On Friday, READi Lab Assistant Director Lisa Ibañez presented a poster about our Screen-Refer-Treat study at the Zero To Three National Training Institute (NTI), which was held in Seattle this year. Zero To Three is a non-profit organization that focuses on supporting the health and development of infants, toddlers and their families. The NTI, which is Zero To Three’s comprehensive and multidisciplinary annual conference, covers research, best practices, and policy issues for early development with early educators, service providers, and researchers from around the country. Click here to see the poster for yourself!
Most of our knowledge about the prevalence of ASD in the U.S. comes from studies that are published by the Centers for Disease Control (CDC) every 4 years. These studies examine the rate of ASD diagnoses in a specific “slice” of the population: 8-year-olds living in 11 communities across the U.S. A new study, based on data collected by the CDC, provides information about how ASD diagnoses may change over time.
This study surveyed parents of 6- to 17-year-olds who reported in 2009-2010 that their child had “ever been diagnosed with” an ASD. The authors found that approximately 13% of children who had been diagnosed previously with ASD had “lost” their diagnosis by the time of the present study. The children who no longer had an ASD diagnosis had higher current levels of adaptive functioning and lower levels of ASD symptoms compared to those who retained the diagnosis. However, there were no early differences between the groups in the age of first concerns (about 2 ½ years), age of first service (about 4 ½ years), or age of initial diagnosis (about 5 ½ years). Parents reported several reasons for the changes in diagnosis: because “new information” became available (73.5%), because the initial diagnosis was made to help the child obtain services (24.2%), due to treatment or maturation (21%), or due to an initial misdiagnosis (15.5%). The vast majority of the children whose ASD diagnosis was removed (96%) had received a “replacement” diagnosis, the most common being ADHD.
The authors conclude that these changes in ASD diagnoses over time have implications for the current methods used to assess the prevalence of ASD, the characteristics of ASD, and the adequacy of services.
This Sunday, December 6th, four shopping malls across WA State will host sensory-friendly Santas for children with ASD and other special needs. The events are free, but reservations are required — so save your spot now for a photo op with Santa!
Locations in WA are: Northgate Mall (Seattle), Columbia Center Mall (Kennewick), Tacoma Mall, and Wenatchee Valley Mall. Click HERE to register for Santa visits at Northgate, Columbia Center, or Tacoma Malls, or HERE to register for Wenatchee Valley Mall.
Guess which lab member is in the photo below?
On November 29, 1975, the Education for All Handicapped Children Act, now known as the Individuals with Disabilities Education Act (IDEA), was signed into Public Law. Forty years later, the U.S. Department of Education celebrates the progress this landmark civil rights measure has made for ensuring that all children with disabilities have equal opportunities.
In adopting this measure, Congress opened public school doors to millions of children with disabilities, providing special education to 6.9 million students and early intervention services to over 340,000 infants and toddlers with disabilities and their families. This Act guarantees access to a free, appropriate, public education (FAPE) for every child with a disability, with later amendments leading to increased emphasis on access to the general education curriculum and provision of services for young children from birth to five.
As part of the celebration, the U.S. Department of Education asked to hear stories from children and youth with disabilities, which they have curated into a power point collection available for viewing and download on the IDEA 40 website.
In a recent article published in The Atlantic, Rose Eveleth raises important questions about the utility of referring to autism as a “spectrum.” She details the questions that many relatives of individuals with autism are often asked: “Is she high functioning?”, “Where on the spectrum is he?” Eveleth considers the fact that currently, there are no scientifically based “markers” along the spectrum that can be useful in this discussion, and referring to “functioning level” can provide further challenges. The diagnosis of autism has evolved a great deal over time, and continues to do so as genetic, behavioral, and neurological research progresses. Eveleth suggests that, as research evolves, we may have more meaningful markers of what autism looks like in different people, across the lifespan. This article raises significant questions about the ways in which autism is currently defined and the need for further specificity. Click here to read the article in its entirety.
Open Doors for Multicultural Families is offering another free parent workshop on “Anti-Bullying Awareness & Prevention for Students with Disabilities”, Wednesday, December 9th from 6-8 PM at the Federal Way School District’s Norman Center. Guest Speaker Danielle Eidenberg-Noppe, an Education Ombudsmen with the Office of Education will provide information about what you should do if you find out your child has been the target of bullying, how to talk about bullying with your child, and what you can do to make sure your child is safe from bullying. Click here for more information or to register.
Last week Wendy spent 2 days at MAMC conducting a training workshop with her Tennessee buddies from Vanderbilt University and Blanchfield Army Community Hospital. The STAT-MD model was conceptualized by Dr. Quentin Humberd, a developmental behavioral pediatrician (DBP), at Fort Campbell, and was developed in collaboration with Wendy and her colleague Dr. Zachary Warren at Vanderbilt. The STAT-MD model was developed with the goal of facilitating specialized services for young children suspected of having ASD, and incorporates training on the STAT along with information about best practices and diagnostic coding for DBPs. Pictured below, alongside of Wendy, are Drs. Flake and Miller, who are DBPs who attended the training.
