Supporting Families of Children Who Are Deaf or Hard of Hearing with an Autism Spectrum Disorder
ABSTRACT
Families of children who are deaf or hard of hearing (Deaf/HH) with an autism spectrum disorder (ASD) experience many frustrations and challenges in the identification of ASD, accessing supports and services to address all of their child’s needs, and identifying networking and support opportunities with other families with children with similar needs. Professionals working with families are in a unique position to help navigate the often disconnected systems of services for children who are Deaf/HH and services for children with ASD. This article poses some possible strategies that professionals can implement in practice when working with children who are Deaf/HH with an ASD. KEYWORDS: Family support, autism spectrum disorder, deaf/hard of hearing
Learning Outcomes: As a result of this activity, the reader will be able to (1) identify strategies to discuss concerns about and autism spectrum disorder (ASD) in children who are deaf or hard of hearing (Deaf/HH) with families; (2) describe how professionals across the fields of Deaf/HH and ASD can collaborate to provide improved services for children who are Deaf/HH with an ASD; (3) assist families in obtaining family-to-family supports based on their unique experiences having a child who is Deaf/HH with and ASD.
With success of universal newborn hear-
ing screening (UNHS) on earlier identification of children who are deaf or hard of hearing
1
Division of Developmental and Behavioral Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio. Address for correspondence: Susan Wiley, M.D., Division of Developmental and Behavioral Pediatrics, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave. ML 4002, Cincinnati, OH 45229 (e-mail: [email protected]). Screening, Diagnosing and Implementing Interventions for Children Who Are Deaf or Hard of Hearing
260
(Deaf/HH),1 it is critically important to recognize children who are developing differently in various developmental domains. This
with Autism Spectrum Disorder; Guest Editors, Christine Yoshinaga-Itano, Ph.D. and Amy Thrasher, M.A., CCC-SLP. Semin Speech Lang 2014;35:260–265. Copyright # 2014 by Thieme Medical Publishers, Inc., 333 Seventh Avenue, New York, NY 10001, USA. Tel: +1(212) 5844662. DOI: http://dx.doi.org/10.1055/s-0034-1389098. ISSN 0734-0478.
This document was downloaded for personal use only. Unauthorized distribution is strictly prohibited.
Susan Wiley, M.D.1 and Heather Innis, B.A.1
SUPPORTING FAMILIES/WIILEY, INNIS
PROFESSIONALS’ RECOGNITION OF COMMUNICATION CONCERNS When a child is identified with hearing loss, the professional must closely monitor foundational communication skills, specifically joint attention and play schemes. A lack of progress should never be assumed to be only due to a mismatch of chosen communication modality or insufficiencies in the language stimulation environment. Although the focus of this issue is not specifically for the broader group of children with ASD, every child with a suspicion of ASD, even those who have passed UNHS, should have a comprehensive audiologic evaluation, including sedated auditory brainstem response (ABR) if a child cannot reliably participate in booth testing.
FAMILY RECOGNITION OF COMMUNICATION CONCERNS Families have described varying experiences when they have questioned their child’s developmental progress or when others have raised concerns about their child’s communication or behavior. Myck-Wayne et al noted that families can have a desire to explain their child’s behaviors and communication in the framework of being caused by hearing loss.2 However, families also made specific comments including: “I knew in the back of my mind that something else was wrong” and “I was calling it a delay because I couldn’t say the word autism.”2 This would suggest that families recognize concern perhaps even earlier than professionals realize.
Some families experienced further delay in the diagnostic process when their pediatrician did not pursue a referral for an ASD evaluation. One family was able to recognize their child’s differences in attention, behaviors, and communication when seeing other children in a preschool program serving Deaf/HH.2
DISCUSSING ATYPICAL COMMUNICATION PATTERNS WITH FAMILIES Providers who have a strong long-term relationship with families of children who are Deaf/HH are in an excellent position to gently discuss the child’s strengths and needs and possible concerns in a supportive and familycentered manner. Exploring families’ concerns and fears can guide this discussion. Presenting concerns with a strength-based approach (include strengths and needs) while providing the context of typical development for children who are Deaf/HH can frame a family’s recognition of their child’s differences and empower them to seek support for their child more broadly. This balance of describing the positive aspects of the child alongside the noted areas of concern allows families to be prepared to receive more information about the next diagnostic steps and frames their journey into working with an expanded group of professionals. Although it may be helpful to use structured tools for autism screening, it is helpful to frankly discuss which aspects of items on the tool likely relate to the child’s hearing loss and those that are not explained by hearing loss alone. This approach can provide information for deeper discussions and expand family understanding of the concerns raised. It is always important to have information ready related to provide next steps and resources for this sensitive discussion. As Beals indicated, when feeling pulled between professionals related to communication modality (oral versus sign language), discussing a child’s communication challenges distinctly separate from the communication modality approach is appropriate.4 With this approach, providers can more effectively guide the recognition of a child’s different developmental pattern as well as allow a shift in focus from hearing and communication modality
This document was downloaded for personal use only. Unauthorized distribution is strictly prohibited.
