Ten years ago, as a new employee in the department of Psychiatry and Behavioral Medicine, I was asked by a colleague to present with her to a group of trainees.
She was to cover diagnostic evaluations and I was tasked with discussing the impact of autism on families. How on earth would I manage to accurately capture the daily challenges that often are not observed in brief clinic visits?
My hope was to help them to “get it” meaning to see just how difficult it was.Short of suggesting we hold the session in my home for a first-hand look, I decided to make a video I called, “A Day in the Life with Autism” 24 minutes representing 24 hours in our unconventional life. It was well-received and since then I have been asked to share it with many different providers and students at Seattle Children’s and the University of Washington.
So much has changed in the past decade that it felt time for an update. This time though, I wanted to capture the bigger picture of our life and the lessons learned not only for providers but for parents who walk this path too.
Parents of kids with autism typically are told that we do not know the cause of it. For some, we eventually do and often it is at the insistence of parents that we figure it out.
Sandra Sermone knew there was “something” with her son and persisted in finding clues and then answers to what “it” is – a rare genetic condition that underlies his autism diagnosis. Taking matters into her own hands, she found a researcher in Israel to help and formed a group of fellow parents whose children have this condition. From there, she began to look for common denominators amongst their children. To read more of Sandra’s incredible efforts, check out these links to her scientific paper and a news story on her family:
News Flash: The April edition of The Autism Blogcast, featuring autism experts Raphael Bernier, PhD and James Mancini, MS, CCC-SLP.
In an effort to keep you up to date on the latest news in research and community happenings, we welcome two of our favorite providers best known as Jim and Raphe, the autism news guys.
These two have too much energy to be contained in written format so our plan is to capture them in 2-5 minute videos that we’ll post the first week of each month. We welcome your questions and comments. Tell us what you think of our dynamic duo!
In this edition of the Blogcast, our reporters discuss autism awareness activities in the Seattle area, and prevalence rates.
Q: My 6 year old with ASD has all of a sudden started to ask for the sun to go away, she is saying Autumn is not over and tell the sun to go away. My daughter never had an issue with the sun in fact she loves it and would often sit with the sun on her face. I know it could be an event coming up she relates with Spring or it could be a number of things. They are teaching them the change in Seasons in school at present. Help would be much appreciated with this.
A: Any way you look at it, change is hard. Change is especially hard for the autism brain, which relishes in structure, the predictable, and the known. The world, however, is in constant motion, so my guess is (and this is only a guess) that your daughter may be reacting to the conflict between what her brain likes (consistency) and the lack of that in the universe. Your first step may be to simply validate what your child is feeling. You might say something like, “It sounds like you’re feeling ___ about change. Change is hard, isn’t it?” You might then offer your support by saying, “You know I’m here to help if you need me. I have lots of ideas about how to feel better when things are hard.” Finally, you might offer some ideas about how to cope; deep breaths, distraction, and visualization of a “happy place” are some basic coping strategies you might model and describe (e.g., “I’m going to take a deep breath to feel better.” Or “Sometimes when I feel stressed, I like to do something fun to take my mind off of things.”), in an effort to expand your daughter’s coping repertoire.
Q: Hi…I went to work at a preschool and it was my first day. A child came up to me and just held my hand and wouldn’t stop. I didn’t know her, but later I found out that she has autism. So, what does it mean if a child with autism holds your hand and they don’t even know you?
A: One of the diagnostic criteria of autism spectrum disorder (ASD) describes challenges making social initiations. Another criterion describes difficulty understanding social norms. My interpretation of this behavior (which could be correct or not) is that this child was attempting to connect with you or attempting to feel grounded in an environment of constant change (or both?). Either way, she’s not fully aware that this behavior is incongruent with the social environment and behavior of her peers. Through coaching (from you and other therapy providers), she will learn how to initiate effectively and will learn other (more socially appropriate) strategies for feeling safe and grounded. All of this aside, she chose you to feel safe with. What a special first day!
Seattle Children’s provides healthcare for the special needs of children regardless of race, color, creed, national origin, religion, sex (gender), sexual orientation or disability. Financial assistance for medically necessary services is based on family income and hospital resources and is provided to children under age 21 whose primary residence is in Washington, Alaska, Montana or Idaho.