Author: The Autism Blog

Two Presentations Focus On Perspectives Related To Severe Autism

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    

Autism 202: A Voice for Severe Autism

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 2014She 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

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

Holiday Resources for Your Family

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 »

Research Opportunity – WONDER Study

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 [email protected], (206) 884-WNDR or through the Wonder Contact form here.

SPARK – Register Now for Autism Research

Seattle Children’s Autism Center is partnered with the Simons Foundation Autism Research Initiative (SFARI) to create the nation’s largest online autism study. We want to speed up research and advance our understanding of autism to help improve lives.

  • Individuals with autism (including adults), biological parents and siblings are encouraged to participate.
    Registration is easy and can be done entirely online.
  • Participants provide a saliva sample using a collection kit shipped to their home, complete surveys, and may be invited to participate in other studies that are relevant to them.
  • Participants will receive a gift card code, valued at up to $50, once they’ve completed registration and returned samples.
  • Thank you to Seattle Children’s Autism Center for your support of SPARK. 3738 patients at SCAC are participants in SPARK. 23 providers have helped refer participants to SPARK.

www.SPARKforAutism.org/UW

Autism 210: Multicultural Perspectives on Autism

Please join us for Autism 210: A Panel Discussion: Multicultural Perspectives on Autism Spectrum Disorder on November 19, 2020

Moderator: Jim Mancini, MS, CCC-SLP, Seattle Children’s Autism Center Read full post »

Wizards of the Coast Making Magic

The Wizards of the Coast are making magic for Seattle Children’s Autism Center plus the Extra Life Guild.

https://magic.wizards.com/

It’s that time of year again! Wizards of the Coast is proud to be raising funds for Extra Life, benefiting Seattle Children’s Hospital and we could not be more thrilled! Read full post »

The Festival of Trees Gala

Hello Seattle Children’s Autism Center Community! It’s hard to believe, but we are nearing the time of our annual fundraising auction once again.

The Festival of Trees Gala (https://www.seattlefestivaloftrees.com/) is a lovely event that typically takes place in person at the Fairmount Olympic Hotel in downtown Seattle every November. As with most events in 2020, the gala will be virtual this year- and while very different from any other year, the silver lining is that there is no limit to how many people can attend and there is no cost to register! This event has helped raise nearly $200,000 annually for our center in years past and we hope in this current climate we can continue to meet our philanthropy goals! This event also typically raises an additional $200,000 annually to support uncompensated care at Seattle Children’s.

The Festival of Trees Guild, who prepares all year for this event, has not slowed down one bit in 2020! We are so grateful for their hard work and dedication to Seattle Children’s Autism Center and uncompensated care.

Should you wish to join us online, here are a few more key details:

Register Here
https://seattlefestivaloftrees.ejoinme.org/mainpage

Dinner + Wine
To keep the festive spirit of the event alive, the Guild has partnered with DeLille Winery to offer a take-out dinner option which includes a bottle of wine. A portion of the dinner price will support the Autism Center and our uncompensated care fund for the hospital. Dinner can be ordered on the gala website or at this link: https://www.delillecellars.com/Wine-Shop/DeLille-Date-Night/FestivalofTrees

Keynote Speaker
An extra special feature for this year will be one of our own patients from the Autism Center as the keynote speaker. Join us to hear from one of our teenage patients, who will be sharing their journey with autism and how the center and our providers have helped throughout. It will be very special for this courageous young advocate to have extra support and encouragement from our Autism Center community members like you!

Spread the Word!
There will be both a silent and live auction, and of course other opportunities to contribute, with half of all proceeds coming to the Autism Center. This is such a unique opportunity to share a little of the magic of the Autism Center and our wonderful supporters from the Festival of Trees Guild with your friends and loved ones. Feel free to circulate the link and encourage anyone who wants to attend. It is FREE to register, and a simple way to stay connected to the community who supports our work.

Many thanks in advance for attending, promoting or supporting this event. We could not do it without the support of our entire community!

Autism 101 Class – October 22, 2020

Please join us for Autism 101, a free 90-minute lecture intended for parents and families of children recently diagnosed with an autism spectrum disorder (ASD), their friends and professionals. Presenters David Camenisch, MD, and Jim Mancini, MS, CCC-SLP Read full post »