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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

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!

 

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.

 

Education Opportunity – Certificate Program through the University of Washington

Certificate3About a decade ago Dr. Felice Orlich and Dr. Raphael Bernier were discussing the challenges facing the autism field because there just weren’t enough experts out in the community to support families affected by autism. So, Dr. Bernier, while a doctoral student at the University of Washington, applied for and was awarded a Huckabay Fellowship to support his efforts to develop a graduate level educational program focused on autism. After a few years (there were lots of other things going on at the time…finishing graduate school, doing residency at UCLA, setting up a research lab, etc, etc), Dr. Bernier was able to implement this program through Professional and Continuing Education at the University of Washington.

The Certificate Program, Autism Studies: Theory and Practice, as it is now named, is now in its third year. The first two years were very successful and the team of instructors is enthusiastic about this third year.

The program is a 3 course, graduate level certificate program that provides comprehensive education about autism spectrum disorder from both the scientific and practical perspectives. Over the course of the year students explore how cutting-edge research informs our understanding of autism and the most effective approaches for autism treatment and education. The program is designed for those who live with, work with or support people impacted by autism spectrum disorder.

Each of the three courses is provided either in classroom format or an online format for individuals unable to attend in person on the Seattle UW campus. For students attending class in person, you can engage face to face with your classmates and instructors as part of a highly interactive curriculum. Assignments and other course materials are delivered through Canvas, a web-based learning management system that also serves as a communications hub. For students attending online, Courses are streamed online in real time from the classroom. You interact with your instructors and fellow students via chat, using Adobe Connect web conferencing software. Assignments and other course materials are delivered through Canvas, a web-based learning management system that also serves as a communications hub.

For more information about the program .

Or, watch this short video.

What started as a thoughtful conversation between a student and mentor nearly a decade ago has transformed in the past few years into a cutting-edge educational program that helps bridge our understanding between science and practice—and all focused on autism.

 

Autism and First Responders

 

 

 

PoliceLast week I received this comment on our blog about Dads and Autism:

“Ben’s Dad here. I really connected with the above article and others’ reaction when they got the diagnosis. I think my concern for my son was (and still is to some extent) about his safety. My son is really high functioning, but when he was first diagnosed I heard of all kinds of horror stories of kid with autism eloping. I had a friend whose son had autism and they had to put an alarm on the door because he would leave the house at night. They said they found their son one night on the entrance to a freeway. As my son began to grow and develop I became less concerned because he seemed to cope well with change and could adapt. Now that he is 11 my main concern is his interaction with others especially the police. My son is African-American and my concern is that if he is approached by the police and they request something of him (i.e. put your hands up, freeze, etc.) and he is unable to understand he may be perceived as resisting. I continue to guide him and instruct as best as he can comprehend, but I am still concerned for his safety and well-being emotionally and physically. Thanks for allowing me to share.”

The next day my colleague Katrina shared with me a nerve-racking video of a teen with autism and his behavior therapist in a tense situation with police in Florida. The young man had run away from his group home and his therapist went after him. Cell-phone video shows the therapist identify himself and the client, follow police instructions to lie down and put his hands in the air, explain that the teen had a toy truck in his hand. The teen doesn’t respond to the therapist telling him to lie down too as instructed by the police. The therapist is shot three times by police and the teen is handcuffed and taken away. The worst nightmare for many a parent of a teen with autism.

What can we learn from this incident? Is there a way to avoid or prepare for something like this?

While there’s no way to prepare for every possible incident, there are steps parents can take to increase awareness. When our daughter was young, she would oh-so-stealthily sneak out of our home to neighbors’ homes. She knew exactly where Miss Linda’s cookie jar was. We made a point of getting to know our neighbors and asked for their help if they ever saw her outside of our home without an adult. For older kids, particularly young adult males, it may be a good idea to get to know the local first responders in your area. I know several parents who are on a first name basis with theirs. If your child lives in a group home or supported living, you might want to make sure staff have a recent photo and information sheet about your child at the house, in the car, and in their backpack. For more on safety ideas, check out the following:

Smart911 allows you to develop a detailed profile of your family members that pops up when a phone linked to it is used to call 911.

ID cards

The Big Red Safety Box

Booklet for First Responders

Here’s one mom’s story from the Seattle Times.  

What measures have you taken to keep your child safe and to inform first responders of their diagnosis and behavior? Share your ideas and stories with others!

 

Planning A Trip To An Amusement Park With Children On The Autism Spectrum

summer-road-tripGuest author Sean Morris became a stay-at-home dad after the birth of his son. Though he loved his career in social work, he couldn’t pass up the opportunity to get to spend more time with his kids. He enjoys sharing his experiences via LearnFit.org and hopes writing for the site will help him provide other parents with tips and advice on juggling life, career, and family.

Planning a family trip can be stressful for any family, and for parents of children on the autism spectrum, there are many other things to take into consideration when it comes to packing and preparations. When it’s time to plan a vacation or a trip to a theme park, there are several things you can do to make things easier on everyone if you know where to look and how to start.

Before you leave

If your child has comfort items, such as a favorite stuffed animal or blanket, either refrain from washing it just before the trip or wash it weeks ahead of time. That way, they can bring something from home that smells familiar.

Hit the dollar store for books, coloring books and crayons, puzzles, and other small activities that your child can bring on the trip. If they get lost or broken during your vacation, it won’t be such a big deal.

If your child is a visual learner, buy some stickers and use them to mark the days on the calendar to show them how much time you have before the trip. It’s also a good idea to show your child photos of your destination, or colorful maps that will help them see how far you have to drive or fly. Talk about the trip with them so they’ll have an idea of what to expect.

Stock up on favorite snacks and drinks for the trip, especially if you’ll be in the car, so your child will have something familiar to eat. This will help incorporate something from the usual daily routine into the trip

Do some research on the park(s) you’ll be attending to find out if they offer special discounts or amenities for children with special needs. Some larger parks allow families to move ahead in line with a special pass so they don’t have to make their child stand for hours in a big crowd. If your child is young enough to use a stroller, make sure the park doesn’t have rules about which days you can bring one. If they’re older, you might consider renting a wheelchair so they’ll have a place to sit and rest.

Plan for what your child will need

No matter how many family members are going on the trip, it’s best to plan as much as possible for your child’s specific needs and communicate them with everyone. If your child is at ease and comfortable, it will make for a much easier trip for the entire family.

If using public restrooms is an issue for your child, consider taking them to places close to home–such as the library or a children’s museum–and asking them to “practice” using the potty there. This will make using the bathroom while on vacation much simpler.

Have an ID made for your child to keep in his or her backpack in case you get separated.

If sleeping away from home might be an issue, consider bringing your child’s pillow and blankets from home and stock up on foods that will help them calm down after a long day of excitement.

Be prepared for frustration

Every parent experiences at least a little frustration while on vacation. It’s inevitable, so don’t feel guilty. Heat, exhaustion, and dealing with crowds can make anyone cranky, and when you have children to worry about and keep safe it’s hard to remember to just have fun. Allow for some extra time each day to get things done and don’t feel bad if you don’t get to everything. Your child will look to you to learn how to react to every situation, so try to stay calm and ask for help from family members if possible.