General

All Articles in the Category ‘General’

Patients with Autism in the Emergency Department (ED)

Going to the Emergency Department (ED) with any child is unnerving. Taking a child with Autism Spectrum Disorder (ASD) is even more so with all the complications that autism brings. Waiting is hard. Explaining baseline behavior is too.

There are many unknowns with kids with ASD such as unusual reactions to medications and elevated behavioral responses to procedures as simple as blood pressure and temperature. In addition, parents face the scrutiny of everyone within earshot of our kids who frequently are loud and draw lots of attention. We feel the stares and we sense the judgment. We’ve been here before in the grocery store, the restaurant, and yes, even at Seattle Children’s Hospital as we wait along with others for services.

Will your child ever need to go to the Emergency Department? Hopefully not but you might be surprised to learn how common a trip to the ED is for ALL kids, including ours. Given that, is it possible to be prepared ahead of time? For answers, we went straight to the source with Seattle Children’s Emergency Department staff. We have also included a handy glossary of terms that you may encounter in an ED visit. If a provider uses a term you are unfamiliar with, don’t hesitate to ask for an explanation!

How many children and adolescents with ASD do you see in the ED?
• What are some of the concerns that families bring to the ED?

 

• What are some of the common challenges that occur for patients and parents in the ED?
• What are some of the common challenges that occur in the ED for providers serving patients with ASD?

 

• What can parents do to prepare before their child has reason to need a visit to the ED?
• Upon arrival in the ED, what can parents do to lessen the stress for all?

 

• What has been done at Seattle Children’s to lessen the stress for patients and families in the ED?
• What do you want patients with ASD and their parents to know if they need to see you in the ED?

Glossary of Terms You Might Hear in the ED

Attending: a physician/medical doctor who is in charge of your care and supervises trainees such as residents and fellows.

Resident: a physician/medical doctor who practices medicine in a hospital or clinic under the supervision of an attending physician.

Fellow: a physician/medical doctor who has completed residency and has chosen additional training in a specialty or subspecialty and practices under the supervision of an attending physician.

Labs: usually refers to a blood draw, urine or stool sample for diagnostic testing

Triage: the process of determining the priority of patients’ treatments based on the severity of their condition

Medication reconciliation: the process of updating the record of current medications

Imaging/Scans: refers to diagnostic procedures such as MRI, CT, X-ray

NPO: nil per os – Latin term meaning nothing by mouth (food or liquids)

PRN: pro re nata – Latin term meaning as needed or when necessary

Tips
• If you are concerned that your child will resist doing something in the standard way, ask if it is possible to do it a different way. I recall an ED visit with my child in which an X-ray was needed. She would not lie down for it so we tried it standing up and it worked. This won’t be possible in every single case but it’s always worth asking.
• Providers in the ED are always busy and won’t always have time to check your child’s chart if they are patients at Seattle Children’s. You can help by having answers ready to some key questions. Take a look at this card we use at our Autism Center.

We hope that your child never is in need of an emergency department visit. It’s always good to be prepared, so just in case bookmark this blog!

Why Do Kids With Autism Do That? Part II

legosAnd here is Part II of our most popular blog!

To date, our most popular blog is Why Do Kids with Autism Do That? Not surprising I suppose, as we are always trying to figure out why our kids do what they do. We gathered more puzzling questions for our panel of providers and invite those of you who offered your own insight and perspective last time to join in. This time we asked Brandi Chew, PhD, Jo Ristow, MS, CCC-SLP, and Soo Kim, MD to share their thoughts and this is what they had to say.

Why do some kids with autism . . .

Learn unevenly – seem to take one step forward and then one back

Jo: The answer to this question could fill a book! In my practice, I see a lot of this unevenness when kids have difficulty translating (or generalizing) learned skills to different people, environments and items/activities. For instance, I’ve seen kids learn that they can touch a photo on the iPad to activate voice output and request a Skittle, but then not be able apply that learning to touching different photos Read full post »

Why Do Kids With Autism Do That?

To date, our most popular blog is Why Do Kids with Autism Do That and most of the questions that Dr. Emily gets pertain to the often perplexing behaviors our kids are known for.

This week we bring back this favorite in a two part series. If it prompts a question or two on your child’s behavior, send them our way and we’ll put them in Dr. Emily’s queue!

When my kids were young, my son Justin was quite curious about the many odd mannerisms his sister with autism demonstrated.

We welcomed his questions as well as those from his curious neighborhood friends who we were determined to include in our friendly and oh-so-unconventional home. I did my parental best to offer up ideas as to why she does what she does, and thankfully they didn’t question me or ask to see the evidence behind my hypotheses.

We asked a panel of providers to give us their best answers as to why our kids do what they do. Shelley O’Donnell is an Occupational Therapist specializing in children with autism at Seattle Therapy Services. Jim Mancini is a Speech Language Pathologist and Emily Rastall is a Clinical Psychologist, both at Seattle Children’s Autism Center. Read full post »

In a Different Key: The Story of Autism by John Donvan and Caren Zucker

When my daughter was diagnosed in 1999, I read every book written about autism. That wasn’t difficult to do back then but today it’s a different story. There are so many books on the subject that I don’t think I’d know where to begin if I got the diagnosis today.

