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Archive for the ‘autism’ Category

Children with autism demonstrate social skill deficits that often include difficulty recognizing emotions. Differences in recognizing faces can be observed in infants as young as 3 months old, and infants typically begin to recognize emotional expressions at 6 months old. Recognizing emotions is important for responding to social cues and also for recognizing and regulating one’s own emotions. Hence, a common aspect of early behavioral therapy for children with autism includes practicing emotion recognition. 

While early behavioral therapy has shown to drastically improve outcomes for children with autism, many families experience difficulty  getting  access to therapy  due to long wait times after a diagnosis and/or living far away from a site or clinician that provides these interventions. In an effort to make aspects of therapy more accessible, our team at Stanford developed a smartphone app that incorporates common elements of therapy.  Our app  was designed  to deliver a fun game-based intervention while collecting data useful for measuring progress and outcomes from the comfort of home. To see if this app can help children improve emotion recognition and social skills, we are conducting a randomized controlled trial among children with autism 3-12 years old. Read more about the app and study below!

The app we designed is for Android and iPhone smartphone users. To play, the parent/guardian holds the phone on their forehead with the phone screen facing the child and displaying an image based prompt ( i.e. Dinosaur, Happy face, Skier, etc.) for the child to act out and for the parent to guess (similar to the game Heads Up! or HedBanz). 

The entire charades play session is audio and video recorded by the phone’s front camera and at the end of a single 90 second session, users (parents) are asked to share or delete the video. Sharing the video sends the encrypted video securely to Stanford servers so that it can be analyzed by our research team. 

What is involved in the study and what we expect to find: Parents who enroll in the study will be asked to complete 2 questionnaires online. At the end of the questionnaires, parent and child will complete a task where the child is asked to label different animated GIFs with an emotional label (happy, sad, angry, etc.). 

After completing these tasks, the study team will randomly assign  families to one of two groups. This means that half of participating families will be asked to download and play the app for 4 weeks, and the other half of families will wait to download the app until week 8. Both groups will repeat additional questionnaires at week 4 and week 8. 

All participants will receive a $50 gift card for participating in the study for 4 weeks and an additional $20 for completing the additional questionnaires after 8 weeks of being in the study. 

We expect to see greater improvements in social skills as measured by the Vineland Adaptive Behavior Scale, among participants who use the app for the 4 weeks compared to those who are waiting to use the app. 

We hope the study will show that (1) this smartphone, game based intervention delivered by a parent can be just as effective as traditional therapy, and that (2) the smartphone game system can produce data for measuring progress and speed up traditional assessment procedures for diagnosis and service eligibility screening.

What can happen if the study works – will it be available commercially? In schools? If the study works, we plan to find ways to make the app available commercially. This could be accomplished by seeking FDA approval of the app so it can become an insurance reimbursed product or service, licensing the app to schools so they can use the app during daily programming, and/or make the app available on the Apple or Google Play store!

Interested in joining?  

Start by completing the initial questionnaire at: guesswhatstudy.stanford.edu   

ClinicalTrials.gov Registration: NCT04739982

Questions? 

Phone: 650-497-9214

Email: smartphonestudy@stanford.edu  

Lab Website: https://wall-lab.stanford.edu

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Worries about the COVID-19 vaccine have percolated in the autism community since the first shots were administered late last year, and it’s an issue I tackle head-on in the latest ASF weekly science podcast, titled “Why Would You Not Get Vaccinated?

Although it’s understandable that families facing ASD might feel nervous about the COVID-19 vaccine because it feels so new, the reality is that the vaccines are safe, effective and rooted in longstanding science.

As I explain in the podcast, it’s especially important for adults and children with autism to get vaccinated when able because multiple studies show that people with autism and intellectual disabilities are at a higher risk of death from COVID-19 compared to people facing other preexisting conditions. Furthermore, it’s crucial that parents of kids with autism get vaccinated to lower the risk of infecting a child who is not yet eligible to receive a vaccine.

Dr. Pam Feliciano, the scientific director of SPARK (Simons Foundation Powering Autism Research through Knowledge), joined me for the first half of the podcast and speaks about vaccine hesitancy and how to alleviate fears. She notes that the data on vaccine safety is “really strong,” and the vaccines have now been administered to millions of people who are now able to return to pre-pandemic activities more quickly than those who aren’t.


