The Autism Blog

Hello, my name is Ben Moore. I’m an autistic adult, and I’m writing to you, the reader, to explain what the process of going through a worldwide pandemic (and getting the COVID-19 vaccine) have been like from an autistic point of view. Keep in mind that my view and experiences living through these turbulent times will not match the experience of every other autistic person out there.

At the start of the COVID pandemic last March, my life wasn’t at its most serene. I was hospitalized for non-COVID related issues when the first cases started appearing, so I was kind of frightened that I might catch it, and that it would only compound my health problems in the moment. Thankfully, that did not happen, even though patients with COVID were being quarantined on the floor directly above me.

Afterwards, my experience in the pandemic has been much like everyone else’s – trying to maintain social contact in a socially-distanced world, and re-thinking how we go about our lives in the new era of online learning and meetings using applications such as Zoom and Microsoft teams.

When I first heard via the news that Pfizer and Moderna were developing mRNA-based vaccines to the coronavirus, I was excited and hopeful. Finally, I could look forward to life “returning to normal” once herd immunity were reached. I felt this optimistic leading into the morning of my appointment for receiving the first shot.

With the prick and jab of the small needle, my first dose of the COVID-19 vaccine was a success! I went home, and after a few hours, and persisting for a couple of days, were a minorly sore left arm (the arm I got poked in), and a tad bit of general fatigue. That was it – nothing too bad! Compared to my first shot, there were no observable aftereffects post-second shot.

Now that I’m vaccinated fully, and the state’s mask mandate has been rescinded, I’m looking forward to meeting up with all of my friends at the ABC – the Alyssa Burnett Adult Life Center – once again, so that we can continue to laugh and grow together.

One last thing I’d like to say is, if you’re autistic – and even if you aren’t – getting the COVID-19 coronavirus vaccine isn’t scary, and it doesn’t hurt. Please, if you haven’t gotten in your doses, please do! If not for yourself, then for everybody else who, for whatever reason out of medical necessity, cannot.

May we all soon embrace each other with open arms once again!

               As we come out of a year of COVID-19 and the challenges that came with it, I reflect on some of my toughest, and brightest, moments. Among the top are the moments I’ve shared with my patients. I’ve seen them endure the devastating impact of isolation but have also heard the excitement and relief about their world’s opening back up.

In my clinic I see hundreds of individuals across the autism spectrum, of all ages. I have seen routines broken and opportunities for connection lacking. I’ve heard engagement with peers dramatically drop and have seen first-hand the regression this has caused.

During visits, my patients come to me sharing concerns about the vaccine and misinformation that they have heard. As a health care provider, I know the best way to boost quality of life is through returning to the community- through learning opportunities, engaging activities, and by surrounded ourselves with support systems.

It’s time for us to separate myths from facts. As a trusted provider serving the autism community for 25 years and an advocate for this population the entirety of my career, here are my biggest takeaways:

1- Review the data and facts; the vaccine is safe and trusted

2- The vaccine is needed for this population to return safely to society

3- The vaccine is vital to reestablish routine and connection, which ultimately contribute to quality of life

John, one of my patients, recently shared the following: ‘I continue to wear a mask to this day even though I am fully vaccinated and continue to follow public health guidelines. And I feel better since being vaccinated going out in public and my anxiety is better.’

Returning to group settings can be nerve-racking. In John’s case and in many others, the vaccine has benefits beyond the physical. Not only will it protect your body from illness, it can also improve mental health anxieties about returning to settings we were conditioned last year to avoid.

If you have questions or concerns, please talk to your doctor. You have my vote of confidence in the COVID-19 vaccine.

Dr. Gary Stobbe, MD Medical Director, Adult Autism Clinic, UW Medicine Director, Adults and Elders Program, University Center for Excellence in Developmental Disabilities, CHDD Director, Adult Transition Services, Seattle Children’s Autism Center

In partnership with the National Center on Disability in Public Health through University of Washington LEND, our goal is to promote vaccine confidence in the developmental disabilities population. To support our efforts in disseminating this information, please pass along this blog and accompanying materials. If you’re interested in disseminating broadly, please email Valerie Unger at Valerie.unger@seattlechildrens.org to provide the organization name and estimated number of people you will reach. Providing the numbers and regions this blog post reaches will help us in our ultimate goal to vaccinate all eligible people with disabilities.

