by Marcia Hinds – Megan and Ryan’s Mom
Your child was just diagnosed…now what? Hearing that your child has autism is frightening and overwhelming. The social isolation, stress and anxiety that comes with the diagnosis can be paralyzing. I was once where you are now. When my son was first diagnosed, I was terrified, in denial, and prayed the doctors were wrong.
The “experts” said an institution was in my son’s future.
An “autism” diagnosis no longer has to mean “game over.” Parents no longer have to stand by to helplessly watch as their children slip away. If a child’s health can be restored by treating hidden viruses and infections, children improve, and recovery becomes possible.
My son’s recovery was not miraculous, but the result of combining proper medical, behavioral and educational interventions. Today Ryan works as an aerospace engineer. But more important than that he is happy, has friends and is leading a typical life.
When we first started to correct the problems with Ryan’s broken immune system, there wasn’t much information to help us. The internet was just beginning. Now we have the opposite problem: there is too much information, and no one agrees on much of anything. Parents don’t know which professionals to believe, and what information is credible?
It has been more than twenty-five years since Ryan was diagnosed, yet it is still not common knowledge that autism is medical and treatable. Although my son is now okay, getting there took more than a decade filled with mistakes, guilt, wrong turns, and frustration as we tried to make sense of autism. In the beginning, even I didn’t believe my son could recover or have any sort of life.
It wasn’t easy to find a physician who knew how to treat autism medically. And finding the right doctor continues to be one of our biggest challenges. Helping my son also required a never-give-up attitude that was hard to sustain. Unfortunately, most children will not get better on their own. The first step toward recovery is deciding that you are no longer willing to stay where you are.
I wrote Ryan’s story to help families understand this frightening thing we call “autism.” This article has some of what you need to know to make it off Autism Island. My book I Know You’re In There – Winning Our War Against Autism shares the road-map we used to help my son.
It took time for my husband and I to stop looking for someone to do this for us. When we finally realized no one wanted our job, things started to improve. I learned to trust my gut, because I was the expert on my son and knew him best. But I wasted valuable time crying and in the “denial” phase of autism. We can’t feel sorry for ourselves or our children for too long, because there’s too much work to do. Although there are professionals to guide us, we are the ones ultimately responsible for helping our kids.
Ryan’s recovery shows autism is a changeable medical condition. Ryan only began to make significant progress after we abandoned the idea that autism was a developmental disorder and embraced the idea of medically treating his dysfunctional immune system. The real truth about autism is that it is simply a collection of symptoms that look different in every kid. It results from an immune system that is not functioning right. Doctors don’t use the term “messed-up immune system,” but in reality–that’s what it is. When that becomes common knowledge, more treatments will be developed, and more kids will be helped.
If the multiple causes of our children’s immune problems can be remedied, then the inflammation in our children’s brain is reduced. That’s when the blood flow to the areas of the brain that control speech, social skills, motor planning, and more improve. Improved blood flow means improved function. That’s when your kid has a chance. However, I must warn you, this is the hardest thing I have ever done.
Some people believe we should just accept autism. They say if a child is treated, it changes who that kid is. Treating my son’s autism medically made it possible for Ryan to become who he was supposed to be before autism came into our lives.
This is what my son, Ryan, has to say about treating autism medically:
“I am still the same person I was, only now I’m happy and can enjoy life. It is hard to understand that children are not receiving proper medical treatment because some people think we should celebrate autism. When doctors believe the medical issues associated with autism are just part of a ‘developmental disorder’ children are not treated for the same medical conditions as every other kid. Is that really okay?”
Unfortunately, some kids have immune systems that are just too broken and can’t be completely fixed with current treatments. But all kids improve with proper medical intervention. You will never know just how far your child can come unless you try. That being said, I know many families that worked as hard as we did without the same results.
Autism is complicated. Once we helped my son medically, he was able to learn all the things he missed when his immune system was seriously broken. This is the point when some parents chime in to say, “But my kid is never sick.” Some kids never mount the appropriate immune responses like effective fevers, so we think they aren’t sick. But their systems aren’t functioning correctly, and these children carry many stealth infections. Others have immune systems that are highly reactive. As a result, they seem to be allergic to everything. The best term to use is a “dysfunctional immune system” which means sometimes the immune system doesn’t work hard enough, and other times it works overtime.
