Eleven Things I Wish Someone Had Told Me About Autism

By Marcia Hinds – Ryan and Megan’s mom

 

Autism isn’t just a medical crisis; it is a family crisis that affects every member of the family. The personal anxiety, stress, and social isolation that results from living on Autism Island is past overwhelming. Only another parent understands what it is like to live with autism, day in and day out.

Children are recovering from autism and still most doctors and the general public are still unaware that this is possible. An autism diagnosis no longer have to mean “game over.” When Marcia’s son was first diagnosed with autism, the “experts” said Ryan would need to be institutionalized. He is now an aerospace engineer. And what his mother wanted most for him actually happened, he is happy, leads a typical life and has friends. Ryan only began to make significant progress after his family abandoned the idea that autism was a developmental disorder and began to treat the problems with his immune system medically.

These are the eleven things Marcia wishes someone had told her about autism and what she thinks every A-Club parent needs to know:

1. The word “Autism” is used to define a collection of symptoms that look different in every individual. Maybe, if we stopped calling it “autism” and called it what it is “a messed up immune system” more kids would get the medical treatment they need and deserve. Their immune systems aren’t working properly and children seem to fall into two categories of immune dysfunction. Some have immune systems that are overactive (they rarely get sick) and others with underactive immune systems seem to be ill all the time.
2. There is no magic bullet or instant fix. I know this is true because I searched everywhere for it. We want our kids better right away (maybe before lunch), but it doesn’t work that way. Our fears and desperation make us sitting ducks for the snake-oil salesmen trying to sell us the “cure of the week” for autism. If it sounds too good to be true, it probably is.
3. Autism is medical and treatable! The common mistake made by most doctors is believing that autism is a developmental disorder that can’t be treated. And finding the right doctor still remains one of our biggest challenges. So don’t be surprised if your pediatrician thinks you’re crazy when you ask about medical treatment. They are not bad doctors, they just never got Autism 101 in medical school.
4. Autism results from multiple medical problems combined. That is why autism is so difficult to treat. Each child suffers from different medical issues so treatment is different for every child. When the “total load” on Ryan’s immune system was reduced, his autism symptoms decreased. Before and after Neuro-spect scans showed that my son’s brain inflammation decreased and the blood flow to the affected areas of his brain improved after treatment. Good blood flow means function and this made it so my son could learn what he couldn’t before.
5. The medical treatment only makes learning possible, it still is necessary to catch our children up using focused rehabilitation. Teaching our children all they missed takes time. Some parents mistakenly believe the medical interventions aren’t working, because their children don’t immediately start speaking in full sentences Even if you could wave a magic wand and correct all the problems with a child’s immune system, it still takes a “typical” and healthy children three years to gain language.
6. This is a marathon and not a sprint! Any rehabilitation program works if parents don’t give up too soon. So pick the one you like best. They all work after a child is healthy enough to learn and you stick with it.
7. Motivation is the key to success in learning. Use what your child loves or obsesses about to motivate them. Every lesson for my son included elevators, cars, computers, technology, sharks, electric plugs, or light switches. We all wanted to scream when he spoke about these things over and over again, but Ryan loved talking about them. The important thing was we used these obsessions to motivate him and help him learn.
8. Parenting by the regular rules does not apply when you have a kid with autism. Part of me believed my relatives when they said it was my parenting that created Ryan’s issues. I worried that they might be right. Repeat this phrase “AUTISM IS NOT MY FAULT” over and over again until you start to believe it.
9. There are no magic bullets. I searched everywhere for them. We want our kids better before lunch, but it doesn’t work that way. Recovery takes time and being more stubborn than our kids. Our desperation makes us easy targets for snake-oil salesmen trying to sell us the “cure of the week”. If it sounds too good to be true, it probably is.
10. Keep talking to your child even though they give you no response. Ryan gave me nothing, not a look, not a nod. Just that blank stare. But keep talking to your kid even when it seems like the lights are on, and nobody is home. I didn’t realize the dramatic effect my constant chatter had, until Ryan was better. My son was learning even though he couldn’t yet communicate that to me. My kid was IN THERE. And please never say anything negative about them when they are present. Every child needs to know their family believes in them. Our children know more than they can say, and notice more than you realize.
11. This is not an easy fix and recovery takes time. At first even I didn’t think Ryan could ever be “typical.” In the middle school years my dream for Ryan was that someday maybe he could hold a job at McDonald’s and live independently. But back then, even I wasn’t sure that was possible. Who knew that someday he would accomplish all that he has.
12. Equal effort doesn’t guarantee equal outcome! Our children are individuals and will respond to the medical, behavioral, and educational interventions in their own way. But U-turns are allowed and you don’t have to get it right on the first try. So try not to worry about everything like I did. Just keep putting one foot in front of the other, even when you don’t actually know where you are headed.

 

You can do this! I made a lot of mistakes along the way, but the one thing I did right was I never gave up no matter how hard it got!

 

Marcia Hinds wrote I KNOW YOU’RE IN THERE-Winning Our War Against Autism. When her son was first diagnosed with autism, the “experts” said Ryan would need to be institutionalized. He is now an aerospace engineer. And what his mother wanted most for him actually happened, he is happy, leads a typical life and has friends. Ryan’s inspirational story is told in a way that is heartwarming, heartbreaking, and sometimes hilarious. Marcia has a degrees in Psychology/Sociology from UCLA and a teaching credential. But Marcia’s most impressive credential is that she is Ryan’s mom and their family beat autism. You can find Marcia and more information at www.autism-and-treatment.com

All profits from her book go to spread the word that autism is TREATABLE!

 

NOTE FROM MARCIA HINDS – Megan and Ryan’s mom :