a conversation. from tonight.
Gerry came out of the shower and was scrounging around for his pajamas.
“Mom. I have an idea for that book we were talking about.”
He was alluding to a discussion that he and I had had a few months ago. We were talking about his relationship with Howie, and I said maybe we could write a book together about it.
“Shhhh.” I said. “Tell me quietly. I don’t want your brother to hear.”
Gerry stopped what he was doing and looked right at me.
“When are you going to tell him he’s…different?”
I stood there. Waiting for what was coming next.
“Don’t you think he should know about his autism? So he understands? I know most of his friends are from his school and are like him, so that’s really good. But at some point, shouldn’t he know? Because really? Sometimes it’s very stressful for me that I know but he doesn’t.” His eyes teared up a little.
I knew I had to choose my words very carefully here. This…was important.
“Yes, of course he needs to know. Dad and I just have to figure out the right time. He’s only five.”
“Do you have friends who have kids with special needs? Kids who are older? Can’t you ask them when they told their kids?”
And then my kid wows me. Again.
“You know, it’s not fair. All his timeouts. At first I thought they were good. Teaching him. But if he can’t help it, then the timeouts aren’t fair, are they? It’s like if you’re driving and your car’s wheels lock up. And you hit something and cause a lot of damage. It’s not your fault that the car didn’t work the way it should. Right?”
I’m in awe of this kid. Of how much he loves his brother. Of how much he gets it.
“Mom. Shouldn’t he know so he understands?”
“Yes. He should. I will ask my friends how and when they told their kids. And what they said. You’re a pretty smart cookie. Now let’s talk about that book.”
So, I’m asking you. My friends. When did you tell your kids that they were…different?
“I’m accustomed to a smooth ride
Or maybe I’m a dog who’s lost it’s bite
I don’t expect to be treated like a fool no more
I don’t expect to sleep through the night
Some people say a lie’s a lie’s a lie
But I say why
Why deny the obvious child?
Why deny the obvious child? ” – The Obvious Child by Paul Simon
Try Defying Gravity 
January 21, 2012 at 10:40 pm
I’m interested to read the comments on this one. My boys are almost 5 but I don’t think either one of them are old enough to handle something like that. Right now they have a hard time just asking for tangible objects. I know one day their little sister may ask me the same question & I want to see how others have answered it so that I’ll be prepared when that time comes.
Also, I’m amazed by the depth with which your son understands his brother. It’s a very beautiful thing. (((Hugs to both of you)))
January 21, 2012 at 10:42 pm
You have one smart little boy… We haven’t specifically said anything to my son yet, as he is only four. I’m sure that as he gets older, he’ll notice that we are involved in Autism awareness groups and things like that though. We, too, have chosen the time-out route and try very hard not to overuse it because I don’t think he always understands why he is being punished.
January 21, 2012 at 10:50 pm
What a beautiful and wise son you have. I can’t wait to read his book.
January 21, 2012 at 10:59 pm
My five year old was diagnosed just after turning four and we told him from the start because he was very aware that he was failing at so much socially and I wanted him to know why.
I wrote about it here if you are interested. http://outrunningthestorm.wordpress.com/2011/10/07/mommy-sam-has-aspergers-just-like-i-do/
His therapist and us have spent a lot of time helping him understand what it means and for now at least he is proud of who he is. Good luck, it sounds like you’ve got some great kids!
January 21, 2012 at 11:10 pm
I am interested in hearing this, as well, as my son is also 5….and he still isn’t fully aware, and I don’t know if he could comprehend what exactly Autism is or why it makes him who he is…
January 21, 2012 at 11:16 pm
I haven’t.
I can’t.
I’m … a coward. Unlike your amazing son.
January 21, 2012 at 11:29 pm
My son is 11 and while we have told him that he is different, he so into his own world that I don’t think he really cares. He just sort of said ok and went back to playing with is legos. My older son really has a hard time with it though. He is 13 and very embarrassed by his brothers behaviors and actions.
January 21, 2012 at 11:50 pm
We haven’t say down with Ryen to talk to him about his Autism diagnosis. He’s also 5. His communication is very lacking though I know he understands much more than others believe. We sat our oldest down after the diagnosis and talked to him about it, answered questions, listened to his concerns. My sister did the same with his cousins.
