Parental Perspectives The Influence of Autism Spectrum Disorders on Family Life

1. Parental PerspectivesThe Influence of Autism Spectrum Disorders on Family Life The Department of Communicative Disorders (CD) California State University (CSULB)

2. Presenters: Carolyn Conway Madding, Ph.D., CCC-SLP Professor and Chair, CSULB Michelle Powers-Lundvall, M.A., CCC-SLP Full-Time Lecturer, CSULB Ursula Jarrin, B.A. International Graduate Student

3. Overview of presentation: A. Motivation for the Study B. Autism Spectrum Disorders (ASDs) Data & Statistics (CDC, 2013) C. Literature Review – Parental Surveys D. Presentation of Survey and Findings E. Highlights & Implications of Survey F. Data from Interactive Autism Network (IAN) G. Case Studies H. Audience Sharing

4. A. Motivation for the Study • Learning more about our clients with ASD and their parents, from our Autism and Culturally & Linguistically Diverse (CLD) clinics at CSULB. • Gaining a deeper insight into parents’ perspectives regarding autism for further support and understanding.

5. B. Autism Spectrum Disorders (ASDs) Data & Statistics (CDC, 2013) PREVALENCE -1 IN 88 CHILDREN HAVE BEEN IDENTIFIED w/an ASD   -ASDs ALMOST 5X MORE COMMON AMONG BOYS (1 in 54) THAN GIRLS (1 in 252)  -ASDs OCCUR IN ALL RACIAL, ETHNIC & SOCIOECONOMIC GROUPS 

6. RISK FACTORS & CHARACTERISTICS -AMONG IDENTICAL TWINS, IF ONE CHILD HAS AN ASD, OTHER TWIN WILL BE AFFECTED 36-95% OF THE TIME  -PARENTS WITH A CHILD w/an ASD HAVE 2-18% CHANCE SECOND CHILD WILL BE AFFECTED  -CHILDREN BORN TO OLDER PARENTS AT HIGHER RISK FOR ASDs  -SMALL PERCENTAGE OF CHILDREN BORN PREMATURELY OR w/LOW BIRTH WEIGHT AT GREATER RISK FOR ASDs  -MAJORITY (62%) OF CHILDREN IN CDC’s MONITORING NETWORK (ADDM) IDENTIFIED w/an ASD DID NOT HAVE INTELLECTUAL IMPAIRMENT (Intelligence quotient <=70) 

7. DIAGNOSIS -RESEARCH HAS SHOWN DIAGNOSIS OF ASD AT AGE 2 CAN BE RELIABLE, VALID & STABLE  -MORE CHILDREN ARE BEING DIAGNOSED AT EARLIER AGES-A GROWING NUMBER (18%) BY AGE 3  -MOST CHILDREN NOT DIAGNOSED UNTIL AFTER AGE 4 -EARLIER FOR CHILDREN w/AUTISTIC DISORDER (4 years) -SOMEWHAT LATER FOR CHILDREN MORE BROADLY-DEFINED ASD (4 years, 5 months) -MUCH LATER FOR ASPERGER DISORDER (6 years, 3 months)  -STUDIES CONFIRM THAT PARENTS OF CHILDREN w/ASDs NOTICE DEVELOPMENTAL PROBLEMS BEFORE CHILD’S FIRST BIRTHDAY

8. C. Literature Review • Gray, 2002 - 77 parents of children with ASD in Queensland, Australia • 10-year longitudinal study • Stages of Family Adaptation to ASD: • Onset-intense stress to obtain diagnosis and treatment • Stress lessens-but, struggle continues for best treatment • options • 3. Adolescence-exacerbation of problems; parental exhaustion • 4. Realization of long-term effects; tenacity of disabilities

9. C. Literature Review Gray’s study–Showed improved relationships with extended family over time -Less concern about public behavior; better coping skills -More successful communication Other changes over the 10 years of Gray’s study: -More concern about violence; failure of child to “recover” -Reduced quality of life -Criticism of available services

10. C. Literature Review Phelps, McCammon, Wuensch, & Golden, 2009–295 parents of children with ASD in North Carolina surveyed re: support Results: -Stress was buffered by support from families, spouse, similar families -Formal support through early intervention and other services rated both helpful and unhelpful

11. C. Literature Review Bayat (2007)–(N-175) -Only study reporting positive effect on parents of children with ASD -Cited person and spiritual growth -Greater appreciation of life–more focus on wisdom and self-actualization

12. C. Literature Review Other surveys… -Showed disruption in family functioning -Resentment of siblings due to restrictions in family life -Parent and sibling embarrassment -Sibling feelings of neglect

13. C. Literature Review ISSUES WITH BILINGUALISM: -More than 300 languages spoken in the US -Approximately 1 in 5 residents of the US over age 5 speaks a language other than English -Parents seek clarity about bilingualism and ASD Professionals, including SLPs, often caution parents to speak English only Cite confusion and overstressing language system -Contradicts ASHA position (2011); must show deference to family preference

14. C. Literature Review -No research shows detrimental effect of heritage language on language impaired children -Intervention should be provided in heritage language of children with impairments (Kohnert, Yim, Nett, Kan & Duran, 2005) and others -Yu (2013) cited biggest challenge to Chinese parents of child with ASD… lack of available intervention in Chinese languages

15. D. Presentation of Survey and Findings 1. Participants 2. Examiner 3. Pilot Questionnaire 4. Procedure 5. Findings

16. 1. Participants • -18 Parents of children and adults with an official diagnosis of autism (Ages: 4-43, Male:17, Female:1). • -Participants are enrolled in the CSULB Speech-Language Clinics (i.e., Autism, Culturally & Linguistically Diverse (CLD)). • -Ethnicities of participants: • Latino, Euro-American, African American, Korean & Chinese.

17. 2. Examiner • -International student from Peru. • -Bachelor’s Degree in Psychology, CSULB (2009). • -Second-year Communicative Disorders M.A. student at CSULB. • -Administered questionnaire as part of Directed Studies Course with Dr. Madding, Autism Clinic with Michelle Powers, and interest in autism.

18. 3. Pilot Questionnaire -Developed by Sonja Young, CD graduate student, and modified by presenters. -Twenty-four open ended questions, including one “sharing” question for parents to provide insights/concerns. -Three versions: English, Spanish, and Korean.

19. 4. Procedure -Examiner contacted parents of clients in Autism and CLD clinics. -Examiner administered questionnaires in English and Spanish, either in a private room at CSULB or via telephone, according to each parent’s preference and convenience. -Parents were notified of their confidentiality rights by the examiner before the interview began.

20. 5. Findings -A total of 24 responses were obtained from pilot questionnaire.