READi Lab director Wendy Stone was featured in a UW Daily article about Sesame Street’s newest character, Julia. As you probably know, Julia is Sesame Street’s first character with autism, and part of a larger initiative designed to promote awareness, understanding, and acceptance. Dr. Stone has been serving as an advisor to Sesame Street during the conceptualization and implementation of this initiative. Read The Daily article here!
The CDC’s “Learn the Signs. Act Early.” campaign has created an excellent resource for families who may have concerns about their child’s development. “It’s better to know” is in the format of a graphic novel, and describes Carlos and Consuelo’s journey as they begin to have concerns about their son’s development. Ultimately, they decide to talk with their doctor about Carlitos, who was then able to talk to them about developmental milestones expected for a child of his age. This resource is not only engaging, but also provides important information about developmental milestones for families. This pamphlet is available in English y en Español!
Open Doors for Multicultural Families is offering a free parent workshop on “Wills and Trusts” this Thursday, November 12th from 6-8pm at the Federal Way School District’s Norman Center. Guest speaker Christine Thompson, a special education lawyer, will provide information about special needs trusts, power of attorney, health care directives, and other relevant issues for ensuring the future of children with special needs. Click here for more information and to register.
Lizzy Karp, a third-year child clinical psychology graduate student and READi Lab member, was recently awarded a $10,000 grant from the Arc of Washington Trust Fund. Her project will examine parents’ stress and emotion regulation in relation to their implementation of the ImPACT intervention with infant siblings of children with ASD. ImPACT is a naturalistic developmental behavioral intervention (NDBI) designed for young children with ASD. This project is being conducted at UW and Vanderbilt University, with the goal of gaining a better understanding of parents’ experiences when participating in caregiver-delivered interventions for their young child. Congratulations to Lizzy for her important work, and many thanks to the Arc of Washington Trust Fund for their contribution to this project! For additional information about the ImPACT study click here.
This morning Wendy Stone was interviewed by KUOW’s Jeannie Yandell for a segment on “The Record” about her work with Sesame Street’s new “See Amazing in All Children” initiative. Among the questions discussed was why Sesame Street created Julia, a child with ASD, as a storybook character rather than a Muppet, and why they chose a female character instead of a male. And if you haven’t seen Sesame Street’s “See Amazing in All Children,” check them out HERE. There’s something for everyone!
The podcast is NOW AVAILABLE! To listen, click here.
An amazing, limited-time opportunity! Autism Speaks announced yesterday that they have 1,045 iPad Airs to give away to individuals with ASD living in low income families. The application deadline is Saturday, November 7, so you only have 4 days to apply. Applications need to be submitted by the person with ASD, a family member, or a service provider. Winners of the iPads will receive them by December 7.
Click here to apply!
Have you ever wondered what might be behind the fact that there are four times more boys than girls currently diagnosed with ASD? Spectrum News has put together an intriguing compilation of short articles that offer perspectives on why there is a gender gap in ASD.
Is ASD present as often in girls as in boys, but are girls’ symptoms subtler? Do girls more closely imitate social behaviors of others, such as putting on makeup and learning how to interact in groups in school? One author, mother of a son with autism, did not realize she herself had ASD until adulthood. She writes beautifully about how her own challenges made helping her son more difficult sometimes but that receiving a diagnosis helped her gain more insight on her past and also brought joy; she and her son reveled together in some of their intense interests.
Do our research and clinical methods fail to recognize ASD symptoms more commonly present in females? In the piece “Lost Girls,” one young woman with high-functioning ASD had seen 14 psychiatrists and been given 9 diagnoses before she was finally correctly diagnosed, no doubt causing her stress and harm in the 10 years it took for her to receive her ASD diagnosis.
Or, are females actually protected genetically from ASD relative to males? Do symptoms differ due to socialized gender or biological sex? Calls for ASD research that includes both sexes in both animal and human research have intensified, and it seems like major funding agencies are listening! Expect to see more research on sex and ASD soon.
An article in today’s issue of ‘CHDD Outlook’ highlights a READi Lab research project designed to attenuate the development and progression of symptoms in toddlers with ASD. In collaboration with Paul Yoder’s research group at Vanderbilt University, we are evaluating the effectiveness of ImPACT (Improving Parents as Communication Teachers) as a preventative intervention for younger siblings of children with ASD. This intervention is designed to teach parents how to promote their child’s social-communication development during everyday activities, such as snack time, bath time or play. In addition to determining the efficacy of ImPACT, we are also trying to identify for whom it is most effective, and the mechanisms of how it works. Over the next 5 years, a total of 90 younger siblings of children with ASD between the ages of 12-18 months and their parents will take part in this study. To read more about the ImPACT study, pick up the latest issue of ‘CHDD Outlook’, 2015, or download a copy here.