Though we’ve never “talked” about it, we’ve never hidden it from him or others we interact with. I think of it as fact and when he has questions, we will answer them.
My husband and I fought infertility for 3 years before our oldest came along. Before that, we discussed adoption and all that goes along with it. I feel it is not something that should be hidden from a child, the fact they are adopted I mean. I have seen the effects of those that “never had the right opportunity” to tell their children and the pain they felt when they found out. My theory is, and I say theory on purpose, is not hiding it means there is nothing to be ashamed of, nothing that makes us love him any different, nothing that will change facts. We do not throw a diagnosis in his face though we hide nothing. Every day I wonder when the questions will come and every day I prepare for that moment and every day I pray I have the right answers to give him.
January 22, 2012 at 12:44 am
You have one very amazing little boy there. He has a deep level of understanding that I so wish all the adults in our life would have for my son. Amazing
January 22, 2012 at 1:51 am
wow. your son is wise beyond his years… truly an old soul.
we’re still working on that with our oldest son (9, Asperger’s). he knows and we began the conversations around the time he started to realize he was different than some of his friends (which is agonizing to see as his parents)… but he still doesn’t always get what it means. he’ll see the autism awareness commercials and ask afterwards, “do I have autism?” then we talk more about the conversations we’ve had. now that his sister (6, also Asperger’s) has been diagnosed, he seems to be able to explain some things to her and to us in his own words – from his own experience, which makes me feel blessed on so many levels. he knows he’s had his own “team” walking for autism awareness every year and that now the team will be named for them both. (he’s also happy that now the team t-shirt will be co-designed by his artist sister 😉 )
but day to day there are so many layers that we are still trying to understand about it ourselves, even as adults… so we include him in any new information that comes our way. he now knows that his OT sessions are therapy for his body (mind and spirit!) and not just hid “play time in the ball pit with Miss Andrea.”. it’s been a gradual process for us and I’m eager to see what other parents say here… we’re always learning!
thank you for sharing this intimate conversation with us… those moments with your son, what a gift!
January 22, 2012 at 2:54 am
I told my daughter when she was about 7 I think. She was so stressed because she was becoming aware of her limitations & that she was different. I explained that she had a condition that meant some parts of her brain were a little sleepier than everyone else’s but also pointed out that she had parts of her brain that were more wide awake than other people’s & that’s why she had talents they didn’t. Such as her fantastic memory. She was so happy that she finally had an explanation. Hope this helps. X
January 22, 2012 at 3:58 am
First off, can I say that your oldest son is amazing upon amazing. And that i am deeply envious of his compassion for and understanding of his brother. Ethan wants Jacob to be punished MORE (like all the time), and thinks his brother is horrible (sigh).
That said, I don’t talk to Jake much in detail about his autism because his language deficit is still the main issue and the subject is so abstract, and that’s where understanding just all falls apart for him. I have told him the basics – he has something called autism and it makes his brain different, and it means he often has to work harder to learn and understand things than other people do – like his brother Ethan. For now, that feels like enough.
But I have to say if he was an aspie and had the language and cognition to get it, i would talk to him a LOT more about it and help him find the online communities of other aspies and help him see the beauty in his difference, talk about the brilliance that can come, too. But that is not us. Hope this is at least a little helpful.
January 22, 2012 at 5:50 am
I don’t think there is a right age or a right time. I think it’s different for everybody.
For us – it actually didn’t occur to us to NOT tell the boys, I guess we’ve just always spoken about everything else and we didn’t even know that some people chose not to tell their children, it didnt even occur to us to wait!
We simply thought everyone was like us and told them from the get-go.
My 5 year old knows but I don’t think he actually ‘gets it’. Like I said though, there is no right age, it’s only what’s right for each individual family.
You have one smart boy there 🙂 I wish you all the best for when the time is right x
January 22, 2012 at 7:41 am
I have two sons who are now 13 and 10. In both cases, in their own ways, they led the discussion. For my older son, he was almost 8. He was having a really bad year with a teacher who wasn’t a good fit in a self-contained school, and he was coming up with his own labels. (Worthless, stupid. Though ironically, most of his classmates were also calling themselves that, so again… not a great situation at school that year). He seemed relieved that there was a word to describe the difference that wasn’t a negative one.
