All posts by Rablab

Seahawks ‘Beast Bus’ tailgates for Autism

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Photo from King 5 News

In celebration of the beginning of football season here in Seattle, we thought it best to highlight the popular Seahawks “Beast Bus” attraction. While most fans just see it as part of the rich pre-game tradition in Hawks Alley, it actually has a strong connection to Autism.

The owner of this double decker is Ben Seher, who bought the bus straight from London and revamped it to the tailgating behemoth it is today. There is plenty of food and drink to go around in this living, breathing, fan-cave as riders are well aware. But, what most don’t know is that the suggested $20 donation actually goes towards a local Autism charity. Both Seher’s nephew and the Seahawks GM John Schenider son, Ben, have Autism and money raised from the bus goes towards “Ben’s Fund.” This service provides financial help to families affected by ASD and they usually raise $50,000-$60,000 a season! So next time you are tailgating at the Link, make sure you hop aboard the Beast to get some pre-game nutrients, and more importantly to help kids with Autism get the treatments they need.

 

 

 

EEG Sessions: An Introduction to EEG

EEG Sessions

eeg-photoWelcome to the Bernier Lab’s new blog series “EEG Sessions”, where we will share with you EEG related topics, our thoughts on recent papers, and other relevant information from the Bernier Lab.  To start off, we will describe why we measure brain activity using electroencephalography (EEG) and what the data represents.

Here at the Bernier Lab, we research genotypes and phenotypes related to autism spectrum disorder (ASD), which means that we capture a thorough and multifaceted picture of each participant by integrating genetic sequencing,  behavioral assessments, and neurophysiological measures. One of the neurophysiological measures  we use regularly is electroencephalogram (EEG). EEG is a noninvasive procedure that tracks and records brain waves through electrodes that are affixed to the scalp. In our lab, we use an EEG netcap with hundreds of recording sites that is similar in structure to a swimming cap. EEG collects information about brain activity down to the millisecond(!), but it is hard to determine exactly where the brain signals originate within the brain. In other words, EEG provides a very reliable representation of when neural activity occurs, but we have to use discretion to determine where it occurs.

To better understand how brain activity relates to specific aspects of cognitive function, we control what our participants see or hear. Sometimes we show pictures or movies (with or without sounds). Other times we ask participants to sit quietly or close their eyes. We call this method “event-related potentials” (ERP), which refers to the fact that we record brain signals (i.e., potentials) in response to specific stimuli (i.e., events, such as a picture of a face). Stimuli may be visual (e.g. images flashing on a screen) or auditory (e.g. different beeps, tones, and sounds). We examine ERP responses in milliseconds and refer to specific parts of the brain activity, or brain waves, as ‘components.’ Components of interest are measured both in latency (When does the brain response occur?) and amplitude (How strong is the response?). There are predictable brain responses that occur at specific time points, often with expected amplitudes. In our ERP analyses, we measure selected components and compare them across different groups (e.g. children with ASD versus typically developing children).

In conducting EEG experiments, we hope to establish specific biomarkers that may aid in the diagnoses of autism. Currently, ASD can only be diagnosed through a series of clinical assessments. While these measures are reliable, they are built for toddlers and older children, simply due to the nature of the activities involved. Trying to diagnose children who are nonverbal or have cognitive impairments is especially challenging. Biomarkers could aid with diagnosis of children who are difficult to evaluate with traditional clinical ASD measures, including infants. This is especially significant because early intervention is critical and effective. If, for example, we found that a group of children with ASD share a brain signature that is different from other groups of children with ASD, we could use that knowledge to aid in early diagnosis and intervention. Designated biomarkers that aid early diagnosis of autism could also provide insight about anticipated behaviors and challenges for individual children. Such knowledge would be valuable in determining which treatments and therapies would be most beneficial for that child.

Establishing biomarkers for autism is no easy task. We know that ASD is a complex, multifaceted disorder, and as such, there will always be a number of factors that are difficult or impossible to address. Isolating ERPs can also prove challenging due to inherent brain differences associated with chronological age and developmental stage. Genetic events, comorbid disorders, and the heterogeneity of ASD further add to the complexity of establishing reliable biomarkers of autism. As a result, it is not uncommon for research to have mixed or contradictory findings. This is certainly true in EEG/ERP research. One of the goals of our EEG journal club is to think critically about existing research in order to improve our own methods and produce reliable findings with clinical applications.

