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!
Such a picture perfect match of my internal thought process when it comes to me thinking about talking to my son about his autism (7 year old boy). We have not had the conversation yet, in fact my husband & I have been talking about just that. I really appreciate Dr. Orlish’s comments – they were very simple and lord knows simple is a rare treat with autism & autism treatment. Thank you ladies for your thoughts – I’d love to hear more from both of you!
Luckily We won’t need to have this conversation because we treat it like anything else. My older son has blue eyes and likes photography while my younger child has grey eyes, autism and likes creating really complex lego inventions. We’ve never hid that he has autism so he doesn’t think anything of it. That might change later but at 6 years old it doesn’t bother him. I often tell him he thinks differently and that’s really great in it’s own way. Luckily my child is highly functioning but we still have our issues.
Thank you for posting this article. It is very timely in our family right now. Our 8 year old son has Asperger’s and we are also trying to figure out the best time to tell him when he can understand. He has starting commenting to us that he is different from his classmates and likes to do different things than they do. He doesn’t seem to be at peace with his social life right now and I truly wonder if telling him will begin to make things come clear for him. I want to tell him in the right way so that he can feel as good about himself as possible. Thank you for your advice as I continue looking for resources on this.
I couldn’t help but smile when I read about Karen’s son saying “JCPenney’s. A department store.” It reminds me so much of my daughter; she can remember the correct answers to any questions we’ve discussed with her before. When it comes to putting it into action…well, we’re still working on that. My daughter was just diagnosed last winter, and I don’t think she has any clue she’s different at this point. However, Ms. Orlich’s suggestions of gradually pointing out differences and similarities in individuals seem like smart idea! Thank you for posting about this.
As an adult with autism, here is my feedback…
I wasn’t diagnosed witha autism until I was 22 years old. I don’t know what age would have been appropriate for me to hear the news, but I felt very much relieved after hearing the diagnosis. I felt like I wish I could have known years earlier, and I felt like I didn’t have to feel ashamed or embarrassed about behaviors x y z .
I think, I would have liked to hear “you (hand flap, have echolalia, etc.) because you have autism, and that’s OK.”
It’s not like I thought I was the same as most other children. I knew I acted different and it would have been comforting to know why.
Thank Owen for sharing your experience and thoughts.
I never wanted my boy to feel broken, as he would have at 5, because he was autistic. We’ve always told him everybody’s brain is different, and spun everything to a positive, while acknowledging what was so.
He’s 8 now. The other day I told him he didn’t earn time on his tablet because he resisted getting dressed before school. He said, under his breath, clearly upset with himself, “Why can’t I ever learn?”. He was really asking himself this. It broke my heart.
I realized from your post, the desire to not have him make a life-long decision about his worth with a child’s mind, is now working against him. That telling him now will give him understanding and comfort.
Thank you, thank you. You have made my son’s life and ours better for taking the time to share. Love to you!!
Today my child was asked by a new playmate “do you have autism?” This was very interesting for us. We have had a few discussions in the past- When we went to the autism clinic and I knew she could read…I kept it short. She did not ask too many questions. But today, her answer was “I don’t know” which made me understand we need to have more discussions. It’s hard though, because we want to empower her with understanding, not limit her. I don’t like labels. We’ve always stressed how everyone has different challenges, and have pointed out her strengths.
Tami, I felt I wanted to say to you that maybe, in your concern to not have your daughter “labelled”, you are holding back from helping her to understand and accept her situation which is vital for her to do – she will have to one day and it is easier when one is younger. After all, autism is not a label, it is a condition which you as an obviously loving, caring parent can help her to learn to live with.
Thank you for this. My cousin’s son has autism and they are going through this very thing right now, trying to figure out how and when to tell him. They don’t want him to feel different but they want to be honest with him. I will send them this page because I think it will help.
I have 9 year old who I have not yet told. He is high functioning and understands autism.He knows it in positive light: he knows a lot of famous people had it, he has also seen video’s of kids such as Jacob Barnett who are amazing kids with diagnosis. I have just now begun to tell him “why, its possible that I or you can have autism and there is nothing wrong about it…it just helps us think differently and world needs a lot of people who are all different”…someday, soon , I will tell him…it seems like it might be any day now as he is getting more and more curious. Hoping I do the right thing and say the right words so that he is not affected negatively!
Thank you all for sharing, especially Owen! I will be having this conversation soon with my 8 yr old son. Not long ago, he had started asking about what that is because he has heard the word said many times already. Other kids in his class are now noticing that he doesn’t have to do all that they do–he has adapted work with breaks..and so they feel that he is getting special treatment. We are having our Behavioral Consultant come to school and talk with our class about our brains and Autism. Some things we can do (easy) and some things are hard for us.
My heart shattered into a million pieces last year, when he broke down and cried “I’m a failure”…because 2 wheel bike riding was extremely hard for him to learn and he wanted to be just like the other kids riding their bikes..I gave him a big hug and told him that nobody is perfect when starting to learn, everybody is terrible and it takes a lot of practice til you get the hang of it..hey, your older brother used to ride into bushes and trees instead of using the brakes! And with that, he smiled and felt better.
I am from South Africa so I don’t have access to all the resources you have in the USA!My husband and I have a beautiful daughter who was diagnosed at 3 with PDD – essentially high functioning Autism! She has been through very intensive treatment her whole life from an early stage – she is now a beautiful 14year old who has her teenage moments but is incredibly special! She has come so far and is so high functioning that at face value it is difficult to tell she is on the Spectrum!The challenge with this however is that she still has difficulties in certain areas like social skills and friendships at this age! She finished her schooling at a mainstream Primary school with no extra support but is now at a mainstream private school which is extremely difficult for her particularly the abstract fields like Maths! I have never explained to her that she is on the Spectrum because there hasn’t been a need to but now that she is battling with friendships and school I fee it is the right time to tell her! Can anybody share any of their experiences of sharing this information with their teenage children and what worked/didn’t work!I would value this immensely!