autism · Uncategorized

Autism and Accountability

I heard the screaming from the door. It was dark out, but we let the boys stay out to play in the piles of newly fallen snow. The scream was one that I knew well, one that I’ve heard for more hours than I can count, a scream that could well be the tagline to Casey’s autism.

I threw on the closest shoes I had to me- sandals- and ran down to see what had happened. Apparently  Casey had thrown a snowball at a three year old and hit him in the face. The three year old’s mother was rightfully angry and had done what we have always told our neighbors to do- treat him like any other kid- send him home.  Casey didn’t want to go home, and was freaking out.

He didn’t understand. Everyone was throwing snowballs. Even the three year old. He didn’t understand the difference between throwing a snowball at another 9 year old and throwing one at a three year old.

Feet freezing in the dim porch light of the crying toddler’s house, I wrapped my arms around super-tall-for-his-age son and tried to lift him from his tantrum position, half buried under the snow. He struggled against me for a minute, and then seeing that I wasn’t going to let him continue as he was, he got up and walked home with me, wailing the entire way.

When I got home I called my neighbor to apologize. I sort of wanted to tell her that because he is autistic, he didn’t understand the difference. That throwing the snowball at her little boy wasn’t really his fault.  Problem is, it was his fault. He did throw that snowball.  I don’t want my son to think that he lives in a world where he isn’t accountable because of his disability. His actions were unacceptable, and there are consequences.

It’s a tricky line to walk, and I’m never sure I’m doing it well. Casey’s autism causes a lot of confusion in a lot of areas. There are autistic behaviors that do not need to be mediated. He can stim all he wants. He needs that, and it doesn’t hurt anyone. I could care less if he “looks” normal.  But there are some that are a function of the autism that I’m not okay with allowing to go on.

Another example. The other night we were playing the game Headbandz, which my kids are just terrible at. They all kept accidentally shouting out the answers, and it got funnier each time it happened. When Casey did it, we laughed, and he got really really mad and said some pretty mean stuff.  He was mad because he thought we were laughing at him instead of with him. That was the autism. Does it mean that I allow for him to say mean things? No.

As much as I wish it were, the world isn’t autism friendly. People aren’t going to say “Oh, it’s okay that that guy just called me an asshole because he’s autistic.” It’s just not that way. And I’m doing my son a disservice if I don’t try to help him understand things like sarcasm, idioms and accountability for mistakes that happen- even if they come in the wake of his simply not understanding what really had been said or done. He knows, even at 9, that he’s different and people don’t understand him. That’s hard. But people aren’t going to even TRY to get him if he’s terrible to be around.

Casey in the snow

I refuse to let him use his autism as an excuse to be a brat. The same way I refuse to allow ANY of my kids to not be accountable for their actions or to act like jerks.   I am doing my best to teach my kids that what matters most is just to be nice. It doesn’t mean that you  let people get away with being jerks to you either, but you don’t match them tit for tat. Because MOST of the time, people don’t mean to be mean. Most of the time, whether you are typical or autistic, people are just simply misunderstood.  If Casey’s going to want for people to try to understand him and give him the benefit of the doubt, he needs to learn to do the same, to the best of his abilities.

The next morning, we got on our boots and winter gear and walked over for Casey to apologize. Casey had spent the night feeling badly that he had hurt a small child. Had we had written off the incident as a symptom of his autism, he would have never had the opportunity to learn why what he had done was wrong. Am I sure he gets it now? Probably no. But we’ll keep working on it.

 

42 thoughts on “Autism and Accountability

  1. Gosh, what a profound analogy. I want my kids to understand this important difference, too. I shield them from consequences when they break some rule that they don’t quite understand, (if the rule is important, that is– in this case understanding and restraining one’s power over the weak/meek), then I not only insult their intelligence, but I do them a terrible wrong.

    If I suspend my expectation of someone (a capable someone) to be accountable, does it matter if they are complicit or even ignorant to it? In my mind, have I not made them my inferior?