recognition can guide families in recognizing their child’s needs and facilitate access to appropriate broader supports. This is particularly true for children who are Deaf/HH with an additional communication disorder, specifically autism spectrum disorder (ASD). Although sometimes the diagnosis of hearing loss occurs after a diagnosis of ASD, it is likely more common to receive a diagnosis of hearing loss first and then a diagnosis of ASD at some time later.2,3 The literature houses a small number of studies representing families who have described their experiences with recognizing their child’s needs, receiving a diagnosis, and trying to access supports that address all of their child’s unique needs.2,4,5
261
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discussions to communication functions (such as joint attention, turn-taking, choice-making, imitation, gestural development, and functional and symbolic play). Myck-Wayne and colleagues described family experiences of shifting from auditory verbal therapy to applied behavioral analysis, which prompted improvements in their child’s focus. This approach subsequently allowed the implementation of effective sign language exposure.2 Professionals should partner with families to understand what the most prominent priorities for the focus of intervention are at that moment. This reframing of needs can be an important step that will link back to progress in eventual expanded communication skills.
INITIATING THE CONVERSATION It can be challenging to initiate the conversation between families and providers when children do not make expected strides. Providing a guide on the specific next steps and resources ready to share during this discussion will allow families to have the sense of a plan, despite the impact of this newly identified concern. Families process information in a variety of ways. Allowing families time to process information and plan for next steps on their timeline will empower them to pace their grieving of this new concern. When professionals are willing to talk to extended family members if requested, the family’s support network can be expanded. The diagnostic process has its own challenges. It can be very challenging for professionals to tease apart the factors of a child’s communication patterns that are related to deafness and those that may be flags for an ASD. Although it can be helpful to receive a diagnosis of ASD, it is not a necessity in addressing the child’s specific needs. Sometimes a diagnostic evaluation may prompt expanded services and interventions; however, meeting a child and family’s needs is the ultimate goal and should not be delayed until a diagnosis can be confirmed.
FAMILY-TO-FAMILY SUPPORT/ RESOURCES There is a general theme within the existing literature about the feelings of isolation and lack
2014
of support by families of children who are Deaf/ HH with ASD.2,4,5 Although there is recognition within the Early Intervention Services (Part C) and the Early Hearing Detection and Intervention system that family-to-family support is essential, focus on the needs of families of children who are Deaf/HH Plus has been limited. “The term (deaf plus) is a reference to the child’s hearing status combined with additional conditions. The conditions impacting these children are many and varied, including combined vision and hearing loss, children who have hearing loss and are on the autism spectrum, and children with cognitive impairments.”6 The Joint Committee on Infant Hearing published a supplement to their position statement on early intervention to guide foundations of effective programming.7 This supplement included information on serving children who are Deaf Plus, which can provide some guidance for meeting the needs of children with the dual diagnosis. Additionally, Hands & Voices, a national parent organization supporting families of children who are Deaf/ HH, houses Deaf Plus information on their Web site.6 Even with this resource, providing effective family-to-family support is a particularly challenging aspect of family need, in part due to the relatively low rate of children with the dual diagnosis. If we consider that 2/1000 children have hearing loss8 and 4% of these children having an ASD,9 these estimations suggest slightly less than 1/10,000 children in the general population carries the dual diagnosis. Many of these children experience being the only one who is Deaf/HH within a community or school district. This is particularly evident in small schools and communities. The experience of isolation is compounded further for families of children with the dual diagnosis. Families participating in a focus group on issues related to the dual diagnosis noted the Internet as a way to combat this barrier and found this mechanism helpful in connecting to other families and identifying resources.4 Even with the resource of the Internet, family-to-family support happens marginally online. In the experience of one of the authors of this article (H.I.), online groups are often inactive, likely due to the demands and weight of parenting a child who is Deaf/HH with
This document was downloaded for personal use only. Unauthorized distribution is strictly prohibited.
262
an ASD. (There is a deaf ASD Yahoo! group with over 100 participants, but posts are rare.) Knowing the available resources and trying to identify potential families to build a network of support can help overcome the feelings of isolation felt by families of children who are Deaf/HH with ASD (see Resources at end of article).
INTEGRATION OF SERVICES/ NAVIGATION OF DISCONNECTED SYSTEMS Another common experience for families of children who are Deaf/HH with ASD is in the lack of integration of services across deaf education and autism expertise. Beals suggested the need for improvements in service areas within both fields: those professionals with expertise in the education and intervention of Deaf/HH as well as professionals with expertise working with children with ASD.4 MyckWayne et al noted that families often feel shuffled between providers from the two professional streams (Deaf/HH and ASD).2 Some families experienced Deaf/HH programs not being willing to adapt to ASD intervention strategies. In the experience of one of the authors of this article (S.W.), this same barrier has been noted among programs focusing on ASD. Programs lack the preparation and interest in adapting programming for the needs of students with the dual diagnosis.2 Families also reported the need for more intensive behavioral supports as well as a lack of sign language environment within ASD programs. This suggests communication needs were not fully addressed within these environments. Beals also noted a need for better focus and concrete guidance from professionals knowledgeable in ASD.4 These challenges put families between two systems, neither of which can fully address the child’s and family’s needs related to both hearing loss and ASD. If a child is being served in a program focusing on deaf education, behavioral supports and adaptations for communication are needed. If a child is within the public school system and served by programs for children with ASD, a teacher of the deaf should be meaningfully included in the program. Another potential strategy to improved collaboration is to pursue cotreatment oppor-
tunities (such as with speech-language pathology and occupational therapy). Although not a common experience, bringing school personnel, cochlear implant mapping audiologists, child life specialists, and behavioral specialists together during a behavioral therapeutic intervention by experts in ASD was an extremely effective mechanism for allowing the author’s (H.I.) son to consistently wear his cochlear implants following a reactivation from cochlear implant revision surgery. Families may request professionals to attend key appointments or meetings. Although there may be some hesitation by professionals to commit to this investment of time, the downstream benefits can be striking. This common family experience of being split between programs pushes professionals to expand their knowledge and skill set beyond their typical comfort zone. By working in a more integrated fashion across the two fields, crosslearning can occur in both fields. This expands the community resources and directly benefits children with the dual diagnosis. When professionals can recognize their own limitations and seek information and guidance from other fields, the best available services can be attained by children who are Deaf/HH with an ASD. Within the context of discussions with families, the top current priorities may drive the appropriate service supports. If professionals seek to work collaboratively, one field may provide “consultative” supports to the primary service area. Operationalizing this concept poses challenges. However, without addressing these needs and expanding professional development opportunities across the fields, progress for children who are Deaf/HH with an ASD will not be realized and disparate care will continue.
COMMUNICATION SUPPORTS Families of children who are Deaf/HH with ASD feel the pressure and pull related to the communication modality divide even more so than families with a typically developing child who is Deaf/HH.4 Families have described a desire to have the child’s primary mode of communication be taught and practiced across environments and people.2 A broad-based approach to communication has been noted by many families, including reliance on speech,
263
This document was downloaded for personal use only. Unauthorized distribution is strictly prohibited.
SUPPORTING FAMILIES/WIILEY, INNIS
SEMINARS IN SPEECH AND LANGUAGE/VOLUME 35, NUMBER 4
sign language, Picture Communication Exchange System, augmentative communication, and written language.5 Having a plan for enhancing functional communication and building upon communication foundations toward higher levels is often a turning point. With this approach, children who are Deaf/HH with ASD can begin to expand their recognition of the power of communication. This foundation can then support language learning across communication modalities, thus bridging back to a broader language systems (speech or signing). These strategies can help expand the effectiveness of communication with others. Professionals should be ready to suggest and implement broader communication strategies, taking into account the communication needs due to ASD and the communication needs related to the child’s hearing loss. Ensuring all communication partners and settings support the communication needs of the child and responding to the child’s communication attempts can allow learning and expansion of communication skills. Team members should reach out to those providers with specific expertise in communication systems and discuss adaptations and adjustments based on the child’s specific ASD and hearing loss related needs. Identifying a child’s motivators is also helpful in planning activities to encourage expanded communication attempts. Social skills development and integration into a peer group are supports children will likely need to develop broader social communication. Building social skills and using peer mentoring can expand the capacity for community integration for a child who is Deaf/HH with ASD. It is important to take into consideration a child’s communication level and mode; it is also helpful to align the right network of peers. Exposure to peers with hearing loss can be important, particularly if a child is using primarily sign language for communication. The benefits of participation in a language-rich environment with direct communication cannot be understated. The authors also recognize the importance of using every possible tool available to facilitate communication. Often the sensory needs of children with ASD may not allow consistent use of amplification/technology. This may take
2014
an auditory/speech approach out of the equation during those times. It is also important to not solely rely on expressive language to determine the effectiveness of a communication mode. In one author’s personal experience (H.I.), her son did not produce sign language expressively; however, he comprehended sign language well beyond his expressive capabilities. By persisting with exposure to sign language, he now has a foundation for expressive language through sign as well as through speech. Furthermore, he also exhibited features of apraxia of speech, which responded to treatment interventions specifically targeted toward apraxia. This allowed his speech to be understood by others. His communication journey has spanned truly all modalities (signing, speech, pictures, PROMPT therapy, written communication). His therapists were willing to adapt interventions (using PROMPT therapy, partnering with an American Sign Language interpreter, including cotreatment sessions with occupational therapy).
