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 hoped the doctors were wrong.
But an “autism” diagnosis no longer has to mean “game over.” Parents no longer have 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.
The “experts” said an institution was in my son’s future.
They were wrong!
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. There was no internet. Back then, even I didn’t believe my son could recover or have any sort of life.
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? Although it has been more than twenty-five years since Ryan was diagnosed, 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. It wasn’t easy to find a physician who knew how to treat the type of autism my kid had. And helping my son 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 is 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. Families can’t feel sorry for themselves or their children for too long, because we have 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. Improved blood flow to the areas of their brains that control speech, social skills mean improved function. That’s when your kid has a chance. However, I must warn you, this is the hardest thing you will ever do
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 my son to be 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 and 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 appear highly reactive, and, as a result, 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 enough, and other times is working overtime.
Medical treatment alone is not enough and only makes learning possible. Applied Behavior Analysis (ABA), Relationship Development Intervention (RDI), Son-Rise, Pivotal Response Training, or whatever flavor of rehabilitation you decide to use, is also needed. These rehab programs help you catch your children up on all they missed when they were unable to learn. They all work if you stick with them. 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. This is sometimes difficult to come to terms with. I couldn’t understand why I had to teach my kid 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 and be more stubborn than their kids.
Motivation is also key. We used what Ryan loved and obsessed about to teach him. For my son, that meant 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 them. Children who have autism do not like the same things as other children. So, it is not always easy to identify what is rewarding for a kid who has communication deficits. All children love hugs and praise, even if they don’t always show us that is true. At first Ryan didn’t want hugs and affection. I did it anyway. Whenever I hugged him, I said, “You have to hug me because I’m your mom, and that’s your job!”
For the skills that were especially hard for my son to learn, we used primary reinforcers. Ryan’s deficits in the motor planning area like catching a ball 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 is 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. Treating our kids is labor intensive. In addition, each child is an individual and will respond to treatment and rehab programs differently.
So read my book to find out what we did. I wrote it to share what it took me years to learn and prevent you from making the same mistakes I did. 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 will help the families (still in the trenches) that come after us.
If you think you have exhausted all possibilities, you haven’t! New treatments are being developed all the time. You can do this! And you are no longer alone on Autism Island. I will be here to help you any way I can. Email me at email@example.com if you need help finding the right doctor or coming up with a plan.
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!
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!
Preview the book on Amazon or at http://a.co/epKB86Q