Archive for 2014

Autism and Our Greatest Inspiration From 2014

Cheers to 2014!

Participants from a Cooking Level III class at the Alyssa Burnett Adult Life Center

While the rest of the world buzzes with excitement today, making plans for the evening, reflecting on the days behind us and raising a glass to what the bright New Year may bring, today I have a different vision of what it is we should be ‘cheers-ing’ to. Naturally, we are all compelled by the freshness a new year brings; new horizons for being better, having a clearer focus, ridding bad habits and welcoming new opportunities. 

Last night, as I sat down to reflect on my year, the celebrations, hardships, people and things, that made it so rich and beautiful, my staff sent me a Ted Talk called, ‘How autism freed me to be myself’, featuring Read full post »

Saturdays with Arthur

Arthur, my 15-year-old son, has autism and getting out the house for community outings can be a complex, demanding, stressful and unpredictable journey for both of us.  

Last year, on a gray December Saturday, Arthur and I were flopping around the house in our pajamas. The day wore on and we were feeling restless and confined. Arthur started to pace and gallop. 

A clumsy giraffe in my small kitchen. His way of saying, “not one more minute under this roof.”    

I remember this day because months before this, we had some very rough moments in public. The kind of day when we both return home traumatized. Tantrums in parking lots, meltdowns in bowling alley, aggression in Safeway, bolting in the museum, the sound of breaking glass in the gift shop, nibbling others’ French fries in the food court and sniffing strangers in the elevator. Keeping him safe, apologizing to others when necessary, and helping Arthur to understand the rules of social navigation was overwhelming. I started to wonder if we’d never leave the house—even if it meant terminal cabin fever.   Read full post »

Autism Spectrum Disorder and Down syndrome

Most people have heard of Autism Spectrum Disorder (ASD) and Down syndrome (DS) but many do not know that a child can have both. Today we discuss this dual diagnosis in an interview with providers and parents of children with both ASD and DS. 

Lynn: What do we know about the genetics of ASD and DS? Are kids with DS any more at risk for ASD than others? How common is the dual diagnosis? 

Raphael Bernier, PhD: You know, Lynn, I think what gets tricky when we talk about the genetics of ASD and DS is that the DS diagnosis is made (or can be confirmed) by genetic testing which reveals the presence of the third chromosome 21. In contrast, the ASD diagnosis is made strictly on behavioral observation. There are currently no genetic tests for ASD. 

However, we’ve made massive gains in our understanding of the genetics of ASD in just the past 10 years so this does provide some insight into the relationship between ASD and DS. For example, a couple of genes that keep popping up as ASD risk genes are located on chromosome 21 in the DS critical region suggesting a genetic connection between ASD and Read full post »

Gratitude in the Midst of Hardship

wordsofthankfulnessOne exercise that I learned in mindfulness training is to jot down the things I’m grateful for.  The point is to be aware that while difficulties are present in our lives, there are people and things that make the load a little lighter. This is not always an easy thing to do when I’m not feeling particularly thankful for sleep deprivation or challenging behavior. I do find it helpful though to consciously do this from time to time. 

At this time of year, we at Seattle Children’s Autism Center would like to call to mind the reason we are here – YOU.  While we wish we knew each other under different circumstances, we are keenly aware of how much better we are because of you and all who live with autism. 

I asked our staff what they are thankful for when it comes to the families we serve and this is what they said . . .

I am thankful that I am allowed to witness all the incredible strength and perseverance I see in our families. It inspires me to do more.  Jennifer Mannheim, ARNP 

I am so, so thankful for the opportunity to share in moments of growth with families. It is a privilege and a constant source of inspiration!  Jo Ristow, SLP  Read full post »

Upcoming Events and Activities for Individuals with Special Needs

As you plan your calendar for the next couple of months, please take a look at some of these great, local and free activities and events for families and individuals with special needs.

Singing-Snowman

The Arc of King County’s Latino Family Winter Party

Celebrate the New Year with games, music, food, friends and fun! All are welcome. This is a potluck event and you are encouraged to bring a dish to share. There is no cost to attend.

Saturday, December 6, 2014 from 10 am to 1 pm

Angle Lake Family Resource Center
4040 S 188th St.
SeaTac, WA 98188

Please contact Patricia Gonzalez at [email protected] or call 206-829-7027 for more information.

Sensitive Santa

The Outlet Collection will make its Santa area sensory friendly with lower lighting and quieter surroundings. Each family who attends will receive a free Santa photo and enjoy festive giveaways to commemorate the magical holiday Read full post »

Ten ‘Mistakes’ This Parent of a Kid with Autism Has Made Over the Years

Beginning with her diagnosis almost sixteen years ago, we’ve put forth a Herculean effort to help her to do and be her best. We’re human though and autism is hard so we’ve made mistakes. I also know we’re in good company because I see many parents doing what we did, all with the most noble of causes – to help our child.