The bottom line, as I emphasize in the podcast and in this recent Everyday Health article titled “5 Things People With Autism and Their Caregivers Should Know About COVID-19 Vaccines,” is this: “The science is clear: you are better off vaccinated than not vaccinated.”

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Guggenheim For All

by Melanie Adsit, Guggenheim For All

The Guggenheim Museum is committed to creating an accessible experience for all patrons and has developed several innovative programs to provide multiple points of access for diverse constituents. Our ongoing goal is to make the Guggenheim a welcoming place of creativity, respite, learning, and community for all visitors. 

What is the Guggenheim doing for families with ASD?

Guggenheim for All (GFA), which began as a pilot program with Brooklyn Autism Center in 2010, has become a central part of the Guggenheim Museum’s programming. Guggenheim for All facilitates unique museum experiences for people with autism spectrum disorders (ASD) through school programs, family programs, visitor resources, and career development opportunities. School and family programs led by specially trained educators use art activities to help students with ASD develop their social and communication skills and become comfortable with new learning environments and routines, while also encouraging them and their caregivers to consider the museum as a welcoming and non-judgmental place for engagement. Visitor resources produced by the museum include  “Visiting the Guggenheim”, a social narrative guide to the Guggenheim, available online or in downloadable print form, as well as a sensory map of the museum and sensory supports to be used in the museum galleries.  Career development opportunities include an internship and apprenticeship for young adults with autism to experience the museum as a workplace and develop job skills. 

After nine years of successful engagement through Guggenheim for All, the museum has received multiple requests from institutions across the U.S. for insight into launching like-programming, the Guggenheim Museum saw a critical need for leadership in developing a broader, meaningful museum autism program model. As museums work to develop programming opportunities for this growing audience, resources and research remains limited; there was a real need for further research and development of resources that link best practices in museum education with best practices in the field of education for individuals with autism. The Guggenheim decided in 2018 to fill this role by both conducting the research and creating a replicable, scalable program model in the form of a free digital curriculum and toolkit designed to provide a framework and resources for implementation and adaptation by other cultural institutions. In this way, the Guggenheim Museum seeks to generate a collective that over time, can engage in innovative ways with children and adults on the autism spectrum, and share best practices to further fortify autism programming in arts organizations nationally and globally.

Who benefits by this program?

By using the arts to support the strengths of individuals with autism, museums are uniquely poised to help students connect with people and works of art through communication about art and art-making.  Many of the learning strengths common to individuals with autism seem to be a natural fit with the visual arts. Museum education utilizes object-based and hands-on teaching techniques; the concrete visual nature of these experiences can scaffold conversation and interpersonal interactions for students who often exhibit a concrete visual learning style. Connecting young people with autism to the arts through their own strengths and interests allows them to develop their skills and talents in a creative and authentic way. Museum education is poised to provide a constructivist learning experience that builds on the learning strengths characteristic of people with autism while indirectly addressing the areas of socialization and communication with which these individuals often need support.  However, a specialized methodology to teach individuals with autism in the museum does not exist; current practice is focused on adapting museum education techniques for neurotypical learners.  While the learning strengths found to be specific to individuals with autism point to an educational method that is visual, little research exists on how the visual arts can be utilized in a strengths-based manner. 

What are they doing for families outside NYC?

GFA family programs have filled every month, and are attended by families both local and global. Participants have joined from across the USA as well as from England, Wales, Korea, and the Netherlands, and are developing friendshipsand connecting with peers around the globe. Our April 2021 GFA family program featured Myasia Dowdell, an artist with autism who is represented by LAND gallery. This event filled to capacity, and inspired participants to create their own work and support the artist herself.  A parent wrote: “That was absolutely amazing! My son and I enjoyed it so much. We loved hearing about the artists thought process and seeing the colorful and arresting artwork. I wanted to ask if there was somewhere to purchase Myasia’s artwork. Specifically, the Michael Jackson piece. Many thanks for a special morning!” Based on this program’s success, the museum hopes to highlight more artists with autism in upcoming GFA family programs. 

