Support

Obtaining 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

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!

Katrina and I first met Susan and her family in a parent support group here at Seattle Children’s Autism Center. Since then, we’ve observed her skillfully demonstrate a number of coping tools when challenges arose. Today we share how reframing has helped with adversity in her life.

Q: How do you define this parenting tool?

A: For me, Reframing is a parenting technique that means intentionally choosing my frame of reference.  It is important for me to view my parenting experience in relation to the person my son is rather than the person I thought he might be.  Before my son was born, I had ideas about what I would teach my child and what we would do together.  Those ideas assumed that my child would be typically-developing.  That turned out to be the wrong frame of reference.  I needed to think about hopes, goals, expectations, and celebrations that used my son, as an individual, as the reference. I would call this a child-centered framework.

Q: How did you discover this tool for parenting kids with ASD?

A: My brother and his wife have been my role models for using a child-centered framework for parenting. They have two typically-developing children, and they always honored their children’s unique personalities and looked at parenting as an opportunity to get to know their children and nurture and guide them.  They did not try to mold their children into some preconceived notion of success.

Q: How has this tool lessened your stress or made life a bit easier for you?

A: By reframing my parenting with a child-centered framework, I can celebrate my son’s strengths, which include a great sense of humor and a relentlessly positive outlook. I can also help him with his challenges, including repetitive scripting and slow academic progress.  Looking at our journey through the lens of my son’s unique personality and combination of strengths and challenges, I can see that he has steadily grown and developed.  Rather than seeing my parenting as continually failing to achieve the milestones of typically-developing children, I can see my parenting as supporting my son’s individual progress.

This does not change the fact that I sometimes long for the milestones celebrated by parents of typically-developing children. The community standards for the academic, social, and behavioral progress of typically-developing children do not apply to my child.  I go through cycles of that being sad and disorienting.

Q: Did you find that the more you used this tool, the better you got at it?

A: I suppose reframing has brought me to an important realization.  It has led me to think long and hard about what it means to have a “good” or “successful” life.  The things that have made me feel that my life is good or successful have been friends and family, good health, meaningful work, supporting my community, and enjoyable hobbies.  By that measure, my son’s life is good and successful.  Supporting and empowering him to continue to have a good and successful life is the focus of my parenting.

Q: What else would you like us to know about this parenting tool?

A: Reframing does not mean denial.  As I said, the fact that the typically-developing framework does not apply is still sad and disorienting sometimes. Reframing, for me, simply means viewing my parenting through the lens of the person my son is and with a focus on doing my best to make sure he has a good and successful life.

We’d like to thank Susan for sharing her coping tool with us and invite you to do the same. When we help others, we help ourselves.

 Humor In Darkness

 I grew up surrounded by laughter.  My family has always been a sarcastic and snarky group who would routinely laugh when one of us would trip or fall off our bikes, usually holding up the correct amount of fingers in order to judge the event.  Nine fingers was a success, three fingers would require us to try to fall harder the next time.  But nothing really seemed serious when you were laughing—my father in particular—would always make tongue-in-cheek remarks about things we saw on TV, witnessed at the park, or overheard at family holiday parties.  No doubt this helped form our future ability to find humor in almost anything, making difficult situations somehow easier to digest and helped us absorb the full situation before reacting.  I am always looking for the humor.  But I learned later in life, not everything is funny.

My son was diagnosed with autism in 2011, shortly after his second birthday.  My husband and I noticed that the happy and joyful child we had was introverting into his own world.  He would stare blankly out the window for hours, taking in the view while having his fingers spread wide open directly in front of his face.  He would move his hand closer to him, turn it, and then quickly stretch it back out, taking his time moving it closer again, a behavior we later coined “finger puppets.”  His ability to communicate with us seemed to come to an abrupt end and any time we tried to touch him, he would shudder as if our hands felt like broken glass against his sensitive skin.  We were at a loss and for the first time, I failed to find the humor in what was taking over my son’s life. 

