7 Things I Wish Someone Had Told Me About Autism
By Marcia Hinds –- Ryan and Megan’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 my son was first diagnosed with autism:
- There a lot of information out there and no one agrees on anything. Don’t allow this frightening diagnosis overwhelm you. You must learn to trust your instincts. You are the “expert” on your kid because you know them best.
- There is no magic bullet or instant fix. I know this is true 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 sometimes 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.
- 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 even harder is that sometimes it takes more than one doctor to address the multiple medical issues your child may have.
- 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.
- 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!” Say that over and over again until you actually believe it.
- Keep talking to your child even when they doesn’t respond. This was the hardest one for me. Ryan gave me nothing, not a look, not a nod. Just that blank stare. But keep talking to your kid even when it seems like the lights are on, and nobody’s home. I didn’t realize the dramatic effect my constant chatter had, until Ryan was better. My son was learning even though he couldn’t yet communicate that to me. My kid was IN THERE. Our children know more than they can say, and notice more than you realize. So never say anything negative about them when they are present. Every child needs to know their family believes in them.
- 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, all children improve with medical treatment and some fully recover. However, 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.
You can do this! I made a lot of mistakes along the way, but the one thing I did right was I never gave up no matter how hard it got!