7 Things I Wish Someone Had Told Me About Autism

When we hear the word “autism,” parents are terrified and hope the doctor is wrong. Here are the 7 things I wish someone had told me when Ryan was first diagnosed with autism:

1. There is a lot of information out there and no one agrees on anything.
Don’t allow this frightening diagnosis to overwhelm you. You know your kid best. You must learn to trust your gut. Stop looking for someone to do this for you, because no one wants your job.

2. I know there is no magic bullet or instant fix. 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 it is treatable. 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. Autism is complicated and sometimes it takes more than one doctor because autism often results from the combination of many medical issues.

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 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 he or she doesn’t respond.
This was the hardest one for me. Ryan gave me nothing, not a look and not a nod. 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 because they don’t respond. That is how all kids learn language. I didn't realize the dramatic effect my constant chatter had until he was better. That was when I realized a lot of the things he knew he 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. But equal effort doesn’t guarantee equal outcome.