Category Archives: News

De Novo gene mutation in Autism linked to distinct seats of features

Interviews, News

Spectrum News published a great article on March 29th called “Rare Autism Mutations Linked to Distinct Sets of Features”, by Nicholette Zeliadt.  The article includes an interview with our own Dr. Raphe Bernier!

Data from the Simons Simplex Collection (SSC) was examined, including measures of autism features, cognitive, language and motor skills.  The children included had lower cognitive abilities and more severe autism features than other children from the SSC not included in this data sample.  Results indicate that children with de novo mutations have an approximately 2-month delay in walking than children without these mutations, but have better language and less severe social difficulties.

Follow this link for the full article: https://spectrumnews.org/news/rare-autism-mutations-linked-distinct-sets-features/

New ADNP Research discovered by local Mom

News

A local, Brush Prairie, Washington mother discovered a biomarker for the rare Activity Dependent Neurprotective Protein (ADNP) gene syndrome.  This genetic event can be associated with Autism Spectrum disorder and is a gene event studied at the Bernier Lab.  Sandra Sermone, the mother who identified the biomarker, just published the results of her research (link to article here), and has been following up with interviews to news agencies.

Follow this link for a great news article about Sermone’s research!

Watch the news report about Sermone and her research!

http://www.kptv.com/clip/13211886/local-mom-helping-change-the-way-doctors-look-at-rare-genetic-syndrome-linked-to-autism

 

Autism rates in the United States explained

News
The prevalence of autism in the United States has risen steadily since researchers first began tracking it in 2000. The rise in the rate has sparked fears of an autism ‘epidemic.’ But experts say the bulk of the increase stems from a growing awareness of autism and changes to the condition’s diagnostic criteria.

INSAR President’s Message – February 2017

News
We would like to share with our followers a message from the Board of Director of the International Society for Autism Research (INSAR), which includes Dr. Raphael Bernier.
Message from the President
The Board of Directors of the International Society for Autism Research (INSAR) is deeply troubled about the potential negative impact of President Trump’s Executive Order concerning restrictions on immigration to the United States on a core part of the INSAR mission: To promote collaboration among researchers, students, clinicians, and stakeholders worldwide to better the lives of individuals and families living with autism spectrum disorder (ASD).

Autism science is greatly enriched by collaborations and ideas from all over the globe. INSAR joins with the Association of American Universities (AAU) in urging that “the administration’s new order barring the entry or return of individuals from certain countries…should end as quickly as possible.” We support the AAU’s call for the United States to continue “to welcome the most talented individuals from all countries to study, teach, and carry out research and scholarship at our universities.”

The new travel restrictions are perplexing and unsettling. They will potentially prevent researchers, scientists, and stakeholders from the seven identified countries from sharing their research at the May 2017 International Meeting for Autism Research (IMFAR) in San Francisco, California.  Nearly 25% of the 2016 INSAR meeting’s 2,000 attendees were from non-United States countries. About 30% of INSAR members represent non-United States countries. If the ban remains, it could prevent non-United States-based ASD thought and research leaders from attending future United States-based conferences. Furthermore, United States-based scholars from the identified countries who hold visas or green cards may not be able to travel to INSAR meetings when they are held outside of the United States. This will have a direct, detrimental impact on our scientific community, scientific progress, and those who benefit from the research that we conduct and disseminate. Ultimately, we believe that this will slow progress in understanding autism and related disorders and in finding more effective treatments to lessen disabilities for those affected.

As an organization, we must think carefully about whether to host future international meetings for autism research in the United States.  As an international society, it would be inappropriate to hold the largest annual meeting on autism research in any country that restricts access to our colleagues worldwide.

As the Board of Directors of INSAR, we are unanimous in our denunciation of restrictive immigration policies that will impact researchers, students, and persons with autism and their families. The INSAR Board of Directors will be bringing these concerns to the attention of policy makers and the public.  As members of INSAR, we encourage you to do so as well. This article also appears on the INSAR website.
Sincerely,

Geraldine Dawson, PhD
President, International Society for Autism Research
Duke University

Board Members:

Simon-Baron Cohen, PhD
President-Elect
Cambridge University

Craig Newschaffer, PhD
Vice-President
Drexel University

David Amaral, PhD
Autism Research, Editor
University of California, Davis

Francesca Happé, PhD
Past-President
Kings College London

Katarzyna Chawarska, PhD
Secretary
Yale University

Raphael Bernier, PhD
Treasurer
University of Washington

James McPartland, PhD
Past-Treasurer
Yale University

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!