When we received the diagnosis, we both felt immediate dread and a sense of loss. While not life threatening, autism is nonetheless crushing.  All we understood of autism was from movies and a few stories on the nightly news, but our personal knowledge was very narrow and naïve.  We attempted to find ways to deal with the new reality that was now our family’s forever.  Autism found a way to become the fourth member of our family, an unwanted guest in our lives.  My husband dove into reading books and articles on autism, trying to find answers and solutions.  I decided to stick my head in the sand and wait it out.  You can only imagine how well that went.

In the years since the diagnosis, our family has established an amazing team of doctors, nurses, therapists, teachers, parents and friends that have become an extension of our family, providing support, guidance and direction during difficult times and has greatly improved the quality of our lives.  We have been able to slowly reemerge, as a new family with our son, who is a little left-of-center, but always a joy to be around.  I was able to start seeing him for the person he was, and not the shell of who we thought he would be.  As he started to find words again and would venture out in public without covering his ears or having a meltdown, I started to witness some of the humor in autism.  Yes, it’s not funny as it’s written in the DSM-5 or discussed in the press, but it does have moments of hilarity and when it shows, it’s amazing.  I never appreciated the word “literal” until one day when I was singing “Five Little Monkeys” with my son.  As I began to sing, “Momma calls the doctor and the doctor says….” I pointed to my son to finish the verse and he looked at me and said, straight-faced, “HELMET!”  Can’t argue with that.  It was a moment that made me laugh and understand how he views the world, the literal boundaries and structure that is autism. 

I’ve found that through humor, I can also disengage socially awkward situations when they arise, and there are plenty—believe me!  One of my son’s favorite things to do is to explore the world using his mouth.  It took me a while to accept this as one of the sensory processing ways his mind adapts, and I’ve also developed a strong gag reflex as well.  While riding the subway home back in New York, my husband and I positioned our son’s stroller against one of the rails while we stood on either side of it.  We were having a conversation when we suddenly heard a woman scream, “Oh no!!  He is NOT licking that pole!” Sure enough, our son had stretched his little head out far enough to reach the pole and started to lick it up and down to gain the sensory input his mind craved. 

Initially horrified and worried about what he was ingesting, the gentleman across the aisle said, in a thick New York accent, “Well now, if we have nuclear fallout, your son and the cockroaches will be the only survivors.”  We all started to laugh, because honestly, what else can you do?  It was probably true and it was already done; the laughter defused the need to explain to a train full of strangers why our son did this.  We started to accept that he had a different way of exploring and gaining knowledge than we did.  Instead of trying to stop it, we allowed him to explore on his terms.  And we started to laugh again.  Our son has taught us that being different can be fun, it offers another way to view the world and we have released that constant worry about the things he can’t do, can’t say and can’t be.

Navigating this new world of autism with my son, I realized that my childhood full of laughter and not taking ourselves too seriously has probably served me better than if we had a dramatic or reactive family dynamic.  Flexibility in autism is difficult to find, but if you mentally keep yourself focused on what’s most important, it’s easy to laugh at the silly situations that we often find ourselves in.  Now when we see our son licking the neighbor’s dog, singing the latest pop song at full volume while at the library, or jumping and flapping his hands wildly while waiting in line at the airport, we just look at one another, shrug our shoulders and judge with the appropriate amount of fingers.  Sometimes, even on the three-finger day, autism can be funny. 

Courage, Intelligence, Support

When I first met Nikki, her eldest son had recently been diagnosed with autism and she was doing well adjusting. I was concerned about her though when her youngest son started showing familiar red flags and was also diagnosed. How would she handle adjusting to the realization that both of her children were on the autism spectrum? I know for certain, it was not easy, but she made it look so as I observed her in groups, skillfully demonstrating three powerful tools for coping. I asked Nikki to share more with us and this is what she had to say.

Q: How do you define this parenting tool?