The Seattle Seahawks have teamed up with a nonprofit organization to offer special kits for families attending football games with children with ASD. The kits are designed to reduce sensory overload, and include items such as noise-cancelling headphones and a detailed schedule of game day activities. Kits will be distributed free of charge, so that families can bring their children with ASD to games to cheer on their favorite football team. Get your kits now at CenturyLink Field! And Go Hawks!
To read more about this program, visit the Seahawks’ site!
READi Lab Director Wendy Stone is featured in a UW Today article for her contributions to Sesame Street’s new autism initiative, “See Amazing in All Children”, which launched this morning! Wendy has served as an advisor to Sesame Street since 2009, when she and Vanderbilt colleague Evon Batey Lee, PhD were commissioned to write a white paper describing the state of the science of autism and how Sesame Street could use their creative programming and wide reach to impact the lives of children with autism, their families, and their communities. Six years later, the fruit of their efforts paid off in this broad-based initiative that introduces Julia, Sesame Street’s first character with autism, and includes multimedia activities and materials for siblings, parents, educators, and other providers designed to promote understanding, acceptance, and support for this group of “amazing” children. Visit the “See Amazing in All Children” site to check out the new resources!
As the chilly fall air begins to settle in, the READi Lab warmly welcomes one returning and two new undergraduate research assistants: Rachel Hantman (Junior; returning) Emily Sawan (Sophomore; new) and Dana Janigian (Senior; new). Rachel was away all summer volunteering her time at a special needs summer camp in Boston, but is happy to be returning to UW and the READi Lab this fall. Emily plans to pursue a BA in Psychology, and spends her summers as a cabin leader for individuals with special needs. Dana is double-majoring in Human Evolutionary Biology and Communications, and enjoys babysitting and teaching Sunday school for first graders. To learn more about the READi Lab Team, check out the About Us section on our website.
A new article in ‘Autism Research’ describes the disparities in access to autism screening and diagnosis that exist across the world. Most research on autism occurs in high income countries, which account for less than 20% of the world’s population. The vast majority of individuals with autism live in low and middle income countries, where access to gold- standard diagnostic tools and evidence-based practices is quite limited due to high costs and copyright issues that preclude translation. To close the knowledge gap and decrease this global imbalance, the authors advocate adoption of ‘open source’ practices such as free screening and diagnostic tools that can be shared and modified, and open access copyrights in which publications can be reproduced and distributed at no cost. In addition to improving global welfare, these practices can bolster our scientific efforts to understand autism across cultures.
This commentary was developed following a meeting sponsored by Autism Speaks and the International Society for Autism Research last October. Dr. Stone is happy to have been invited to this conference and to have contributed to this article.
Following in the spirit of its message, the article was published as open source, which allows us to share the full article download with you!
Movie critics Ibañez and Stone attended a sneak preview of “How to Dance in Ohio,” an HBO documentary about teens with ASD preparing to attend a spring formal dance.
Reviewer 1: As a life-long connoisseur of films that combine the themes of teenage angst and the “big dance”, this film ranks high on the list for me– right next to Grease. However, the teens and young adults with ASD in this documentary are more colorful, endearing, and relatable than any fictional character ever portrayed by John Travolta and Olivia Newton-John. The featured teens—Meredith, Caroline, and Jessica—along with their friends in a social skills group in Columbus, Ohio, display a wide array of functioning levels and personalities. While you do get an intimate look at the ASD-specific challenges that arise for these teens and their families, one of the most refreshing and powerful aspects of this film is that, more often than not, you will find yourself connecting with what the teens are feeling as they prepare to take on the dance (and the “real-world”). Through the course of the 90 minutes, I found myself thinking “oh, I remember those butterflies in my stomach,” “Ah yes, I remember how difficult that moment was for me,” and “I too think practicing my dance moves before the big dance is a must.” Overall, the teens’ desire to socially connect and successfully navigate the highs and lows that come with rites of passage shines through and does so very brightly!
Reviewer 2: Despite an overflowing work life that has been focused on autism for more years than I like to admit, I experienced this film as one of the most (probably THE most) fresh, genuine, and unforgettable autism documentary that I have seen. In fact, I have not been able to stop thinking about “How to Dance in Ohio” since attending the sneak preview through SIFF on Wednesday night. This film provides such an engaging and honest depiction of teenagers with ASD that it is hard to not to share in their fears, struggles, courage, and successes as we watch them navigate their new world of dating, dancing, and dress-up. A bonus of the SIFF preview was the opportunity for a Q&A session with the director (Alexandra Shiva) and producer (Bari Perlman), who described their experiences getting to know the teens, as well as the exquisite care they took to ensure their comfort throughout the process. As heartwarming as the film was, the fact that the theater was filled to capacity was (almost) equally gratifying. I would be surprised if anyone left the theater without feeling changed in at least some small way by the honesty and strength of Caroline, Meredith, and Jessica.
This film will be aired by HBO on October 26, 2015. For your own sneak peek of the film, check out the trailer!