Research Question: How do mothers of adolescents with autism experience and prepare for their child\u27s post- high school transition

Casey, Devon R

English

UNH Scholars' Repository

University of New HampshireUniversity of New Hampshire Scholars' RepositoryHonors Theses and Capstones Student ScholarshipSpring 2013Between Wind and Water: Experiences of Mothersof Adolescents with Autism During the Post-HighSchool TransitionDevon R. CaseyUniversity of New Hampshire - Main Campus, drp36@wildcats.unh.eduFollow this and additional works at: https://scholars.unh.edu/honorsPart of the Occupational Therapy CommonsThis Senior Honors Thesis is brought to you for free and open access by the Student Scholarship at University of New Hampshire Scholars' Repository.It has been accepted for inclusion in Honors Theses and Capstones by an authorized administrator of University of New Hampshire Scholars'Repository. For more information, please contact nicole.hentz@unh.edu.Recommended CitationCasey, Devon R., "Between Wind and Water: Experiences of Mothers of Adolescents with Autism During the Post-High SchoolTransition" (2013). Honors Theses and Capstones. 148.https://scholars.unh.edu/honors/148Between Wind and Water: Experiences of Mothers  of Adolescents with Autism During the Post-High School Transition Devon R. Casey, OTS & Susan Cook Merrill, PhD, OTR/L, FAOTA   University of New Hampshire Research Question  How do mothers of adolescents with autism experience and prepare for their child’s post-high school transition?   There are now a substantial number of families with adolescents who have autism.¹Little is known about how mothers of late-adolescents with autism experience their child’s post-high school transition.  Methods    Qualitative Description²   Two-part interview series   Creswell’s Qualitative Analysis³   Lifestyle Balance Model ⁴  Participants  (n=3)   Primary, care-providing mothers of adolescents with autism aged 18-19 years, enrolled in a full-time education program   All participants were between 45 and 50 years old  Occupational Therapy Intervention Implications   Use the Lifestyle Balance Model⁴ to help parents identify programs that will support their adolescents’ occupational performance and participation.   Consult with programs to facilitate adolescents’ transition.   Facilitate ongoing communication between families and post-high school programs.  Conclusion  Mothers of adolescents with autism feel they are in uncharted waters, without a map. Mothers expressed deep concern about finding post-high school environments in which their children could:  create a personal identity  feel safe  be appreciated as unique  be engaged and challenged  Mothers also feel the strain of being the first wave of families who are making these decisions.   References 1. Autism Society. (2012). Retrieved February 27, 2012 from  http://www.autism-society.org/about-autism/facts-and-statistics.html 2. Sullivan-Bolyai, S., Bova, C., & Harper, D. (2005). Developing and Refining Interventions in Persons with Health Disparities: The Use of Qualitative Description. Nursing Outlook, 53(3), 127-133. 3.Creswell, J. W. (2009). Qualitative Procedures. In J.W. Creswell., Research design: Qualitative, quantitative, and mixed method approaches (3rd Ed.) (pp. 173-202).  Sage: Thousand Oaks, CA. 4. Matuska, K.M., & Erickson, B. (2008). Lifestyle balance: How it is described and experienced by women with multiple sclerosis. The Journal of Occupational Science 15(1) pp. 20-26. 5.  Murray, J. (2012). Residential college places for young disabled at risk [photograph].  The Guardian. Retrieved April 17th, 2013 from http://www.guardian.co.uk/education/2012/sep/17/funding-for-disabled-specialist-colleges Themes  Staying Afloat: Navigating the Transition   Constantly adapting: “You think you have it all down     pat…and then ‘wham!’ out of the blue, one of them completely changes.”    Looking ahead: “It’s scary to think about what will happen to him when I’m not here.”    Navigating an unknown system: “It’s so hard when you don’t know what you’re doing, it really is. You just don’t know where to go or what to do or who to ask.”    Finding programs that offer balance: “I’m going to get him what he needs. He can never be cured, but he needs to be that best that he can be.”   Uncharted Waters: A Lack of Information    Turning to Peers: “Other mothers are your best forms of information because they’ve been there, done that, or they’ll go through it with you.”    Lack of Professional Support: “It would be nice if the medical people knew more.”  Acknowledgements Hamel Center for Undergraduate Research: Summer Undergraduate Research Fellowship University of New Hampshire, Occupational Therapy 

Between Wind and Water: Experiences of Mothers of Adolescents with Autism During the Post-High School Transition