Autism Speaks Walk

Bernier Lab, Events, Seattle Children's Autism Center

Join us this weekend, Saturday September 24, 2016, 9:00-12:00, at the Autism Speaks Walk in Seattle!  The walk raises funds to support vital research and top-quality programs that are changing the future for those who struggle with autism.

Stop by the Bernier Lab and the Seattle Children’s Autism Center’s booth at the Walk to learn more about research opportunities! You can Donate to a walker from our team by following this link!

Autism Speaks Walk, Saturday September 24, 2016, 9:00-12:00, Seattle Center Next 50 Plaza.

How to Navigate the Diagnosis and Treatment of Autism: Tips for Families from Culturally and Linguistically Diverse Backgrounds

Bernier Lab, Educational, News, Research, Seattle Children's Autism Center

How to Navigate the Diagnosis and Treatment of Autism: Tips for Families from Culturally and Linguistically Diverse Backgrounds.

By: Megan Frye, PhD, Licensed Psychologist

multicultureObtaining a diagnosis and treatment for Autism Spectrum Disorder (ASD) can be an overwhelming process. Complications with long waitlists for initial diagnosis particularly in rural areas, confusing policies regarding insurance billing and navigating a multitude of appointments, and difficulties coordinating care between therapeutic and educational settings can create an isolating and confusing experience for many children and families. These issues often add additional stress to the daily ups and downs of caring for an individual with ASD.

The situation is only made more complex for families from culturally and linguistically diverse backgrounds for whom English is a second language. The ability to communicate information about your child, your family culture, and your concerns and hopes as a parent is valuable and important in ensuring you receive the support you need and your child receives the highest quality of care possible. Thankfully, many professionals, legislators and families are working together in efforts to improve the system of diagnosis and treatment.

Below are several tips that linguistically diverse families may find helpful in navigating the process of diagnosis and treatment for autism:

1.Ask for an interpreter. It is your legal right to access care in your first language for free. You may request a provider that speaks your language. If one is unavailable the services of an interpreter can be provided to help you communicate with your child’s care team. All major hospitals provide these services. For assistance with making appointments at Seattle Children’s Hospital call: 1-866-583-1527. Mention your first language, your child’s name, the provider with whom you’d like to speak.

2.Confirm what your insurance will and will not cover. Visits with a psychologist, psychiatrist, mental health therapist or behavioral consultant are usually billed as mental health services. Some insurance companies cover mental health services the same as medical services, others do not. Important questions to ask your insurance company include:

  • How many mental health visits are allowed per year?
  • Can my child see any provider or do I have to choose from a list?
  • Are there any diagnoses that are not covered?

3.Share about your family and culture. Communicate your family’s beliefs and cultural understanding of what is happening for your child. Share what you believe are your child’s strengths and challenges. Remember, you know your child better than anyone else.

4.Ask for clarification. If you don’t understand what the provider is asking or if you have questions about what they are saying, it’s ok to have the doctor slow down and clarify or give examples.

5.Ask if there are materials and resources available in your first language. Many resources are available in Spanish and other languages and providers will be able to point you in the direction of books and other resources. The Autism Speaks website provides resources in several languages. Resources in Spanish can be found here.

6.Use parent education and support resources. Getting an autism diagnosis and navigating treatment is life-altering. You are not alone. Speaking with other families who may be facing the same challenges and gaining support for yourself is essential in better supporting your child. Ask your provider about connecting you with other families from your language/culture through groups and other supports.

  • More information about Parent-to-Parent support groups in Spanish.
  • The group Padres Unidos is a support group in Spanish for parents who have children with special needs. This group meets the third Friday of every month from 6-8pm at Child Strive 14 E Casino Road, Bldg. A Everett, WA 98208.

7.Request assistance with making scheduling more convenient if possible. Ask your provider if there are appointments available in the early mornings or evenings or if several visits with different providers can happen during one day to limit the need to take several days off of your own work schedule.

8.Prioritize Interventions. Request that your provider help you prioritize interventions and treatments that are the most important first, if your ability to attend multiple weekly appointments is limited.

9.Connect with school. Inquire if there are services that might be provided at your child’s school or in the home setting to limit the need to travel to clinic for services.