Please join us for Autism 205: Selective Eating in Children with Autism 

Seattle Children’s Pediatric Feeding Program Clinical Dieticians Kim Nowak Cooperman, Lisa Holman and Lauren Mozer will provide an overview of the eating issues commonly seen in children with autism, with a focus on food selectivity (picky eating). They will also discuss nutrition risks commonly seen in selective eaters, the ways in which nutrition can play a role in working with other members of your child’s care team and first steps parents or caregivers can take in supporting their child nutritionally. Contributions to this presentation were made from Danielle Dolezal, PhD, BcBA who runs the Pediatric Feeding Program at Seattle Children’s Autism Center.

Date: May 20, 2021

Time: 7-8:30 pm PT

Registration is not required

Watch live on Seattle Children’s Facebook page

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

Presenters:

Kim Nowak-Cooperman, MS, RD, CD

Lisa Holman, MS, RD, CD

Lauren Mozer, MPH, RD, CD

CARR Study (COVID-Associated Risk and Resilience)

Researchers at Seattle Children’s want to learn about the impact of COVID-19 on the emotional health of children and teens. This research study is for kids and parents.

Research is always voluntary!

This study might be a good fit for you if your child or teen is between 8 and 14 years old, and has autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), anxiety, or none of these.

If you decide to take part in the research study, you and your child would fill out online surveys every 6 months for 2 years. Surveys focus on children’s feelings and behaviors, and on the ways COVID-19 might affect them.

Families who take part can choose to enter drawings for gift cards to thank them for their time.

 To take part in the CARR research study or for more information, please contact our study team at CARRstudy@seattlechildrens.org or by phone at 206-884-8256.

Please note: If you choose to comment or share this post, that may be visible to other people. Anything you might post is also subject to the policies governing this site and is outside the control of our research team.

CARR Study Flyer  CARR Study – Recruitment flyer

Please join us for Autism 204: Supporting the Autism Community in Central and Eastern Washington

April 15, 2021 7-8:30 pm

Welcome to the 1^st ever Autism 200 class for individuals and families living in central and eastern Washington; presented by Central/Eastern Washington providers, professionals, parents and advocates.  

This virtual panel presentation will provide information about the unique issues and support available for the autism community in central and eastern Washington.  Topics that will be discussed include getting an evaluation and diagnosis, supports for families following a diagnosis, advocacy and communication with the public schools, available therapies including Applied Behavioral Analysis (ABA), autistic advocate and parent perspectives, and information related to resources. 

Date: April 15, 2021

Time: 7-8:30 pm PT

Registration is not required

Watch live on Seattle Children’s Facebook page

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

Moderator: Tracie Hoppis, Children’s Village, Yakima– State Coordinator for Parent to Parent Program and lead for Yakima County Children with Special Health Care Needs Program

Speakers and Topics:

Jill Bross, MD, FAAP Parkview Medical Group, Grant County Getting an Evaluation and Diagnosis – what do you need to know

Melissa Brooks, RN, Parent to Parent Coordinator, the Arc of Tri-Cities Parent and Family Perspective

Tracie Hoppis, Washington State Parent to Parent Network Coordinator, Supervisor for Yakima County Children with Special Health Care Needs Program and Yakima County Parent to Parent, Parent-  Children’s Village, Yakima Where/how to get family support following the diagnosis 

Maria Pulido, Community Health Worker, Parent to Parent and Children with Special Health Care Needs Program- Children’s Village, Yakima  Barriers/considerations for Hispanic families and tips for getting what you need 

Lori Garcia, MSW, Family Resources Coordinator and Children and Youth with Special Health Care Needs (CYSHCN) Program Coordinator, Children’s Village, Yakima Supports available from Early Supports for Infant and Toddlers (ESIT) Program and CYSHCN public health programs

Sharon Loudon, Autism Consultant, Educational Service District (ESD) 105, Yakima How schools can help- ESD 105 model and general services/supports you can ask for in any district

Dana Stevens, ABD, BCBA, LBA, Director, Training and Education and Chief Clinical Advisor Northwest Autism Center, Spokane What’s ABA therapy, what to do while waiting for it

John Lemus, UW LEND Program, Vice President – Spokane Chapter of People First of WA An Autistic perspective- what’s important for parents and providers to understand about the lived autistic experience and how to support autistic individuals

Here is a link to the slideshow: Autism 204 Slides