“Mom, do I have autism?” my eldest peered at me through the eyes so dark and deep I could easily be swallowed by them.

My heart stopped a moment, my dancing cactus videos forgotten entirely, unsure of how to proceed. It was a good question. Something we had never spoken of because, well, it never mattered.

The answer was yes, yes he did have Asperger Syndrome. He’d had it since I’d pushed him out of my delicate girl parts, trying desperately to bring him to my breast on the birthing table, only to have him shriek in horror and disgust, something he did with alarming frequency for the next several years.

Clothes made him crazy, their textures too binding, the tags an endless source of frustration. Being held, something most babies (I’d heard) loved, well, he’d prefer to lay on his back, watching his mobile spin for hours upon end, the deep greens and blues soothing him in a way I never could. It broke my heart until it didn’t anymore because eventually, I stopped trying to scoop him on up, cuddle him close. I loved him from afar, my tears dotting his crib sheet as I stood above him, wishing I knew what went on in that glorious brain of his.

By age one, his love of the planets was obsessive. While he couldn’t tell me the name of the animals that lived in the house (dog, cat, for those interested), he could tell me all of the names of the moons of Jupiter – his favorite planet – and identify them from even the grainiest pictures.

Speech severely delayed, by age two, he was enrolled in both speech and occupational therapy, dutifully trucking back and forth to the Early Intervention center, day after ever-loving day. Eventually, he’d been able to touch varying textures of dry rice and beans, eat few things beyond his standard diet of oatmeal, graham crackers and cheese, and adapt his fine motor skills so that he could pinch small things, hold a crayon.

Speech therapy continued until his fourth year. He’d gone from mostly non-verbal – excepting, of course, anything related to the cosmos – to using a handful of words; more each day.

Our relationship had developed, too. While I’d still feel that scar tissue tightening up whenever he chose anyone but me to love on, I accepted that his love was different; unique. Just like his beautiful brain. It was simply different. Not wrong, not right, not better or worse, just different.

I accepted different.

Through all of this, we didn’t bother with labels. Not in my house. Ben’s Asperger Syndrome was no different than saying he’d inherited both my brown hair and long eyelashes. It was just a part of who he was. And that didn’t deserve a label or hushed meetings around the table.

I knew the slippery-slope of labeling and I wanted him to grow up as himself, not as what a syndrome may or may not dictate about him.

So when, at age ten, he asked me if he had autism, I didn’t know quite what to say.

So, with widened eyes, I spoke the truth:

“You have something called Asperger Syndrome. You have since you were a baby. You went through speech therapy to help you talk and other therapies to help you eat. Remember how your sister had speech therapy? You did too.”

His eyes opened so largely I feared they would fall from their sockets.

“But I’m okay?” he asked.

“You, like your grandfather, your uncle (my brother) and your own brother, well, you’re just quirky. You have things about you that are different than everyone else. But really, EVERYONE is different. Different is awesome. So don’t think about yourself as a “syndrome,” think of yourself as Ben. Because THAT is who you are.”

He smiled, the crooked teeth he’d gotten from his paternal grandmother peeking through, making him look like a bobble-headed jack-o-lantern.

“Yeah. You’re right. I’m just Ben.”

“I wouldn’t have you any other way.”

He then scampered off to celebrate his Ben-ness with his siblings.

58 thoughts on “Heart. Stop.

  1. I LOVE YOU. This is the BEST answer a mom can give in this case. I wish someone had said the same to me when I couldn’t figure out why the other kids weren’t like me.

  2. Heart. Stop. No doubt. Mine stopped right with yours. But I love you. And I love Ben. You both rock. Well done, Becky.

  3. What a perfect answer! My mother always told us that she loved us the same, but for differnt things. Because we were all different and special. I’m so happy to see other moms like my own.

  4. I hope that I celebrate my own children for who they are the way you celebrate who Ben is. By the way, Ben got his Awesome from you.

  5. I wish I’d had another four years to answer that question!
    But no, my gorgeous, quirky boy figured it out in his way-to-brilliant for normal people brain that he is different.
    Not Asperger.
    Not Autistic.
    A combination of both.
    He’s 6.
    I basically told him what you told Ben ….
    He is who he is, and he is loved.
    My son was only diagnosed at almost 4.
    It’s taken a bit to adjust, and some days it can feel very lonely.

    Thank you for such a wonderful post.
    You ARE an amazing Mom and person! =)

  6. What a wonderful story of love, understanding and motherhood. I’m not a mom, but I’m an aunt and I love “my kids.” Children are wonderful beings that need the guidance and honesty of parents.

  7. That was very touching Aunt Becky! That was really a great thing to say to him to make him feel great about himself.

    Maybe the world would be a better place if everyone stopped trying to label themselves. I’m different, I’m not overweight or any other thing that would make me feel bad about myself. I’m just Amber. I love it!

  8. Holy crap, that is such an awesome response. And that, Aunt Becky, is why you so totally rock. Thank you. I may have to jot that answer down and keep it in a safe place for the next 6 years! **lol**

  9. I can’t imagine how shocked you must have been when he asked the question. It surely must’ve been an awkward moment, but you handled it perfectly! Keep up the awesome job & thanks for sharing!

  10. The first time my son asked me about it, he was 7. He wanted to know if it was a restaurant we could eat at. Now I think he understands it a bit better. To us, to himself he’s Sam, and we love him just as he is.