10.Encourage provider collaboration. Request that providers communicate directly with each other rather than you having to pass along the message. Encourage community-based providers to connect with your child’s school.

11.Be an active part of your child’s treatment. Ask questions, speak up, advocate. You’re the number one expert on your child. Your involvement and expertise is a key component to their care. They are lucky to have you and they will benefit from having you involved!

 

¿Cómo enfrentar el diagnóstico y tratamiento del Trastorno del Espectro Autista? Consejos para las familias de diversos orígenes culturales y linguisticos

Por: Megan Frye, PhD, Psicóloga Infantil

multiculture

La obtención de un diagnóstico y tratamiento para el trastorno del espectro autista (TEA) puede ser un proceso abrumador. Las complicaciones con largas listas de espera para el diagnostico inicial sobre todo en las zonas rurales, confundiendo las políticas con respecto a la facturación del seguro y la navegación por una multitud de citas, y dificultades para coordinar la atención entre los ajustes terapéuticos y educativos pueden crear una experiencia de aislamiento y confucion para muchos niños y familias. Estos problemas suelen anadir tensión adicional a las subidas y bajadas diarias de cuidar a una persona con TEA. La situación solo se hace mas compleja para las familias de diversos orígenes culturales y linguisticos para quienes el ingles es un segundo idioma. La capacidad de comunicar información sobre su hijo, su cultura familiar, y sus preocupaciones y esperanzas como padres es valiosa e importante para garantizar que reciba el apoyo que necesita su hijo y su que reciba la mas alta calidad de atención posible. Agradecidamente, muchos profesionales, legisladores y familias trabajan juntos en los esfuerzos para mejorar el sistema de diagnóstico y tratamiento.

A continuación se presentan algunos consejos que las familias de habla hispana pueden encontrar útiles en la navegación del proceso de diagnostico y tratamiento de TEA.

1.Solicite un intérprete. Es su derecho legal para acceder a la atención en su primer idioma de forma gratuita. Usted puede solicitar un proveedor de habla española. Si uno no está disponible los servicios de un intérprete se pueden proporcionar para ayudarle a comunicarse con el equipo de atención de su hijo en español. Todos los grandes hospitales ofrecen estos servicios. Para obtener ayuda con hacer citas en el Hospital de Niños de Seattle (Seattle Children’s Hospital): Llame Nuestra línea gratis de Interpretación Telefónica 1866-583-1527. Menciónele al interprete el nombre de la persona o departamento que necesita.

2.Confirmar lo que debe y no debe cubrir su seguro. Visitas con un psicólogo, psiquiatra, terapeuta de salud mental o consultor de comportamiento suelen ser facturados como servicios de salud mental. Algunas compañías de seguros cubren los servicios de salud mental lo mismo que los servicios médicos, otros no lo hacen. Las preguntas importantes para hacerle a su compañía de seguros incluyen:

  • ¿Cuántas visitas de salud mental se permiten por año?
  • ¿Puede mi hijo ver a cualquier proveedor o tengo que elegir de una lista?
  • ¿Hay algunos diagnósticos que no están cubiertos?

3.Compartir acerca de su familia y la cultura. Comunicar las creencias de su familia y la comprensión cultural de lo que está sucediendo a su hijo. Compartir lo que usted cree son las fortalezas y desafíos de su hijo. Recuerde, usted conoce a su hijo mejor que nadie.

4.Pida una aclaración. Si usted no entiende lo que el proveedor está pidiendo o si tiene preguntas acerca de lo que están diciendo, que está bien tener el médico reduzca la velocidad y aclarar o dar ejemplos.

5.Pregunte si hay materiales y recursos disponibles en su lengua materna. Muchos recursos están disponibles en español y los proveedores serán capaces de señalar en la dirección de los libros y otros recursos. Un recurso útil Sobre el autismo en Español es el sitio de web de ‘Autism Speaks.

6.Utilizar los recursos de educación y apoyo para padres. Conseguir un diagnóstico de autismo y la navegación por el tratamiento altera la vida. Usted no está solo. Hablando con otras familias que pueden estar enfrentando los mismos desafíos y la obtención de apoyo para usted es fundamental para apoyar mejor a su hijo. Pregunte a su proveedor acerca de que la conexión con otras familias de la lengua / cultura a través de grupos y otros soportes.

