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

Autism Outreach Project Kids' Potential, Our Purpose

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

Concerns or “Red Flags” Kids' Potential, Our Purpose 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

Concerns or “Red Flags” Kids' Potential, Our Purpose 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

Concerns or “Red Flags” Kids' Potential, Our Purpose Modified Checklist for Autism in Toddlers, Revised (M-CHAT) Autism Speaks Video Glossary

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 Kids' Potential, Our Purpose

How to Talk to Parents about Concerns Autism Speaks “Talking to Parents about Autism Training Video” English and Spanish signs/talking-parents-about-autism-action-kit Kids' Potential, Our Purpose

Dealing with The Diagnosis 5 Stages in the Grief Process Denial Anger Bargaining Sadness or Grief Acceptance Autism Speaks 100 day kit Kids' Purpose

Supporting Parents During and After a Diagnosis Kids' Potential, Our Purpose 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

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.100 Day Kit for Newly Diagnosed Families of Young Children Download the 100 Day Kit from Website 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 ( ) and speaking with an Autism Response Team Coordinator Kids' Potential, Our Purpose

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

Washington Resources Parent to Parent (P2P) Provides emotional support Social & recreational events Culturally relevant services Information and education Referrals to community services ograms Kids' Potential, Our Purpose

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.WithinReach Kids' Potential, Our Purpose

Washington Resources Seattle Children’s Autism Center Monthly speakers Blogs programs/autism-center/ Autism Outreach Project Lending Library Website Kids' Potential, Our Purpose

Washington Resources UW Autism Center UW Research in Early Autism Detection and Intervention UW Haring Center Kids' Potential, Our Purpose

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

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

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

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