The museum is also putting together a virtual exhibition of work created by GFA students, organized by our GFA apprentice and intern, that will be live on the museum’s website and showcase the talents of participants in the program. We are also planning our first in-person GFA family event to be held in Central Park in June. The event will be held in collaboration with Kansas Children’s Discovery Center, a children’s museum in Topeka with a dedicated autism program.  The program and will focus on nature and architecture and encourage families to connect with peers across distancethrough art. 

How can I get involved ?

GFA virtual programs will be evaluated through a study with Seaver Autism Center for Research and Treatment at Mount Sinai during 2021. The study will examine the effectiveness of the GFA training program by assessing educator fidelity to a training module and examine student and caregiver expectations and satisfaction. The data generated by this study will both validate the practices we are using in GFA programs and also to add a formal evaluation component tothe GFA Toolkit.

Learn more HERE or contact Melanie Adsit at madsit@guggenheim.org

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by Alycia Halladay, PhD, Chief Science Officer

Despite all the challenges associated with the pandemic, one thing that’s become even more clear this past year is the critical role science plays in keeping us safe and healthy. We at the Autism Science Foundation have always championed science as the key to improving lives, and we know the critical role evidence-based research plays in improving the lives of people with autism. Science is at the core of what we do, it was at the heart of last Thursday’s successful Day of Learning.

Although we missed seeing everyone in person, we are proud that the event shattered all previous attendance records. This robust participation demonstrated our community’s collective commitment to autism science, and the critical role research plays in learning more about the causes of autism and how to treat people with autism more effectively.

I recapped the event in my podcast this week, and I encourage you to take a listen to get a quick overview of the important topics we covered—which, like always, were determined based on feedback from the ASF community.

Unsurprisingly, the impact of the COVID-19 pandemic remains front of mind for many, and we are grateful to both Dr. Pam Feliciano of the Simons Foundation Autism Research Initiative for providing an overview of the impact of the pandemic on autism families, and to Dr. Lonnie Zwaigenbaum of the University of Alberta, Canada, for ways we can rethink ASD assessment in the pandemic and beyond. 

Another important story on people’s mind this past year following the murder of George Floyd is social justice, and to making sure that marginalized groups receive the quality of care they deserve in a timely manner. Dr. Brian Boyd of the University of Kansas noted in his talk that Black people are less likely to be diagnosed with autism, and if they are diagnosed it typically happens later. As I say in my podcast, one thing that has become clear is we need to prioritize the pillars of social justice to support these families: equity, participation, diversity and human rights.

Our other speakers also touched on some of the most important issues in the autism community right now. Dr. Sarah Spence of Boston Children’s Hospital delivered the inaugural Jake Rimland Memorial Talk on what you need to know about autism and Sudden Unexpected Death in Epilepsy (SUDEP); Dr. Shafali Jeste of the University of California, Los Angeles discussed finding the right help for people with autism; and Dr. Orrin Devinsky of New York University discussed the latest on cannabidiol research in treating ASD. I also recap all these talks in my latest podcast.

In addition to my podcast, we will also be releasing videos of each talk shortly, and we are grateful to all our Day of Learning speakers for sharing their findings with us. We also thank everyone who joined us for the event, and to the entire ASF community for its commitment to our shared goal of supporting science that can make a meaningful difference in the lives of people with autism.

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How Do Infants Learn?

by: Silvia Ortiz-Mantilla, April A. Benasich, Judith McDonald and Julie Morgan-Byrne, Infancy Studies Laboratory, Rutgers University

Many children with Autism Spectrum Disorder (ASD) have difficulties processing auditory information and producing and/or understanding language. Quite often these difficulties are seen as delays in achieving language milestones.  During the first year of life, before even beginning to talk, typically developing infants must decipher incoming language, that is, be able to discriminate fast, successive changes in auditory sounds that occur in fractions of a second. This ability, called “rapid auditory processing”, is essential for infants to construct an acoustic representation or “map” of the sounds of their native language in the auditory areas of the brain. The accuracy of these sound maps, that are established by 12 months of age, determines how well and how quickly incoming language is processed. Brain maps are important for many reasons including linking sounds to meaning as infants begin to make sense of the environment that surrounds them.  Specifically, these representations of language in the brain facilitate infants capturing the often tiny but critical differences in the sounds of consonants, for example, the difference between “ba” and “da”.  