 

While I don’t feel the need to read everything autism these days, I thoroughly enjoyed and appreciated this book and wanted to share a bit of it with you.

First, the authors’ personal connection to autism: Caren Zucker’s oldest son has autism as does John Donvan’s brother-in-law. They both are award-winning news journalists who obviously did their homework in researching the history of what is now the most common developmental disability.

Their history starts in the 1930s with Donald Triplett, the man from Mississippi who was “Case Number 1”, the first diagnosed with autism by child psychiatrist, Leo Kanner. While chock-full of historical facts and figures, it is the stories used to chronicle autism’s history that grabs attention and hearts. It reads like a page-turning novel even though we know the story and that there is no surprise happily-ever-after ending.

At times it was difficult to read about the early days of institutionalization and punishment as treatment and of course, the theories that blamed “refrigerator mothers” for causing autism. Equally difficult is the realization of how glacially slow science has been in answering the same questions Mr. Triplett’s parents asked: what caused this and how do we best help our child?

The best aspect, by far, of In a Different Key is the validation of the Herculean efforts of parents to advocate for the needs and rights of their children. Theirs is a civil rights story that humbles the fiercest of advocates today, considering where they started and how much they accomplished. I turned the last page feeling a debt of gratitude to those who came before us, and a realization that, with each generation, we carry and then pass the torch.

Solar Eclipse – A Social Story and Fun Tips

In this blog post, Research Associates Kira Hamer and Emily Fox offer some suggestions on how to prepare yourself and your child for the eclipse, as well as some fun activities to do in the Seattle area while it is happening!

On August 21st, 2017 we will have an amazing opportunity to see an almost complete solar eclipse. This is a once-in-a-lifetime experience. While we aren’t directly in the path of the eclipse (you have to go to Oregon for that), we will experience almost total darkness at 10:30 am when the moon passes in front of the sun! Many of us might find this experience and the science behind it incredibly exciting, but for some individuals, this event could be confusing, a little frightening, and disrupting to our routines.

Here is a social story to help prepare your child for the Solar Eclipse: I am going to see a solar eclipse!

Here is what the eclipse will look like in Seattle: http://bit.ly/2uC1FlT

Facts about the solar eclipse: http://bit.ly/2tm5aKK

How to Protect Your Eyes during the Eclipse

First and foremost: looking directly at the sun without special eye protection can cause serious damage, so always protect your family’s eyes with solar glasses if you want to directly observe the eclipse. According to space.com, there are four companies that meet NASA standards for solar glasses. These are Rainbow SymphonyAmerican Paper OpticsThousand Oaks Optical, and TSE 17. Your local library may also offer free eclipse glasses! It is important to note that sunglasses are not a replacement for special viewing glasses. If you are unable to find special glasses, another way to view the eclipse safely is to build a pinhole camera. A pinhole camera projects sunlight through a small hole in a box onto the other side of the box, so that you aren’t looking directly at the sun. You can find instructions for building a pinhole camera here.

How to Prepare Your Child for the Eclipse

Like any new experience or change for a child, it can be helpful to practice what you might do the day of the eclipse or to talk about what might happen. Here are some tips to help you and your child prepare:

  • Introduce your child to the solar eclipse using a social story. You can find an example attached. It may be helpful to read the social story several times a few days in advance of the eclipse.
  • Use a stopwatch or a timer to help your child know how much time is left in the eclipse. In most locations, the total eclipse will likely last 2-3 minutes.
  • If you are using solar glasses, help your child practice wearing these glasses so that they can get used to how they feel on their face.
  • Make sure you and your child are wearing sunscreen if you will be outside!
  • If you are worried that being outside during the eclipse will be frightening for your child, watch the eclipse in a different way! NASA will be live-streaming the event, and your child may be more comfortable watching the eclipse inside at home.
  • During the eclipse, the temperature will drop significantly and rapidly. If your family will be outside, plan on bringing an extra coat or a blanket.
  • The sudden darkness during the day will likely create increased traffic. It may be helpful to either plan on staying home for the duration of the eclipse or to get to your viewing spot early. If your child has to attend camp or a school program on the day of the eclipse, you may need to warn them that the drive could be longer or you might have to drive on a different route.
  • Make the experience fun! Color pictures of the sun and the moon, get a book from the library about space and the planets or take photos of your family on the day of the eclipse. Help your child understand that this is a special and exciting day in science.

Fun Eclipse Activities

Several local libraries and community centers are hosting viewing parties with eclipse activities for families (e.g., Seattle Public Library High Point Branch, South Park Community Center, Bryant Neighborhood Playground).

  • Some libraries will also show a live-stream of the eclipse from NASA.
  • The Pacific Science Center will open at 8:30 am on the day of the eclipse, and education staff will walk guests through the science of eclipses.
  • Do-It-Yourself Time Capsules are a great way to help you remember where you were during the eclipse. You can include letters to yourself, photos, drawings, and more.

The eclipse is a great opportunity to help your kids become real scientists! NASA is asking people in the viewing area to report on what they see and experience. The GLOBE (Global Learning Observations to Benefit the Environment) Observer Eclipse App can be downloaded on your phone and guides you through how to make observations. NASA is hoping to have a million eclipse viewers contribute their findings!