Medical treatment alone is not enough. That only makes learning possible. A rehab program in conjunction with the medical interventions is also needed. That is when we can catch our children up on all they missed when they were unable to learn. Applied Behavior Analysis (ABA), Relationship Development Intervention (RDI), Son-Rise, Pivotal Response Training, or whatever flavor of rehabilitation you decide to use all work once the immune system is functioning better. So pick the one you like and stick with it. We used our own version of ABA with a little RDI and Son-rise thrown in.
Our kids won’t come out of this by themselves; you have to go in there and get them. That is sometimes difficult to come to terms with. I was angry when I saw typical kids just being kids. I couldn’t understand why I had to teach my son every little thing that other children just knew. If you think about all the pieces you have to coordinate to make kids better, it is more understandable why more kids don’t fully recover. Parents must have perseverance to beat autism. It is important to be more stubborn than our kids. If you don’t give up no matter how hard your child tries to make you, you will eventually find the answers.
Motivation is also key. We used what Ryan loved and obsessed over to teach him. That meant for my son every lesson had to include one of the following: elevators, cars, computers, technology, sharks, electric plugs, or light switches. It is essential to discover what your child likes and use that to teach him/her. Children who have autism do not like the same things as other children. It is not always easy to identify what is rewarding for a kid who has communication deficits. But it is important to remember all children love hugs and praise, even if they can’t yet show us that is true. At first, Ryan didn’t want me to show him any affection. I hugged him anyway while I said, “You have to hug me because I’m your mom. That’s your job!”
For the skills that were especially hard for my son, we used primary reinforcers. Ryan’s deficits in the motor planning area like catching a ball, moving his game piece on the Sorry board, or riding a bike were huge. When we taught those skills, Ryan was rewarded with a Skittle or a French fry.
When the rest of the world realizes autism is treatable, more research and the answers will come that will help more kids. The bad news is that there are no instant fixes or miracle cures. Trust me, I looked everywhere for them. Our biggest challenge continues to be finding a doctor who knows what to do. Even our most dedicated doctors never got “Autism 101” in medical school. Your pediatrician may not know what you are talking about when you ask about the medical interventions. In addition, treating our kids is labor intensive, so many of the doctors don’t take insurance. And we must remember each child is an individual and will respond to treatment and rehab programs differently. If you need help finding a doctor, email me at email@example.com or need help coming up with a plan. Please include where you live and I will share my doctor list from your area that other parents have told me about.
My book has the roadmap we used to help Ryan. I wrote our story to share what it took me years to learn and prevent you from making the same mistakes I did. Please help me spread the word that “autism is treatable.” I want all kids to have the kind of life my son now has. And when your kid is better, I expect all of you to join me in the fight. We must help the families (still in the trenches) that come after us.
There is HOPE…it is possible to have a different outcome for children with autism!
Check out this video called, Changing the Face of Autism. It has become the official video of the AutismOne nonprofit. It will inspire you to keep going and shows kids in various stages of recovery! Look for the picture of Ryan graduating from college and surfing!
And if you think you have exhausted all possibilities, you haven’t! New treatments are being developed all the time. You can do this! You are no longer alone on Autism Island. I will be here to help you any way I can.
Profits from I Know You’re In There: Winning Our War Against Autism go to spread the word that autism is TREATABLE and to develop new medical treatment centers!
NOTE FROM MARCIA HINDS – Megan and Ryan’s mom :
Ryan became an aerospace engineer, because he received proper medical treatment combined with behavioral, and educational interventions. Preview the book on Amazon or at http://a.co/epKB86Q Ryan’s story was written for families looking for the answers to this complex neuroimmune condition we call “autism.”
We must never give up or stop the research until we find the answers to help every child!
ALONE there is little we can do about autism.
TOGETHER we will be unstoppable!
Contact info for Marcia: