Raising a Child With Autism: Paige and Iain's Story

Paige and Iain always knew their son Lochlan was "quirky" — that something just wasn't right with him. As an infant, he didn't make eye contact. And by 15 months old, he showed no interest in walking or talking, and never called for his "Mama" or "Dada."

Even though they knew that something was wrong, the news that their 3-year-old son had autism sent Paige and Iain into a state of shock. Like many other parents whose children face the same diagnosis, they felt angry, scared, and uncertain about their son's future.

Now, just a year later, they're thankful for their son's diagnosis. Without it, Paige says, Loch may have been bounced from doctor to doctor, lost in a cycle of misdiagnoses, and missing out on the care he desperately needs. After just a few short months of treatment, he's made great improvements and is learning more and more about the world around him.

Below, Paige shares her family's story with KidsHealth. She talks about the challenges of raising a child with autism, and urges parents not to fear the diagnosis, but to embrace it, so that families can move forward.

Very early on, you were able to move past the shock of your son's diagnosis. How did you do it?

Well, it didn't happen overnight. And it wasn't easy. A couple of weeks after the initial shock, I stepped away from my emotions and took a real hard look at my son. I realized that Loch had been autistic since the day he was born. The signs were there: his obsession with putting things in order, his inability to express himself.

We felt so angry that we had this beautiful child who was so loving and giving but who was locked in his own mind. Sometimes we still feel this way, but when we find ourselves getting frustrated and angry, we think about how Loch feels: What's it like for him? That's when Iain and I realize that we can't fall apart, we can't let him down, and we have to be strong and do what's best for him.

Once you and your family began to accept the news, what were the next steps you took?

We met with our local school board and eventually got Loch into a special education class. We discovered that he really needed teachers who had experience working with kids who were autistic, who understand how their brains work. It's difficult for young kids with autism to reason, so you can't tell them, "We don't push our friends because they will fall and get hurt." Their brains can't process that message. Instead, you just have to say, "Don't push." It's great when you have a teacher who understands that.

Early-intervention counselors also recommended a weekly class for us to go to together as a family. The class gives parents the tools to determine what their child understands and doesn't understand, how to communicate better with each other, and how to embrace and express emotions.

Since Loch started his classes, his vocabulary and eye contact have really improved. His imaginative play — nonexistent just a year or two ago — is now stellar. Before, Loch had no give-and-take in a conversation, but now we might get two to three interactions back and forth with him. He's also become better at regulating himself, so that means that he's learned how to calm himself down, and allow others, like me and his dad, to help him calm down.

That's great news! Have the classes helped improved your interactions with Loch, as well?

Definitely. We have a better understanding of his world. For example, we've learned that Loch doesn't do well with surprises, so we try to stick to routines. It doesn't have to be a set-in-stone routine, but it does have to be "A" is followed by "B," which is followed by "C" so he can anticipate what's next. We also try to prepare ahead of time when there is a break in normalcy. Take going on an airplane, for example. Some airlines offer special-needs travel so we can get a seat that will make Loch comfortable.

We are also trying to help Loch understand his feelings, and the feelings of others. So we use a lot of exaggerated emotions and facial expressions. If he hits his brother with a pillow, even if his brother's fine, we say, "Oh, no, he's so sad, let's give him a hug." This teaches him that his action has hurt somebody, and to consider that person's feelings.

We also want him to see people as people, not just as objects that do things for him. So we teach him that he has to initiate eye contact to get what he wants. Say it's a piece of cheese: We start by holding it up at eye level and get him to look at us in the eye before we give it to him. That way, it's not just an object that gives out cheese, it's "Mommy or Daddy give me cheese."

You have two other children. How do they relate to their brother?

Having a child with autism affects the whole family. So we make an extra effort to spend special, one-on-one time with each of Loch's brothers. We try to explain what's going on with him so they understand.

For example, sometimes when Loch gets very angry or upset he yells, throws things, hits people, and vomits. Over the years, we've learned that the only way to calm him is to intervene the moment we see him becoming upset. One night when Loch began one of these episodes, our 6-year-old said, "Make the noise stop, Daddy!" Iain had to explain to him that Loch's brain doesn't work the same way as ours does so it's harder for him to tell us what's wrong.

So our boys do get frustrated with Loch, but they understand that their brother loves them very much and just has a difficult time being a playmate. Usually when the boys have a disagreement, they end up hugging a couple seconds later. And if Loch sees one of his brothers is hurt or distressed, he will find a toy to take to him to cheer him up.

It sounds like you've been able to work through a lot of the challenges already. Which have been the hardest?

For me, it's hard to watch Loch struggle with words. He gets so frustrated when he can't get his point across or even tell us what hurts or if he's thirsty. His vocabulary is growing daily, as is his ability to recall a word when he needs to out of context. However, it's still common for people to say, "Use your words" when he goes into jargon. Little do they know, he is using his "words." In his wonderful little brain, the words are clear, his message has meaning.

I guess other people pose the greatest challenges — all those "What's wrong with that child?" comments. You never want to throw out "he has autism" as an excuse. It's a reason, not an excuse. So when this happens, I don't put it out there unless there's some overwhelming factor going on. This has taught me to be more empathetic toward kids who are losing it for any reason or parents who are frazzled. If I see people struggling, I just want to go help them.

Have you ever reached out and asked for help yourself?

I've learned that I need to ask for help. And I've learned not to be ashamed — and that's really important. Having a son with autism has taught me how deeply and unconditionally I can love a child. It forces me to slow down and experience things other parents don't because my child sees things in a different way.

I always say that Loch is gifted. Because autism really is a gift that lets us learn about a world most others will never get to experience. So, no one else will understand why Loch has to carry around an empty box but his dad and me. And no one else will get why he does the little happy dance we call "prancing little pony."

Although your journey with Loch has just begun, it seems like you've learned a lot already. What advice can you offer parents who are just learning about their child's diagnosis?

Our advice to parents: Don't take what you read about causes and treatments at face value just because a public figure says so. Do your own research. Read. Find an expert — a therapist, a doctor — you connect with and your child connects with. Use that person as your main sounding board. But even then, don't take what they say as gospel. Your child is unique; you have to find what works best for your kid. And don't be afraid to ask questions 50 times until you can get your mind around it.

Listen to people who have been through this already. Local societies are great for meeting other parents. Learn from what they know, such as whether your state has passed laws making it illegal to limit the number of therapy visits in a year. Chances are your paths will cross with someone whose child is at least similar to yours. They can tell you, "These are the things that helped us."

Most of all, don't be afraid of the diagnosis. Autism is not a prison sentence. After the frustrations and misdiagnoses of Loch's early years, we found that having a diagnosis of autism opened doors better than trying to get services when we had no diagnosis.

Reviewed by: Persephone Jones, MD
Date reviewed: April 2010