BEHAVIORAL SUPPORTS Often, children who are Deaf/HH with ASD require more intensive behavioral supports. Although behaviors are often related to challenges in communication, there can be other reasons. One family in the study by MyckWayne et al described their experience working with applied behavioral analysis (ABA) services that targeted their child’s focus.2 This was an essential step to more effectively expand communication development. It can be assumed based on the parent frustrations described previously that those providers with expertise in behavioral strategies for children with ASD would benefit from collaboration of those who understand the needs of children who are Deaf/HH to ensure appropriate adaptations and approaches needed based on the child’s hearing loss.
FINANCIAL BURDEN Although there is information related to some of the financial burdens felt by families of children with ASD, this has not been queried within families of children who are Deaf/HH
This document was downloaded for personal use only. Unauthorized distribution is strictly prohibited.
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SUPPORTING FAMILIES/WIILEY, INNIS
SUMMARY Families of children who are Deaf/HH with an ASD experience many frustrations and challenges in the identification of ASD, accessing supports and services to address all of their child’s needs, and identifying networking and support opportunities with other families with children with similar needs. Professionals are in a unique position to partner with families in navigating the often disconnected systems of services for children who are Deaf/HH and services for children with ASD. RESOURCES 1. Gallaudet Odyssey special editions re: deafness/autism (http://www.gallaudet.edu/ Documents/Clerc/Odyssey-2008-v9i1.pdf and http://www.gallaudet.edu/clerc_center/ researching_autism_and_deafness.html. Accessed August 19, 2014)
2. Colorado Hands and Voices–Deaf Plus (http://www.cohandsandvoices.org/plus/ index.html) 3. Autism Society (http://www.autism-society. org/)
REFERENCES 1. Pimperton H, Kennedy CR. The impact of early identification of permanent childhood hearing impairment on speech and language outcomes. Arch Dis Child 2012;97(7):648–653 2. Myck-Wayne J, Robinson S, Henson E. Serving and supporting young children with a dual diagnosis of hearing loss and autism: the stories of four families. Am Ann Deaf 2011;156(4):379–390 3. Roper L, Arnold P, Monteiro B. Co-occurrence of autism and deafness: diagnostic considerations. Autism 2003;7(3):245–253 4. Beals K. Early intervention in deafness and autism: one family’s experiences, reflections, recommendations. Infants and Young Children 2004;17(4): 284–290 5. Wiley S, Gustafson S, Rozniak J. Needs of parents of children who are deaf/hard of hearing with autism spectrum disorder. J Deaf Stud Deaf Educ 2014; 19(1):40–49 6. Hands and VoicesCommunication considerations: Deaf Plus. Available at: http://www.handsandvoices. org/comcon/articles/deafplus.htm. Accessed April 27, 2014 7. Muse C, Harrison J, Yoshinaga-Itano C, et al; Joint Committee on Infant Hearing of the American Academy of Pediatrics. Supplement to the JCIH 2007 position statement: principles and guidelines for early intervention after confirmation that a child is deaf or hard of hearing. Pediatrics 2013;131(4): e1324–e1349 8. Centers for Disease Control and Prevention (CDC). Infants tested for hearing loss—United States, 1999–2001. MMWR Morb Mortal Wkly Rep 2003;52(41):981–984 9. Szymanski CA, Brice PJ, Lam KH, Hotto SA. Deaf children with autism spectrum disorders. J Autism Dev Disord 2012;42(10):2027–2037
This document was downloaded for personal use only. Unauthorized distribution is strictly prohibited.
with an ASD. There are varying resources and barriers across the United States related to coverage of amplification and therapies. Some children benefit from a cotreatment model; however, this can sometimes be a challenge to adequately fund based on copayments and limited number of insurance-covered visits. Behavioral interventions often fall under mental health coverage, which may have different rules and requirements as compared with “medical” therapies. Although this article has not expanded into all of the various costs associated with hearing loss and ASD, it is safe to assume many families have substantial costs related to their child’s needs. Professionals should be aware of the potential financial impact on families.
