By Marcia Hinds – Megan and Ryan’s Mom
Most children want to interact with the people around them, but not my kid. Ryan was never “typical” before we treated his autism medically. Although Ryan now works as an engineer at a major aerospace company, when we first started down the road to recovery, my weird little kid lacked every social skill ever invented. And I never imagined his life could be what it is today. Back then, I was just trying to survive and get through a day filled with autism.
As my son started on the road to recovery it wasn’t always an upward climb, some things got harder. When Ryan’s immune system was still seriously broken, he didn’t care that he didn’t have friends. It didn’t matter to him that he wasn’t included at school or with the neighborhood kids. And sometimes life almost seemed easier before Ryan wanted friends. But the thing parents want most is for their kids to be happy. Yet, those important social skills our kids need to learn are the last thing to come and the hardest thing to teach.
When Ryan was still checked out, he preferred to be alone. He avoided anyone who wasn’t in our family and most times “tuned us out.” His overwhelming need for “sameness” directed most of his actions. He was consumed by the strange and repetitive behaviors that helped him cope with this confusing and overwhelming condition we call “autism.”
He would spend all day, every day, plugging in his portable radio into every electrical outlet in our house. When he wasn’t doing that, he traveled from room to room turning on and off the lights and faucets. Whenever anyone came over, Ryan hid in the back of the house, so he didn’t have to interact.
I had no clue how to teach those social skills that were the most important thing my son needed to learn. They were the biggest obstacle Ryan had to overcome.
At that time, he had no functional speech. My kid never said “Hi” when he entered a room, and couldn’t have a “normal” conversation, even with us. The only time Ryan said anything was to ask for something he needed or talk about one of his restricted interests. He talked nonstop about elevators, cars, computers, technology, sharks, extension cords, electric plugs, or light switches. Ryan repeated the same scripts we had heard a million times, over and over again, until we wanted to scream.
After we combined medical treatment with the educational and behavioral therapies, Ryan became more engaged. He even became interested in the world around him. Once his immune system started to function better, he no longer spent every waking moment doing strange things and avoiding people he didn’t know. The good news was now Ryan wanted friends. The bad news was my son hadn’t yet learned the complex social skills necessary to have any.
It became increasingly obvious that my child was not having much success socially, anywhere. Friends weren’t happening at school and barely happening at home even with all our help and coaching. Ryan cried when he realized he wasn’t included or wanted. And sometimes I cried with him. He was lonely. His parents and sister were his only friends, except we weren’t really his friends. We were his family. Ryan had no real friends.
My son was never invited to play, and didn’t have anyone to sit with at lunch. I would have traded all the things he excelled at academically for one good friend at school. I would have been the happiest woman in the world if anyone invited my kid to a birthday party. But that only happened once in all of elementary school. Usually, he was the only boy from his class not included.
One day I found Ryan alone and crying in his room. When I asked what was wrong, he told me he didn’t have any friends. It took some prodding, but my son soon confessed that he was afraid to talk to me about this. Mostly because he knew I wanted him to have friends more than anything. I made the mistake of telling Ryan to watch Jack in his class to learn why he was so popular and how to make friends. I regretted doing that when my son asked me, “Don’t you want Jack to be your son, because he has friends?” It broke my heart that Ryan didn’t realize he was, and continues to be, one of the best things that ever happened to me.
Ryan tried to reach out and make friends. But he didn’t understand the rules or social cues. My child made the same mistake over and over again of talking about his restricted interests. The topics he picked were nowhere close to being age appropriate. No one else was interested in the things he discussed, and they weren’t relevant to what was happening at that moment. After the many inevitable rejections, he stopped trying to connect with other kids and just withdrew.
At home with his family, my son acted differently. Ryan had no fear of rejection with us. We didn’t shut him down when he started talking about sharks. We listened and acted fascinated when we heard him say the same thing for the hundredth time. We tried to engage him and expand his limited topics of conversation. But it was easy to see why kids didn’t want to work that hard to have a playmate. Even his family, who loved him, grew tired of his antics and the work it took to get him to engage.
I didn’t know how to help Ryan learn what he needed to know. I tried to create social opportunities at school and make them happen at home with play dates. But at school, he didn’t act like the sweet kid who felt safe and loved at home. Any gains he made first happened at home, before they emerged at school. Since he didn’t know how to successfully approach other kids, he would do anything to get noticed. Instead of asking someone to play, Ryan resorted to poking “his friends” to get their attention. Because getting negative attention was better than no attention at all.
Trying to break into social situations can be difficult for any of us when we don’t know the right thing to say and haven’t connected with someone else. If it had been possible for Ryan to stop worrying so much and just be himself, he’d have all the friends he could ever want. But it took years before that happened.
When Ryan was still in middle school, my dream was that maybe one day he could hold a job at McDonald’s and live independently. But even then, I wasn’t sure that was possible. Ryan was still learning and refining very basic social skills when he first started college.
In time, what I wanted most actually happened. Ryan now owns his own condo a mile from the Pacific Ocean. He goes out with friends and surfs anytime he can. Ryan is happy, has an active social life, and a great group of friends!
The icing on the cake is that Ryan has a job he loves. Ryan works as the liaison between his company and the airlines. Without that engaging sense of humor (Ryan wasn’t supposed to have), my son never would have been hired for this position. Autism no longer identifies who Ryan is, as a result the people he works with have no idea he was once severely affected. We both had a good laugh after he called me to report his boss complimented him on his “great people skills.”
One of the hardest things to deal with when you have a child with autism is you don’t know the rest of the story. You have no clue how things will turn out. Not only do you have an awful day-to-day existence dealing with the behaviors of your child and the shortcomings of our medical and educational systems, but you are frightened beyond words about your child’s future.
Our biggest fears center on what will happen to our children when we can no longer care for them. With proper medical intervention, good timing, and hard work…it becomes possible for more children to have a different outcome.
Children are recovering from autism and yet the general public and most of our mainstream doctors aren’t aware that this possible. That is what must change, so what happened for Ryan is no longer the exception. Sometimes I just want to pinch myself that what I wanted most for my son actually happened. My son is leading a happy life complete with friends. However, at the same time I have survivor’s guilt.
Although most kids improve when you combine these interventions, we know those with severely compromised immune systems cannot recover as yet. Our children are individuals and will respond in their own way to both medical and behavioral interventions. Each of our children suffer from different medical issues. Autism is complicated and caused by several medical conditions combined. If parents realized their children can get better, they might not give up (like I almost did) before they found the answers to help them.
If the world knew many of our kids can get better, more treatments and research will happen that will help more kids!
So yell it from the rooftops and tell everyone you can get to listen that AUTISM IS TREATABLE!
We must join together and not stop until everyone hears our message. All of our autism groups must stop fighting among ourselves about the causes of autism, and unite under one message we can all agree on….AUTISM IS TREATABLE! Parents, behaviorists, educators, and medical professionals must all work as a team. Each of us has a piece of the puzzle. It takes all of us working together to change the thinking out there. If we join together, we will be one strong voice that can’t be ignored. That is the only way we will win our war against autism!
ALONE there is little we can do about autism!
TOGETHER we will be unstoppable!
NOTE FROM MARCIA HINDS – Megan and Ryan’s mom:
Ryan became an aerospace engineer, because he received proper medical treatment combined with behavioral, and educational interventions. To preview my book, “I Know You’re In There – winning our war against autism”go to Amazon or my website www.autism-and-treatment.com
Contact info for Marcia: