by Marcia Hinds – Ryan’s Mom
I wrote I Know You’re In There – Winning Our War Against Autism to help you understand this frightening thing we call “autism.” This article has some of what you need to know to make it off Autism Island and is the cliff notes for my book.
I was once where you are now, devastated by this diagnosis and scared out of my mind for my child’s future. In the beginning I was in denial, and hoped the doctors were wrong. At that time, even I didn’t believe Ryan would ever recover or have any sort of life.
The “experts” said my son would need to be institutionalized. But they were wrong. Ryan is now an engineer at a major aerospace company. His recovery was not miraculous, but the result of receiving proper medical care.
Although it has been over twenty years since Ryan was diagnosed, it is still not common knowledge that autism is medical and treatable. An “autism” diagnosis no longer has to mean “game over” when you combine medical, behavioral and educational interventions. This is the message I want to share and have spoken about in interviews, news articles, and autism conferences across the country.
If a child’s health can be restored by treating hidden viruses and infections, children improve and for some full recovery becomes possible. Parents no longer have to helplessly watch as their children slip away.
Although my son is now a very typical young adult, 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 treated the subset of autism my kid had. And helping my son required a never-give-up attitude that was hard to maintain.
When your child is first diagnosed, it is overwhelming. There is too much information out there and not many people agree on anything. So learn to trust your gut, because you know your kid best. I wasted too much time crying and in the “denial” phase of autism. You can’s feel sorry for yourself or your child for too long, there’s too much work to do.
It took time for me to realize that although there are professionals to help our family, we were the ones ultimately responsible for Ryan.
I wasted too much time crying and in the “denial” phase of autism. You can’t feel sorry for yourself or your child for too long, because there’s too much work to do. When we first got the diagnosis, I was paralyzed with fear for my son’s future. I used to believe autism wasn’t fixable because the experts told me there was no hope, no cure, and no recovery. But I was as wrong as the “experts” who said there was nothing I could do. After my husband and I stopped looking for someone to do this for us, things started to improve. It didn’t take much time to realize that no one will do this for us and no one wants our job.
Please don’t stop reading yet, because this article is the cliff notes for my book and will help you understand what autism really is…
Ryan’s recovery proves this 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 is 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, the inflammation in our children’s brain is reduced. That results in improved blood flow to the compromised areas. Good blood flow means function. This makes it so children can learn what they couldn’t before. That’s when your kid has a chance at full recovery like Ryan did. However, I must warn you, this is the hardest thing I have ever done.
Some people think we should just accept autism. They say if a child is treated, it changes who that kid is. Autism is complicated and isn’t just one thing. It is caused by multiple layers of immune issues. Unfortunately, some kids have immune systems that are just too broken and can’t be completely fixed. It is important to note that equal effort doesn’t guarantee equal outcome. I know many families that worked as hard as I did, without the same results. But you will never know just how far your child can come, unless you try.
Once I 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 properly and these children carry many stealth infections. While 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 in “mom talk,” sometimes the immune system doesn’t work enough, but other times is working overtime.
Medical treatment alone is not enough. That only makes learning possible. ABA, RDI, Son-Rise, Pivotal Response Training or whatever flavor of rehabilitation you decide to use also is 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 the hard part to deal with. I was angry when I couldn’t understand why I had to teach my kid everything others just knew. If you think about all the pieces you have to coordinate to make kids better, it becomes more understandable why more kids don’t fully recover. Parents must have perserverance to beat autism or maybe just be more stubborn than their kids.
Motivation is also key to success. 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 find the same things rewarding as “typical” children. So it is not always easy to identify what is rewarding for a kid who has communication deficits. But 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. And when 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 French fry.
The good news about all if this is that autism is treatable. The bad news is that there are no instant fixes or miracle cures. Trust me on this one because I looked everywhere for them. Unfortunately, even our most dedicated doctors never got “Autism 101” in medical school. It is very difficult to find a doctor who knows what to do. Your pediatrician may not know what you are talking about when you ask for his help. They actually want to help you, but just don’t know about the treatments that are out there. And 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 help you and share what it took me years to learn. All proceeds go back to spread the message that “autism is treatable” and for the Centers of Excellence being developed to treat our kids. I won’t make a dime off the desperation, fear, or misery this diagnosis brings. I just 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. We will help the families (still in the trenches) that come behind us.
When the rest of the world realizes autism is treatable, more research and the answers will come to help more kids. When you preview my book on my website or on Amazon, you will RETHINK autism. Make sure you don’t skip the “Foreword” written by Ryan and the “Preface.”
You can do this! If you think you have exhausted all possibilities, you haven’t! New treatments are being developed all the time and you are no longer alone on Autism Island. I will be here to help you any way I can.
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 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!