When Do You Tell Your Child They Have Autism
How do you know when it is the right time to tell your child about their Autism?
Is it 6, 7 or even 10? Do you tell them about their Autism at all? Or, what happens if they ask you first? These are the questions that I hear from many parents who are struggling about deciding when it is the right time to tell their child they have Autism.
According to the NIH (National Institute of Health) Autism spectrum disorder (ASD) is defined as a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior. Autistic disorder, sometimes called autism or classical ASD, is the most severe form of ASD, while other conditions along the spectrum include a milder form known as Asperger syndrome, and childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS). Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group. Experts estimate that 1 out of 88 children age 8 will have an ASD (Centers for Disease Control and Prevention: Morbidity and Mortality Weekly Report, March 30, 2012). Males are four times more likely to have an ASD than females.
My son was diagnosed at 2 years old with PDD-NOS. I remember asking myself, "what does this mean for us, for him?" In our situation, we were fortunate enough to be receiving Early Intervention (EI) due to his premature status. He was a thirty-weeker and needed EI from the time he left the hospital at 2 months old. Because of this, we began services very early on for him.
Once he was formally diagnosed, I scoured the internet searching for any information I could about ASD and PDD-NOS and frequently found myself on the Autism Speaks website. This site has so much information to sift through I became instantly lost! I decided to tackle the site piece by piece and I only allowed myself to read for one hour per night. Each night I let myself absorb the information I was reading.
By getting involveed with Autism Speaks, I became aware of the Walks they have as fundraisers. I decided that every year, I would participate in the Walk for Autism. This event was the perfect way for me to educate my friends and family about Autism and how it affects so many of us. I formed a team and I had special shirts made in support of my son. I am telling you all this because, what I was not prepared for, was 4 years later when my son asked me why his name was on all my pajama shirts. He was six years old at the time. I never thought a thing of it when I would put on a walk shirt every night for bed! And here it was, such a simple question and yet, I was very unprepared. I thought I had so much time to figure this part out. I knew I needed a plan. I am not sure how I managed to divert his attention, but I did.
And then, that night, I cried. Not because I was sad about his diagnosis, but because I could not shield him anymore; because the realization that he was maturing hit me like a ton of bricks. For so long I instinctively and immediately organized his life. Now, all the hard work was paying off and he was asking questions, he was inquisitive and I was not prepared! How was I not prepared??? He was growing up and though it was/still is my role to make sure he is empowered to be the best person he can be, I was not ready for this next milestone and I needed more, I owed him more, he deserved answers.
Because, I am a researcher by nature, I decided to read about how other parents handled this situation. I knew this process would have to be a multi-pronged approach.
Here are the steps I took and I hope they help you too:
1. Start the Conversation: The first thing I did was purchase books. I know what you are thinking, "we already have books about ASD". I bought different types of books. I bought kid-friendly books about disabilities and Autism specifically.
The first book was called . In this picture book, the New York Times best-selling author helps children learn to understand and appreciate those with special needs. My thought was that we would incorporate this new book into our nightly reading ritual. As we read, both my children had many questions and we were able to thoughfully speak about what this story meant and how it affected them. In Jesse’s Shoes
The second book was called . The Author describes Ian's sister Julie. Julie can't wait to go to the park and feed the ducks with her big sister. Her little brother, Ian, who has autism, wants to go, too. Ian doesn't have the same reactions to all the sights and sounds that his sisters have, and Julie thinks he looks silly. This book was an aha moment for my daughter (his twin who is not on the spectrum). Immediately, she recognized similarities between Ian and her own brother. Ian’s Walk: A Story about Autism
It was then my son asked me again, "Mommy, am I like that boy?" I honestly remember thinking, this is it Lisa, this is your moment as a parent to either teach him and use this moment to help him, or sink my head in the sand and not deal with this very complex situation. I chose to tell him.
I used the two books as social stories about Autism and being different. What is different anyway? I asked each child to describe to me what they thought different meant. It was such an enlightening time for us because the more questions they asked, the easier it was to be open.
One year later and we still read these books. It is still bittersweet for us. On the one hand these books help him understand how he and how others in his school behave differently than many other students at times. But they also serve as a reminder to him, that he has Autism and it is a part of him. It is the perfect time for me to remind him that is not so much what we have but instead how we deal with it that truly matters.
2. Be Prepared: I wanted to be very prepared for this undertaking. Not only will you have to work through your own emotional journey, you will need to be prepared for how your child may react. My son cried. He asked me to please take it away and that he did not want it anymore. It was heartbreaking. But, it allowed me to then speak to both children about labels. My daughter is asthmatic and uses medication on a daily basis. I used her situation to help him understand that it's not what you have that matters, it's how you handle it. We spent the better part of an hour talking about what Autism is and how it affects him directly. It was then I could see the light in eyes. The story and our conversation allowed him to see that sometimes the way we behave is difficult to control, but we have choices. I asked him about what happens to him when he gets angry. He told me he likes to hit things, which I said was ok as long as it was not me! Immediately, he said, "oh, I could hit my pillow or my bop buddy!" As part of the breakdown about Autism, there is a sensory piece in the book about hearing sounds, identifying smells, etc. I told him, that his ability to hear many noises at once was like a super power that he has and it was cool he could hear what others may not! I embellished a bit, but I knew it would resonate.
3. Talk to Teachers/Therapists/Family: For that week we spent a lot of time talking about what makes him sad or angry and what he can do to help himself. But, I thought, that still was not enough. I set up time with his teacher and his therapists and let them know what had transpired. I wanted all of us to be on the same page if he had questions. I also brought them copies of the books so that they could share with other students. All of the professionals in his life were very helpful and completely understanding. I also told my family. I wanted to be sure that if he came to any of them with questions about his Autism, they would know how to react for his sake as well as their own.
4. Never Stop Talking: I worried so much in the beginning about labels. Would they define him Autistic? Would others define him by this label? It does not matter. In our home, we are honest and we speak openly about the things that can sometimes inhibit us from doing things we love. I told them that people are not always nice and that sometimes we just have to ignore what people say and that is ok. As long as we are not mean and we do not make fun of people, we will work things out as a family.
There are many times that he tells me that he is fine, after all he has friends, or he can talk, or he only has it a "little bit" because he does not have as many tantrums as he did in the past. I just keep reiterating, that like his sister's Asthma, how you treat it will determine how well you feel. I still worry about what his friends will think or say to him about his Autism and then I realize that the only thing I can do is encourage him to be open and honest and strong. He knows he can come to me with anything and I hope that never changes.
Life for him (and his sister) has not changed much. For me, telling my son he has Autism was the day I realized that I truly am shaping his life and the man he will become and I pray I am doing it right!
One last thing about the shirts. He asked me again, why I had shirts with only his name. And I told him that we raise money by doing a walk for all the kids that need extra help. I explained how lucky we are to have an organization that helps kids and that since he is doing so well, we can walk for others that may need "extra special attention." He looked at me and said, "ok, that's ok, I like being special!"
This year marked our 5th walk and a boy with Autism sang at the opening ceremony. He was blind as well and he played the piano. My son was awestruck by this boy and his accomplishments. He could not believe he was blind, I then told him he also had Autism. He just looked at me and said, "Mommy, that is so cool!" It was the first time, he understood that having Autism does not mean you are less, it just means, you are you and THAT is special!
I encourage you all to share your stories about telling your child they have Autism, as there are always going to be first-timers who will appreciate any advice.
Text Copyright © 2012 Lisa Davis
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© 2012 Lisa