University of New Hampshire

University of New Hampshire
University of New Hampshire Scholars' Repository
Honors Theses and Capstones Student Scholarship
Spring 2013
Between Wind and Water: Experiences of Mothers
of Adolescents with Autism During the Post-High
School Transition
Devon R. Casey
University of New Hampshire - Main Campus, drp36@wildcats.unh.edu
Follow this and additional works at: https://scholars.unh.edu/honors
Part of the Occupational Therapy Commons
This Senior Honors Thesis is brought to you for free and open access by the Student Scholarship at University of New Hampshire Scholars' Repository.
It has been accepted for inclusion in Honors Theses and Capstones by an authorized administrator of University of New Hampshire Scholars'
Repository. For more information, please contact nicole.hentz@unh.edu.
Recommended Citation
Casey, Devon R., "Between Wind and Water: Experiences of Mothers of Adolescents with Autism During the Post-High School
Transition" (2013). Honors Theses and Capstones. 148.
https://scholars.unh.edu/honors/148
Between Wind and Water: Experiences of Mothers 
 of Adolescents with Autism During the Post-High School Transition 
Devon R. Casey, OTS & Susan Cook Merrill, PhD, OTR/L, FAOTA   University of New Hampshire 
Research Question 
 
How do mothers of adolescents with 
autism experience and prepare for their 
child’s post-high school transition? 
  
There are now a substantial number of families 
with adolescents who have autism.¹Little is known 
about how mothers of late-adolescents with 
autism experience their child’s post-high school 
transition. 
 
Methods 
 
  Qualitative Description² 
  Two-part interview series 
  Creswell’s Qualitative Analysis³ 
  Lifestyle Balance Model ⁴ 
 
Participants  
(n=3) 
 
 Primary, care-providing mothers of adolescents 
with autism aged 18-19 years, enrolled in a full-
time education program 
 
 All participants were between 45 and 50 years old 
 
Occupational Therapy Intervention 
Implications 
 
 Use the Lifestyle Balance Model⁴ to help parents 
identify programs that will support their 
adolescents’ occupational performance and 
participation. 
 
 Consult with programs to facilitate adolescents’ 
transition. 
 
 Facilitate ongoing communication between families 
and post-high school programs. 
 
Conclusion 
 
Mothers of adolescents with autism feel they are in 
uncharted waters, without a map. Mothers expressed 
deep concern about finding post-high school 
environments in which their children could: 
 create a personal identity 
 feel safe 
 be appreciated as unique 
 be engaged and challenged 
 
Mothers also feel the strain of being the first wave of 
families who are making these decisions.  
 
References 
1. Autism Society. (2012). Retrieved February 27, 2012 from  
http://www.autism-society.org/about-autism/facts-and-statistics.html 
2. Sullivan-Bolyai, S., Bova, C., & Harper, D. (2005). Developing and Refining Interventions in Persons 
with Health Disparities: The Use of Qualitative Description. Nursing Outlook, 53(3), 127-133. 
3.Creswell, J. W. (2009). Qualitative Procedures. In J.W. Creswell., Research design: Qualitative, 
quantitative, and mixed method approaches (3rd Ed.) (pp. 173-202).  Sage: Thousand Oaks, CA. 
4. Matuska, K.M., & Erickson, B. (2008). Lifestyle balance: How it is described and experienced by 
women with multiple sclerosis. The Journal of Occupational Science 15(1) pp. 20-26. 
5.  Murray, J. (2012). Residential college places for young disabled at risk [photograph].  The Guardian. 
Retrieved April 17th, 2013 from http://www.guardian.co.uk/education/2012/sep/17/funding-for-
disabled-specialist-colleges 
Themes 
 
Staying Afloat: Navigating the Transition 
 
 Constantly adapting: “You think you have it all down     
pat…and then ‘wham!’ out of the blue, one of them 
completely changes.” 
 
  Looking ahead: “It’s scary to think about what will 
happen to him when I’m not here.” 
 
  Navigating an unknown system: “It’s so hard when you 
don’t know what you’re doing, it really is. You just 
don’t know where to go or what to do or who to ask.” 
 
  Finding programs that offer balance: “I’m going to get him 
what he needs. He can never be cured, but he needs to 
be that best that he can be.”  
 
Uncharted Waters: A Lack of Information 
 
  Turning to Peers: “Other mothers are your best forms 
of information because they’ve been there, done that, 
or they’ll go through it with you.” 
 
  Lack of Professional Support: “It would be nice if the 
medical people knew more.” 
 
Acknowledgements 
Hamel Center for Undergraduate Research: Summer Undergraduate Research Fellowship 
University of New Hampshire, Occupational Therapy 


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Between Wind and Water: Experiences of Mothers of Adolescents with Autism During the Post-High School Transition

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