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Copyright of Seminars in Speech & Language is the property of Thieme Medical Publishing Inc. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
ABSTRACT
Families of children who are deaf or hard of hearing (Deaf/HH) with an autism spectrum disorder (ASD) experience many frustrations and challenges in the identification of ASD, accessing supports and services to address all of their child’s needs, and identifying networking and support opportunities with other families with children with similar needs. Professionals working with families are in a unique position to help navigate the often disconnected systems of services for children who are Deaf/HH and services for children with ASD. This article poses some possible strategies that professionals can implement in practice when working with children who are Deaf/HH with an ASD. KEYWORDS: Family support, autism spectrum disorder, deaf/hard of hearing
Learning Outcomes: As a result of this activity, the reader will be able to (1) identify strategies to discuss concerns about and autism spectrum disorder (ASD) in children who are deaf or hard of hearing (Deaf/HH) with families; (2) describe how professionals across the fields of Deaf/HH and ASD can collaborate to provide improved services for children who are Deaf/HH with an ASD; (3) assist families in obtaining family-to-family supports based on their unique experiences having a child who is Deaf/HH with and ASD.
With success of universal newborn hear-
ing screening (UNHS) on earlier identification of children who are deaf or hard of hearing
1
Division of Developmental and Behavioral Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio. Address for correspondence: Susan Wiley, M.D., Division of Developmental and Behavioral Pediatrics, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave. ML 4002, Cincinnati, OH 45229 (e-mail: [email protected]). Screening, Diagnosing and Implementing Interventions for Children Who Are Deaf or Hard of Hearing
260
(Deaf/HH),1 it is critically important to recognize children who are developing differently in various developmental domains. This
with Autism Spectrum Disorder; Guest Editors, Christine Yoshinaga-Itano, Ph.D. and Amy Thrasher, M.A., CCC-SLP. Semin Speech Lang 2014;35:260–265. Copyright # 2014 by Thieme Medical Publishers, Inc., 333 Seventh Avenue, New York, NY 10001, USA. Tel: +1(212) 5844662. DOI: http://dx.doi.org/10.1055/s-0034-1389098. ISSN 0734-0478.
This document was downloaded for personal use only. Unauthorized distribution is strictly prohibited.
Susan Wiley, M.D.1 and Heather Innis, B.A.1
SUPPORTING FAMILIES/WIILEY, INNIS
PROFESSIONALS’ RECOGNITION OF COMMUNICATION CONCERNS When a child is identified with hearing loss, the professional must closely monitor foundational communication skills, specifically joint attention and play schemes. A lack of progress should never be assumed to be only due to a mismatch of chosen communication modality or insufficiencies in the language stimulation environment. Although the focus of this issue is not specifically for the broader group of children with ASD, every child with a suspicion of ASD, even those who have passed UNHS, should have a comprehensive audiologic evaluation, including sedated auditory brainstem response (ABR) if a child cannot reliably participate in booth testing.
FAMILY RECOGNITION OF COMMUNICATION CONCERNS Families have described varying experiences when they have questioned their child’s developmental progress or when others have raised concerns about their child’s communication or behavior. Myck-Wayne et al noted that families can have a desire to explain their child’s behaviors and communication in the framework of being caused by hearing loss.2 However, families also made specific comments including: “I knew in the back of my mind that something else was wrong” and “I was calling it a delay because I couldn’t say the word autism.”2 This would suggest that families recognize concern perhaps even earlier than professionals realize.
Some families experienced further delay in the diagnostic process when their pediatrician did not pursue a referral for an ASD evaluation. One family was able to recognize their child’s differences in attention, behaviors, and communication when seeing other children in a preschool program serving Deaf/HH.2
DISCUSSING ATYPICAL COMMUNICATION PATTERNS WITH FAMILIES Providers who have a strong long-term relationship with families of children who are Deaf/HH are in an excellent position to gently discuss the child’s strengths and needs and possible concerns in a supportive and familycentered manner. Exploring families’ concerns and fears can guide this discussion. Presenting concerns with a strength-based approach (include strengths and needs) while providing the context of typical development for children who are Deaf/HH can frame a family’s recognition of their child’s differences and empower them to seek support for their child more broadly. This balance of describing the positive aspects of the child alongside the noted areas of concern allows families to be prepared to receive more information about the next diagnostic steps and frames their journey into working with an expanded group of professionals. Although it may be helpful to use structured tools for autism screening, it is helpful to frankly discuss which aspects of items on the tool likely relate to the child’s hearing loss and those that are not explained by hearing loss alone. This approach can provide information for deeper discussions and expand family understanding of the concerns raised. It is always important to have information ready related to provide next steps and resources for this sensitive discussion. As Beals indicated, when feeling pulled between professionals related to communication modality (oral versus sign language), discussing a child’s communication challenges distinctly separate from the communication modality approach is appropriate.4 With this approach, providers can more effectively guide the recognition of a child’s different developmental pattern as well as allow a shift in focus from hearing and communication modality
This document was downloaded for personal use only. Unauthorized distribution is strictly prohibited.
