Exploration of Parental Perspectives on Success as a Parent of a Child with Autism

1. Exploration of Parental Perspectives on Success as a Parent of a Child with Autism James Carpenter, Jennifer Hutchinson, ChristinaLow, Sheri Montgomery& Joseph Viskochil Advisors: David Derezotes and Louise Dunn

2. Introduction The rationale for this project is that the people who are the most knowledgeable about raising children with Autism spectrum disorders are families who have already done it. As professionals we are only making assumptions as to how they define successful parenting.

3. Background Research has focused on the stressinvolved in being a parent of a child with a disability, especially of a child with ASD(Kuhaneck et al., 2010). Working with parents from a strength model is empowering to parents (Zeman, Swanke, &Doktor, 2011).

4. ResearchQuestion Thepurpose of the study is to investigate how parents of children and youth with autism spectrum disorders view and define successful parenting. It was hoped that common themes or information would result from the data collected through nine interviews.

5. Method Semi-structured interview developed IRB approval Snowball sampling (n=9) Interviews conducted by UT trainees lasting 45 minutes or more Interviews transcribed by other sites Each trainee analyzed one question

6. Preliminary Results Celebration of the small successes Cherishing the value of family Enjoying time spent together Loving unconditionally Accepting each family member as themselves

7. Experience Raising ASD Children Many parents talked about how by adapting to what their child needs they are much more satisfied than trying to meet others expectations. "I am sure other people looking in say, well that is odd or different or unusual or something, but to us it is normal." Many parents made comments of living one day at a time and focusing on the small achievements. "You know there’s a lot of that anxiety, that comes from the uncertainty of not knowing what his future is going to be like."

8. Parenting Strategies Flexibility and Patience “my parenting strategy is try really hard not to sweat the small stuff and 99% of what goes on in life is small stuff” Consistency and Clarity of Expectations “if you tell him no you better be on your game and mean no” "Once he knew exactly what I expected from him, then his behavior greatly changed” Positive Parenting "We all like praise. And it is a great way to look at someone that you love and find happy good things. Catching them being good is a great thing!”

9. Strategies Changing Over Time Take it one day at a time “we just try to get through each day” Adaptation “I don’t suppose I had any concept of what parenting was before I had kids. The second you become a parent, it is kind of a shock from then on. And... you kind of just go down that road.” Learning through formal or informal means “We’re constantly learning just right along with him” Antecedent Control “I’m looking for the quickest exit, the least crowded (area)”

10. What parents see in the future • 7 parents expressed uncertainty about what their child would do in the future. • Employment concerns were related to: • child finding things desired to do (2) • anger (1) • behavior (1) • communication (2) • task difficulty (1)

11. Quotes on expectations for the future “It depends on what he chooses. You can't make that kid do anything he doesn't want to do.” “You have to just invite him and plant a seed for him in his mind that kind of , you know, blazes a trail, for him in his mind.”

12. Quotes regarding the future related to behavior “I hope to see him living as independently as possible….but when he’s mad he gets so mad so I think that actually keeping a job might be hard.” “His behaviors make it really hard. I don’t know that he will ever be fully independent.”

13. Quotes regarding the future related to Communication “I’m sure life as an adult when you can’t communicate properly would be difficult.” “He still doesn’t have a ton of expressive speech so it’s hard for us to even see exactly where he is receptively. We’re waiting to see what he can do.”

14. Quotes regarding future related to task difficulty “I could see him having an easy task oriented job, possibly, at some point in his life….I see him comfortable or able with that. I worry about him having a social life.”

15. Additional Quotes “Don’t forget that your kids are kids. It doesn’t matter if they have a disability. Just take the time to enjoy your child.” “I would see that being very important…having some sort of support whether its family or paid”

16. Additional Quotes “It is not a terrible thing. It is not the end of all things. It is kind of the beginning I think.” “I think it has been a great thing for my other kids to have siblings with autism. I think they’re much more compassionate, kinder, more understanding people.”

17. Additional Quotes “ I think it’s critical for them (parents) to really reframe around taking their focuses off their deficiencies and build a foundation around, based on, strengths…..and that will transform the vision of your child. It will change the relationship that you have with them.”

18. Additional Quotes “I would say that there’s, kind of the biggest thing you deal with is uncertainty. And… you know there’s, and a lot of that anxiety, or or, comes from the uncertainty of not knowing what his future is going to be like” “you have to basically answer that question yourself and decide whether you are going to espouse a mind set of hope, optimism, and positivity or not. And it is a bit of a leap of faith”

19. Additional Quotes “that positive foundation of self belief that we started to build, really had a huge. I wouldn’t say huge. Very substantial impact on his varied functioning and his relatedness and his willingness to connect with you and my wife saw that too and so we’re both, as I mentioned, we’re a family of high fives. I give him a hug when I drop him off at school and say “you rock buddy!” You know, we started to celebrate any success”

20. Additional Quotes “The highs are the one-on-one times. I don’t know, I guess when certain recognitions come through, I realize he is able to do different things. For both of them, that is always a very splendid thing. Very emotional.” “at the end of this life, the most important thing is the relationships that you have and that is your family. And …, it really makes you go out of your comfort zone to have a special needs child that you have to advocate for. And move mountains for. And so it makes you grow in so many ways. We go up to the legislature and they know us and give us hugs. And they are like “it is you guys again.”

21. James Carpenter • Modification of Autism Enhanced track to allow for more flexibility and personalization • Possibly adding some additional hours to the AE only track to allow for more involvement • Organizing AE only seminars so that they could be the same every month • For example, the last week of every month would really help with scheduling of work and school

22. Jennifer Hutchinson • Inclusion of one seminar where trainees bring: • specific questions/challenges from their practice relating to ASD, for group feedback • examples of specific practices that are working well, to share

23. Christina Low • Interactive Discussion Forum • Online discussion forum where trainees can submit questions during didactics • Similar format to online webinars • Gets a general sense of what types of questions trainees have and allows those with difficulties jumping in to also be included in discussion

24. Sheri Montgomery Create learning opportunities that pair more experienced participants with young, less experienced participants Provide more information related to assignments; present initially at orientation and then about 30 days prior to date assignment is due Explore means to involve a more diverse population of participants Seek ways to share the program with communities and other professionals outside the University settings Incorporate practices and information more representative of the states involved. Practices are different in each state, perhaps we can learn from each other and improve the services and knowledge of all participants

25. Joe Viskochil • Set up extensions of seminars to facilitate group meetings using the already set up video connection • These could be scheduled in advance to avoid overbooking, and may also help keep teams on top of deadlines • Random selection of us to pre-formed groups limited what we could do • Allowing us to select our own topic of interest could potentially produce different results

26. Work Cited Kuhaneck, H.M., Burroughs, T., Wright, J., Lemanczyk, T., & Darragh, A.R. (2010). A qualitative study of coping in mothers of children with an autism spectrum disorder. Physical and Occupational Therapy in Pediatrics, 30, 340-350. Zeman, L.D., Swanke, J., & Doktor, J. (2011). Strengths classification of social relationships among cybermothers raising children with Autism Spectrum Disorders. The School Community Journal, 21, 37-52.