Autism / Making your life easier / Raising a Toddler

What I Wish Everyone Knew About Having Autistic Kids

I have this pressing need to write when I feel angst or chaos. Or massive irritation at certain people who shall remain nameless. So here it goes:

I have two darling boys. Two darling little boys who each have Autism Spectrum Disorders. (I have talked on this blog at length about my older son and the methods we’ve used in the past, but I haven’t said much on here very much about my younger son. Fitz is three and was just recently diagnosed with mild Autism as well.) And I think I take it for granted that other people are informed about Autism. Or maybe I just assume that people are more understanding and less judgmental about kids these days because I’ve become more understanding and less judgmental about kids these days. So I’m always surprised when I find out they’re not.

It would be great if you tried to understand a little more - Here’s the thing about being a mother of a kid or two with disabilities/delays/differences: It’s hard. We deal with it every single hour of every single day. Even if I’m at work or at a night out with my friends I’m still thinking about my kids and what they need and how I can help them and what new therapy might make their lives easier. It never stops. And we’re FULLY aware of how are kids are behaving. So seriously – STOP STARING. I’ve been dealing with Autism for 6 years. If you can’t handle being around my kid for 6 minutes I have no interest in you. OK that was harsh. But it would be great if people tried to understand and maybe smile a little more and judge and stare a little less. Especially friends and family. Read this for starters.

It’s so hard for us not to compare - you have no idea how hard it is for us not to compare our kids to yours. Your kids who walk early and talk with such ease. While your kids are bringing you mud pies and flower necklaces, just remember there are 40% of other people’s kids who are ignoring the world in a corner somewhere lining up their cars. It’s painful and nerve wracking for us. I’m not saying you should be ashamed at how fabulous and normal your kids are. I think it’s wonderful that they are. I just want you to know it’s hard for us sometimes.

If I don’t respond the way you would, there’s probably a reason – I’m not perfect at this, but through lots of interactions with Behavior Interventionists, I really try to pinpoint the behaviors that I will reinforce and those that I should not. That’s the toughest part of being in public. People expect you to chastise your kids when they’re misbehaving. But with most kids – particular ASD ones, we’re not supposed to reinforce the negative behaviors. We’re supposed to ignore them and reinforce the positive behaviors. So don’t criticize me for choosing not to engage when my kids are screaming at me or throwing a tantrum on the floor. It’s not a behavior I want to reward.

We feel on edge in public most of the time - Theoretically there should be some places where it’s ok NOT to try and normalize or mitigate my kids’ behaviors, right? Or maybe not. I feel like I am apologizing or explaining all the time. We’re at church – I’m trying to explain one of my kids’ behaviors to onlookers or teachers or something. At the restaurant I’m apologizing for something. At friend’s houses I’m trying to mitigate issues so they don’t spiral into full-fledged tantrums. And in all of these places we are constantly on the lookout for triggers: (is it too loud, are the lights too bright, is there too much commotion) And you know what? It’s exhausting. So I feel like there should be places where I don’t have to explain anything. But so far, that only place is at my house when nobody but my kids and husband are around. I keep thinking that I should at least be able to relax around family! But there’s always someone staring or making comments.

So here’s what I have to say to you: Your kids may not have any of these issues now. But later on, they may struggle with something and I sure hope you find love and acceptance for them and for yourselves. And maybe they won’t – maybe they’ll be perfect. But for those of us who do have kids who struggle – cut us some slack.

