Children

with Au&sm Spectrum Disorder and Hearing Loss: Professional Experiences

Department of Speech & Hearing Sciences
1Arizona State University

1,2,3, Jus&n Rozniak BA CCLS2, Susan Wiley MD2 Samantha Gustafson AuD
2Leadership Educa&on in Neurodevelopmental and related Disabili&es (LEND) Program The Division of Developmental and Behavioral Pediatrics Cincinna& Children's Hospital Medical Center The University of Cincinna& University Center for Excellence in Developmental Disabili&es

3Vanderbilt University Department of Hearing & Speech Sciences

Introduc&on/Background
There is a signicant lack of evidence guiding the diagnosis and interven:on for children with a dual diagnosis of permanent hearing loss (PHL) and au:sm spectrum disorder (ASD). The prevalence reports of PHL and ASD have ranged from 3 to 13% among children with PHL. Commonly used evalua:ons for ASD in hearing children are not validated on children with PHL and interven:ons have not been adapted to accommodate PHL in children with ASD. There is insucient support for both medical and educa:onal professionals providing support to this popula:on.

Table 1.

Themes
Educa:onal SePngs Family Educa:on Medical & Educa:onal Teamwork

Sub-themes
Peer-communica:on is essen:al Visual supports are useful Being part of the team Understanding the basics of communica:on Cross-discipline training Becer educa:on required for a united front Cross-discipline communica:on Inconsistent signing abili:es of child across sePngs Communica:on between school and medical interpreters Collabora:ve care conference Family outreach/networking

ASL Interpreters

Objec&ve/Design
To understand the involvement of the professionals who work with children with the dual diagnosis and their families. A focus group held at Cincinna: Childrens Hospital Medical Center lasted approximately 2 hours and was facilitated by a moderator from the Ohio Center for Au:sm & Low Incidence. Par:cipants were recruited from the Cincinna:, Ohio area. Figure 1 shows the composi:on of this focus group by professional interest. Ques:ons discussed: 1. In working with children with hearing loss and au:sm spectrum disorders, what tools or curricula have you used? Tell us how eec:ve these were in serving the child/children with the dual diagnosis. 2. What do you believe the most eec:ve educa:onal sePng(s) have been for children with hearing loss and au:sm spectrum disorder? Explain why you think this/ these sePngs are eec:ve. 3. What child characteris:cs would you consider important when choosing an educa:onal placement? 4. When thinking about eec:ve team collabora:on for children with hearing loss and an au:sm spectrum disorder, what characteris:cs do you look for in team members? 5. What would the perfect program look like for a child with hearing loss and an au:sm spectrum disorder? The group discussion was audiotaped and transcribed verba:m by the rst two authors. The rst authors systema:cally coded the transcript into themes and sub- themes. These themes were veried by other author and are reported in Table 1.
Work to be done

All team members can improve family educa:on to assist the family in becoming becer consumers of health informa:on regarding their child. Becer explana:ons/delinea:on of each team members' role Parents choose the communica:on mode and the medical and educa:onal providers support that decision Professionals monitor the childs progress towards the goal of communica:on & educa:on Work with parents to revise the chosen plan if necessary The founda:on of communica:on and communica:on development The impact that both PHL and ASD have on the communica:on development of the child Outline of their child's strengths and challenges within each educa:on sePng available Providing this educa:on may improve parents trust in the childs health, therapy, and educa:on team members, and may encourage them to act as an equal member of team.

Family Educa&on

Children with PHL and ASD open appear to have varying communica:on abili:es during a medical appointment when compared to the school environment. Sign language can appear unfamiliar or incorrect when compared to a child with PHL who uses ASL Exacerbated if the child has addi:onal motor planning issues. May be due to the unfamiliarity of the medical interpreter with the childs unique communica:on style Solu:ons to this inconsistent representa:on of the childs abili:es: Having one interpreter who stays with the child in all situa:ons Financial, personnel, and ethical barriers to this op:on U:lizing the educa:onal interpreter for the childs medical appointments Would require family agreement and cost sharing with the school Communica:on between the educa:onal and medical interpreters prior to medical appointments to share informa:on regarding the childs communica:on abili:es This may be accomplished through video dic:onary of childs idiosyncra:c signs

ASL Interpreters

Par:cipants requested a conference-type sePng to facilitate interdisciplinary educa:on. Facilitated by professionals from both the medical and educa:onal sePngs Content presented in an interdisciplinary manner, with co-presenters working together to plan content Open to families of children with PHL and ASD Pre-conference summit should be held prior to parent involvement to determine topics and content Family support should be increased. Reaching families who may not be looking for resources on their own New mechanisms allowing families to network with other families who have similar cultural/economic backgrounds and for a tangible resource for parents Include a brief explana:on of each component (e.g. interpreters, au:sm, communica:on, deafness, etc.) Access to a counseling service, or someone with whom they can talk outside of the medical and educa:onal systems

