Research in Early Autism Detection and Intervention
As the COVID pandemic extends into 2021, families may still have concerns about attending healthcare visits in-person. Autism Speaks’ Autism Treatment Network/AIR-P has shared a free toolkit designed to promote successful tele-health visits for autistic people of all ages. This kit was created with the help of the Family Advisory Council and it has tips and tricks for families and providers alike! Follow this link to download!
Say “Hi” to Sabine, who has been integral to the development of our new RISE study. Learn a bit about her and her motivation to reduce disparities in early autism care below.
What motivated you to join the READi Lab?
I knew I wanted to pursue a career in clinical psychology after graduating college, and I wanted more research experience to be better prepared for graduate school. The READi Lab caught my attention because of how committed they were to addressing access disparities, and I wanted to be a part of a lab that cared deeply about its participants!
What is your role in the lab?
I’m the research coordinator for our UW site for the new RISE study, a study focusing on improving access to quality care within Part C Early Intervention services throughout the United States. I have loved being part of a team of researchers across the country, and I’ve learned so much from watching a study get built from the ground up. Back when we were doing in-person assessments, I was the primary assessor for the Pathways study, and I miss working with our adorable participants.
You’ve been learning Spanish to connect with more of our participants. What’s that been like?
I was very proud of my (now lost) 200-day Duolingo streak, but I’m slowly working my way back up! Eventually I would like to take a real class, because I think providing multi-lingual care is key to making sure as many families as possible feel included in both research and clinical services.
You’ve hiked to the top of mountains and volcanoes, and you frequently rock climb. How cool! What has been your boldest adventure?
This is the best part about living in Washington! My favorite adventure here so far has been climbing in the Washington Pass area in the North Cascades. On my first trip there, I was so excited to climb that I ended up at the entirely wrong rock, halfway up the wrong climb. It could have ended badly, but a friendly stranger helped me out. I’ll never make that mistake in that area again!
Where in the world would your ideal adventure take you?
I would love to go mountaineering in Nepal. I studied abroad there during undergrad, and I met so many friendly people who I would like to visit. I’ll never do Everest, but there are plenty of other amazing mountains there!
Two truths and a lie! (Scroll down to see Sabine’s fib!)
I have not been rained on by leeches (thankfully!!!!)
A new READi Lab study was published in a special issue of the journal Pediatrics, which highlighted current autism research. In this article, we describe parent perspectives about communicating early autism concerns to care providers. We held three 2-hour focus groups during which 23 parents shared their experiences. They described what went well in their conversations with providers and also brought light to areas of concern. Interested to see if your experiences align with other Washingtonian families? Follow this link. Interested in learning about other autism research published in this issue? Follow this link to view the other 16 articles that were included.
It’s no secret that life has become quite complicated. Being kind is one of the easiest ways to help move onto bigger and better things in 2021. Join Elmo in playing Kindness Bingo, offered by Elmo’s World from PBS Kids and Sesame Street. Each square holds a kind act that you can do for someone else, such as writing a thank you note or making a phone call. How quickly can you and your family reach Bingo?
For one of our new grants, we are developing a screening tool to identify toddlers who may have delays in social communication. The tool is called “My Toddler’s Social Communication” and will illustrate pictures of toddlers engaged in 12 common social communication behaviors. We are looking for photos of toddlers from diverse backgrounds, so that all families will be able to see their child in the images and recognize that this measure was created with their family in mind. We are interested in photos of children between 16 and 30 months of age.
The behaviors we hope to represent with photos are:
If you have photos of your own child that you are willing to share, please send them to readilab@uw.edu. We will treat them with love.
The Autism Science Foundation (ASF) highlighted the major themes in autism research last year in an article titled, “2020: A Year Like No Other”. In this article, Dr. Alycia Halladay, Chief Science Officer at ASF, breaks down how the COVID-19 pandemic and other major events have affected autistic people and their families. The latest research is also summarized from major themes such as Earlier Detection & Diagnosis, Sex & Gender Differences, and New Interventions & Telehealth. What areas of autism care are you most eager to build upon in 2021?
Get to know Trent, one of READi lab’s diligent and hard-working graduate students. Learn a bit about his ongoing efforts to enhance early intervention provider trainings and to improve the quality of services for toddlers with or at risk for Autism Spectrum Disorder (ASD) below!
Prior to graduate school, I worked in a different lab at the UW focused on ASD research. During that time, Dr. Stone gave a presentation for our lab on the very cool and impactful research being conducted by the READi Lab. When I decided to apply to child clinical psychology doctoral programs, I knew that the READi Lab would be an awesome place for me to continue collaborating on important ASD research that is focused on directly improving the lives of children with ASD and their families.
