Supporting Parents of Children with Autism

1. Supporting Parents of Children with Autism Early Support for Infants and Toddlers Debi Donelan, MSSA & Carolyn Taylor, MS Infant and Early Childhood Conference May 7, 2015

2. Autism Outreach Project https://www.nwesd.org/autism Kids' Potential, Our Purpose

3. Early Support for Infants and Toddlers (ESIT) Mission The purpose of the Early Support for Infants and Toddlers program is to build upon family strengths by providing coordination, supports, resources, and services to enhance the development of children with developmental delays and disabilities through everyday learning opportunities. Kids' Potential, Our Purpose

4. Concerns or “Red Flags” • No big smiles or other warm, joyful expressions by six months or thereafter • No back-and-forth sharing of sounds, smiles or other facial expressions by nine months • No babbling by 12 months • No back-and-forth gestures such as pointing, showing, reaching or waving by 12 months https://www.autismspeaks.org/what-autism/learn-signs Kids' Potential, Our Purpose

5. Concerns or “Red Flags” • No words by 16 months • No meaningful, two-word phrases (not including imitating or repeating) by 24 months • Any loss of speech, babbling or social skills at any age https://www.autismspeaks.org/what-autism/learn-signs Kids' Potential, Our Purpose

6. Concerns or “Red Flags” • Modified Checklist for Autism in Toddlers, Revised(M-CHAT) https://www.autismspeaks.org/what-autism/diagnosis/mchat • Autism Speaks Video Glossary https://www.autismspeaks.org/what-autism/video-glossary Kids' Potential, Our Purpose

7. How to Talk to Parents about Concerns • Approach the parent with empathy • Highlight the child’s strengths • Discuss specific behaviors of the child • Use active listening • Have resources available • Refer the parent to their doctor http://www.cdc.gov/ncbddd/actearly/pdf/parents_pdfs/tipstalkingparents.pdf Kids' Potential, Our Purpose

8. How to Talk to Parents about Concerns • Autism Speaks “Talking to Parents about Autism Training Video” • English and Spanish https://www.autismspeaks.org/what-autism/learn-signs/talking-parents-about-autism-action-kit Kids' Potential, Our Purpose

9. Dealing with The Diagnosis5 Stages in the Grief Process • Denial • Anger • Bargaining • Sadness or Grief • Acceptance Autism Speaks 100 day kit Kids' Purpose

10. Supporting Parents During and After a Diagnosis • Pre-diagnosis: Wait time to see a Diagnostician or before outside private services are received • Provide resources & information • Refer to ESIT or Preschool Special Education • After diagnosis: Have autism specific resources available • AUTISM SPEAKS 100 Day Kit for Newly Diagnosed families of Young Children • Refer the parent to other parents Kids' Potential, Our Purpose

11. After Diagnosis • The Autism Speaks 100 Day Kit for Newly Diagnosed Families of Young Children was created specifically for families of children ages 4 and under to make the best possible use of the 100 days following their child's diagnosis of autism. • Download the 100 Day Kit from Website https://www.autismspeaks.org/family-services/tool-kits/100-day-kit • Request a 100 Day Kit- Families whose children have been diagnosed in the last 6 months may request a complimentary hard copy of the 100 Day Kit by calling 888-AUTISM2 (888-288-4762) and speaking with an Autism Response Team Coordinator Kids' Potential, Our Purpose

12. AUTISM SPEAKS 100 DAY KIT • About Autism: What is Autism? Causes? • You, Your Family and Autism • Getting Your Child Services • How is Autism Treated? • Choosing the Right Intervention? • Ten Things Every Child with Autism Wishes you Knew • A Week by Week Plan for the Next 100 Days Kids' Purpose

13. Washington Resources • Parent to Parent (P2P) • Provides emotional support • Social & recreational events • Culturally relevant services • Information and education • Referrals to community services http://arcwa.org/getsupport/parent_to_parent_p2p_programs Kids' Potential, Our Purpose

14. Washington Resources • WithinReach • ParentHelp123.org, is operated by the statewide non-profit WithinReach, and helps Washington State families find services in their communities and apply for health insurance, food assistance programs and more. The website also provides important health information for pregnant women, children and families. • http://www.parenthelp123.org/ Kids' Potential, Our Purpose

15. Washington Resources • Seattle Children’s Autism Center • Monthly speakers • Blogs • http://www.seattlechildrens.org/clinics-programs/autism-center/ • Autism Outreach Project • Lending Library • Website Kids' Potential, Our Purpose

16. Washington Resources • UW Autism Center • http://depts.washington.edu/uwautism/index.php • UW Research in Early Autism Detection and Intervention • http://depts.washington.edu/readilab/ • UW Haring Center • http://haringcenter.org/ Kids' Potential, Our Purpose

17. Small Group Activity • Instructions: • Pair up with another person. In this role-play activity, you will each have a chance to practice sharing your concerns with a parent. One person is the parent and one is the professional. Use the child’s strengths and behaviors as a starting point. Use empathy and active listening. Point out resources that are available to the parent. Kids' Potential, Our Purpose

18. Small Group Activity • Scenario 1 You are an early intervention specialist working with Nora and her parents. You have completed an evaluation for eligibility into the early intervention program. You have concerns that Nora is on the autism spectrum and you would like to share your concerns with her parents. Nora is 27 months old. Her evaluation scores show typical gross motor skills. She is running smoothly, walking up and down stairs holding a railing, and climbing onto furniture. Nora’s developmental skills in other areas are significantly delayed. She is not responding to her name, makes limited eye contact, and does not use words to communicate. Nora does not seem to enjoy playing with toys the way they are designed to be played with, but instead spins the toys. Practice a conversation with Nora’s parents, highlighting Nora’s strengths and using specific behaviors to point out areas of concern. Kids' Potential, Our Purpose

19. Small Group Activity • Scenario 2 You are Dylan’s preschool special-education teacher. Dylan qualified for preschool with an expressive communication delay. You have concerns that he is displaying symptoms of an autism spectrum disorder. Dylan is 3.5 years old. He has been in your class for almost 6 months. His strengths include his cognitive, receptive language, and gross and fine motor skills. Dylan can complete puzzles, identify colors, numbers and letters, stack blocks and run and climb well. Your concerns are with Dylan’s social and communication skills. He uses single words to label objects, and to repeat phrases that are familiar to him. However, he is not using words to communicate his needs. Dylan does not appear to notice the other children in the class or try to imitate their behavior. He gets very upset with changes in the classroom routine. Have a conversation with Dylan’s parents, highlighting his strengths and using specific behaviors to point out areas of concern. Kids' Potential, Our Purpose

20. References • Autism Outreach Project • Autism Speaks • Seattle Children’s Autism Center Kids' Potential, Our Purpose