recognition can guide families in recognizing their child’s needs and facilitate access to appropriate broader supports. This is particularly true for children who are Deaf/HH with an additional communication disorder, specifically autism spectrum disorder (ASD). Although sometimes the diagnosis of hearing loss occurs after a diagnosis of ASD, it is likely more common to receive a diagnosis of hearing loss first and then a diagnosis of ASD at some time later.2,3 The literature houses a small number of studies representing families who have described their experiences with recognizing their child’s needs, receiving a diagnosis, and trying to access supports that address all of their child’s unique needs.2,4,5
261
SEMINARS IN SPEECH AND LANGUAGE/VOLUME 35, NUMBER 4
discussions to communication functions (such as joint attention, turn-taking, choice-making, imitation, gestural development, and functional and symbolic play). Myck-Wayne and colleagues described family experiences of shifting from auditory verbal therapy to applied behavioral analysis, which prompted improvements in their child’s focus. This approach subsequently allowed the implementation of effective sign language exposure.2 Professionals should partner with families to understand what the most prominent priorities for the focus of intervention are at that moment. This reframing of needs can be an important step that will link back to progress in eventual expanded communication skills.
INITIATING THE CONVERSATION It can be challenging to initiate the conversation between families and providers when children do not make expected strides. Providing a guide on the specific next steps and resources ready to share during this discussion will allow families to have the sense of a plan, despite the impact of this newly identified concern. Families process information in a variety of ways. Allowing families time to process information and plan for next steps on their timeline will empower them to pace their grieving of this new concern. When professionals are willing to talk to extended family members if requested, the family’s support network can be expanded. The diagnostic process has its own challenges. It can be very challenging for professionals to tease apart the factors of a child’s communication patterns that are related to deafness and those that may be flags for an ASD. Although it can be helpful to receive a diagnosis of ASD, it is not a necessity in addressing the child’s specific needs. Sometimes a diagnostic evaluation may prompt expanded services and interventions; however, meeting a child and family’s needs is the ultimate goal and should not be delayed until a diagnosis can be confirmed.
FAMILY-TO-FAMILY SUPPORT/ RESOURCES There is a general theme within the existing literature about the feelings of isolation and lack
2014
of support by families of children who are Deaf/ HH with ASD.2,4,5 Although there is recognition within the Early Intervention Services (Part C) and the Early Hearing Detection and Intervention system that family-to-family support is essential, focus on the needs of families of children who are Deaf/HH Plus has been limited. “The term (deaf plus) is a reference to the child’s hearing status combined with additional conditions. The conditions impacting these children are many and varied, including combined vision and hearing loss, children who have hearing loss and are on the autism spectrum, and children with cognitive impairments.”6 The Joint Committee on Infant Hearing published a supplement to their position statement on early intervention to guide foundations of effective programming.7 This supplement included information on serving children who are Deaf Plus, which can provide some guidance for meeting the needs of children with the dual diagnosis. Additionally, Hands & Voices, a national parent organization supporting families of children who are Deaf/ HH, houses Deaf Plus information on their Web site.6 Even with this resource, providing effective family-to-family support is a particularly challenging aspect of family need, in part due to the relatively low rate of children with the dual diagnosis. If we consider that 2/1000 children have hearing loss8 and 4% of these children having an ASD,9 these estimations suggest slightly less than 1/10,000 children in the general population carries the dual diagnosis. Many of these children experience being the only one who is Deaf/HH within a community or school district. This is particularly evident in small schools and communities. The experience of isolation is compounded further for families of children with the dual diagnosis. Families participating in a focus group on issues related to the dual diagnosis noted the Internet as a way to combat this barrier and found this mechanism helpful in connecting to other families and identifying resources.4 Even with the resource of the Internet, family-to-family support happens marginally online. In the experience of one of the authors of this article (H.I.), online groups are often inactive, likely due to the demands and weight of parenting a child who is Deaf/HH with
This document was downloaded for personal use only. Unauthorized distribution is strictly prohibited.
262
an ASD. (There is a deaf ASD Yahoo! group with over 100 participants, but posts are rare.) Knowing the available resources and trying to identify potential families to build a network of support can help overcome the feelings of isolation felt by families of children who are Deaf/HH with ASD (see Resources at end of article).
INTEGRATION OF SERVICES/ NAVIGATION OF DISCONNECTED SYSTEMS Another common experience for families of children who are Deaf/HH with ASD is in the lack of integration of services across deaf education and autism expertise. Beals suggested the need for improvements in service areas within both fields: those professionals with expertise in the education and intervention of Deaf/HH as well as professionals with expertise working with children with ASD.4 MyckWayne et al noted that families often feel shuffled between providers from the two professional streams (Deaf/HH and ASD).2 Some families experienced Deaf/HH programs not being willing to adapt to ASD intervention strategies. In the experience of one of the authors of this article (S.W.), this same barrier has been noted among programs focusing on ASD. Programs lack the preparation and interest in adapting programming for the needs of students with the dual diagnosis.2 Families also reported the need for more intensive behavioral supports as well as a lack of sign language environment within ASD programs. This suggests communication needs were not fully addressed within these environments. Beals also noted a need for better focus and concrete guidance from professionals knowledgeable in ASD.4 These challenges put families between two systems, neither of which can fully address the child’s and family’s needs related to both hearing loss and ASD. If a child is being served in a program focusing on deaf education, behavioral supports and adaptations for communication are needed. If a child is within the public school system and served by programs for children with ASD, a teacher of the deaf should be meaningfully included in the program. Another potential strategy to improved collaboration is to pursue cotreatment oppor-
tunities (such as with speech-language pathology and occupational therapy). Although not a common experience, bringing school personnel, cochlear implant mapping audiologists, child life specialists, and behavioral specialists together during a behavioral therapeutic intervention by experts in ASD was an extremely effective mechanism for allowing the author’s (H.I.) son to consistently wear his cochlear implants following a reactivation from cochlear implant revision surgery. Families may request professionals to attend key appointments or meetings. Although there may be some hesitation by professionals to commit to this investment of time, the downstream benefits can be striking. This common family experience of being split between programs pushes professionals to expand their knowledge and skill set beyond their typical comfort zone. By working in a more integrated fashion across the two fields, crosslearning can occur in both fields. This expands the community resources and directly benefits children with the dual diagnosis. When professionals can recognize their own limitations and seek information and guidance from other fields, the best available services can be attained by children who are Deaf/HH with an ASD. Within the context of discussions with families, the top current priorities may drive the appropriate service supports. If professionals seek to work collaboratively, one field may provide “consultative” supports to the primary service area. Operationalizing this concept poses challenges. However, without addressing these needs and expanding professional development opportunities across the fields, progress for children who are Deaf/HH with an ASD will not be realized and disparate care will continue.
COMMUNICATION SUPPORTS Families of children who are Deaf/HH with ASD feel the pressure and pull related to the communication modality divide even more so than families with a typically developing child who is Deaf/HH.4 Families have described a desire to have the child’s primary mode of communication be taught and practiced across environments and people.2 A broad-based approach to communication has been noted by many families, including reliance on speech,
263
This document was downloaded for personal use only. Unauthorized distribution is strictly prohibited.
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SEMINARS IN SPEECH AND LANGUAGE/VOLUME 35, NUMBER 4
sign language, Picture Communication Exchange System, augmentative communication, and written language.5 Having a plan for enhancing functional communication and building upon communication foundations toward higher levels is often a turning point. With this approach, children who are Deaf/HH with ASD can begin to expand their recognition of the power of communication. This foundation can then support language learning across communication modalities, thus bridging back to a broader language systems (speech or signing). These strategies can help expand the effectiveness of communication with others. Professionals should be ready to suggest and implement broader communication strategies, taking into account the communication needs due to ASD and the communication needs related to the child’s hearing loss. Ensuring all communication partners and settings support the communication needs of the child and responding to the child’s communication attempts can allow learning and expansion of communication skills. Team members should reach out to those providers with specific expertise in communication systems and discuss adaptations and adjustments based on the child’s specific ASD and hearing loss related needs. Identifying a child’s motivators is also helpful in planning activities to encourage expanded communication attempts. Social skills development and integration into a peer group are supports children will likely need to develop broader social communication. Building social skills and using peer mentoring can expand the capacity for community integration for a child who is Deaf/HH with ASD. It is important to take into consideration a child’s communication level and mode; it is also helpful to align the right network of peers. Exposure to peers with hearing loss can be important, particularly if a child is using primarily sign language for communication. The benefits of participation in a language-rich environment with direct communication cannot be understated. The authors also recognize the importance of using every possible tool available to facilitate communication. Often the sensory needs of children with ASD may not allow consistent use of amplification/technology. This may take
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an auditory/speech approach out of the equation during those times. It is also important to not solely rely on expressive language to determine the effectiveness of a communication mode. In one author’s personal experience (H.I.), her son did not produce sign language expressively; however, he comprehended sign language well beyond his expressive capabilities. By persisting with exposure to sign language, he now has a foundation for expressive language through sign as well as through speech. Furthermore, he also exhibited features of apraxia of speech, which responded to treatment interventions specifically targeted toward apraxia. This allowed his speech to be understood by others. His communication journey has spanned truly all modalities (signing, speech, pictures, PROMPT therapy, written communication). His therapists were willing to adapt interventions (using PROMPT therapy, partnering with an American Sign Language interpreter, including cotreatment sessions with occupational therapy).
