The Autism Blog

Autism and Coping Tools for Parents Part 5: Humility

Most new parents will admit that no matter how prepared they felt going into childbirth, once baby arrived they realized just how much they didn’t know. Thankfully, there are abundant parenting resources to be found to help with everything from colic to diaper rash.

 

Parents of kids with autism however, get the award for “most humbling” parenting, as our learning curve is Grand-Canyon steep. We’ve yet to see a How To guide for handling the  daily dilemmas that autism brings.

Before autism, I was quite organized and thought that if I planned and worked hard enough at something, it would all work out. Was I ever surprised to learn how unorganized my life had become and that no matter how much I put my mind to the challenges, things often didn’t work out as hoped or planned. There were days I’d be reduced to a puddle of tears in the middle of my kitchen floor. As a social worker, I was skilled at locating and navigating resources for others but when it came to my own child, I found myself humbly amongst scores of “regular old parents” trying to make sense of confusing, hard-to-access services.

As a busy parent, you may not have time to see the benefits of humility but I assure you – they are there. Here are some that I’m aware of.

Realizing you don’t know it all  . . .

  • Allows you to ask for help, a good thing to learn, particularly early on in the diagnosis
  • Allows for curiosity, always helpful when trying to figure out our kids
  • Allows you to build a team for you child and your family- this is a team effort
  • Allows you to continue to ask, research, read, and explore possibilities
  • Allows you to share the difficulties and the successes with others
  • Allows you to become a skilled listener and to take the other’s perspective
  • Allows you to pick yourself up and try again – and again and again

What research tells us about humility and great leaders

Jim Collins is a business leader and researcher who wanted to know what is was that accounted for the differences between good companies and great ones. His team came up with a list of criteria for identifying the good (the comparison companies) from the great (Level 5). When they looked at all the variables that accounted for Level 5 companies, it wasn’t what you might expect of the leaders – that they were extroverted, aggressive go-getters. Quite the contrary, they were:

  • Calm
  • Determined
  • Unwavering resolve
  • Humble
  • Self-understanding and awareness
  • Openness
  • Perspective-taking

Sound familiar? Like it or not, as parent, you are the leader of your child’s team. Teachers, therapists, doctors, and other family members all look to you for direction.

In summary, don’t worry if you don’t have it all figured out. No one does! We do the best we can under difficult circumstances because we love our kids and would move heaven and earth to help them.

Here are some reminders for those times when you’re feeling less than confident in parenting:

  • We don’t know what we don’t know (so much is new and unpredictable)
  • Surrender to that truth
  • Stay open to learning
  • Calm always trumps chaos
  • Be aware of own strengths and limits
  • Put ourselves in the shoes of others
  • Ask for help and help others

“Before I got married I had six theories about bringing up children; now I have six children and no theories.”

  • John Wilmot (2nd Earl of Rochester, 1647-1680)

Is parenting your child with autism a humbling experience? Share your story with us. We’d love to hear from you!

 

 

 

 

Mindful Monday- Snippets from Shamash Alidina

I recently participated in a thirty-one day Mindfulness Summit, and a handful of presenters were my favorites, including Shamash. I liked his easy-going style and humor and I also just like saying his name. He, like most of the summit speakers, has taught mindfulness for many years and has a book on the subject. While I’ve never cared for the title of this book series, I did enjoy his Mindfulness for  Dummies and will share some of his mindfulness tips.

 Healthy & Helpful Attitude

Shamash tells us that attitude is an important part of mindfulness and that attitude is a choice. Being aware on the attitudes we bring to life – whether it’s marriage or parenting or our work or practicing mindfulness – can affect the outcome in so many situations. We all know people who seem to have a sour outlook on life. Life is not fair. No one has it as hard as I do. Nothing will ever change. Nobody understands. Why do bad things always happen to me? No one likes me. They seem eternally stuck in unhelpful attitudes.

 Shamash identifies these helpful attitudes that are the foundation for a healthy life:

  1. Acceptance – not giving up but allowing thoughts, feelings, sensations to exist without resistance
  2. Patience – listen more than you talk, choose the closest rather than the shortest line
  3. Seeing afresh – try looking at common things with new eyes – what have you missed?
  4. Trust – believing that both joys and challenges are temporary/ to be expected helps build trust that things are okay
  5. Curiosity – ask lots of questions about thoughts/feelings/sensations “I wonder what this is about?”
  6. Letting go – First realize what you’re holding onto. Doing so helps to let it go.
  7. Developing kindness – non-judgment of self and others
  8. Appreciating Heartfulness – pay attention to whatever brings you warmth and happiness
  9. Gratitude – even if not perfect, acknowledge the good there is to your life
  10. Forgiveness – for self and others – acknowledge being human and that we all are imperfect

 

 Now imagine the opposite attitude of some or all of the above. Identify which of these attitudes you might need a little work on. See if it makes a difference.

Multicultural Issues and Autism Spectrum Disorder – This Month’s Autism 200 Class

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This month’s Autism 200 Series class “Multicultural Issues and Autism Spectrum Disorder” will be held Thursday, September 15, 2016, at Seattle Children’s Hospital in Wright Auditorium from 7 to 8:30 p.m. These classes are designed for parents, teachers and caregivers. The topics associated with the majority of classes are applicable to all age ranges and for a wide variety of children diagnosed with autism. This class will be led by Robin Tatsuda, MSW, ARC of King County & Sayaka Omori, M.Ed, Open Doors for Mulit-Cultural Families.

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!

 

Autism and Ultrasound

Columbus3.docxThis  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, and scientists  – 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 that identified a connection between exposure to diagnostic ultrasound in the first trimester of pregnancy and 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 (one 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. Given the way this study was designed, this question cannot be 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 (repeat studies).  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 replication. We can only keep filling in the landscape if we continue working together. As we’ve said in other studies on autism, we recommend a healthy dose of caution along with curiosity when reading about this study.