Author: Lynn Vigo, MSW, LICSW

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!

Mindful Monday – Connecting in the Real World

We’re all so busy that it’s easy to move through our day without really noticing those around us. We walk down the street, phones in hand, spending more and more time in a virtual world.

We rush from one appointment to the next, barely acknowledging each other. It’s easy to come across as aloof or even a bit grumpy as we hide out and hang out behind our screens.

Here’s a quick and easy mindfulness practice to help us feel more connected in the real world:

Set an intention today to connect with someone in person. No phones or computers allowed! As you walk down the hall, stop and say hello to someone. As you walk down the street, smile at a stranger. As you approach a door, hold it open for the person behind you.

That’s it. Give it a try and you might find that your day seems just a bit better. And who doesn’t need that?

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.

Parallel Paths in Adult Transition

As a veteran parent of a child with autism, I thought I was prepared to handle just about anything as we approached her eighteenth birthday.

 

 

I had years of experience under my belt, locating, navigating, and accessing services for her and many others in my work.

I had my adult transition checklist: Apply for guardianship. Check. Apply for SSI. Check. Set up special needs trust account. Check. Check in with DDA case manager. Check. Look into residential housing options. Check. Everything was going relatively smoothly, which means I found my way through the mazes with a little more confidence and a little less stress than in years past. I had hit my stride, strutting my parental best-self, and moving forward.

And then the unexpected happened.

I was standing before a court commissioner at my daughter’s guardianship hearing. She was talking but my focus kept waxing and waning as I began to experience an out-of-body sensation. I was physically present but my brain felt as if it were up on the ceiling observing from above.

She was praising the fine job I’d done caring for Carrie the past 18 years. “Well, of course!” I thought. “I’m her mother!” Then she sternly looked at me and told me that from this day forward, in the eyes of the law, I was no longer her mother. I was her legal guardian – held accountable to the court. There would be records to keep and reports to file. My mind was playing tricks on me again. Of course I would be accountable. I’m her mother!

On my way back to the car, I tripped, ripping my pants and badly scraping my knee. I sat in the car, knee stinging and mind numb, and tried to make sense of what had just occurred. Why was I so unnerved?

Was it the finality of missed milestones or comparing her future as an adult to peers or her brother? No. I’ve never been one to compare her to others. Was I afraid I wouldn’t live up to the court’s expectations of me as her guardian? Nope. Not that.

This is what I came to: Her entire life, I’ve been her protector, her advocate, her teacher, her therapist, her supporter … her mother

And then one morning in court, I was not.

Nothing could have prepared me for that. This was the beginning of a shift that I realized was not just for her but for me as well.

Adult transition has proved to be as challenging as getting her diagnosis and initiating all the supports and services she has needed. It’s a lot of work and I’m 20 sleep-deprived years older than I was then.

Just as I didn’t want her diagnosis 18 years ago and would have liked to pretend it wasn’t happening, I don’t want to transition from her trusted pediatric providers – but I can’t pretend.

So, dear parents and pediatric providers, here’s my message to you as you approach adult transition for your child, your patient.

  • Don’t put off the inevitable until the last minute. Find out what the transition policy is for each of your child’s providers. It may not be the same for each department or specialty.
  • Perhaps you don’t know what resources there are for young adults in each specialty. How about exploring this together?
  • Dear provider, maybe you don’t feel it’s your job to have this talk with parents – but if not you, then who? Who better than the person we’ve trusted with our child for almost their entire life?
  • It’s likely that we’re both feeling anxious about this and wish we didn’t have to part ways. We’ve been through a lot together, problem-solving many challenges, and this is no different.
  • Partner together to make this less stressful and a better outcome for all.