My dissertation is looking at changes in family satisfaction with the ASD-related health care they receive and other indicators of family wellbeing following the introduction of Screen-Refer-Treat (SRT) into local Washington State counties. SRT was specifically designed to train primary care providers and early interventionists in evidence-based tools for early ASD detection and intervention. The hope is that such trainings increase community capacity for ASD-specific services and improve the quality of care received by families of young children who are showing early signs of ASD.
Well, I’m not sure I will ever grow up. In part, this is because I am a child at heart despite all my gray hair, but I also try to view growing as an action and not an achievement. My hope is that I am growing a little every day in terms of becoming a better partner, friend, researcher, clinician, and advocate for others.
Yes, I have a 1 year-old mini Australian Shepherd named Harper who is super fun and very smart.
Yeah, my wife and I have been sailing (racing and cruising) for about 5 years, but not as much this past year because of the pandemic. We have been fortunate to sail all around the Puget Sound region including many trips to the San Juan Islands. It’s hard to pick a favorite trip, but the biggest trip we did was from Vancouver BC to Seattle via the Gulf Islands. It’s pretty magical up there.
Trent has not (yet) had a close encounter with orca whales while kayaking.
Parent Map, an online magazine tailored to families in the PNW, shared a list of kid-friendly celebrations to help ring in 2021. Virtual celebrations hosted the morning and afternoon of New Year’s Eve are available to accommodate sleep routines. Events include activities such as creating family time capsules, drinking celebratory mocktails, and crafting. There is even a mini-concert and countdown to Noon Year’s Eve with children’s singer Nancy Stewart! For night-owls, there’s also information about New Year’s at the Needle, a digital effect show that will begin at 11:35 pm. How will your family celebrate?
The 2020 Holiday Season is here! Regardless of how families celebrate, some children with autism may struggle with changes in their routine associated with family traditions. Autism Speaks shared a brief article that shares a few holiday tips and tricks as reported by other autism families. Taking a break from school, celebrating virtually, giving and opening gifts, and making new traditions are explored. Links to resource guides and autism-friendly virtual events are also shared. Join in the holiday fun here.
Receiving an autism diagnosis is a critical first step towards developing an active care plan that best supports affected individuals. This is a sensitive time for families, who often have questions about what such a diagnosis means for their loved one. Autism Speaks will be hosting a free, three-part series for families and care providers to help answer questions and to navigate next steps. Topics vary across the three sessions, but all include the personal experiences of parents, self-advocates, topic experts, and other members of the autism community.
Topic information with dates and times are below. You can learn more or register for the event(s) here.
Part I: Navigating A New Autism Diagnosis: Where Do I Begin?
Wednesday, December 9, 2020
3:00 PM – 4:00 PM PST
Wednesday, January 6, 2021
3:00 PM – 4:00 PM PST
Wednesday, January 13, 2021
3:00 PM – 4:00 PM PST
Photo credit: Autism Speaks
Meet Taylor (and her speckled shadow, Milo!), READi Lab’s newest full-time Research Study Assistant! While she’s still quite new to Seattle, she has personal experiences with Autism Spectrum Disorder (ASD) that motivated her to change career paths. Her goal of reducing barriers to evidence-based ASD services means she fits right in with our team! Learn a bit about her below.
You’re pretty new to the READi lab team. What attracted you to the READi lab?
It has been demonstrated that early identification and intervention helps people with autism reach their best outcomes, but these systems also face unique challenges and demands. Our READi lab team uses multiple approaches to answer big questions about early autism care in a manner that also provides resources and supports for study participants and local communities. The location between two gorgeous mountain ranges definitely helped, too!
What do you want to be when you grow-up?
At one point, I wanted to be a wildlife rehabilitator – that’s what I originally pursued during my undergrad! Today, my aspirations are to combine my desire to ensure all people with autism have access to evidence-based diagnostic and therapeutic services, my biological roots, and my budding interest in machine learning. Now, what title best suits that… I’m not entirely sure.
What’s your favorite R Color Brewer palette?
I usually favor Spectral or Set 2.
What’s your favorite dinosaur?
Spinosaurus Rex! Spinosaurus was bigger than both T. Rex and Giganotosaurus, making it the largest carnivorous dinosaur who ever lived. Some paleontologists argue it was the first dinosaur to swim, too!
What types of animals did you most enjoy working with while in wildlife rehab?
My favorites would have to be raptors. I had the unique opportunity to work with owls, hawks, vultures, falcons, and even a golden eagle (who was not native to Wisconsin, unlike me).