  • Puede encontrar más información sobre los grupos de apoyo de padre a padre en español accediendo.
  • El grupo de Padres Unidos es un grupo de apoyo en español para los padres que tienen niños con necesidades especiales. Este grupo se reúne el tercer viernes de cada mes de 6-8 pm en Child Strive 14 E Casino Road, Bldg. A Everett, WA 98208.

7.Solicita ayuda con la fabricación de programación más conveniente si es posible. Pregunte a su proveedor si hay citas disponibles por la mañana temprano o por la noche o si varias visitas con diferentes proveedores pueden suceder durante un día para limitar la necesidad de llevar varios días fuera de su propio horario de trabajo.

8.Prioriza Las intervenciones. Solicita que su profesional medico le ayudara a priorizar las intervenciones y tratamientos que podría ser la primera más importante si su capacidad de asistir a varias citas semanales es limitada.

9.Conectar con la escuela. Preguntar si hay servicios que pueden ser proporcionados en la escuela de su hijo o en el hogar para limitar las necesidades de viajar a la clínica para recibir servicios.

10.Fomentar la colaboración proveedor. Solicita que los proveedores se comunican directamente entre ellos en lugar de tener que usted transmita el mensaje.  Formenta a los proveedores basados en la comunidad para conectar con la escuela de su hijo también.

11.Sea una parte activa del tratamiento de su hijo. Hacer preguntas, hablar, defender. Usted es el número uno experto en su hijo. Su implicación y la experiencia es un componente clave para su cuidado. Son muy afortunado de tenerte y que se beneficiarán de tener que participar!

SCAC Blog voted Best Autism Blog of 2016!

Autism Blogcast, News, Seattle Children's Autism Center

Congratulations to the Seattle Children’s Autism Center who were voted Best Autism Blog of 2016 by Healthline.com.

“For clinical perspectives on autism, you couldn’t do much better than the Seattle Children’s Hospital’s blog on autism. Contributors fill you in on the latest news, offer parenting tips and advice, and answer reader-submitted questions. There’s also a monthly blogcast featuring interviews with autism experts and mindfulness exercises to help any anxious or stressed parent.”

And of course, the lab’s Dr. Bernier and Dr. Gerdts are some of these autism experts!

Read the article here: http://www.healthline.com/health/autism/best-blogs-of-the-year#2

Autism and Ultrasound

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The above map reflects what the world was thinking when Christopher Columbus set out on his voyage to “discover” the New World. That’s kind of like where we are with Autism Spectrum Disorder (ASD). But there are many folks collaboratively engaged – parents, clinicians, educators, advocates, scientists, employers, etc – who are working to add details to the map.  

On the first of September researchers at Seattle Children’s and UW published a paper in Autism Research (for link to the paper click here: http://onlinelibrary.wiley.com/doi/10.1002/aur.1690/epdf) that identified a connection between exposure to diagnostic ultrasound in the first trimester of pregnancy is linked to the severity of autism symptoms observed in children diagnosed with autism. This connection was strongest when the children had certain genetic variations associated with ASD (called copy number variants). The paper has received some recent attention in the media so we wanted to take a moment to provide our take on the paper without any spin (important caveat is that this blog author is one of the authors of the paper).

First and foremost, this study does not look at whether ultrasound causes autism or not. That is an important statement that should be clear. The way this study was designed, this question cannot be asked or answered. Second, a key finding in this paper concerns the interaction between the genetic variations identified in the children, ultrasound, and the timing of exposure. The key point of the paper suggests there may be an interactive relationship between genetics and ultrasound exposure and the time of the exposure.

One more quick comment: this is the first paper to describe this interaction between ultrasound, genetics, timing and autism severity and therefore requires replication. However, science requires independent replication. Additional studies are needed and, importantly, should be conducted by different research groups. Independent replication is critical to moving science forward.

So, what should we do with this information? We should put it on our map in pencil. We should consider it one step in our ongoing move toward a better understanding of ASD which we’ll color in a little more with each independent replication (or we can erase it if there isn’t any any replication). We can only keep filling up the landscape if we continue working together knowing that with every study [well, maybe not every study, but most every study ;)] we’re illuminating another piece of the map.