The Autism Blog

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!

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.

 

 

 

 

 

Mindful Monday – Do Overs

Have you ever thought back to a difficult time in your life and wished you could go back and do it over? That’s likely because, as Dr. Rick Hanson tells us, our brains tend to be like Velcro for the negative and like Teflon for the positive.

How we remember an experience (and how we perceive an unfolding experience) has much to do with what we choose to pay attention to. 

Before you say yes to that do-over, try this exercise:

Think of one of the biggest challenges you’ve had in your life, one that was so difficult you thought you’d never get through it. Now ask yourself this: Did anything good come of it? Did I learn anything about myself or life? Am I stronger, wiser, more resilient? Did this challenge lead in a direction I might not have otherwise taken? 

In paying attention to possible positive aspects of the experience, you are shifting your attention, reframing the experience. That doesn’t mean ignoring the difficulty or pain. It simply means broadening your view to include any positives that may have come of it. Keeping in mind that adversity is our common humanity, doing this helps keep perspective.

Try broadening your view to current challenges to include any possible positives, keeping in mind those past experiences.

The glass is, after all, both half-full AND half-empty.