, E. (1995). Mullens scale of early learning. Upper Saddle River, NJ: Pearson.
