Chantal Sicile-Kira is a parent, national speaker, the author of five award-winning books on autism and founder of Autism College, which provides online courses about autism. Chantal has served on California Senate Select Committee on Autism & Related Disorders and in the past she worked at Fairview Developmental Center and the Orange County Regional Center. We recently had a chance to talk with Chantal about her latest book Autism Spectrum Disorder.
Thanks for sitting down with us today Chantal. Can you tell us about your inspiration for updating your book, "Autism Spectrum Disorder: The Complete Guide to Understanding Autism"?
The families that I have met over the past ten years have been my inspiration. In ten years, a lot has changed. But what has not changed is how alone a parent feels when receiving a diagnosis, and how young adults struggle when leaving school to live in a world that is not always understanding or accepting of their differences.
My passion has always been to empower parents; to let them know they are not alone and to provide practical information they can use. In Autism Spectrum Disorder, I provide practical advice on where and how and what kind of help to get, and what the best resources are. Parents need to learn how to figure out what will help their child, because each child is different. What helped one child may not help another child. In my book I also quote many people on the spectrum – they have so much information to share on what has been helpful to them (or not) and that is important to consider. We have a lot to learn from people with autism from all walks of life.
When were you inspired to become an autism advocate for our community?
When Jeremy was diagnosed as a toddler over 20 years ago in France, the diagnostician told me that I should look for a good institution for him, and get on with my life. Little did she know that my first real job before moving to France had been preparing young adults in a California state hospital for de- institutionalization. No way would I ever place my son in one!
Then, I was told the only treatment available was psychoanalysis. The psychoanalyst informed us that my son’s ‘autism’ was due to separation issues from breastfeeding. This the analyst gleaned from watching Jeremy spin round objects and chase after one that he lost when it fell and rolled under the couch.
I knew better due to my past work experiences, but it upset me that parents who didn't know better might believe this explanation, be made to feel guilty and given no hope or practical information. I knew I had to get back into the field of autism again.
Your son Jeremy has written several excellent guest posts for our website in the past few years. How is he doing today?
When I asked Jeremy what the response should be, he spelled out, “Really I am doing great.” From my perspective, Jeremy is doing very well compared to what I was led to believe his future would be. He has discovered a gift for writing, and also for painting, which he is passionate about. He is a Young Leader for the Autistic Global Initiative, a project of the Autism research Institute.
He volunteers at the lifeguard station at the local beach, which he loves.
However, I do not want to minimize the areas he still struggles with, as do many with autism. He suffers from PTSD and anxiety. He wishes he had more friends, he feels lonely. Another the area that has been hard for him due to sensory-motor challenges, is becoming independent with his functional living skills.
I am very proud of the person Jeremy has become. He has a great personality and sense of humor, and he is very caring about others close to him.
Going back to your book a bit. What would you say is the biggest difference between the knowledge of autism now then autism 10 years ago when your book originally came out?
It’s hard to think of one big difference; because although there are still many unknowns about autism, there is a lot more we do know. There is a greater understanding of the gut-brain connection and the importance of healthy eating and living. There is a greater understanding of the importance of sensory processing challenges in the life of a person with autism, and many strategies and therapies have been developed to address these. We are realizing that educating children with autism is not about making them as ‘normal’ as possible but finding out what strengths they have to help them learn so they can have happier and more productive lives. And finally there is more emphasis on self-determination and the need to better prepare our youths on the spectrum for adult life, and the need for society to be more accepting of those that are different – but not less.
What are you up too next? Can you tell us more about what we should expect from Autism College?
My focus in 2014 is to help Jeremy transition to living more independently in his own home. On Autism College (beginning in February) we will be chronicling, from different perspectives, Jeremy’s move to supported living. Jeremy is working hard to become more independent with the help of support staff and specific strategies such as task analysis and video modeling. We hope our story will encourage others, and provide practical advice and useful tips along the way. Perhaps readers and viewers will have their own tips to share!
As well, we will continue to offer on-line trainings for schools and organization. On-line trainings are a great option for those that don’t have the budget to organize a conference, but would like presentations tailored to their needs. Trainings can be recorded and played back when needed for those unable to attend.
You can read more on Chantal's son Jeremy on our site here.