Perspectives of Fathers whose Children have an ASD Team Members: Ana Kemple-Reeves, Jennifer Hutchinson, Alekhya Narravula, Connie Lillejord, Tyler Whitney Faculty Mentor: Barbara Fietchl

Project Background -Jennifer Further exploration of last year’s URLEND Leadership project. Paucity of research specifically on fathers. Their results suggested that fathers experience more psychological distress related to not being able to “fix” the problem. We wanted to measure the impact of children’s diagnosis of ASD on fathers’ psychological well-being and the parent-child relationship

Methodology- Ana Fathers who participated in ABC’s of Autism Trainings (Gina Cook’s Project) or Autism Listservs in UT, ID, WY, ND. Survey packets included: Center for Epidemiological Studies of Depression Scale (CES-D10), Burn’s Anxiety Inventory (BAI) Two father involvement measures. Packets were provided in English and in Spanish.

Methodology cont. - Connie Surveys were anonymous Took approximately 15 minutes to complete Demographic Information Asked: Parents’ age Parents’ education level Marital status State where they live More than one child with ASD Child’s age Number of months since ASD diagnosis

Survey Results - Connie DemographicsResultsMean No. of Surveys29-- Fathers’ Age Range26-60 y.o.41 Mothers’ Age Range28-54 y.o.38 2 children with ASD in the family child with ASD in the family17-- Males79%-- Females21%--

Survey Results cont.-Alekhya DemographicsResults Married97% Never Married3% Divorced0% Average time since diagnosis6 yrs. Range of time since diagnosis15 mos-13 yrs. *Depression Results:9 fathers reported needing to be screened for depression (score >10) Child Age:Older child => less depression Child’s Gender:Female child => more depression

Some possible interesting discoveries-Alekhya Fathers less likely to attend trainings/ be active on listservs Had a number of people visit survey page and leave without starting survey: possible that visitors were not fathers as first page of survey stated that survey is open ONLY to fathers. Is it because mothers are primary care providers to child? Do fathers cope by working more?

Future plans for project…-Ana Present project on April 20 th at Autism Conference in Orem, UT. Leave listservs open for more data collection through the summer months. With more data we’d like to seek for publication to add to the literature. A larger and better study needs to be designed next year taking into account the challenges and limitations we faced in our project

Future Plans cont.-Jennifer Conduct a larger scale study using list serves that extend nationally Identify “incentives” for survey completion Switch focus to identification of coping or support strategies that are working Use this information to develop or establish support networks

Feedback on URLEND - Ana What I liked… Clinic opportunities Seminars Team Collaboration Suggested changes/additions to the program Provide more information on clinic visits: A. Provide directions & information on what to expect (e.g. specific training, observation only, hands-on interaction?) B. Adequate information can help us decide which clinics will be unique and beneficial to us as trainees.

Feedback cont. - Alekhya What I liked o The organization of the syllabus o Opportunities like  interviewing a clinic manager  taking part in a legislative activity  working with and learning more about other specialties o I learned how to take initiative and be proactive. o Taught me better organizational skills o How to work effectively on a team project and bring my strengths to the table What I would change o Organizing the PDC's better - knowing who is preparing for what ahead of time makes the session smoother o Maybe having an online calender with open clinic spot days will help scheduling clinics easier.

Feedback on URLEND - Jennifer “Teams make you better than you are, (group leadership project) multiply your value, (parent directed consultations and clinic visits) enable you to do what you do best, (didactic component) allow you to help others do their best, (presenting ABCs) give you more time, (???) provide you with companionship, (Making Lifelong Connections) help you fulfill the desires of your heart (ongoing education and research) and compound your vision and effort.” (refined vision and perspective) – John Maxwell

Feedback on URLEND-Connie What I Liked: Clinic experiences in Utah, MN and Utah were great! Opportunity to look at best practices, network and gain a new awareness. Appreciated the emphasis on cultural diversity and awareness (South Main and lectures). Family –centered Care: Lectures brought this more to the forefront for me. Liked layout of the URLEND website – especially the pictures, syllabus and log. What I would change: During the first two days of training – be cognizant of use of acronyms.