Research at our lab at Rutgers University is investigating how these brain maps are formed and how language sounds in the environment shape the organization and accuracy of these brain maps.   The complex interaction of genetic factors, rapid auditory processing abilities and how the brain responds to environmental sounds, including speech, creates and sculpts these maps which determine how well language develops.  It is still not clear if children with ASD have problems with rapid auditory processing or with establishment of these crucial brain maps of their native language. However, the fact that many children later diagnosed with autism, and that some of their younger siblings present language delay as early as 12 months of age suggest they may be related. In infants with autism, rapid auditory processing may not be as efficient, and these brain maps may not be as accurate as those without ASD.  But how do researchers study language acquisition in infants with ASD?  Younger siblings of children with ASD have a 15x higher probability of an autism diagnosis, making them an ideal group to better understand the earliest neural markers of brain function in language areas of the brain.  

Our projects at the Infancy Studies Laboratory at Rutgers University-Newark aim to determine how infants set up these crucial brain maps and how we can improve this brain mapping by facilitating rapid auditory processing in those at higher risk for developmental language disorders.  We want to understand typical and atypical development of the brain and how it relates to early language and to issues with language in autism.  How do we do this?  We developed a baby-friendly intervention that encourages babies to discriminate between sounds that become increasingly faster and more complex. In that way, the training facilitates rapid processing of important acoustic information, which helps with setting up these early auditory maps and also increases attention to environmental acoustic cues that signal “this might be language”.  Many studies have demonstrated that the earlier an intervention is introduced, the greater the opportunity for improvement. This is because at these early ages, when neural connections are being made, the brain is more flexible and responsive to the tiny variations in sound that signal language. 

So far, we have demonstrated in typically developing infants that focusing infant attention on important acoustic cues in the environment, even before they can produce words, improves auditory processing speed and supports formation of more precise acoustic maps. This, in turn, helps development of these important prelinguistic categories in the brain and improves acquisition of later language. When our group of trained infants was compared to un-trained infants, those who participated in the intervention were much more efficient at processing syllables at 7 months of age and had better language comprehension and expression at 18 months of age. We are inviting baby siblings of children with ASD to our lab to participate in this training experience starting at 4 months of age. Training sessions last approximately 30 minutes each week for six weeks. Pre- and post-training visits include standardized language/cognitive testing and an electroencephalogram (EEG/ERP) that records infant’s brain response to sounds. Each family receives an informative letter about the visit, monetary compensation, and a small toy for the baby. We love babies—so are committed to making each visit a pleasant and fun learning experience!

Contact us! 

Phone: 973-353-3593

Email: babylab@newark.rutgers.edu     

Website: babylab.rutgers.edu 

Facebook: facebook.com/RUbabylab 

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by Alison Singer, President, Autism Science Foundation

I am infuriated by the story of the four-year old boy with autism who was kicked off a Spirit Airlines flight for not wearing a mask, despite having a letter from his doctor indicating he was exempt from mask-wearing due to disability.

(https://www.cbsnews.com/news/spirit-airlines-kicks-four-year-old-boy-with-autism-off-flight-for-not-wearing-mask/)

The airline told the family autism “is not a disability.” Where on earth would someone get the idea that autism is not a disability? Perhaps from neurodiversity community members who insist that autism is just an “alternative way of being” or a “difference” or “superpower” rather than a disability. For some high functioning individuals that’s true and for others, like this boy, it’s not. This is exactly why we need new terms for autism to separate profound autism from what used to be called Asperger Syndrome.

It’s hard to blame Spirit Airlines. After all, the autistic people portrayed in the news and on television shows are very high-functioning and hardly look disabled, whereas the reality of profound autism is disturbing. Studios won’t soon be developing sitcoms around the enormous burdens severe autism places on individuals and their families. So people watch the Good Doctor or the Big Bang Theory and assume people with autism become surgeons or scientists.   