    Even worse, if it is my job to *teach* them accountability, and I shirk that responsibility, then I’ve socially handicapped them– if I’ve turned a blind eye to the child who throws the snowball today, I’ve also turned a blind eye to the adult who throws a brick at a pillow fight.

    1. Thank you Larry. When I read this, I almost wanted to just take down my post and keep this instead. You are so right on.

  2. I relate to this. Johnny is like a big toddler himself. The other night he had a melt down in a Macy’s (why did I take him there? long story). When I was reprimanding him he kept saying, “I can’t help it Mommy, I’m different.” Heart breaking. I told him it is okay that he’s different, we’re all different but he needs to know right from wrong and he can’t just act however he wants whenever. He said, OK. Like Casey, I don’t know if he understood, but if we keep saying it enough.

    1. This is tough on so many levels. There are times where Casey talks about being different. I don’t want to invalidate his emotions or his experience, so there are times where all I can do is listen.

      But there are behaviors that we as parents can’t turn a blind eye on- with our autistic kids or our NT kids

  3. If we are truly to parent without prejudice, that means that no matter what the label or diagnosis, we teach the fundamentals of right vs. wrong, and how to be kind and respectful. I couldn’t agree with this more.

  4. I agree wholeheartedly, Lexi! This what I try to focus on: the rules that matter. Yes, Danny’s autism makes it harder for him to understand social mores and even control his anger at times, but he can’t be allowed to hurt people, whether physically or mentally. I have to teach him why this is wrong and that there are consequences. Just as I have to teach these things to my other two kids.

    1. Thank you Patty. I think hurting people mentally is a big part of this. It’s not okay for Casey to freak out and say terrible things to people. It’s easier to justify not allowing him to lash out physically, but there’s something about silencing anyone that is hard. I want him to have a voice. I want him to stick up for himself when it’s necessary. I don’t want him to be an asshole. There’s a difference.

  5. I so totally agree with you. We have very few rules in my house but being nice, and being respectful to each other, and to yourself, is the HUGEST one. I don’t care if you’re autistic, you don’t get to talk to your brother like that. But the extra piece is making SURE he understands what’s going on. That’s my biggest responsibility, not only not giving him a free pass but also ensuring that he understands why. I’ve seen some really bad behavior in adults, my kids… BOTH of them…. will NOT turn out like that.

    1. Isn’t that our job as parents? I have been reamed up one side and down the other for trying to teach Casey basic manners and to be nice. That I’m not an “autism advocate” because I am not actively trying to change the world to conform to him, but because I’m trying to get him to “conform” to the world. And while I don’t believe I’m trying to make him conform in any areas that are destructive, I want him to BE a member of society. I want him to have friends and I want him to be happy. If that makes me not an autism advocate, fine. I’m my son’s mom. I’m HIS advocate. I’m trying to do what I feel is best FOR HIM. And it’s not without significant study into best practices for children with autism and a hard look at what some of the adults with autism have to say.

  6. I totally agree. I try to teach my son similar lessons. I think there is an added layer to the lesson because my son also has autism and doesn’t always process situations as a neurotypical person would, but he still needs to know right and wrong. Great post.

    1. It’s tough. Because there are SO MANY times Casey doesn’t get why what he did was wrong. But if I never have him be accountable, if I never expect more from him, what will happen then?

  7. i read this recently in an article… unfortunately i can’t remember where – a lovely young autistic man had posted it:

    “In some areas, giving a person with special needs the same standard as everybody else is the highest form of respect. ”

    this is how i try to parent all three of my girls – with the same standards… of course, there are accommodations – i am not trying to make her conform to the world… to be ‘normal’. however, if i don’t teach her the difference between right and wrong, i have truly done her a disservice as her parent.

    and, if that’s the case – i may as well let all my kids ‘throw snowballs’

    1. Thank you. I love that quote because it doesn’t just say “The same.” People with disabilities can’t just be treated the same as everyone else because accommodations need to be made in a lot of cases. They need extra help. But they do deserve to be treated with the same STANDARD. The same respect and care as anyone else.

      And our job as parents of any children is to teach them to treat people fairly. No matter if the other person is different, or if they are.