My younger son was also probably about 8 – he is much less affected, and he asked me questions one day about why his older brother was at a special school and went to special summer camp. (My younger one has always been in inclusion programs). When I disclosed his older brother’s status and described what it meant, he processed it and asked if he had autism too.
January 22, 2012 at 8:08 am
We told our oldest right from the start. He wasn’t diagnosed until age 8 1/2. He wanted to know why we were seeing all the doctors, so we told him. We’ve also made it very clear that it’s NOT an excuse. That he has MANY strengths, and he CAN excel, but having a diagnosis allows us to get him some accomodations to help him excel and help build on the strengths he already has. It helps us with the school to get them to stop stuffing him in that damn box of theirs that they try to stuff everyone in. Our 5yo will know from the beginning. With the oldest also being on the spectrum, and therapies a thrice weekly occurance in our house, there’s no point in trying to hide it.
January 22, 2012 at 9:12 am
I actually just asked my Aspie son what his take on this was. His words:
“In preschool I didn’t know I was different. In Kindergarten I felt different and knew I was different but I didn’t know why. When you told me it felt better because there was a reason for why I was different.”
We told him just after his 6th birthday in May of his Kindergarten year, he is now 7 and in second grade. I told him with honesty that his brain works a little differently drawing heavily on “Hairdryer Brian in a Toaster World” for guidance. In the end it was a relief for all of us. Good Luck!!!
January 22, 2012 at 9:31 am
I am not surprised your other son has the insight that you have about your younger one. Its the way we adapt to situations. He is a gifted observer and you should be very proud of the way you have raised him and are raising your Aspie.
I think you should tell him what he has. The time is never right, there is never the perfect moment, but I feel he should know. I told my Nate about a year after his diagnosis. He, like many, knew he was different, but it had never occurred to me to tell him. Not out of shame or sadness, I literally was too wrapped up in the working to make him function in this world easier to let him know why we were working as hard as we were.
If it’s okay, I’m copying my article I wrote about the day I told him he has Aspergers: http://www.autisable.com/718042623/asperger-with-no-tomato/
I hope it helps you and perhaps other readers in some way.
January 22, 2012 at 12:22 pm
we’ve done our best to incorporate it into various conversations, rather than trying to have *the* conversation all at once. for a million reasons (language comprehension, lack of self-awareness, challenges keeping attention for long) we really don’t have the option of a big ole sit down on the topic anyway.
for us it’s constant. it’s talking about different kinds of smarts, other friends who are autistic too, lots of talk about how we all struggle with certain things and excel at others.
but we do make sure to incorporate the word ‘autism’ into the conversation, rather than just the concepts. for us that’s vital so that it’s not some big word with mysterious and scary implications, but rather a word that helps identify a group of people with similar experiences who will be there to tell her as she grows up that while she may be different, but she is not alone in her differences.
here are a couple of posts (with links within them to others) that i’ve written on the topic ..
http://adiaryofamom.wordpress.com/2011/12/19/disclosure/
http://adiaryofamom.wordpress.com/2010/09/28/its-for-me/
http://adiaryofamom.wordpress.com/2011/09/30/the-conversation-revisited/
and not for nothing, but gerry is utterly fabulous. gee, i wonder where he gets it from?
January 22, 2012 at 7:26 pm
i love his concern and sensitivity for his brother. what a gift.
January 23, 2012 at 9:40 am
I had to chime in! We told Jett as soon as we got the testing results back. He was 7 or almost 7. Like one of the commenters above, he was aware of his differences and we wanted to help him name it. We also bought lots of books (go figure!) and several of them are brought out time and time again. We bought him Different Like Me by Jennifer Elder (he was reading it again this weekend), What It Is to Be Me by Angela Wine (great book for younger kids, we actually have 3 copies, one for home, and one for each grandparents house), and finally I found a fantastic book for Carlos helping him with his emotions about having a brother on the spectrum. It’s called Brotherly Feelings: Me, My Emotions, and My Brother with Asperger’s Syndrome by Sam Frender. This book is awesome and would make a great place for you and Gerry to start as you digest together what it means for him long term to have two siblings on the spectrum.