In fact, the word ‘autism’ is now applied so broadly as to be practically meaningless. In the previous version of the “Diagnostic and Statistical Manual of Mental Disorders” (DSM-IV), ‘autistic disorder’ was defined as a specific cluster of characteristics, including abnormal social interaction and communication, and a restricted repertoire of activity and interests. The manual included separate diagnoses for Asperger syndrome and pervasive developmental disorder-not otherwise specified — which were typically given to people on the milder end of the spectrum.

But in the current version of the diagnostic manual, the DSM-5, those diagnoses have disappeared. Since 2013, when this version debuted, individuals with a wide range of autism features have all received the diagnosis of ‘autism spectrum disorder.’

This means that someone diagnosed with autism can have a genius-level intelligence quotient or have intellectual disability and a score far below average. It can include someone who has no language, minimal language or intact language. It can apply to an individual who has self-injurious, aggressive behavior, or someone who has trouble navigating the social scene in the school cafeteria. It can describe a person who graduated from Harvard Law School or an individual who exited high school with a certificate of attendance. No wonder there is confusion.

Dr. Catherine Lord, a professor at UCLA’s Center for Autism Research & Treatment and a member of the Lancet Commission on the Future of Care and Research in Autism, debuted the term “profound autism” during the Autism Science Foundation’s (ASF) annual Day of Learning in September of 2020. Dr. Lord noted that autism is an incredibly heterogeneous condition, and there is a vast difference between a person with high functioning/high IQ autism, who can still function somewhat typically in society versus a person with autism severe enough to require round-the-clock care. According to Dr. Lord, the Lancet Commission on Autism, which is due to publish a special Autism issue later this year, concluded that “useful categories might bring attention to the different needs of different people.”

Some people with autism hold advanced degrees and high-powered jobs; others are working to learn to dress themselves and need 24-hour/day supervision to prevent them from harming themselves or others. It is imperative to have language and categories that reflect these vast differences. The term “profound autism” is not meant to further stigmatize people who fall into this category, but to provide necessary differentiation and additional support for people and families who need it most, like a four-year old boy who is legally exempt from mask-wearing and needs to get on a plane with his family. Perhaps if the employees at Spirit Airlines had understood the disabling challenges that some people with autism experience, this situation could have been avoided.

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My name is Dhruv Balaji, and I am a sophomore at Princeton Day School and the author of 9 DIY Experiments Perfect For Children On The Spectrum. My book’s aim is to spark an interest in science within children on the autism spectrum, something that is not emphasized as much as it should be in the real world. Children with autism are generally thought of as less capable than others, but from my own experience, I know that isn’t the slightest bit true. Children with autism learn differently, yes. But that doesn’t mean their passions and abilities within the field of STEAM should ever be limited. This misconception was the main motivator for me to write this book, combined with the fact that STEAM opportunities for children on the spectrum are extremely rare, especially in this new virtual world. 

The book uses science experiments to engage children with autism by creating moderately colorful, intriguing reactions that provoke asking more questions and also a passion for science. It also utilizes visual elements and text meant to simplify the scientific method, and connect the experiments they tackle to the larger world around them. The experiments themselves are designed to be collaborative, to draw families together over gathering household objects to create a tiny parachute, for instance. The creation of this book allowed me to grow as a person in many ways, especially learning about the creative process, and I learned even more about autism and mental disorders in general. This book was designed to be enjoyed by any age and skill level, with something for every reader. One aspect I enjoyed most during my initial research, was evaluating new experiments through the eyes of the potential reader, and noting which elements of the procedure would draw them in. It is my hope that through my book I can make as big of an impact as possible by inspiring children on the spectrum to further pursue opportunities in STEAM. 

For more info, check out Spectrum Robotics, our organization that teaches STEAM to children with autism free of charge. 

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A new study published last week has the autism community asking new questions about early diagnosis and prediction.  A publication in Molecular Psychiatry has been titled by the media as “Researchers Claim 100% Accuracy Predicting Autism Risk Factors in Mom’s Blood”.  Disappointingly, one of my favorite sites called IFLS (or I f**king love science) titled it “Algorithm Predicts A Type of Autism With 100% Accuracy Using Mother’s Biomarkers”.  Why am I disappointed in IFLS and other headlines?  Because I don’t think families should interpet or utilize these findings as an established and validated method of predicting autism in their children or potential children.  In their defense, the researchers did not title the study in this way, that was the media’s interpretation.  

