How we told our 9 year old son he has ASD

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The word Autism just suddenly entered our lives in a strong and unexpected way. With my son and I being diagnosed within a couple of weeks of each other. My husband and I were faced with the question of how to tell our son in a positive but realistic way. We wanted to avoid trauma or feelings of being inferior, or any negative reaction.

We read a few books, many accounts of how people found out from their families, countless YouTube videos. We then agreed on a way and told our son a week after the preliminary result came out and the day the Psychologist confirmed the diagnosis. Which was just 3 days ago.

My husband and I called our son to our bedroom. We told him that we needed to talk to him. I said: “You know how we’ve been taking you to the doctor, to do all those tests to check the type of brain you have? And we discovered you are very smart?” My son was very excited at this point, because he was very proud of his IQ score of 130. I continued: “Well there is more. So I want to show you something”.

So I got a piece of paper out, and had him write down on column 1 all the strengths he has and on column 2 all his challenges. Once he was done, my husband and I helped him come up with a few more. Then I had him trace a line linking a strength that could help deal with a challenge on his list. My son was very much into this activity. He really liked it. So we spent a few minutes doing this.

After he was pleased with how he had linked everything, I said: “You know how scientists like to find patterns with everything they study, and give it names? Well, it turns out that there are lots of people with very similar to yours. And this pattern has a name. It’s called Autism. Have you heard this word before?” He had not heard this word before.

So I went on to explain that there are different types of brain. They are all good brains, but are wired differently. So my husband and I got out our cell phones. He has a big Samsung phone and I have a smaller iPhone. So we asked our son to describe the phones and it’s differences. He mentioned the size, the different screens, and icons, etc. the I asked if I could make phone calls with my husband’s phone - my son said yes - and if I could also make phone calls with my phone - he said yes.

We then told him that many bright people we know in the world are/were on the spectrum. We gave examples. My son at this point was seeing autism in a very positive way and was excited about being part of a special group. In his own words, my son the asked how his autism presented in him. We gave examples of how some of the things he wrote on the list presented in his daily life: how good he is in math, music, Minecraft, etc, and how he has difficulty with friends, or noisy places, etc. We explained how more “brain wires” went to some of the fun areas, like Minecraft, than to some other areas like dealing with sound. So it was easier for his brain to do some things, bu5 a bit more challenging to do others. We said that every person with any type of brain has things they are good at and also challenges. We want always to use our strengths to help deal with the challenges.

He was very pleased, happy, and satisfied with the explanation. The next day, I showed him a video (a fun and interesting cartoon on YouTube) explaining a bit more, and he was also fine with it. We gave him a new pair of headphones, and he was so happy the entire day, happier than I had seen in a long time.

Overall, we had a great experience. We have just started the ASD conversation. This will be a long learning process. I decided not to tell that I have it too, because I wanted him to initially focus on what ASD means to him. Over the past several years, it was clear that my son and I are very much alike, and we talk about this all the time. So I don’t think it will be too long before he asks me if I have it too. But I plan on telling him either if he asks me (or if my daughter asks), or when I see that the ideas of his own ASD has solidified a bit more in his mind. To be honest I don’t think it will take long for them to ask me... It’s quite obvious we are very similar...

Great job explaining to your son.

I believe this is something important in their lives. For each of my children, I wrote a letter for them on their 8th birthday, and read the letter together with them. In the case of my son, we actually took a train ride, and we read the letter on a train, on his 8th birthday. Every year afterwards, on their respective birthday, I would go through the letter again with them. Here is the letter I wrote for my son. (Some passages masked out. There are no secrets, I just want to keep it as a family letter, so I don't share some of the more private matters.)

