One of the most difficult things about autism is that we (parents, families) seem to turn into Martians. We are this weird new species that the outside world is observing, but not necessarily understanding. I think that’s one of the reasons autism parents are so amazing to each other – no one else “gets” us anymore. Everything we do is weird. While this is understandable (I would have thought all this was kind of crazy pre-autism) and part of me can’t ever see even bothering to fit into normal life, it does get a little lonely. And being misjudged can be annoying. We can take it, but when our kids are the ones who are misunderstood, it can really hurt.
Today our autism parent expert panel is telling you what you need to know about autism. And if you’d like to know even more things we wish you understood, here is some further reading. I’m Simply A Dad tells you what he and other Autism Parents Want You To Know (me included). And Autism Dad writes the Top 10 Things A Special Needs Parent Wished You Knew. Please share in the comments what YOU think people need to know about autism.
ASK THE EXPERTS
What do you want the world to know about autism?
“I’m not crazy. I don’t blindly follow hip and trendy diets or treatments just because this celebrity told me to. Warrior parents spend so much time researching things before we try them out. There are quite a lot of snake oil pitches out there, and we don’t simply try them all. We evaluate them, and see if they are appropriate for our kids. I personally mention it to our autism doctor before starting something that seems too ‘woo woo.’”
“Autism families are fighting many battles all at once. First, we are navigating the uncertainty of our child’s health concerns on top of academics, social issues and behaviors that take over the family dynamics. Everyone is affected by autism, not just the child. Second, we are fighting ignorant medical professionals who are not taught about autism in medical school. We go to them for answers but are instead handed platitudes, or made to feel guilty for choosing a course of action. Third, the vaccine connection to autism is real because we watched our perfectly healthy child descend into autism directly following a round of vaccines. We have labs to prove the connection too. Then throw on the problems with antibiotics and toxins in the environment and there is no wonder we have the worst levels of chronic illness in children than at any time previous.”
MEET THE EXPERTS
Dave Borden is Simply A Dad, focusing on raising his kids to have a healthy attitude toward food and life. He teaches them the power of real food, and the dangers of pretty, packaged food. But he wasn’t always like this. He struggled with poor health for decades. But, his oldest son’s autism diagnosis started him down an alternative path – a path that taught him how to better care for his children, as well as how to better care for himself and appreciate the important things in life. Now, he teaches fellow parents the tricks he’s learned and shares practical, everyday advice to improve health and happiness on his blog ImSimplyADad.com. Dave Borden is Simply A Dad on a mission to make the road to better health and healing easier for all families.
Diane Hennacy Powell, M.D. is a neuroscientist and psychiatrist who completed her training in medicine, neurology, and psychiatry at Johns Hopkins University School of Medicine. She is a former member of Harvard Medical School’s faculty and of a think tank on consciousness at the Salk Institute in La Jolla, California, and has published articles in neuroscience and neuropsychiatry journals. She is the author of The ESP Enigma: The Scientific Case for Psychic Phenomena and a contributor to: Seriously Strange: Thinking Anew About Psychical Experiences. To learn more about the work of Dr. Powell visit www.DianeHennacyPowell.com.
Erica Daniels is the author of Cooking with Leo: An Allergen-Free Autism Family Cookbook, medical cannabis activist, public speaker and is the single mother of Leo who struggles with autism and chronic health issues. Erica’s life changed and gained new purpose after her son was diagnosed with autism in 2007. Erica founded Autism Advisors LLC and #hope4Leo 501c3 after years of struggling to treat her son’s autism using conventional and biomedical treatments with little or no success. Eating a healthy allergen-free diet and using natural medicines such as medicinal cannabis have greatly improved Leo’s health and autism symptoms. In 2016 Erica founded the autism420 Project, an initiative for legal, safe and appropriate access of medicinal cannabis for use in autism.
Honey Rinicella is the coordinator of the Pennsylvania Chapter of Talk About Curing Autism (TACA), a national non-profit 501(c)(3) organization dedicated to educating, empowering and supporting families affected by autism. She is a wife of 20 years and the mother of 3 beautiful children, 2 of whom have autism. Honey has presented on autism locally and nationally, educating parents and professionals. She has been featured on ABC News, NBC News, NBC’s At Issue, and the Today Show. Honey lives in Pennsylvania with her family.
Kim Stagliano is a nationally recognized autism advocate and lively speaker. She has three daughters with autism, ages 21, 19 and 15. She is author of the memoir All I Can Handle I’m Not Mother Teresa: A Life Raising Three Daughters with Autism, the novel House of Cards and co-author of 101 Tips for Parents of Girls with Autism. Kim serves as Managing Editor of www.ageofautism.com, the nation’s first daily web newspaper about the autism epidemic. She writes for The Huffington Post, and The Autism File Magazine. She speaks at national autism conferences and has appeared on Good Morning America, ABC News, Fox News, in The Chicago Tribune, The National Catholic Register, and on blogs around the world. A former sales and marketing executive, Stagliano lives in Connecticut with her family.
Kristin Selby Gonzalez is the mother of a child on the Autism spectrum. In 2008 she began serving as the Director of Autism Education at Enzymedica. Since then, she has advised numerous supplement companies with respect to their policies and product formulations for children on the spectrum. Kristin speaks all over the world, having educated tens of thousands of caregivers throughout the years on different strategies to help children on the Autism spectrum. Since September 2012, Kristin has been leading the Autism Hope Alliance where she serves as President and Chairman.
Laura Hirsch is an author and blogger for The Thinking Moms’ Revolution. Her TMR nickname is Oracle, and she wrote chapters for the TEAM TMR book, Evolution of a Revolution and the upcoming TMR puberty book, along with numerous TMR blogs. She has also written three books of her own: Widowed Too Soon, Foundation of Discovery: The Cause of Autism – Channeled, and The Other Side of Autism. She advocates for food safety and has been featured in the documentary Genetic Roulette: The Gamble of Our Lives. Laura has two incredible children, one of whom has regressive autism and is the inspiration for her advocacy work. She lives in Reno, Nevada.
Marcia Hinds is a motivational speaker and autism parent. Her powerful message has been featured at autism conferences all over the United States. Marcia’s inspirational book about Ryan’s recovery makes you rethink autism. I Know You’re In There shares what her family did to help Ryan and tells their story in a way that is heartbreaking, heartwarming, and sometimes hilarious. Marcia has a B.A. in Psychology/Sociology from UCLA as well as a teaching credential. But Marcia’s most impressive credential is that she is Ryan’s mother and their family survived autism. For more info go to www.autism-and-treatment.com.
Mary Romaniec is a reporter and the mother of a child who recovered from autism by the age of four. In addition to mentoring hundreds of families around the world, her articles about autism have appeared in Mothering Magazine, Autism/Asperger Digest, Autism Today and Journeys Magazine. In her book Victory Over Autism, Mary discusses the stages of grief associated with the diagnosis, followed by the winning attributes parents will either possess or adopt as they strive to the goal of better health or full recovery for their child, as well as a better future.
I’m so grateful to all of the Autism Experts for their input for these posts. Check out the rest of the posts in the Ask The Experts autism series:
The Best Advice For Autism Parents
The Most Effective Autism Interventions
How To Help Marriage Survive Autism
Successful Single Autism Parenting
The Best Way To Handle ‘Autism Hard’ Days
How Autism Made Your Life Better
What You Wish You Knew (at the time of the autism diagnosis)