  11. totally awesome answer Aunt Becky. Everyone’s different in my house I encourage the differences because heck if we were all the same that would be so boring. I hope my own children embrace their differences their whole life long.

  12. Gosh what a beautiful story. He is LUCKY to have you as a mother and just an overall presence in his life. I’m not sure if you’ve ever watched it but the movie Parenthood has an autistic around 10-year old (not sure his exact age) who also has Asperger’s. I’m so glad there’s so much more attention on this these days. Because there’s nothing WRONG with these kids. They’re just special and unique and sometimes they blow you away with the beauty of their minds.

  13. I finally got a chance to come over and read this and OMFG…TEARS. I already told you that you handled it right and this just reinforces it. You are a GREAT mama and Ben is lucky to have you.

  14. I love it. You are an awesome mom, and if you disagree with me I’m afraid I’ll just have to yell “SHUT YOUR WHORE MOUTH!” loud enough to hear me from Wisco.

    My son Evan is sixteen and has Asperger’s. , He’s come a looooong way from where he was, even a few years ago. If he’s having a moment he’ll joke “Sorry, Asperger’s is flaring up. I’ll be good in a minute”. And he is.

  15. My daughter loves planets too. We went to the Smithsonian Air and Space museum and saw the best iMax movie, Journey to the Stars. We’ve also rented some of the others, like the Hubble one. Not as awesome as on the big screen though. Maybe you can find it showing somewhere in your city. I bet he’d love it.

  16. I had the same experience when Kevin asked me if he was special needs. I didn’t answer as well as you, and said no. His big eyes looked at me thoughtfully and he said something like, “Yes. Yes I am. Because I have dyspraxia, which means I have needs that most people don’t. And they are special.”

    I think I cried.

  17. Thank-you so very much!!! My 3y/o son has very low scale Autism (may end up being Asberger, but for now, we’re saying it’s Autism). I was the first to see the signs before he was a year and a half and we got early intervention/ treatment. After being together for over 5 years his mom gave me the boot without warning. One thing I asked, BEGGED her not to do was label Westley. For his own sake. I’ve seen many kids grow up knowing they had a label as young children and it usually doesn’t turn out well. I was told I was in denial. What?!?! I’m the one who saw it and got us to seek help together! I know who my son is and will do everything in my power for him, but he never needs to know he’s being treated different than anyone. YOU did it perfect. Love, support, do everything you child needs without him or her knowing, and when the time comes, he/she will let you know that they know SOMETHING is different and will want to find out in their own time. TYVM!

  18. My mom’s best friend’s son has an Asperger diagnosis. He’s 20 and in the Navy. He still doesn’t know he has it. Neither does the Navy or he wouldn’t be there. It wasn’t in any of his school records because his parents wanted him treated as an individual and not as a syndrome. They dealt with issues both with the school and with him as they came up, but since he never asked point blank, as your son did, they never told him. He outgrew most of the self-stimulating and stereotypical sorts of behaviors, though he retains some peculiar fascinations with various topics. He can function in the military. It helps that he’s a techie, and most of the techies in the military (and possibly even in the real world) are not without their quirks, so he apparently doesn’t particularly stand out.



  19. As someone who works with kids on the autism spectrum, I’ve had a few of the older kids start conversations like this and have been at a loss as to how to handle it (at least partially because I don’t want to step on their parents’ toes by having that conversation instead of them). Your response was eloquent and right on the mark, and I hope I can make similar statements next time it comes up. Thanks for the inspiration!

  20. My son Adam is an Aspie. Thank you so much for sharing this beautiful and brilliantly written event from your life. Your son like mine…are gifts. Thank you.

    Kendra 🙂

  21. Wow, you sure know how to reach inside my chest and squeeze my heart! Wow! Hug Ben for me please. You will be sent many blessings since you have so much love for your family. Cheers!

    By the way, please do submit your blog to http://www.BlogCatalog.com (free) and follow me on Twitter, too. Theresa_BC and I shall do the same. I like your voice.

  22. Aunt Becky, at the risk of annoying the snot out of you, I have to tell you that Ben can’t have Asperger Syndrome if he had a severe speech delay. One of the diagnostic criteria of AS is NO speech delay. He may have high-functioning autism (sounds like it), but it isn’t AS.

    I realize that’s splitting hairs, but there’s enough misinformation about autism out in cyberland that I try to correct things where I can.

    If you think I’m FOS, check up the DSM IV criteria for Asperger’s. I know about it because I have 5 kids on the spectrum: 2 with Asperger’s, 1 with PDD-NOS and 2 with autism (1 moderate, 1 severe). I’ve learned the differences in each diagnosis.

    Love ya and hope you don’t want to beat me up for saying this.


  23. Daughter has rare medical condition. She’s now 6 and starting to ask questions, such as: “Why do I take medicine?” and “When did I start wearing this bracelet.” I struggle with the right answer. For now I say: “The angles made you with sugar and spice and everything thing nice.” Within time, I believe, I’ll be able to perfect the answer.

  24. You could have written this about my Ben, who is also ten and has Aspergers. Right down to the planets. He asked me this question last year. My answer was pretty much the same as your’s.
    They are amazing, beautiful and heart breaking, aren’t they?

  25. There are 7 billion human brains and all are different. Autistic is a label we use to loosely describe a category of behaviors and abilities. It doesn’t describe the whole brain or the range of its abilities. This is what I remind myself.

  26. It’s interesting how it’s just a label. He’s not any different with or without that label, is he? It helps other people understand, but it’s pretty useless to him.

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