  8. Good or you! I think that will only help in the end. Stand firm where you need to, so he doesn’t think he can do whatever he wants, wherever he is. I had pretty good success with that method, and my young adult aspie son is quite socially acceptable when he is required to be so. Quirky, yes, but generally just fine. Back when he was about 5, I did not think it would be possible to shape his social behavior, but with consistency, even when you don’t think he gets it, it did pay off.

  9. Yep. He’s a kid first before the autism. Around here we allow the ‘We don’t handle K’s silverware” thing or the “we don’t take pictures of K thing”, but we don’t roll with the he’s autistic so he gets to act how he wants thing. In fact he didn’t even know he was autistic until about 13. That is he had never verbally expressed it to me. I sat him down and we talked about Aspergers, what it is, what it isn’t(an excuse for bad behavior)and how it might affect him socially etc. I think for him it was an Ahhh…moment.

  10. Your article applies to any kid, not just kids with autism. My daughter has Down syndrome and we face similar challenges. By keeping things simple and explaining things using her language, she is learning right from wrong and to make good choices. One of our biggest challenges is sarcasm. Her older brother (who has ADHD) is “full of it”. She usually does not understand it, which leads to hurt feelings and tears. He is very insensitive and she is overly sensitive. It’s great! (sarcasm)

    1. Dian,

      Do you know that I also have a daughter with Down syndrome, too? I’m not sure who is new here or not. It’s true with Abby as it is with Casey. I write about Casey in this particular instance because Abby is only two and we are just barely trying to embark on disciplining her, which is an entirely different battle.

      It’s tough to balance it all out. My youngest son is HILARIOUS and has an awesome grasp on humor and sarcasm. It’s his gift. And he uses it as Casey’s curse. I don’t know how to mitigate that.

      hurg. I get your “It’s GREAT!” sarcasm. SO hard.

      1. I found your blog through Greta B. She’s my daughter’s advisor. I read some of your previous posts and totally relate! We have to laugh at things or else we would cry, wouldn’t we?

  11. I have had similar experiences with my little guy. I feel I am always trying to find the right balance. I go back to “treat people how you want to be treated” which is hard for him to understand. I’m glad you wrote this.

  12. LOVE it, and so true! Sometimes it’s hard to keep that line between autism, and bad behavior, but I agree with you. Though he didn’t understand what he did was wrong, he needed too….goood job momma!

  13. I have no experience with autism, but I have similar feelings in regards to Hailey and her Ds. I don’t want people letting Hailey get away with things that aren’t appropriate because she has Ds.

  14. wow…I want to shout it out to everyone, READ THIS! It is important, and this piece put it into such great perspective, that we champion the uniqueness, the wonderfulness (not a word, I know 😉 of our child who just happens to be autistic, as truly awesome. But there is indeed, a responsibility as a parent to teach ea of our kids about natural consequences, that kind is a four letter word we embrace, and that rules of society will matter. When one’s kiddo gets to be an adult, and folks say, geesh, he is so kind and mannerly, etc…well, that helps me quit thinking about all the things I didn’t know….and maybe didn’t do…and makes me smile to see my Ben, navigate the waters of this pretty judgmental world…NT or Autistic or Disabled, but surely the latter two, more.. I can’t put it down here, what I really want to say. So I’ll just say thank you. This was great! You are great! 😀

  15. I couldn’t agree with you more!! I have an 11 year old high functioning autistic son and a 9 year old high functioning daughter and I handle my kids the same way – allow them their differences NEVER allow them to be rude or insulting or disrespectful and use their autism as an excuse. Temple Grandin said her mother did her a huge service teaching her to function in the real world. She was expected to sit at the dinner table and behave properly – and the focus was on what she COULD do rather than what she could NOT do. That is the greatest gift I feel I can give my kids – teaching them to be kind, and take responsibility for their actions so they can be successful and as independant as possible. thanks for reminding me that I am not alone in my perspective 🙂 keep up the HARD but extremely worthwhile job!!!