Two truths and a lie! (Scroll down to see Taylor’s fib!)
I was fortunate to have the opportunity to build upon Jak Panskepp’s work on the importance of play and instrumental conditioning concepts. So, I tickled rats… for science!
Restricted and repetitive behaviors are a core feature of autism. But what exactly are they? Do all repetitive behaviors require management? Spectrum recently shared a brief video that explores the different types of repetitive behaviors and starts to unearth their significance. Keep up with the latest here.
Photo credit: Spectrum News
Published by Spectrum, the leading site for autism research news.
The Autism Science Foundation (ASF) offers tailored resources for families and service providers with the goal of reducing the unique stressors and novel challenges caused by the COVID pandemic. For families, teaching tools, behavior management approaches, and health tips are available. For service providers, training modules and telehealth topics are covered. Free webinars on topics such as mindfulness, self-care, and resiliency during these challenging times are also available, regardless of your role. Access these resources here.
Get to know one of our hardworking Research Study Assistants, John! John has played a pivotal role in our Screen-Refer-Treat study, among others. Learn a bit about him and his motivation to advance the study of autism below.
Questions:
Tell me what projects you work on in the lab.
We all do a little bit of everything here at the lab, but my primary focus is managing databases for our studies. That includes programming surveys, validating and correcting data, and running statistical analysis. I also prepare a lot of training materials and research new technologies we can use to make our studies run more smoothly.
What made you want to work in the READi lab?
I have always been interested in how our brains develop from childhood. I come from a big family with a lot of siblings, so I had a lot of firsthand examples of developing brains when I was a child. I also had the opportunity to lead a local trading card gaming community for several years when I worked at Pokémon. I got to know many children, youth, and adults with ASD in that community. When I returned to school to study developmental psychology, I was particularly interested in ASD, so READi Lab seemed a perfect fit!
What is the state of your current relationship with spreadsheets?
Spreadsheets are my friends, usually…
So, you’re from New York City, huh? What was it like growing up in the Big Apple?
New York lives up to a lot of its stereotypes: it’s loud, busy, direct, and wonderfully diverse. I found that being raised around people coming from many cultures and perspectives helped me to develop my own observational and critical thinking skills while also teaching me to be open-minded. Also, you can get amazing pizza pretty much anywhere!
What would your Pokémon team name be and what Pokémon would you be most proud to have as your champions?
Ooh, that’s a tough one! There are so many to choose from! How about I make a psychology research-themed team? I will call it the “Psychic Storm,” and it will consist of:
Please share two truths and a lie about yourself. (Scroll down to discover John’s fib!)
I have performed onstage with wrestling legend Hulk Hogan.
I have six toes on my left foot.
I can speak Greek.
I do not have six toes on my left foot.
This Saturday is the spookiest day of the year, and some children with autism may need additional support to connect with and to celebrate Halloween. Autism Speaks previously partnered with our READi lab team to create an “All About Halloween” personalized story template. While this template does not address new challenges associated with COVID, it does focus on traditional Halloween celebrations — like carving pumpkins and wearing costumes – as well as alternative celebrations. Knowing that creepy costumes and strange situations are just pretend is half the fun! Access this template and tips on how to use it here. Happy Halloween and be sure to keep an eye out for the full moon, boys and ghouls.
Photo credit: Wikimedia
The COVID pandemic has affected just about every aspect of life, and our traditional Halloween celebrations will be no exception. Seattle Children’s published an article to help families with and without autism participate in the spookiest time of year safely. Tips for passing out candy, incorporating a mask into children’s costumes, socially distancing, and developing a safety back-up plan are discussed at length. Unsure if trick-or-treating or visiting a pumpkin patch is best for your family? Alternative celebrations are also discussed. Access the article here, and happy haunting.
Photo credit: Adobe Stock
Join Julia, Abbey Cadabby, and the rest of your friends on Sesame Street! Their “See Amazing in All Children” program not only aims to promote autism awareness and acceptance, but also to hear the voices of siblings of autistic children. Learn about the significance of spending time together as a family and time that is one-on-one with each child. Tips for talking to your children about their siblings with autism are also available. Watch “A Sibling Story” together as a family and download the free “Sibling Experience” packet for family games and activities. Follow this link to join in the fun!
How clinicians and early interventionists have talked about autism has changed quite dramatically over time. But how exactly? What does this mean for individuals on the spectrum? Our friends at Spectrum News created a brief video to explore autism’s diagnostic evolution and its implications for affected people and their families. Watch this and other informative videos here!
Photo credit: Spectrum News
Published by Spectrum, the leading site for autism research news.
Authors: Emma Bryce, Mengxin Li