Supporting Parents of Supporting Parents of Children with AutismChildren with Autism
Debi Donelan, MSSA & Carolyn Taylor, MS
Infant and Early Childhood Conference
May 7, 2015
Early Support Early Support forfor
Infants and Infants and ToddlersToddlers
Autism Outreach Project
Kids' Potential, Our Purpose
https://www.nwesd.org/autism
Early Support for Infants and Toddlers (ESIT)
MissionThe 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”
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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
Concerns or “Red Flags”
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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
Concerns or “Red Flags”
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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
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
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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
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Dealing with The Diagnosis5 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
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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 DiagnosisThe 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-kitRequest 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
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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
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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
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Washington Resources
WithinReachParentHelp123.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/
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Washington Resources
Seattle Children’s Autism CenterMonthly speakers
Blogs
http://www.seattlechildrens.org/clinics-programs/autism-center/
Autism Outreach ProjectLending Library
Website
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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/
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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.
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Small Group Activity
Scenario 1You 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.
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Small Group Activity
Scenario 2You 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.
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References
Autism Outreach Project
Autism Speaks
Seattle Children’s Autism Center
Kids' Potential, Our Purpose