  16. I totally agree with everything you said. Can’t let them get away with everything because of the autism. Now how did the boy’s parents react? And I hope they know, that this was an accident. He was playing and didn’t MEAN to hurt the 3 year old. Were the other 9 year olds throwing snowballs at the 3 year old? I’m sure they were because I’m sure the 3 year old was throwing snowballs. AND, I’m on a roll here, maybe the parents of the 3 year old should think next time about letting such a young child play with 9 year olds. It kinda goes both ways. Can you tell I’m kinda on Casey’s side here. I can’t help it. lol

  17. Yes, yes, yes!

    Andrew is severely impacted developmentally and doesn’t function at his age level at all (he’s 10 and is between the 18 – 48 month range in a lot of areas). But we respect him enough to know he is worth disciplining, and even though he doesn’t understand a lot of things, we hope and pray that with our tireless efforts and time he will. Our kids deserve to be taught right from wrong, in whatever way we can teach them. The world deserves to see that parents of special needs children believe their kids CAN and SHOULD be taught kindness, compassion, accountability. How can we expect society to respect our children if we rely on excuses rather than hard work and sacrifice to teach them all we can?

    You’re an amazing mom, and your children are blessed to have parents that see them as whole, capable human beings, rather than just a diagnosis.

    Also, you said tit.

  18. I think even some NT kids wouldn’t realize that what they did – throwing a snowball at face level at a 3-year-old, is different than a child of the same size. Not out of malice, in my own experience, I’ve seen that some children don’t have a great grasp of the difference between a very little child & themselves – they don’t always get that other smaller children aren’t capable of the same things or don’t understand things at the same level.
    I feel for that 3-year-old – and I feel for how bad your son felt the next day, even if he didn’t totally get the entire picture.

  19. ok how about this one. How do I hold my daughter accountable and teach her from this incident. My daughter attends KKI kennedy kreiger in balitimore. My daughter is metally disabled she has a genetic disorder. She is eleven but mentally around 3 or 4 but presents as a child that should “know better”. Her bus ride is two hours and on this day the Ravens were having their parade. I was worried about the time and the size the parade had become and worried about the traffic but had two other children with their grandfather at the parade (and was worried for them because they rode the lightrail). I knew I should have went and brought her home myself because of the traffic but it’s too late now it happened.
    The bus ride wound up being three hours. Well she has a language disorder and when she is finally able to get what she wants out if you interrupt her she becomes upset. The bus driver was trying to keep them occupied, two left on the bus (substitute bus driver, my daughter had a brand new aide) (no one was informed of this, either) so she is trying to tell the bus driver how to get to the stops because she is that way. The other student on the bus was trying to tell too and my daughter became upset. They asked her to get her backpack out of the isle and she threw it (didn’t hit anyone) but she should not have thrown the backpack. From everything I now know. Her aide fell asleep and was asleep while amber was getting upset. Amber bites her nails down to the quick when she isn’t watched on the bus rides.That had been happening too. Anyway, the other aide came up because Amber was trying to get out of her seat belt and the aide was trying to calm Amber and wake my daughters aide. Well she wound up waking the aide and it turned more physical Amber pulled the aides hair and the aide held Amber down by choking her and then proceeded to pull Ambers hair in which Amber was going to pull hers again and the aide told her if she pulled her hair she would pull Ambers.

    So my question is…. Amber was wrong for throwing the backpack and pulling her aides hair. BUT how do I teach Amber who didn’t even tell me this happened to her that you cant hurt an adult or another person but as her mother I think if the bus aide from the back wouldn’t have told I would have never known how amber had gotten the bruises on her neck.
    Like what do I say…. what if someone molests her and she thinks its wrong to hurt an adult and doesn’t tell me.
    Now she did act out at home, so we thought something was wrong. Like the nails being bitten down and she pulls out her toenails (literally) when she is upset.
    I have talked to the county and there is nothing to be done. The aide was fired but as usual it comes back to Amber, is a difficult child so she will be the one taken from her school and put in some other school that is closer and doesn’t meet her needs. So in other words she suffers for ten years because she will go to school until she is 21 at a school that doesn’t meet her needs because I have to work and be able to afford her bills and food and I’m not able to drive her.
    sigh…… feeling defeated today. I am looking for any comments,advice, whatever even if I should teach amber what she did was wrong. I have told her that she should not have thrown the backpack but I don’t know what else to say… how do I teach her in this situation.

