The Autism Blog

One of the purposes of Autism 200 is to present many of the different perspectives that exist across the wide autism spectrum. 

We at Seattle Children’s are strong advocates for empowerment and celebrate the many individual and collective voices that have been raised within the autism community.  Listening to autistic self-advocates has informed our care as providers and changed how we communicate to families.  We always strive to presume competence in all people with autism and the advent of assistive technology has given many individuals the capability of sharing their voices.  This has been a tremendous advance and benefit for our community.

There is still a population within the autism community whose voice is rarely heard.  Individuals with severe intellectual, communication and behavioral deficits who have not responded well to the therapeutic interventions available and the families who care and advocate for them.  Many of these families have spent a lifetime attempting to teach communication, adaptive behavior and self-advocacy skills.  Who speaks for these individuals better than those families who are forced to advocate for them?

The Arc of King County recently announced a presentation entitled Unmasking the Rhetoric of Severe Autism.  The date of this presentation is scheduled for February 18 which coincides with the Autism 200 class entitled A Voice for Severe Autism.  We are pleased to promote both of these presentations which will provide valuable information for families.

These presentations provide two different perspectives that deserve to be heard. One is that of individuals and their families with high support needs who have responded to therapeutic interventions and benefit from assistive technology.  They have found their voice and can advocate for themselves in many ways.  We celebrate the accomplishments of these individuals and want to hear their stories.  The second is from the perspective of those who love and care for those who have not responded to interventions and advances in technology, who speak and advocate on their loved one’s behalf.   

It is our hope that these perspectives can co-exist as everyone strives to understand the perspectives of all within the autism community.  Information related to both presentations can be found below:

Autism 202: A Voice for Severe Autism

Seattle Children’s Autism Center

Thursday, February 18, 2021

7:00 to 8:30 p.m.

Registration not required

View via Facebook Live at Seattle Children’s Facebook page.

The event will start at 7:00 p.m.

Following the presentation, it can be viewed on Seattle Children’s Facebook indefinitely and will be added to Seattle Children’s Autism 200 YouTube channel within two weeks of the lecture date.

Unmasking the Rhetoric of Severe Autism

The Arc of King County

Thursday, February 18, 2021

7:00 to 8:30 p.m.

Register to receive a link:

https://forms.gle/wvLuwzVsRFWLjAXT6    

Join us for Autism 202: A Voice for Severe Autism, a virtual presentation by Jill Escher, President of National Council of Severe Autism, and Amy Lutz, Vice President of National Council of Severe Autism.

The presentation will cover:

• What is meant by severe autism
• The dramatically growing prevalence of severe autism, and implications for policy
• Challenges: therapeutics, appropriate education, adult programs, housing, crisis support
• The importance of advocacy and standing up for difficult realities

Many millions of people have traits associated with autism. This presentation will focus on important issues and concerns impacting the growing population of children and adults affected by severe forms of autism or related disorders. This population includes those who, by virtue of any combination of cognitive and functional impairments, require continuous or near-continuous, lifelong services, supports, and supervision. Individuals in this category are often nonverbal or have limited use of language, have intellectual impairment, and, in a subset, exhibit challenging behaviors that interfere with safety and well-being.

Due to the reasonable caution surrounding reducing the spread of COVID-19, this month’s Autism 200 lecture will be streamed live through Facebook Live on Seattle Children’s, Seattle Children’s Autism Center and Seattle Children’s Alyssa Burnett Adult Life Center’s Facebook pages. There will be no in-person attendance. Thanks to everyone for your understanding. Further announcements regarding future Autism 200 lectures will be forthcoming.

If you are unable to watch the stream live, a video of the presentation will be available immediately after the lecture on Seattle Children’s, Seattle Children’s Autism Center and Seattle Children’s Alyssa Burnett Adult Life Center’s Facebook pages. It will also be available in the future on Seattle Children’s Autism 200 Series YouTube playlist.

Learn more about Seattle Children’s Autism 200 Series Lectures.

Date: Thursday Feb 18, 2021

Time: 7:00 – 8:30pm Pacific Time

Presenter bios:

Jill Escher is an autism research philanthropist (Escher Fund for Autism), real estate investor who provides low-income housing for adults with developmental disabilities, former lawyer, and mother of two children with nonverbal autism. In her role as an advocate, she serves as president of National Council on Severe Autism, and immediate past president of Autism Society San Francisco Bay Area. In her role as a promoter of innovative research she was recently elected to serve on the governing council of the Environmental Mutagenesis and Genomics Society. Escher is a graduate of Stanford University and the UC Berkeley School of Law.  Most importantly she is the mother of two children, a 22 year old man and a 14 year-old girl, with nonverbal forms of autism.

Amy S.F. Lutz is an advocate and writer based in Pennsylvania. Amy’s work has been featured in The Atlantic, Slate and Babble, among others, and she writes about autism at Inspectrum for Psychology Today. Her essay collection We Walk: Life with Severe Autism was published in October 2020, and her first book, Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children came out in 2014. She is currently pursuing a PhD in History and Sociology of Science at University of Pennsylvania. She is the mother of five children, one of whom has a severe form of autism.

Autism 201: The State of Autism in 2021 – Advocating for Supports and Services in WA State

A call to action!

2020 was a tough year: Kids lost access to vital therapies; online learning mostly left behind students with disabilities; and the state floated cuts to long-term supports that would affect job coaching, residential support, respite and more for youths and adults with disabilities and their families. Individuals with autism and intellectual and developmental disabilities were left isolated, frustrated, and cut off from meaningful life activities. So what’s ahead for 2021 and the state legislature? You can make a difference! How to get involved to influence what happens next.

Panelists:

Stacy Dym, The Arc of Washington State
Jeremy Norden-Paul, The Washington State Developmental Disabilities Council (DDC)
Adana Protonentis, Sr. consultant Kindred Leaders, mom of autistic son, member of DDC
Ramona Hattendorf, Advocacy Director, The Arc of King County

This month’s Autism 200 lecture will be available through Facebook Live on Seattle Children’s and Seattle Children’s Autism Center’s Facebook pages.             

                      
Date: January 21, 2021
Time: 7 to 8:30 p.m. Pacific time

Time will be reserved for audience questions and discussion at the end of the lecture. Questions can be submitted through the comments on the Facebook Live.

Due to the reasonable caution surrounding reducing the spread of COVID-19, this month’s Autism 200 lecture will be only available online through Facebook Live. Please note that there will be no in-person attendance and anyone coming to the hospital will not be permitted entrance to this class. Thanks to everyone for your understanding. Further announcements regarding future Autism 200 lectures will be forthcoming.

The full Autism 200 Series will be released in the coming weeks. Learn more about and view Seattle Children’s Autism 200 Series: Autism 200 Series

For some families, the end of a typical year brings celebrations, gatherings, and beloved traditions. But, like many other things during 2020, the holiday season will be very different for many people this year.

Below, we’ve collected a set of resources that may help – you’ll find a social story to explain how holidays will be different Read full post »

Welcome to our series on research. We continue with information about the WONDER study.

Seattle Children’s researchers want to better understand social brain development in infants during the first three years of life. Drs. Fred Shic and Sara Jane Webb, Center for Child Health, Behavior and Development, are the coinvestigators of this study.

Who can join the study? Families with an infant under the age of 14 months with an older biological sibling (whole or half) with Autism Spectrum Disorder, and who use English as a primary language.

What will the study involve? Over the course of 3 years, there will be 4-5 in-person study visits at our West 8th research lab in Seattle. During the visits, researchers will record brain activity and eye movement while showing your child pictures and videos and engage your child in play-based activities to monitor their development. Feedback about your child’s performance on developmental assessments will be provided. One caregiver will be asked to complete questionnaires around the same time as the study visits, and 3-4 phone interviews over the course of the study.

How long will it take? Study visits will vary in length from 1- 2 ½ hours. Phone interviews and questionnaires will last approximately 1-2 hours. Appointments will be scheduled at a time that works well for your family.

What is the compensation? Families may receive up to $410-$425 by the end of the study for completing all the study activities. Children will receive a small toy at each visit. Parking validation is provided.

Interested of have questions? Contact the study team at wonder@seattlechildrens.org, (206) 884-WNDR or through the Wonder Contact form here.