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A Social Story From Seattle Children’s Autism Center

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December. A month that for many brings holiday cheer, visits with family and friends, bargain shopping, twinkling lights, festive carols and songs, new memories, extra fun and novel experiences.

For others, it is a month filled with overwhelming family gatherings, endless shopping lists, crowded stores, bright lights, overplayed jingles, disrupted routines, and extra stress and chaos. In effort to support your children, and family, during the holiday buzz, try reading the social story “Celebrating the Holidays.” This interactive story allows you to talk with your child about the holiday(s) your family celebrates, and to write in your specific family plans to help prepare your child. You can download the holiday powerpoint presentation here Celebrating the Holidays Social Story.

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In His Own Words: An Interview With Trevor

bannerWe’d like to introduce you to our guest for today’s blog. Trevor is 23 years old and is the Media Director of his family’s business, Consetta Group.

 

 

Lynn: At what age were you diagnosed with ASD?

Trevor: At age 5

Lynn: Do you recall what and when your parents told you about your diagnosis?

Trevor: It was more I heard here and there growing up from my parents that I had autism, except for years I didn’t even know what it was. So the fact that I knew I was autistic had no effect on my childhood.

Lynn: Did you participate in any therapies such as ABA or speech or occupational therapy?

Trevor: Yes, I had speech therapy when I was little, and from Kindergarten through sixth grade I had extra accommodations through my school to help with social skills. I had these same types of accommodations in middle school and high school to focus on my academics, and in college I had occasional accommodations to help me in test taking.

Lynn: Did you participate in special education in school? Were you in an inclusion classroom or a contained classroom?

Trevor: The special accommodations I mentioned above during grade school were set in a separate room from my usual classroom, and was with one or two other students on the spectrum. I had none of this in middle school, but in high school I was placed in a special class to help students struggling with their grades.

Lynn: What has been the most challenging part of ASD for you?

Trevor: Making friends. It was never a problem for me in middle school or grade school, as I never had much of a desire to make friends. It was in high school and on to today where it became a desire and struggle for me.

Lynn: What do you think helped you the most with this challenge?

Trevor: It was mostly a matter of trial and error. The more people I met with, the better idea of who I wanted to be friends with. Eventually the right friends came to me, and they helped me to learn what being a good friend is about.

Lynn: Do you know young adults who have severe ASD?

Trevor: I know of several young adults with severe ASD, but none well enough to give a knowledgeable description about.

Lynn: If so, how do you think “your ASD” and “their ASD” are similar or different?

Trevor: Everyone’s story is different. I have never met two cases of ASD or Down syndrome that were exactly the same. One may be nonverbal, one may be more independent. It’s important that we not categorize between levels of functionality, because they are limitless.

Lynn: Do you think you have an understanding of how someone with severe ASD experiences/processes the world?

Trevor: I honestly do not. In order to know how someone experiences the world, you have to step in their brain for a day.

Lynn: What do you think about the idea that ASD isn’t a disability but a difference in thinking or personality?

Trevor: I think that it is unacceptable how few people grasp this concept. While people with disabilities may not be able to do commonly acceptable tasks such as writing, talking, or living independently, they still have so many other abilities involving the mind that others would only dream of having.

Lynn: When you think back on growing up, what do you think the adults in your life got right?

Trevor: That we need to respect and obey our authorities, for they are our role models.

Lynn: When you think back on growing up, what do you think the adults in your life got wrong?

Trevor: Their priorities in what I need to learn in school were all wrong. They try to say, “If you don’t do well in this subject you’ll never get a job!” But from what I now can tell, there is a profession for everyone big or small, even if it’s just putting labels on jars like I heard one person with ASD does for a living.

Lynn: There’s so much about ASD that we still don’t understand. What is your hope when it comes to current efforts at understanding what causes it and how we help those affected by it?

Trevor: We should not be worried about what causes it, because that immediately sets us into a mindset that autism is a curable disease. Our focus must be on how we can help children with ASD to know what their strengths are, and how to use them. I also would like to see the educational system accommodate itself to fit in with what the student is genuinely great at doing.

 

Trick or Treat at the Autism Center!

 

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Trick or Treat at the Autism Center!

Seattle Children’s Autism Center holds an annual Trick or Treat practice party in the welcoming halls of the Autism Center. A (very) autism-friendly event for the entire family. Bring friends! All welcome at this relaxed fun-filled event designed for your family. 

 

Come enjoy door-to-door trick or treating, costumes, treats, games, prizes, and our memorable sensory room.  Dr. Travis Nelson from  The Center for Pediatric Dentistry will be on hand with toothbrushes and non sugar goodie bags.  Saturday Oct 29th from 10 am – noon.  Seattle Children’s Autism Center  4909 25th Ave NE, Seattle 98105.  Plenty of parking in front.  Lots of volunteers to play with your goblins.  Come feel at home in the hallways of the Autism Center. 

Hope to see you there! 

 

 

 

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

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

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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!

 

Ask Dr. Emily- Dealing with Major Life Changes and Predicting Outcome

Welcome to the August edition of Ask Dr. Emily! We often receive questions that we want to share with all our readers. To help with this, Dr. Emily Rastall, a clinical psychologist at Seattle Children’s Autism Center, will share insights  in a question and answer format. We welcome you to send us your questions and Dr. Rastall will do her best to answer them each month. Send your questions to theautismblog@seattlechildrens.org.

Q: While this is an absolutely wonderful article for daily activities, I am wondering if there is an article of the same level of information for major life changes. My son is 18 and is high-functioning autistic, OCD, anxiety disorder as well as ADHD. We recently moved into a new house, school ended (he is homeschooled), his brother and sister-in-law moved into our home with our grandson, and he just had another surgery that resulted in a pulmonary embolism and a 6-Day Hospital stay. Needless to say, he is very upset and exhibiting aggression as well as temper tantrums and wild mood swings. I have tried spending extra time with him and validating his jealousy as well as his anxiety. He has a tendency to go nonverbal when his stress becomes too much, He not only has done this but has started his tics again. Please help if you have any ideas on what we could do for him.

A: Let me start by acknowledging how much you and your family have been through recently.  As we know, humans, in general, like to know what is coming—what is next. Children, in general, respond to change and/or major life events (like loss, moves, change in school) in various ways; responses can include irritability, despondence or withdrawal, challenging behaviors (such as noncompliance and/or aggression), and/or emotional lability (e.g., tearfulness, outbursts). Children with ASD, specifically, may also demonstrate increased repetitive behaviors, increased sensitivity to the environment, outbursts, or aggression.

So how can we help kids (and children with ASD, in particular) through some of these major life changes? Many of the strategies recommended for day-to-day activities (mentioned in a prior blog) can also be helpful for big life events. I am encouraged to hear you mention more one-on-one time and validation as strategies you have tried; these are great relationship builders and can lead to positive outcomes. In addition, if you have time to prepare for life events, using social stories, pictures, practice, and preparatory exposure can be helpful. In addition, allowing extra time (if possible) for adjustment can be beneficial. We also want to provide as much structure as is possible (e.g., checklists, visual schedules, breaks). In addition, it can be helpful to keep as many things the same as is possible. For example, if changing schools, keep the same backpack, lunch items, and/or morning routine. If staying overnight in the hospital, having blankets/pillows/stuffed animals/foods from home can help to ease discomfort.

Ultimately, even when you go to great lengths to ease difficult situations, change in routine and major life events are difficult to cope with–period. A little understanding (and reframing our negative thoughts to more tolerant ones) can go a long way. Parents, don’t be afraid to ask for what you need in terms of support, too. In the end, children look to us for feedback about how to feel about situations. The more support we can get to cope with our own emotions, the better off everyone will be.

Q: I have a 5-year-old daughter on the ASD spectrum. She can repeat what you say (though not clearly) and has mastered some questions. She will also answer when asked a question (like, “What’s your name?” or “How old are you?”). Do you think she will speak spontaneously (i.e., communicate on her own) someday?

A: While I cannot predict outcomes, there are some good indicators out there that are associated with improvements in language functioning. First, we know that early evidence-based intervention (like speech therapy, behavioral intervention) often leads to more positive outcomes in language and overall functioning later in development. Second, we know that language skills build on one another. So mastery of early language fundamentals (like babbling, word approximations and single words) can lead to more sophisticated language skill development (like phrase speech, sentence speech, and spontaneous language more broadly). Finally, we know that using visuals (like pictures) to assist individuals in communicating can lead to improved communication outcome.  Bottom line, continue providing therapeutic  support for language growth, and she will show us what she can do.