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: The Best Advice for Autism Parents

ASK THE EXPERTS

What do you want the world to know about autism?

“It is so very hard! Please don’t ever judge. A simple smile is a gift you can give any autism parent, as it shows that you care instead of judge.”
No one who hasn’t lived it can comprehend just how hard autism life can be. I was driven, crazy, and anxious about everything after autism came into our lives. Questions on how to help Ryan were all I thought about. What should I feed him? Will this medication affect his growth? What do I need to teach him next? Will he ever have eye contact or answer my questions? Do I need to find a different doctor? Should I get his tonsils out? Will he ever be happy, have friends, be invited to a birthday party? Will he ever have anyone to play with at recess? The list went on and on and I never stopped long enough to breathe. And the constant and most frightening thing I thought about was who would take care of my son when I was no longer here to do all the crazy things I do for him. So, when I talk too much about my kid and all the craziness in my life, please try to seem like you understand and care.
“Autism is a tough diagnosis that affects the entire family, parents and siblings alike. The media portrayals are often way off the mark, portraying autism as a gift, a set of special abilities. In fact, no matter where a person falls on the Spectrum, basic living can be extremely difficult and worrisome.”
Autism is not an illness, but children with dozens of medical conditions that are often grouped together and labeled ‘autistic.’ These children often understand far more language than anyone could imagine, but difficulties in expression lead them to be falsely considered to be mentally retarded. Children have nutritional deficiencies, a history of too many antibiotics causing disruptions of their gut bacteria, chemical and/or heavy metal toxicities, food sensitivities, and genetic vulnerabilities. We can test and correct most of these root causes, and treat many children at a fraction of the cost of current treatment modalities. Sadly, most insurance carriers don’t cover this ‘integrative’ approach. They are unaware of its scientific validity, which is saving pennies upfront while driving total healthcare costs up. Screening and treating nutritional deficiencies and toxicities needs to be a routine part of our prenatal and neonatal care.
Our kids are vaccine injured and ill!

“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 is tremendously devastating for the entire family and affects all areas of family … finances, relationships, siblings, grandparents, etc.

“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.”

Don’t feel sorry for me. This is the hand dealt to me. Cheer us on and be supportive of things you might not always understand. I am still a mom and my son is still a kid who wants to be happy.

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.
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.
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.
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.

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