January 23, 2012 at 2:02 pm
Honestly, I think you’ll know the right time when its presents itself. We always knew our son was different and as he started to get older (around 5) he started to notice it too. We just told him little by little that he was not different but had good things other kids didn’t as well as some additional struggles and it was something called Aspergers.
January 24, 2012 at 7:39 am
What a beautiful story! And what an insightful son you have. 🙂
We have yet to get a diagnosis for my older daughter, but she is probably Aspergers or on the cusp. As soon as she began to notice she was different and began to feel bad about it, we all discussed it together. It’s been an ongoing journey because everything I’ve learned has been through my own research as our HMO has been completely unwilling to help us out, but having my daughter as part of her own team from as early as she was able to understand it has been key. She’s about to turn 10 next week and jas come such a long way, but she knows that’s she’s different, she has a really good understanding HOW she’s different, and she understands what we and she need to do to cope as best we can with the differences, which I think makes it easier for her as she can now self-advocate.
She underwent a neuro evaluation when she was just about to turn 4, and we completely overhauled our diet as one part of the therapy, so at that point there was necessarily a lot of discussion about food and how it could help or hurt our bodies, and things went naturally from there. In other families, it’ll be other events or triggers or situations, of course, but that was our journey.
January 27, 2012 at 7:59 am
We’re a little further along with a different kind of disability, our almost 16 year old son has FASD (fetal alcohol spectrum disorder). He is quite impaired with this, has an autism diagnosis as well as multiple medical issues. We shared his diagnosis with him first when he was 7, much to his school’s dismay, as he ‘talked it up’ for a couple of weeks. They were worried he would ‘use it as an excuse’ but we knew that he needed an explanation for his intensely frustrating experiences. He was beginning to call himself stupid and it broke our hearts. We told him very naturally at dinner one evening as he was expressing his upset. FASD is a far more ‘explanable’ brain difference than ASD but still comes with it’s own complications. Very hard for him to understand how his birth mom’s addictions created these challenges for him now. At 16, he continues to experience lots of challenges, but our hope is that he understands he is not to blame. We are not punitive with him, as we also understand the behaviour resulting from the hurt brain is not his fault. He so much more deserves kindness, understanding and patience as we re direct his behavior and wait for his brain to catch up to the shift. We have 2 older daughters, both so good with him it brings tears to my eyes. They are very kind, loving and understanding of his needs. Both have chosen to go into helping professions, they have been told from very early on that we don’t blame children in a wheel chair for not walking, we don’t blame vision impaired children for not seeing and we don’t blame brain injured children for acting different. Don’t misunderstand me, we are supremely frustrated sometimes with behaviour, lying and stealing and sneaking around in the middle of the night. We’ve gone back to stores in our small town many times lately to return gum that has ‘fallen’ into our son’s pockets while in a store. We had yet another conference at school about his language and upset with a certain assistant in his classroom. The behavour carries on…but we know it will. His brain will not spontaneously heal itself (barring a miracle). We plan for the behaviour, the moods and the upsets. All the better to support him, as he deserves, and as any of us would appreciate in the same boat.
January 30, 2012 at 3:43 pm
I didn’t totally read everyone else’s comments, so sorry if I repeat what’s been said. We didn’t have one big conversation, but did start the “your brain thinks about things differently than me” piece from right after diagnosis (Asperger’s, age 6). The funny thing is…we didn’t use Asperger’s or autism in that conversation. So when my daughter came home in 4th grade (she’s 2 years younger) and said they were talking about disabilities in school and she didn’t think she knew anyone with one – I thought two things…good for us that we aren’t doing too much labelling, and not so good for us because we haven’t helped anyone deal with that label!!
We’ve been a bit more direct since then…only because it helps my son know some of the reasons he’s different (he gets teased and bullied a LOT…middle school really sucks) and it helps the whole family with some of the things that go along with having a family member with autism.
February 28, 2012 at 9:58 pm
[…] He pulls me aside, quiet and respectful. Again, he doesn’t want his brother to hear. […]
June 3, 2012 at 6:02 am
[…] taught me that your brother deserved to know that he was autistic because you knew he deserved to know why he was […]
February 9, 2014 at 7:00 pm
[…] I thought back to a conversation that Gerry and I had almost two years ago to the day: […]