A: Courage means taking the world on when it comes to your child. Being a strong advocate for autism and using social situations to teach people about what autism looks like. Standing up for your child in school and not hiding from autism. It’s here to stay and courage means you can become a veteran and help others.

Intelligence means using your gut instinct. You knew something wasn’t quite right and you used your intelligence to get a diagnosis. Whilst you didn’t want to be right about this you were and your common sense was right so use this for future instincts. Intelligence is realizing that you know your child better than anyone and when professionals try to educate you on your child, remember that you live autism 24 x 7!

Support means taking all the help you can get. A new diagnosis is tough, no – it is brutal. It requires us as parents to become super parents overnight. If you have understanding family and friends that offer to give you a night off, or time to finish a hot drink (we’re used to cold coffee anyway right?) or to go to the store by yourself then take it. Take all the help you can. You need to look after number one and by that I mean you, not your children. There’s a reason they tell you to fit your own oxygen mask first.

Q: How did you discover this tool for parenting kids with ASD?

A: I’ve always had courage; it’s from my Mom, however, this taught me a new level of courage. I also look to my “autism elders” and see that they are still managing things and that helps propel me forwards.

Common sense is something I’ve always had of course but I now have much more confidence in my gut instincts.

Support is something I have had to learn and that self-care actually became my sanity. Being around other autism moms turned my life around.

Q: How has this tool lessened your stress or made life a bit easier for you?

A: Courage doesn’t always make life easier, as you might have to have conflict but it ultimately means progress as I continue to advocate, and that makes me happy. Common sense or my gut instinct doesn’t necessarily make my life easier but means I have the tools to not over-analyze and to realize I am right – most of the time! Support 100% makes my life easier as I allow myself to lean on those around me.

Q: Did you find that the more you used this tool, the better you got at it?

A: My courage continues to grow as my children grow. Intelligence grows as the children grow too and I learn more and more about THEIR autism. Support – yes I continue to improve on taking and giving help.

Q: What else would you like us to know about these parenting tools?

You don’t have them all on Day One of your diagnosis (and you’re not meant to!). They come with time and experience. What helps is getting to know parents of children slightly older than yours. That gives you hope and guidance.

We’d like to thank Nikki for taking the time to share her coping tools with us. Many of you know her as the founder of Seattle Autism Moms, an online parent support/information group on Facebook and from her blog:  

• • Autism Moms of Seattle
  • Autism and Tea

Today we start a series aimed at building your parent coping toolbox, because we know you can’t have too many tools when it comes to the ongoing challenges that autism presents.

We’ll discuss finding meaning in challenges, using humor and humility in the midst of adversity, reframing challenges, surrender, grace, intelligence, courage, patience, and support – and perhaps a few more.

We also invite you to share the tools that work for you. At the end of the series, we hope we all have some new tools at the ready for whatever life hands us.

I’ll start us off with finding meaning in adversity. Keep in mind, this series will be written from each parent-author’s personal perspective and is not intended to reflect or represent any more than just that.

Life isn’t fair!

When bad things happen to us, we have a tendency to feel singled out and a sense of injustice surfaces. “Why me?” or “Why do bad things happen to good people?” we ask, and wonder what we did to deserve such hard luck or bad karma. Even smart people let superstition creep in when trying to make sense of difficulties. It’s curious that our brains don’t seem to put as much effort into wondering why good things happen when they do.

Some call it making lemonade out of lemons or finding the silver lining. Whatever you call it, we do know that whatever the difficulty, being able to find meaning in life’s challenges can help make them a bit easier to deal with, particularly with those things we cannot change.

Ironic, isn’t it?

My family’s story of autism had quite the twist of fate. It was 1981 when I moved to Colorado with a shiny new degree in hand, eager to save the world. I thought I wanted to work with kids.

There were just two problems with this plan: unemployment was sky high and it seemed everyone and their grandmother had a PhD plus twenty years experience. This meant I had three part time jobs, none of them with children. In one, I interviewed clients for a video dating club – and that is quite another story!

