By Marcia Hinds – Ryan’s Mom
When we hear the word “autism,” parents are terrified and hope the doctor is wrong. Here are the seven things I wish someone had told me about when Ryan was first diagnosed with autism:
1. There a lot of information out there and no one agrees on anything. Don’t allow this frightening diagnosis to overwhelm you. You must learn to trust your gut and remember you know your kid best. Stop looking for someone to do this for you, because no one wants your job.
2. There is no magic bullet or instant fix. I know, 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! That’s the good news. An autism diagnosis no longer has to mean “Game Over.” The bad news is that most physicians don’t know this and finding the right doctor to help us still remains one of our biggest challenges. Your pediatrician may not know what you are talking about when you ask about medical treatment for autism. And what makes this harder is that autism is complicated. Sometimes it takes more than one doctor to address the multiple medical issues your child may have.
4. The medical treatment only makes it possible for our children to learn. Our children still need an intensive rehab program. That’s why there are programs like Applied Behavior Analysis (ABA), Floortime, Son-Rise, or RDI, Pivotal Response Treatment (PRT) and more. They all work if you keep at it! We used our own version of ABA with a little RDI and Son-rise thrown in.
5. Some of our relatives don’t get it. They think we are the worst parents in the world. Don’t believe it! Keep saying to yourself “AUTISM IS NOT MY FAULT!” Do that over and over again until you actually believe it.
6. Keep talking to your child even though they doesn’t respond. This was the hardest one for me. Ryan gave me nothing, not a look or a smile. Sometimes it feels like the lights are on and nobody’s home. But our kids are IN THERE! My son was learning even though he couldn’t show me that. All I got was that blank stare. Don’t stop talking to your kid even when they don’t respond. That is the way all children learn language. I didn’t realize the dramatic effect my constant chatter had until Ryan developed more speech. That was when I realized he knew things he could have only learned from me constantly talking to him.
7. Hang in there! Recovery takes time and a never-give-up attitude. You have to be more stubborn than your kid. Unfortunately, some kids have immune systems that are seriously compromised and cannot be fully repaired. But, you will never know if your kid is one of the ones who can improve and even fully recover unless you try. Even so, it is important to note that equal effort doesn’t guarantee equal outcome. Each child is an individual and will respond to treatments and rehab programs differently. I know many families that worked as hard as I did, without the same results.
I made a lot of mistakes, but the one thing I did right was to never give up!
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 more treatment centers