Autistic Adults as Educators Exploring Parent Perceptions of Autistic Presenters
Main Article Content
Keywords
autism, autistic adults , lived experience, parent education, autistic child, family
Abstract
Autistic voices have historically been excluded from the autistic narrative. The purpose of this qualitative study was to consider how autistic adults are viewed by parents of autistic children and how these parents make use of the information provided by autistic adults. Results of this study indicate that parents of autistic children hold a positive view towards autistic adults and value information shared by autistic adult presenters.
References
Ashing, K., Serrano, M., Rosen, S. (2017). Abstract LB-052: Using community team science: An advocacy engaged approach to recruit ethnic minorities in cancer research. Cancer Research. 77(13_Supplement): LB-052.
https://doi.org/10.1158/1538-7445.AM2017-LB-052
Bernard, C., Harris, P. (2019). Serious case reviews: The lived experience of Black children. Child & Family Social Work, 24(2), 256-263.
Braun, V., Clarke, V. (2006). Using thematic analysis in psychology, Qualitative research in psychology, 3(2), 77-101.
Beykikhoshk, A., Arandjelović, O., Phung, D., Venkatesh, S., Caelli,T. (2015). Using Twitter to learn about the autism community. Social Network Analysis and Mining, 5(1), 22. https://doi.org/10.1007/s13278-015-0261-5
Cage, E., Bird, G., Pellicano, L. (2016). ‘I am who I am’: Reputation concerns in adolescents on the autism spectrum. Research in Autism Spectrum Disorders, 25, 12-23. https://doi.org/10.1016/j.rasd.2016.01.010
Corby, D., Taggart, L., & Cousins, W. (2020). The lived experience of people with intellectual disabilities in post-secondary or higher education. Journal of Intellectual Disabilities, 24(3), 339–357. https://doi.org/10.1177/1744629518805603
Crane, L., Batty, R., Adeyinka, H., Goddard, L., Henry, L. A., Hill, E., L. (2018). Autism diagnosis in the United Kingdom: Perspectives of autistic adults, parents and professionals. Journal of Autism and Developmental Disorders, 48(11), 3761-3772. https://doi.org/10.1007/s10803-018-3639-1
Gibson, A, N., Hanson-Baldauf, D. (2019). Beyond sensory story time: An intersectional analysis of information seeking among parents of autistic individuals. Library Trends, 67(3), 550-575. https://doi.org/10.1353/lib.2019.0002
Gillespie-Lynch, K., Kapp, S. K., Brooks, P. J., Pickens, J., Schwartzman, B. (2017). Whose expertise is it? Evidence for autistic adults as critical autism experts. Frontiers in Psychology, 8(438). https://doi.org/f9z2kk
Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism 2016, 20(4), 442-462. https://doi.org/10.1177/13623613155882
McAuliffe, C., Upshur, R., Sellen, D. W., Di Ruggiero, E. (2019). The lived experience of global public health practice: A phenomenological account of women graduate students. Health and human rights, 21(1), 115.
Miles, M. B., Huberman, A.M., Saldaña, J. (2014). Qualitative data analysis: A methods sourcebook. 3rd ed. Sage.
Mouchet, A., Morgan, K., Thomas, G. (2019). Psychophenomenology and the explicitation interview for accessing subjective lived experience in sport coaching. Sport, Education and Society, 24(9), 967-980. https://doi.org/10.1080/13573322.2018.1495189
Nicolaidis, C., Raymaker, D., Kapp, S. K., et al. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism, 23(8), 2007-2019. https://doi.org/10.1177/1362361319830523
Shepherd, D., Goedeke, S., Landon, J., Meads, J. (2020). The types and functions of social supports used by parents caring for a child with autism spectrum disorder. Journal of Autism and Developmental Disorders,1-16. https://doi.org/10.1007/s10803-019-04359-5
Teti, M., Cheak-Zamora, N., Lolli, B., Maurer-Batjer, A. (2016). Reframing autism: Young adults with autism share their strengths through photo-stories. Journal of pediatric nursing, 31(6), 619-629. https://doi.org/10.1016/j.pedn.2016.07.002
van Zelst, C. (2020). Integrating lived experience perspectives into clinical practice. A Clinical Introduction to Psychosis: Elsevier, 687-703. https://doi.org/j2nd
Wolff, S. “Because He Is Different”: Shifts in Discourse and the Increasing Presence of Autism in Fictional Television [Master’s Thesis, The University of Wisconsin-Milwaukee]. (2018).
https://doi.org/10.1158/1538-7445.AM2017-LB-052
Bernard, C., Harris, P. (2019). Serious case reviews: The lived experience of Black children. Child & Family Social Work, 24(2), 256-263.