In another, I was a counselor in a new group home for young adults with autism. A forward-thinking mom of a teen bought a rambling house in the foothills and got it licensed. Six clients ranging in age from 20-40 moved in and we provided 24-7 care for them.

In college I had observed a classroom of children with special needs, including autism. It was fascinating for me to observe the same behavioral traits in adults that I’d seen in the young kids. I recall being perplexed by what, at the time, I’d heard about the cause of autism – these were children of supposed “refrigerator mothers”. This was a time when the “nurture” part of the “nature vs. nurture” debate was given greater weight. Genetics was years away from taking center stage.

As interesting as it was, this was not an easy job. We didn’t get much training in autism or how to handle behavioral challenges, which meant we did a lot of improvising and sometimes got hurt. I was a shy young twenty-something with little experience. Keep in mind, there was no early intervention at that time. These kids didn’t even have the right to go to school and their parents were told at diagnosis to place them in an institution. This is primarily where our clients came from. I left that job thinking very decidedly that this was too hard and that

 Autism is not my life’s work

Fast-forward to 1999, when my nephew was born with Down syndrome. My sister didn’t know prior to his birth so it was a surprise and an adjustment. Well-meaning people gave her lots of unsolicited advice including this from a friend who is a teacher’s aide:

Just be glad it isn’t autism

It was right about this time that I could no longer ignore the subtle but growing red flags that I was seeing in my baby girl. She stopped responding to her name. She stopped playing with toys and instead repetitively tapped kitchen utensils on the floor. I was hesitant to share this with my family. It almost seemed as if I was trying to one-up my sister. And those words kept reverberating in my head: Just be glad it isn’t autism. Autism is not my life’s work.

Well, as they say, you know the rest of the story. She was diagnosed that summer and it was devastating for us.

Finding meaning didn’t happen overnight. It also didn’t happen without effort. It was a conscious choice to move from the place where it was hard for me to share the simple joys of friends who seemed to have so much to celebrate, while we seemed to be hanging on by a thread. There were days when I’d look at people and wonder how they could smile and what they could possibly be happy about. Like a message in a bottle washing ashore from a troubled sea, I realized that staying stuck in strong emotions wasn’t going to help her or me. New thoughts popped up:

Why not me?

 I have what it takes.

I can do this.

How did I find meaning? The easy answer is through curiosity. I began asking myself questions about how and why I arrived at this point in my life. After some uncertainty in young adulthood, wondering what my purpose on the planet was, I felt certain that I wanted to be a mom and work in a helping profession. It would take many years before I would see how these two goals would dovetail. These are some of the questions I asked myself:

What skills do I have that I bring to this challenge?

 What other challenges have I handled well?

Who can I learn from in the areas where I feel unsure of myself?

I looked for parents who were one step ahead of me and gleaned what I could from them. After getting some experience under my belt, I began to volunteer as a mentor for parents new to the diagnosis and signed up for other parent projects. I soon realized that helping others helped me.

As they (once again) say, you know the rest of this story. For nine years now, I’ve had the honor of working alongside the best here at Seattle Children’s Autism Center, doing what we can to make life a bit easier for families. And for at least that long, I have known what my purpose on this planet is:

Be the best mom I can be

Help others

Not so shiny tools

“It’s funny: I always imagined when I was a kid that adults had some kind of inner toolbox full of shiny tools: the saw of discernment, the hammer of wisdom, the sandpaper of patience. But then when I grew up, I found that life handed you these rusty bent old tools – friendships, prayer, conscience, honesty – and said ‘do the best you can with these, they will have to do’. And mostly, against all odds, they do.” 

Anne Lamott, Traveling Mercies: Some Thoughts on Faith  

Have you found meaning in your challenges? Share your story with us!

Stay tuned for Part 2 of our series on parent coping tools.