Exploring the Perspectives of Fathers of Children with Autism Spectrum Disorders

1. Exploring the Perspectives of Fathers of Children with Autism Spectrum Disorders Team Members: Jessica Malmberg, Sara Oldroyd, Bobbie Thurston, and Martin Toohill Faculty Mentor: Kathy Humphries URLEND 2010 – 2011

2. Evolution of Project • Original idea: Create support group curriculum & conduct support group using this curriculum • Segue: Review of the literature • Paucity of information regarding experiences of fathers of a child with ASD • New plan: Gain a better understanding of the experiences of fathers of children with ASD

3. Research Background • Parental stress : often investigated in families of children with ASD • Focus on the experience of mothers • Differences in how mothers and fathers experience caregiver stress/cope with child’s disability

4. Research Background (continued) • Coping Strategies: might be beneficial to one parent, not to the other • Measures of Stress and Coping: function of theory, constructs, e.g., appraisal • Model of Transactional Stress • Other models may be more appropriate given complexity of ASD

5. Methodology • Study Type: Small N, qualitative, exploratory • IRB: Submitted for expedited review at USU • Participants: Fathers of a child with ASD • Procedure: Semi-structured interview • Data Collection: Interviews recorded and transcribed • Analysis: Qualitatively analyzed to examine thematic patterns

6. Methodology • Participants • Fathers of a child with ASD • Current clients of Parents, Let’s Unite for Kids (PLUK) in Billings, MT • All children had a formal diagnosis of ASD • Procedures • Interviewed by Bobbie Thurston in March-April 2011 • Informed consent • Semi-structured interview created by group members, lasted approximately 30-60 minutes

7. Demographics of child with ASD • 5 males, 2 females • Ages: Ranged from 9 to 31 • Formal diagnosis: 3 diagnosed with Autistic Disorder, 4 diagnosed with Asperger’s Disorder • 2 in self-contained classrooms, 3 with other IEP services, 1 graduated from college and employed, 1 works at supported employment agency

8. Research Questions 1. What characterizes the father’s relationship with their child with ASD? 2. What is the knowledge level of fathers about ASD, including social, emotional, behavioral and other aspects of ASD? 3. What sources of stress have fathers encountered in raising their child with ASD? 4. How has raising a child with ASD impacted the father's life? 5. What types of support (emotional, knowledge, skills, etc) have fathers of children with ASD utilized and what additional resources do they desire?

9. Interview Question 1 • Please tell me about your child. For example, describe his/her talents, struggles, and how he or she is the same or different from your other children (if applicable). • What do you like best about your child? • What are some memorable moments? • What is it like being a father of a child with ASD?

10. Overview of Child • Like best: Artistic, Great Memory, Mild Mannered, Curious, “Unshielded, Uncorrupted Honesty” “What’s not to like…she is my little girl.” “My relationship [with him] and seeing him succeed is probably the most fulfilling thing that has happened for me.” • What it’s like: Learn patience, can be frustrating, stressful, educational, rewarding “It’s very frustrating. I always think of a dad as being the guy that can fix everything and this is something I can’t fix and that bothers me. I feel like I should be able to do more.”

11. Interview Question 2 • What were your knowledge and beliefs about ASD before your child came into your family, and what are they now? Have they changed?

12. Knowledge of ASD • Parents reported knowing very little about ASD prior to diagnosis of their child • Varying degree of desire to become “the expert” vs. acceptance • Wife often becomes expert “My wife, more than me, is trying to learn absolutely everything there is about it… I have no desire to be the expert and the advocate, I just want to take care of my girl.”

13. Interview Question 3 • What experiences, challenges or period of time (if any) has been most stressful since the birth of your child with ASD? • What feelings and emotions have you experienced? • How did you deal with these?

14. Experiences, Challenges, & Emotions “Well emotions you feel as a parent run the whole gamut from blissful happiness to dark anger. It’s the same with autistic children.” – Father 6 • Special Education at school • Finding providers • Aloofness • Her ‘shutdowns’

15. Interview Question 4 • What coping strategies have you found to be effective in your home? Are these different in raising your child with ASD? • What agencies and services have been helpful? Why? • What services/supports do you still want?

16. Coping Strategies and Services “I don’t know that the ways of coping are much different than dealing with a normal kid only they are just greater, you know I mean they are more frequent…” – Father 5 • Social Security • PLUK • School therapists • Conferences • Parent-Teacher boards • Father 4 Quote

17. Interview Question 5 • How has having a child with ASD impacted or affected your life perspective (positively or negatively)?

18. Impact on Life Perspective “Positive, positive, positive, positive, positive, I am a better man for Zander partially because I have to be for him and partially because he teaches me so much. Um I don’t know like if I am allowed to say that but that might sounds like a phony answer to some people you know…” -Father 7 • Positive • Mostly positive • Hard on marriage • Positive

19. Limitations Biased sample Volunteer Fathers Project evolving Small sample size Fathers have a different view from mothers Theory-based research Future directions Survey Questions Non-biased sample Building block for curriculum development Conclusions

20. Feedback on URLEND Experience • What we liked • Syllabus • Parent Directed Consultations • Panels • Possible areas of improvement • Clearer timelines • Perhaps create 1 document with a list of all required projects and their due dates • More hands-on activities that are focused on real-world examples