http://www.eikonabridge.com/Ivan_8th_birthday.pdf

I remember once my son was making a comment to my neurotypical wife: "Mom, could you try to be more autistic?" Puzzled, my wife asked him: "What do you mean by being more autistic?" To which my son replied: "I mean, try to be more smart, like dad." Ha ha. Both of my children are doing great in public mainstream class. I must say some of the school teachers have gone out of their ways to cooperate with me. Recently the school psychologist has given a discussion session with my son's class, offering a neurodiverse perspective, and letting students know that there are different perspectives on autism. My son was in the session, and the psychologist would consult with my son, as whether the psychologist's comments were on the spot. The psychologist told the class, that to some people, we don't view autism as a disorder, but simply as a difference. I mean, we are proud to be autistic, publicly. See, with a discussion session like that, and some other private discussions between teacher and other students, all bullying situations actually disappeared, and my son has a much better time in school. Other students also get to see and understand why my son has certain privileges in school. My son gets to be the audio-visual assistant during school's biweekly assembly, because he likes to tinker with electronic equipment. In his lower-elementary school (1st to 3rd grade), the teachers actually would take my son to elevator rides from time to time, as reward. (There is an elevator inside the school.) Things like that. I know most parents have awful experiences with schools, I know that because I do sit into other families' IEP sessions. I don't mean to say it's an easy journey, but the world is changing, and parents can actually make things happen. For instance, schools don't ever dare to offer social skills training to my son, anymore, because they know I don't think any autistic kid needs social skills training. (*) My son's IEP forms are so simple nowadays, virtually no goals, it's all about accommodations. For instance, he gets to be the audio-visual aide in the classroom. Things like that.

(*) Autistic children are not defective. The moment you say they need social skills training, you are looking down on them: you are thinking they are defective. I mean, it's probably a hard pill to swallow for the teachers out there. But they have been able to see how well my children have developed. I think all that social skills training thing out there is not only unnecessary, but harmful, to the development of autistic children. These children are not defective. They don't need social skills training. The only thing they need is brain development. Once they are developed, they will acquire all the social skills on their own, no different from neurotypical children.

Yippee!! !

Thanks for the tips (both of you). I have yet to have my daughter (age assessed (and my assessment is due next week), but am starting to socialize the idea (read the children's book as a family about the Zebra's stripes, and a few others). It's interesting to see how much we share in common but we have different personalities, so her experience will manifest differently than mine. Hopefully a lot better, her style and with support in place from us and somewhat more (than it was) from outside.

Yes, the Pros and Cons. Accepting and integrating the awareness. How to celebrate and use the Pros, how to mitigate the Cons. A journey.

I'm pleased you told your son and that he reacted in a positive way. You done a good job explaining it to him. You and your husband have a lot of empathy.

I was 8 or 9 when I was told, and I did not take it very well. I think I remember my mum saying, "you've got Asperger's syndrome", then my brother laughed at me. I knew it was something to do with all my bad behaviour, so it made me think that Asperger's was a bad thing. I asked, "does anybody else have this?" and my mum said, "not anyone we know. But that makes you very special." I scowled and said, "I don't want to be special, I want to be normal like all my cousins and friends." My mum said, "well you can't help having it, and you are very clever too." I just was like, "clever indeed! I sit on the special ed table in class with a small group of children with learning difficulties. What the hell makes you think I'm clever?" Yes, I beat myself up about it so badly, and I still cannot accept it to this day, 20 years later. But this was the 90s, and although the Asperger's label existed there still wasn't much positive awareness on it like there is today.

Most children don't react to it negatively like I did. You did the right thing.

I’m so glad this can be helpful! Telling a kid they have ASD is a very delicate thing. We wanted it to be a positive thing, because his ASD is a big part of who our son is and we love him for who he is. He is perfect.

I love what Eikonabridge said in his letter about “either you fit in or you stand out”. That is a powerful statement!

So sad that some of you did not have a positive experience when you were told about your ASD... knowing can strengthen you and empower you to use your strengths to manage your weaknesses. It doesn’t make the problems go away. The challenges are still very much real. My hope is that my son will have a positive attitude as he deals with his challenges.

Yesterday he woke me up in the morning to ask me more questions about his ASD. Then he asked us if either my husband or I had “an autism brain” as well. I asked what he thought. He smiled and said “yes!” He was so excited to learn I had it too, that he was jumping up and down, he was so happy! He asked me how it affected me and I gave him some examples. He was pleased with all that he learned, and comforted I had it too. He went on to have a great day.

^^ Like you said, that didn't take long at all (for son to ask you).

I think I might have been happier (like your son) if there was someone else on the spectrum at the time that I knew about. But my mother, father, cousins, classmates, etc, were all neurotypicals and didn't have the same problems I had, and I just felt alone. My brother has been diagnosed with ASD at age 30, but back when I was diagnosed nobody suspected he was on the spectrum, not even himself. He always seemed to have lots of friends and didn't ever have difficulties with making friends like I did.

I suck at drawing, too LOL

Dear GoldenMom - absolutely loved reading how you and your husband handled this. Thanks so much for sharing.x