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”

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

https://www.autismspeaks.org/what-autism/learn-signs

Concerns or “Red Flags”

Kids' Potential, Our Purpose

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

Kids' Potential, Our Purpose

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

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

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

Kids' Potential, Our Purpose

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

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.

Kids' Potential, Our Purpose

References

Autism Outreach Project

Autism Speaks

Seattle Children’s Autism Center

Kids' Potential, Our Purpose