Nine Things I Wish Someone Had Told Me About Autism!

In the beginning of our autism nightmare, I had trouble putting one foot in front of the other. Some days I was so discouraged, I wasn’t sure I could get up to face another day filled with autism.

When my son started Kindergarten, he was in the 3rd percentile for speech and lacked all functional language. Most of what I did back then was so I could tell myself I tried everything if I ever had to put him in a group home.

When my son was in middle school, my dream was that one day he might be able to hold a job at McDonald’s and live independently. But at that time even I didn’t believe Ryan could ever lead a typical life or accomplish all he has. Ryan surpassed all of my expectations, but recovery took time. And here are nine things you need to know about autism.

  1. An autism diagnosis doesn’t have to mean “Game Over.” When Ryan was first diagnosed with autism, the “experts” said he would need to be institutionalized. He is now an aerospace engineer. And what his parents wanted most for him actually happened, he is happy, leads a typical life and has friends. Ryan only began to make significant progress after his family abandoned the idea that autism was a developmental disorder and began to treat the problems with his immune system medically.
  2. Most doctors don’t realize autism is treatable. The common belief among most conventional doctors continues to be that autism is a dead-end developmental or psychiatric disorder. This couldn’t be further from the truth. Maybe that would change if we stopped calling it “autism” and instead called it what it is: a messed up immune system. Recovery for Ryan only became a possibility after his doctor treated his medical issues and improved how his immune system functioned.
  3. This is not an easy fix. Medical interventions only make learning possible. Some parents mistakenly believe their children will start talking in full sentences after medical treatment. They assume the medical stuff isn’t working when that doesn’t happen. It is important to remember, it takes healthy neurotypical kids approximately three years learn language.
  4. In the beginning our children don’t learn like other kids. They must be systematically and directly taught all they missed. There are several rehabilitation programs that do that. (ABA, RDI, Floortime, Son-rise, Verbal Behavior are just a few of the many good ones out there.) Pick one you like and stick with it. They all work once our children are healthier and able to learn.
  5. Parents must learn the rehabilitation techniques and use them. We implemented our own modified version of Applied Behavior Analysis (ABA). We didn’t hire an agency. Although, I desperately wanted anyone else to do this for us. But over twenty years ago there wasn’t anyone doing ABA or any other rehab program where we lived. There was no choice but to learn these methods ourselves and develop our own program. Without knowing it at the time, this turned out to be a blessing in disguise. The fact that our family became proficient using ABA was one of the major factors that helped Ryan. He was always learning because we were always teaching him in the most natural settings throughout his day. When he didn’t know something, school was immediately in session.
  6. We used what my son loved or obsessed over to motivate him and catch him up on all he missed. We combined the ABA techniques and used those things that Ryan wanted to talk about over and over again until we wanted to scream. That meant elevators, cars, computers, technology, sharks, electric plugs, or light switches were part of every lesson with Ryan.
  7. Recovery takes time, and a never-give-up attitude. It requires being more stubborn than our kids. It is one step at a time and one behavior at a time. That is why some parents give up before their kids reach their potential. It is difficult not to become discouraged. This is a marathon and not a sprint!
  8. Parents, behaviorists, educators, and medical professionals must work as a team to help kids get better. Each of us has a piece of the puzzle. But parents must guide the team. We are the only ones with the determination, stamina, and commitment to take on the insurmountable task of recovery. We will keep working to help our children no matter how tired or discouraged we feel.
  9. You can do this! U-turns are allowed and you don’t have to get it right on the first try. So try not to worry about every little thing like I did. Just keep putting one foot in front of the other, even when you don’t actually know where you are headed. You will made a lot of mistakes along the way, but the one thing you need to do right is to never give up…no matter how hard things get!

I want all of our children in the A-club to have a future and meet their full potential. Our story had a happy ending, but how many parents are still told by their pediatrician and psychiatrists that there is no hope for their children’s futures. And how many kids will not get better as a result?”

Marcia Hinds wrote I KNOW YOU’RE IN THERE-Winning Our War Against Autism.
When her son was first diagnosed with autism, the “experts” said Ryan would need to be institutionalized. He is now an aerospace engineer. And what his mother wanted most for him actually happened, he is happy, leads a typical life and has friends. Ryan’s inspirational story is told in a way that is heartwarming, heartbreaking, and sometimes hilarious. Marcia has a degrees in Psychology/Sociology from UCLA and a teaching credential. But Marcia’s most impressive credential is that she is Ryan’s mom and their family beat autism.

By Marcia Hinds – Ryan’s and Megan’s Mom