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3 Hour Quick Glimpse into a Typical Day: It’s the day before New Year’s Eve and since school is still out, I decide to take my kids to the movies. First we get into the car. When I have to put on a DVD show or Fitz diabolically screams. There’s not reasoning with him because he doesn’t have reasoning skills. So I have just decided that I’ll never get to listen to music in the car again. It’s a small concession for peace in the car. And it keeps him in his seatbelt, which used to be nearly impossible. We drive to Costa Vida for a quick lunch. Fitz can’t stop touching everybody in line. He’s a sensory seeker and can’t help himself. Those big, beautiful eyes of his charm most of the people in line, except a construction worker who looks pretty uncomfortable that my strange little man is hugging him around the legs. I panic, and try to sit him down so I can stand in line again without incident. He breaks out of his seat and runs around the store a few times before jetting into the back of the restaurant. I finally get my food and sit him down again. Meanwhile, Holden finishes Fitz’s lunch and declares he’s still hungry. I tell him ‘sorry, bud, but you said 5 times you didn’t want anything and I still gave you half of Fitz’s lunch. Let’s just go eat popcorn at the theater.’ But he can’t let it go. I try to give him another option out of my purse but he starts losing it. I can see his rational mind slink away and his body takes over his mind and he starts a dreaded tantrum. I’m filled with anxiety – do I stick with my guns since he told me he didn’t want a quesadilla even to begin with or give in to avoid a very public meltdown. I know how bad this could get so I buy him another quesadilla ….skip forward 20 minutes….. we’re finally in the theater in our seats. Fitz is covering his hands with his ears because the movie is too loud for his overworked senses. He shifts in his seat looking for the exits again. But then decides the popcorn is worth staying for so we get to watch the movie after all… . After the movie, Holden’s friends (who are with us) can’t come over and play like he had expected. He proceeds to a full-fledged crying and yelling session while I’m chasing after Fitz who is running full speed through the theater because big areas make him ‘seek’ even more than usual. I think: if I can just get them in the car we’ll be fine….

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5 thoughts on “What I Wish Everyone Knew About Having Autistic Kids

  1. Oh honey, I hear you loud and clear. It’s hard. It’s exhausting. It’s depressing and demoralizing. And it seems to be all-consuming. I’ve found myself “announcing” my childrens’ issues everywhere we go as a way to super-cede the inevitable looks/comments. Only, afterwards I beat myself up with shame and guilt for feeling the need to “justify” my children to perfect strangers. I feel alone in the triumphs and tend to despair during the low times. It is a never-ending struggle.
    But then…
    Then I read someone else’s blog or post or status, talking about their struggles and pains and suddenly the comraderie kicks in. A fellow fighter; someone else who knows – really knows! And just like that, my burden is just a little bit lighter. My determination is a little bit stronger. My resolve to carry on is strengthened just in knowing I’m not alone.
    So thanks. Thanks for your understanding. Thanks for your tireless efforts. Thanks for speaking up when it is so uncomfortable to do so. Thank you.

  2. Hi Amber,

    Thank you for taking such initiative … I am so happy you have this blog and are helping people understand the complexities of Autism. I will be honest, reading this made me cry. It was just this last week when we were on vacation (in a nice hotel) that we asked our son to turn off his iPad at the restaurant table to eat. We were not expecting any reaction at the time but darn if he decided to belt out a skin crawling scream. The once loud and active restaurant (filled with well dressed families and such) came to a complete stop and silence (which then made our skin crawl). The family at the table next to us gave us such a horrified look that I instinctively said “I’m so sorry,” with I’m sure an equally horrified look on my face. Mind you, this was the same family who just the night before was so nice to us and laughed when our son was having such “audible fun” when squealing in glee at winning Yahtzee. However, this one scream, this one moment in their evening of perfectness (sorry to sound snippy) made them take action by immediately standing up to gather their items and leave the restaurant (perhaps they moved to another table – I have no idea). Jeez, over one small irritant in their life, these folks appeared to be so appalled that they wanted to send us a message. These are the moments when your world starts to spin but as parents, we can’t let others come between the support we must show our children (so yes, I have some guilt for telling those d-bags sorry – I gave them the power and possibly appeared to show shame for my son).

    With this all said, I absolutely love my little guy more than anything in the universe (something I’ve been telling him since he was 2). I can’t imagine him being anything different than who he is… no matter how difficult it can be at times. We see him having success in so many areas that sometimes we forget he’s still struggling with the simple stuff. Your post just meant a lot to me and sharing these moments will help ground us all.

    I also want to thank you for the day you dropped everything and came to my office to assist me with these complex issues (you and Paul were awesome). I can’t imagine how much longer it would have taken for us to understand completely of Autism and what resources were available. You’re an amazing person (and mom) and I’m glad you’ve chosen to be an advocate.

    My love to you and your awesome family,

    Donna

  3. Donna your words touched me so much. Thank you so much for saying this. I think it is through shared experiences in person or over the phone or via blogs that we can all grow and learn more about raising complex children. It teaches us to have each others’ backs when we’re out there in the real world. Thank you so much! Love you!

  4. Amen Jeanette! I do this too. And I want to stop – I want to stop having to justify my kids to anybody. I really appreciate your comment and am glad I’m not alone!

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