Guest Writer: Karen Kaizuka, parent

Fear. That is the overwhelming feeling that rushes through me when I think about telling my son that he has autism. What do you say? How do you say it? Can we just not tell him?!!

Our little guy is 6. He was diagnosed with autism when he was 4. He is doing remarkably well. He is learning how to read. In fact, he is reading absolutely everything around him and is asking what words mean. We can’t drive down the road without him reading signs, “No Parking”, “Bridge Closed”.

Every time we drive past the mall, he says, “JCPenney’s.” One day he said, “Mom, what is JCPenney’s?” I responded, “It’s a department store.” The next time we drove by he said, “JCPenney’s. A department store.” He then asked, “Why is it called ‘JCPenney’s?”’ I had no clue, so I quickly turned to Wikipedia for the facts.

He’s come such a long ways from a few years ago when he had lost most of his speech. I never thought that he would be able to answer a question. How many times did we act out skits about how one person asks the question, then the other person answers the question? No matter what, he would always answer the question, “What is your name?” with, “What is your name?’” Now to have him inquisitive and asking questions is a dream come true!

I should be celebrating the amazing procession of successes that we’ve experienced in order to be in this unique position that he has become self-aware enough to understand that he might be different than others. Yet, when we pack up the car to partake in ‘Autism Day’ or ‘Walk Now for Autism Speaks’, I feel the fear bubbling up in my chest. What if he asks, “What is Autism?”

One great thing that we have learned since autism has entered our lives is to focus on the here and now. We have to. It’s so easy to get lost in the unproductive stream of thought that quickly pulls you under once you start trying to unravel the mysteries that surround autism. As those of us living with autism know, the answer to those questions is inevitably, “I don’t know.” Although this ‘live in the moment’ kind of thinking is necessary to both deal with the difficulties of autism and also appreciate the sweeter moments, it leaves very little time to anticipate or prepare for the next step.

Do we start to introduce the notion as to what autism is? Is there a metaphor for this that a 6 year old may understand? One thing that I’m certain of is that I do not want the conversation of ‘what autism is’ and the ‘you have autism’ conversation to occur on the same day. To avoid that, the seed has to be planted sooner than later. I think that we would all agree that the worst imaginable situation would be to hear from someone else that he has autism when he doesn’t even know what it is. On an episode of Parenthood last year, the young boy who has Asperger’s overheard someone else talking about him having Asperger’s. It was devastating for the child as well as the parents.

Over the course of the last few months, JCPenney has become a source of conversation. Not only do we know that JCPenney’s was named after James Cash Penney and founded in Kemmerer, Wyoming in 1902, but we also talk about what you can buy at JCPenney’s. Maybe someday soon I’ll tell him that the shirt that he is wearing was actually purchased at JCPenney’s. Maybe we’ll even go shopping there.

We asked our Clinical Director, Felice Orlich, for some guidance on telling your child he/she has autism and here is what she had to say: 

  • For younger children, start early. Plant the seeds by helping your child to see the diversity that exists among people and things –how people do things in their own unique way. For example, siblings who have different personalities or ways of thinking. “Sister is artistic (loves to color or draw), and words come easily to her while you are great with facts, and numbers (can count to 100 by twos) come easily to you.”If you have pets, you might point out that different breeds of dogs have different temperaments. “Border Collies are hyper-focused and are good with people, but not so much with other dogs while Labs are goofy and love being with people and playing with other dogs” or “Our cat is shy and likes to be alone while our dog likes to be near people all the time”. For kids who may have trouble relating to differences among people, they may be able to recognize differences in species of animals or in something of interest (super heroes have different super powers, there are different kinds of trains, etc.). It may help for kids to know that “we all have something” – some kids have asthma or need glasses or are shy.
  • Also point out how alike people are – that we have more in common than it might appear – and that we are more alike than we are different.  For example, we all have feelings so we all feel sad at times or angry at times or we all have to live/go to school/work with others so it’s important to learn how to get along with others. We also all have strengths and challenges – things that are easy for us and things not so easy. We all learn and grow and change. And the way we feel and the things we like will likely change over time.
  •  Help your child to think about how he thinks! “Your brain was made to think about trains and how they work.” “That may change over time to other things but now your brain is focused on trains.” Or “Your brain is sometimes too focused” or “Your brain has a hard time focusing” and here’s what we can do to help it.” You might try the colors of the rainbow to describe differences – blue for calm personalities, red for active ones. Ask your child what color he’d use to describe himself. How does he see himself relative to others?
  • Rather than describe autism as a disability, think of it as a way to describe the way your child’s brain works. Point out the strengths of having a brain that works this way – “You have a great memory” or “You see details that others miss”.
  • There is no right age to tell your child – it’s more a matter of right developmental level. Kindergarten and 1st grade are a time when kids start to see differences and hear descriptive words to describe or group kids such as the kids who are “busy”, “shy”, “active”. If your child begins to ask about his differences, this is a sign of readiness to have the conversation. For older kids who are evaluated for autism to a milder extent, Dr. Orlich recommends that the child be part of the feedback session after the evaluation, not necessarily in the room for the first part but at some point.
  • It’s important for a child to know that, “you are not autism”. “You may or may not want to share with others that you have autism. Knowing you have autism may help you understand why you may feel differently or see yourself as being different but it doesn’t have to define you.”  Your provider can help with this discussion with your child so ask if you are unsure of where to start or if you are having difficulty describing autism as anything but a disability.

We hope this helps give you some ideas on when and how to talk with your child about having an autism diagnosis. We’d love to hear your story and so would other parents who have yet to broach the subject!