BEHAVIORAL SUPPORTS Often, children who are Deaf/HH with ASD require more intensive behavioral supports. Although behaviors are often related to challenges in communication, there can be other reasons. One family in the study by MyckWayne et al described their experience working with applied behavioral analysis (ABA) services that targeted their child’s focus.2 This was an essential step to more effectively expand communication development. It can be assumed based on the parent frustrations described previously that those providers with expertise in behavioral strategies for children with ASD would benefit from collaboration of those who understand the needs of children who are Deaf/HH to ensure appropriate adaptations and approaches needed based on the child’s hearing loss.
FINANCIAL BURDEN Although there is information related to some of the financial burdens felt by families of children with ASD, this has not been queried within families of children who are Deaf/HH
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SUMMARY Families of children who are Deaf/HH with an ASD experience many frustrations and challenges in the identification of ASD, accessing supports and services to address all of their child’s needs, and identifying networking and support opportunities with other families with children with similar needs. Professionals are in a unique position to partner with families in navigating the often disconnected systems of services for children who are Deaf/HH and services for children with ASD. RESOURCES 1. Gallaudet Odyssey special editions re: deafness/autism (http://www.gallaudet.edu/ Documents/Clerc/Odyssey-2008-v9i1.pdf and http://www.gallaudet.edu/clerc_center/ researching_autism_and_deafness.html. Accessed August 19, 2014)
2. Colorado Hands and Voices–Deaf Plus (http://www.cohandsandvoices.org/plus/ index.html) 3. Autism Society (http://www.autism-society. org/)
REFERENCES 1. Pimperton H, Kennedy CR. The impact of early identification of permanent childhood hearing impairment on speech and language outcomes. Arch Dis Child 2012;97(7):648–653 2. Myck-Wayne J, Robinson S, Henson E. Serving and supporting young children with a dual diagnosis of hearing loss and autism: the stories of four families. Am Ann Deaf 2011;156(4):379–390 3. Roper L, Arnold P, Monteiro B. Co-occurrence of autism and deafness: diagnostic considerations. Autism 2003;7(3):245–253 4. Beals K. Early intervention in deafness and autism: one family’s experiences, reflections, recommendations. Infants and Young Children 2004;17(4): 284–290 5. Wiley S, Gustafson S, Rozniak J. Needs of parents of children who are deaf/hard of hearing with autism spectrum disorder. J Deaf Stud Deaf Educ 2014; 19(1):40–49 6. Hands and VoicesCommunication considerations: Deaf Plus. Available at: http://www.handsandvoices. org/comcon/articles/deafplus.htm. Accessed April 27, 2014 7. Muse C, Harrison J, Yoshinaga-Itano C, et al; Joint Committee on Infant Hearing of the American Academy of Pediatrics. Supplement to the JCIH 2007 position statement: principles and guidelines for early intervention after confirmation that a child is deaf or hard of hearing. Pediatrics 2013;131(4): e1324–e1349 8. Centers for Disease Control and Prevention (CDC). Infants tested for hearing loss—United States, 1999–2001. MMWR Morb Mortal Wkly Rep 2003;52(41):981–984 9. Szymanski CA, Brice PJ, Lam KH, Hotto SA. Deaf children with autism spectrum disorders. J Autism Dev Disord 2012;42(10):2027–2037
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with an ASD. There are varying resources and barriers across the United States related to coverage of amplification and therapies. Some children benefit from a cotreatment model; however, this can sometimes be a challenge to adequately fund based on copayments and limited number of insurance-covered visits. Behavioral interventions often fall under mental health coverage, which may have different rules and requirements as compared with “medical” therapies. Although this article has not expanded into all of the various costs associated with hearing loss and ASD, it is safe to assume many families have substantial costs related to their child’s needs. Professionals should be aware of the potential financial impact on families.
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