This is a story that goes back a decade.  In 2007 researchers at UC Davis had identified specific antibodies in mother’s blood that were associated with an increased probability of having a child with autism.  The idea was that an antibody in mother’s blood reacted to the developing brain of their fetus, leading to brain abnormalities associated with a greater likelihood of an autism diagnosis.  It started with a class of antibodies, then narrowed down to different general sizes of antibodies, and more recently these antibodies were given names.  The theory has been tested in different ways.   Animal models have shown that exposure to these antibodies leads to changes in brain cells in areas that are consistent with autism behaviors.   Children with ASD born from mothers who have these antibodies have been shown to have enlarged head size.  The work has mainly been done at UC Davis, but other groups have also been investigating the link. 

From Jones and Van deWater, 2018. This depicts the maternal autoantibody transmission to the brain, which then affects the size and shape of neurons of the child with ASD.

Of course, it isn’t an all or nothing thing.   The UC Davis group estimated a whopping 23% of mothers with children with a  diagnosis had autoantibodies were present, other researchers studying the question put it at 8-10%.  Regardless of the exact number, this is an increased rate of diagnosis compared to about 1% in the general population.   As a result, researchers in the UC Davis group set up a commercial entity called Pediatric Biosciences, which has since folded, to produce a test that would identify these proteins in mother’s blood so they could be aware of an increased risk of an autism diagnosis.  The goal has been to identify a group of women who have a heightened probability of having a child with ASD so that that information can be conveyed to them in future family planning decisions.

This recent study that calculated the 100% specificity number used machine learning, which is an algorithm developed and run through a computer, to identify which combination of 7 of these autoantibodies were the ones that led to the diagnosis in the child, since presence of just one was insufficient.   For example, if the mother has autoantibodies to something called CRIMP1 and GDA, there was a 100% probability that the child would have an autism diagnosis.  This is interesting, right?

Well, there are reasons to temper your enthusiasm right now and don’t run out and get this maternal autoantibody test or rely on it.  First, the sample sizes were kind of small to make the claim that it had “100% specificity”.   Yes, maybe in these studies, small groups of people with ASD (groups with 20 children or less) also had mothers with a combination of the 2 antibodies (compared to none or very few in the controls), but it needs further comparison and the acknowledgement that there are many more children born to mothers without this antibody who also have an ASD diagnosis, and there are other factors that we also know to be involved in risk for ASD, such as genetic factors or other environmental or maternal and paternal factors.   Second, and most importantly, the samples they used were what is known as “retrospective”.  They took blood from mothers in a study for those who had already had at least one child with autism.  The samples were taken years after the diagnosis so the link between the autoantibodies and the actual cause of ASD is not a straight line.  The authors have said they are studying this in prospective samples, that is, women who have a child with autism and are pregnant with a 2nd or even 3rd.  This way they will be able to investigate the presence of the autoantibodies at the same time as the pregnancy and monitor the outcome of the child.  Some researchers have suggested that these autoantibodies reflect an ongoing immune process based on other risk factors like arthritis, gestational diabetes or other immune conditions.  More research using population-based and prospective samples would provide better information as to whether or not these autoantibodies are causal or secondary, or if it represents a subgroup with distinct features.

This story is a great example of how science has narrowed down an early hypothesis to an actual working theory through years of laborious research.  However, more work needs to be done, and if you have an immune condition or are concerned and have questions about an individual family and probability of having a child with ASD, talk to your doctor.  There are a lot factors that influence probability of a diagnosis, and more importantly, lots of factors that play out in real life, like genetic interaction, which we need to learn a whole lot about.  This algorithm did not take anything else into consideration, and when you are talking about family planning, you need to have all the information you can.  On the other hand, this research is meaningful for other reasons besides predicting the probability of an ASD outcome.  This furthers the idea that there are many ways to subgroup people with autism – both biological and behavioral – and finding those right combinations is really the holy grail of understanding ASD.

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