We’re older and wiser (although not proportionally by any means!) now and can reflect on things we know now that we wished we’d known then. With that in mind, here are ten things we’d do differently that are offered not as criticism but as food for thought.

1. We choose a therapy or intervention with the goal that it will make autism go away.

While this is perfectly understandable and we probably all start off with this aim, having this global goal can make it difficult to accurately appraise the gradual progress that our kids tend to make. It can also lead to big disappointment when the optimal results aren’t achieved. Instead, focus goals on specific aspects of your child’s autism, the things that are most challenging. For example, more specific goals might be improving receptive vocabulary in speech therapy or reducing tantrums in behavioral therapy, improving social skills in social skills group. Here’s a tip for thinking about Read full post »

What This Parent of a Child with Autism Wants You To Know

Kat and ArthurParents of kids with autism love to talk about their kids. Just ask us! Each of us has our own story to tell and this is mine. Ask another parent and you’re sure to get a different perspective.

When I tell people my child has autism, I often wonder what they envision. Do they conjure up an image of a child “locked up in his own mind” looking blankly out at the world?

Or perhaps they imagine a “little professor” who has can list in a very business-like tone and in alphabetical order, the 400,000 species of beetles known to man. 

You should know that my child is not like Rain Man or Einstein.

Some children with autism may have savant abilities or have remarkable splinter skills but most do not have a special superpower. On the same note, not all children with autism have an intellectual disability. And having intellectual disability does not mean a child is not smart.  Read full post »

Study Shows PRT Taught to Parents in Group Setting Benefits Kids with Autism

Dr. Mendy Minjarez

Researcher and clinical psychologist at Seattle Children’s Autism Center, Dr. Mendy Minjarez, along with researchers at Lucile Packard Children’s Hospital Stanford, show in a recent study that parents, in a group setting, can learn Pivotal Response Training (PRT) to effectively increase motivation and language skills for their child with autism. Typically, PRT has been taught to parents in individual therapy sessions, but this research demonstrates that it can be just as effective when taught in a group setting.

In a previous blog, Minjarez describes PRT as a naturalistic behavioral intervention. She explains, “PRT utilizes the principles of ABA (Applied Behavioral Analysis), such as reinforcement, but also incorporates developmental principles, such as following the child’s lead in intervention. Rather than applying ABA principles in a highly structured way, as in discrete trial training, in PRT parents are taught to embed ABA teaching principles into interactions with their child to enhance learning.”

To read more about the study and PRT, please see Seattle Children’s blog On the Pulse.

Autism and Broccoli

broccoliYes, you read the title of this blog correctly. My colleague Katrina forwarded me an article with this headline: Broccoli Extract May Reduce Autism Symptoms. Being the discerning parent/provider that I am, I thought it was just another wacky autism-treatment idea so I didn’t run out to buy a boatload of broccoli, but I did go to one of my most trusted sources for all things autism to get his read on things. Here’s what the good doctor Raphe Bernier had to say.

Lynn: Tell us Dr. Bernier, what is your first impression of this study?

Dr. Bernier: Well, many of the intervention studies in autism have methodological flaws that make drawing conclusions difficult. This makes sense, conducting studies is costly and difficult. I’m not excusing, just explaining. However, this study addresses many of those methodological flaws: there is random assignment to a treatment or control group, there is a placebo condition, there are outcome ratings that are judged by raters who are naïve to Read full post »

Autism 101 Class This Thursday

Autism 101This Thursday will be the last Autism 101 class of the year. Autism 101 is a free 90-minute lecture, offered quarterly and designed to provide information and support to parents and families of children recently diagnosed with an autism spectrum disorder (ASD). Lecturers provide up-to-date and evidence-based information regarding the core deficits of ASD, the variability and presentation of behaviors associated with autism, prevalence and etiology, treatments available and resources for families. A portion of each lecture is dedicated to answering questions from parents and families.

Lectures are open to the general public. There is no need to register in advance to attend. Autism 101 will be held 7 to 8:30 p.m. at Seattle Children’s Hospital’s main campus in room RC.3.905 near the River entrance. Parking at Seattle Children’s main campus is free in Lot 1 for those who attend the lecture in person.

Lectures are now available through Seattle Children’s video and teleconferencing outreach program and can be viewed at various locations throughout Washington and Alaska. View Seattle Children’s video teleconferencing site information (PDF).

If you have any questions please call Seattle Children’s Autism Center at 206-987-8080.