41 Things to Know About Autism: An Excerpt

Chantal Sicile-Kira, an advocate and author of five books on autism, recently published 41 Things to Know about Autism. With more than 25 years of first-hand experience, Sicile-Kira was first introduced to the disorder during her employment at a state hospital where she prepared youths for deinstitutionalization. In June 2010, her 20-year-old son, who is non verbal and has severe autism, will be graduating high school with a full academic diploma from high school. Sicile-Kira is president of Autism Making A Difference, Inc, which provides inspiration, information and hope to families and educator. She was the subject of Newsweek’s cover story “Growing Up with Autism, and the award-winning MTV True Life episode “I Have Autism.” Her perspective as both a parent and leader in the autism community inspired her son to pursue attending community college. Sicile-Kira continues to write about autism and instruct others in her recent appointment as the co-chair for the South Counties Autism Regional Taskforce under the California Senate Select Committee on Autism. For more information, visit www.chantalsicile-kira.com/.

Here's an except from the book that I particularly resonated with because I am frequently giving this same advice:

"Although diagnosis rates of autism have in­creased (now 1 in 100 children), not all medical professionals are aware of the signs of autism at different ends of the spectrum. The difficulty is that there is no medical test that can be given to determine whether a person has autism. Often a mother is the one who discovers some­thing is wrong because she notices her baby is not going through developmental milestones at the usual pace.  

"A pediatrician who is not very knowledgeable about autism may tell her to wait a few months and come back, saying that boys don’t always develop as quickly as girls. However, what autism looks like at different ages and different places on the spectrum is variable. Thus, choosing the right professional is important. Seek the advice of a professional who is knowledgeable about the behavioral symptoms as well as the diagnostic criteria—and the sooner, the better.  

"My advice: follow your instincts. If you are the parent, you know your baby or child best because you spend the most time with him or her. If you think there is something wrong, there probably is. The important thing is to find the right person who can tell you if your child has an Autism Spectrum Disorder. Remember, in all that you do, you are not alone. There are many people in your situation looking for answers. Take the first step and see a professional who can help.

"If you are a parent wondering whether your baby is reaching his developmental milestones, there is a list of them on the First Signs Web site at www.firstsigns.org/healthydev/milestones.htm. When reviewing this list, keep in mind that some children have regressive type autism—they develop normally then lose skills previously learned. Also remember that this checklist does not include the gastrointesti­nal challenges many babies with autism suffer from."

Sicile-Kira lists national resource and support organizations to which parents can turn for help.

Comments

[Leisa A. Hammett]

Nancy, thanks so much. Your affirmation is greatly appreciated. I know the promotion and affirmation Pat McNellis gave your blog launch. I dream of the same. So, if anyone is reading this: comments are very important. Subscriptions, too. They are free. Both Nancy and I are great writers waiting in the wings for our New York agents & publisher break for our (my other) books....You help us get there by commenting here (not just email bc only I read those--but thanks, too.) You can remain anonymous.

[Nancy at GoodFoodMatters]

It's really great work that you are doing, Leisa, to get all this important information out there and get people connected.

just a little send-up of applause from my end of the web....

[Leisa A. Hammett]

JoLyn, thank you for coming back to visit again. Small world, huh? Just goes to show everyone either has a family member or knows someone or has at least heard of autism this day and time. It wasn't always so....

I speak to university students frequently, including those at a couple of medical universities. I tell those future doctors to listen to the mothers. We always know.

Thank you for sharing both my book and Chantal's with your friend. I am grateful.

[JoLyn]

I think it's important too for mothers to trust their instincts. Sometimes we just know.

My friend really had to push for doctors to figure out what was going on with her son, but was finally able to get the help she needed. She just knew something was not right.

I will tell her about this book and yours. She reads everything she can to learn how to help her child. And it's so nice to connect with other mothers who are working through the same things.