Braun, V., Clarke, V. (2006). Using thematic analysis in psychology, Qualitative research in psychology, 3(2), 77-101.
Beykikhoshk, A., Arandjelović, O., Phung, D., Venkatesh, S., Caelli,T. (2015). Using Twitter to learn about the autism community. Social Network Analysis and Mining, 5(1), 22. https://doi.org/10.1007/s13278-015-0261-5
Cage, E., Bird, G., Pellicano, L. (2016). ‘I am who I am’: Reputation concerns in adolescents on the autism spectrum. Research in Autism Spectrum Disorders, 25, 12-23. https://doi.org/10.1016/j.rasd.2016.01.010
Corby, D., Taggart, L., & Cousins, W. (2020). The lived experience of people with intellectual disabilities in post-secondary or higher education. Journal of Intellectual Disabilities, 24(3), 339–357. https://doi.org/10.1177/1744629518805603
Crane, L., Batty, R., Adeyinka, H., Goddard, L., Henry, L. A., Hill, E., L. (2018). Autism diagnosis in the United Kingdom: Perspectives of autistic adults, parents and professionals. Journal of Autism and Developmental Disorders, 48(11), 3761-3772. https://doi.org/10.1007/s10803-018-3639-1
Gibson, A, N., Hanson-Baldauf, D. (2019). Beyond sensory story time: An intersectional analysis of information seeking among parents of autistic individuals. Library Trends, 67(3), 550-575. https://doi.org/10.1353/lib.2019.0002
Gillespie-Lynch, K., Kapp, S. K., Brooks, P. J., Pickens, J., Schwartzman, B. (2017). Whose expertise is it? Evidence for autistic adults as critical autism experts. Frontiers in Psychology, 8(438). https://doi.org/f9z2kk
Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism 2016, 20(4), 442-462. https://doi.org/10.1177/13623613155882
McAuliffe, C., Upshur, R., Sellen, D. W., Di Ruggiero, E. (2019). The lived experience of global public health practice: A phenomenological account of women graduate students. Health and human rights, 21(1), 115.
Miles, M. B., Huberman, A.M., Saldaña, J. (2014). Qualitative data analysis: A methods sourcebook. 3rd ed. Sage.
Mouchet, A., Morgan, K., Thomas, G. (2019). Psychophenomenology and the explicitation interview for accessing subjective lived experience in sport coaching. Sport, Education and Society, 24(9), 967-980. https://doi.org/10.1080/13573322.2018.1495189
Nicolaidis, C., Raymaker, D., Kapp, S. K., et al. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism, 23(8), 2007-2019. https://doi.org/10.1177/1362361319830523
Shepherd, D., Goedeke, S., Landon, J., Meads, J. (2020). The types and functions of social supports used by parents caring for a child with autism spectrum disorder. Journal of Autism and Developmental Disorders,1-16. https://doi.org/10.1007/s10803-019-04359-5
Teti, M., Cheak-Zamora, N., Lolli, B., Maurer-Batjer, A. (2016). Reframing autism: Young adults with autism share their strengths through photo-stories. Journal of pediatric nursing, 31(6), 619-629. https://doi.org/10.1016/j.pedn.2016.07.002
van Zelst, C. (2020). Integrating lived experience perspectives into clinical practice. A Clinical Introduction to Psychosis: Elsevier, 687-703. https://doi.org/j2nd
Wolff, S. “Because He Is Different”: Shifts in Discourse and the Increasing Presence of Autism in Fictional Television [Master’s Thesis, The University of Wisconsin-Milwaukee]. (2018).