Work to be done

Ecacy of educa:on sePngs is highly dependent on the individual abili:es of the child. Open focused on the behavior/ability that is most interfering at the :me Should depend somewhat on the childs learning style Lack of available resources, open due to geographical loca:on, are a major obstacle in providing families with sucient choices Require many dierent resources and providers Some must be brought in from outside the childs school district Social sePng in Deaf Educa:on programs facilitates direct communica:on between peers Goal for most children should be to work towards integra:on with hearing-peers Useful tools/curricula were noted: Tac:le/hands-on educa:on more mo:va:ng than verbal- only Play, role-playing, and visual products Visual supports in the classroom Structured teaching (e.g. TEACCH model) An ideal program would include a xed curriculum for children with PHL and ASD beginning at Early Interven:on through 12th grade. Include collabora:on between all professionals and the family to determine priori:es for each individual child Team may evaluate each characteris:c of the child to best iden:fy specic challenges that the child may face Current communica:on abili:es (both expressive and recep:ve) may also aid in determining which supports are needed Focus on communica:on as a whole, rather than the specic impact of each disability, in order to provide the child with the most appropriate and eec:ve supports

Educa&onal Se]ngs

Medical & Educa&onal Teamwork

There is currently no consistent method of communica:on between professionals and with the parents. Communica:on notebooks, blogs, or Internet groups How much informa:on would be necessary to include? May not meet the needs of families who are struggling, may oer a skewed image of informa:on from providers, and may be redundant aper a par:cular amount of :me Dedicated team communica:on might be dicult to establish because the :me spent on communica:on eorts is not a billable service The ecacy of team members strengths open relies on the abili:es and dicul:es of the child. Desirable in team member characteris:cs Flexibility Follow-through Sensi:vity Respect Open-mindedness Ability to think outside the box

7% Figure 1. Focus Group Par&cipants 29% 21% 43%

n=12 Audiologists Deaf-Educators Au:sm specialists Special Educa:on Coordinator

Medical and Educa:onal professionals should have a becer understanding of the impact of the second diagnosis on their area of exper:se. Children with PHL and ASD may perform dierently in dierent sePngs, limi:ng our understanding of the childs needs Educa:onal placements may look dierent for dierent children depending on the strengths and challenges of each child A well-educated professional team may be becer equipped to work with the child and to present the family with op:ons regarding the childs future. This also may allow for the medical and educa:onal teams to provide a united front when presen:ng informa:on to the family. May prevent medical professionals from generalizing recommenda:ons about educa:onal op:ons

Par:cipants in this focus group discussed the individuality of educa:onal sePngs, expressed a great need for cross-discipline collabora:on, called for becer family educa:on, and discussed challenges with ASL interpre:ng. The most important aspect of becer serving children with PHL and ASD was determined to be collabora:on between the medical, therapeu:c, and educa:onal sePngs. Improving educa:on and collabora:on on topics discussed may alleviate the need for parents to seek out informa:on independently via the internet and may ensure that the informa:on received is accurate. Receiving appropriate and consistent informa:on from their childs team may foster a becer understanding and more open transmission of communica:on between parents and the team. Without collabora:on between the educa:onal and medical teams, parents may be less likely to receive uniform informa:on. The topic of improving the knowledge of members of the medical and educa:on team was discussed at length during this focus group and also was noted in a parent-centered focus group conducted by this research group (see poster #342), emphasizing this topics signicance as further ac:on is taken to improve the management of children with PHL and ASD. Moving forward, a pre-conference summit will be planned involving members of the professional focus group. This workshop will be designed to facilitate interdisciplinary educa:on and foster collabora:on.

Discussion

1. Roper, L., Arnold, P., & Monteiro, B. (2003). Co-occurrence of au:sm and deafness: Diagnos:c considera:ons. Au#sm, 7, 245-253. 2. Bradley, L. A., Krakowski, B., & Thiessen, A. (2008) With licle research out there its a macer of learning what works in teaching students with deafness and au:sm. Odessey, 9(1), 16-18. 3. Hitoglou, M., Ververi, A., Antoniadis, A., & Zafeiriou, D. (2010). Childhood Au:sm and Auditory System Abnormali:es. Pediatric Neurology, 42, 309-314. 4. Steinberg, A. G. (2008). Understanding the need for language. Odessey, 9(1), 6-9. 5. Egelho, K., Whitelaw, G., & Rabidoux, P. (2005). What audiologists need to know about au:sm spectrum disorders. Seminars in Hearing, 26(4), 202-209. 6. Szymanski, C. A., Brice, P. J., Lam, K. H., & Hoco, S. A. (2012). Deaf Children with Au:sm Spectrum Disorders. J Au:sm Dev Disord. Jan 31. [Epub ahead of print]

References