    1. Lynn,

      This is only my opinion. First off, I think people with special needs, no matter what their age, are accountable up to the level that they can understand. It doesn’t matter if your daughter is 11 if she’s mentally on a 3 or 4 year old level. That being said, I would approach her at the level she could understand.

      And in this situation, I don’t think she was at fault. Sure, she shouldn’t have thrown her backpack, but why did she do that? Because she couldn’t communicate and the person that was there to support her and facilitate that kind of communication had fallen asleep! I feel like she resorted to throwing her backpack because she had run out of options.

      The adults in this situation failed miserably. I feel like you should be proud of your daughter for resisting when someone was being physical with her. It does not mean that we allow our children to be physical back, but at some point, our children DO need to know that adults do not have the right to abuse them. Unless your daughter was a danger to herself or others, I’m not sure why the use of physical ANYTHING was important in this situation. Is she able to get the seat belt undone herself? If she got mad, would she have been able to move freely?

      From there, the hairpulling?! Are you kidding me?! I’m glad her aide was fired, but for reals? I am not a litigious person at all, and I would consider getting a lawyer if they didn’t freaking treat you like ROYALTY at that school. That is abuse. The aide was the ADULT in that situation and she was pulling the hair of a child with special needs? I don’t give a shit what your daughter was doing, that is never, ever okay.

      My advice? Give your daughter a great big hug. Teach her that people are not allowed to ever lay their hands on her in anger, or in any way that makes her feel uncomfortable. She is in control of HER body. If you need help insuring your daughters safety at school on the bus through IEP modifications or whatever, please let me know. I know people that can help. Do not be quiet about this. Your daughter was not at fault here. Not even a little.

  20. I always worry that my 13 yo daughter thinks she’s being picked on when we try to share additional ideas of how situations can be handled better in the future. I’m going to share this post with her because I think you have explained our responsibility as parents in a way that she’ll understand and hopefully be able to see how it fits into our relationship. Thanks!

  21. Nicely said. I read a quote somewhere that I stole and use on a daily basis: “No are responsible for your actions, no matter how you feel.” It’s taken a long to time sink in to our 14 yo. Your analogy is similar. Loved this article. Thanks!

  22. Holding our son accountable has not been something that we were very worried with over the last year. We were all, “He’s autistic; he can’t help it.” Now we are starting to see that while it may be painful and it may be difficult, it benefits no one for us to let him get away with craptastic behavior.

  23. I’m so glad I happened upon this. I’ve been agonizing over a few things concerning my son and reading this really helped me decide where I stand. My son is 3 and a half, non-verbal and is on the Autism Spectrum. He does a lot of things that seem like bad behavior, but I know it’s because he doesn’t fully understand. An example woule be him stealing other kids snacks. I know in his mind he’s thinking that he’s hungry and he wants snacks, he isn’t purposely stealing another childs food to be a bully or rude. But the thing I’ve been agonizing over is how other parents downplay what he’s done so extremely “It’s okay, really, don’t worry about it, he can steal their food, don’t worry” etc. I know they’re just trying to make me feel better and that they understand that he has special needs but it’s taking away from him being responsible for his actions and I hate letting him get away with little things like that. I find myself just saying sorry over and over and not disciplining him properly.

    I’m not going to do that anymore. Maybe he won’t get it when I stop him and tell him he can’t do it, but maybe he does! All I can do is keep raising him like I would any other typical child.

    thanks so much for this.

  24. This is wonderful! I’ve tried to instill right vs. wrong with my son and you know, I think sometimes the autism helps. I think his black and white world naturally shows him wrong from right…not saying he doesn’t sin and mess up and hurt someone. He’s a big ol’ boy (66 lbs in 1st grade) so I know when he squeezes or grabs their throat….yeah….it hurts. Oh boy.

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