Autism Frustration

People always ask me about my frustrations with a child on the spectrum. I tell them it really depends on the age and stage of William at the time. Sometimes the frustrations we deal with are based on his attitude and how his day was and all those typical criteria…sometimes we’ll deal with him throwing things, other times we’ll deal with him not eating a certain food (although the week before he couldn’t stop eating it)…but I think all parents go through that–it’s called parenting.

But the frustration that I would say is constant and universal is the frustration of communication. Oh if he could communicate better with us how much easier would it be. I shutter to think. Good-night-nurse there have been so many times when we need information and need him to tell us what the matter is and he can’t…we’re frustrated because we just want to help and he’s frustrated because he’s trying to communicate and he just can’t.

It rips my heart into pieces when he’s standing there crying, screaming, yelling, kicking…whatever and it’s all caused by his inability to communicate his needs with us. I don’t like autism.

If he could only answer, “why” I can imagine that it would be so much easier to deal with him and the hated spectrum.

The other day William and I were alone at home and he was eating or doing something well and I told him how proud of him I was and asked if he wanted to “airplane”…well that’s a huge treat for him (I pick him up and spin him and float him like an airplane–he loves it, i love it…he’s not too heavy yet)

So he said “YES!” and off to airplane we went…he was laughing and then we chased and we just were having a great father/son moment. I put him down and he went off to do something else…then about 3 minutes later he comes back and kicks me…he tries to bite me…he’s trying to hit me!

“Why are you doing this?” I ask…over and over and over…he just starts crying and is just all upset. WTF is going on? Was he hurt? Was he sad? Angry that we stopped playing?

The special moment was ruined and I made him sit on the stairs (he does not like that) and he starts kicking the wall and on and on…WHY DID HE DO THIS?

I don’t know and he can’t answer “why”…if he could then maybe we could’ve talked about it. Maybe I would’ve understood how I did something to hurt him or make him sad.

This happens often in our daily routine…he will get his feelings hurt, he will bop his sister on the head or do things to really dampen the mood and moment…I don’t think he’s trying to be a grouch or a pill…I don’t think he wants to ruin the moment…it’s just he can’t get his point across or get his needs met because he can’t communicate like he wants or needs.

My dream…hope and prayer would be that one day William will have the ability to have a true conversation with me and I’ll ask him, “Remember when you used to do that…why did you do that and what could I have done to help you in those situations?” Because that’s one of the questions that haunts me…I’m afraid I’ll never know the answer and that makes me really sad.

Anyone else have this experience?

 

Seth/Melanie Fowler on Twitter
Seth/Melanie Fowler
Authored, Look at my Eyes, a parent's perspective re: navigating autism-early intervention, insurance, treatments, a paradigm of a family & child with autism
Seth/Melanie Fowler

Seth/Melanie Fowler

Authored, Look at my Eyes, a parent's perspective re: navigating autism-early intervention, insurance, treatments, a paradigm of a family & child with autism

0 thoughts on “Autism Frustration

  • October 8, 2011 at 10:13 pm
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    I can feel your stress and frustration, you poor thing. Wishing you all the best.

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    Department of Psychology and Neuroscience
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    Reply
  • September 12, 2011 at 7:05 pm
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             My son is 6yr old and is non-verbal, he is just now learning to answer “yes” or “No” questions. He also gets extremely frustrated when I cannot figure out what he wants or needs. One thing that helps greatly is pictures and me playing the guessing game…but if I guess too many wrong answers, that too will frustrate him, as it would anyone..lol  I see so many stories of non-verbal or partially verbal adults and l steered away from pictures, and other forms of communication and tried to focus on his voice as much as possible…fearing that if I gave him other options he would totally give up on trying to speak. However, after starting with sign language and then pecs and now spelling words with magnets. I realize how wonderful it is to give him the opportunity to communicate. Now I use pecs, sign and spelling…and everytime he communicates using these forms I “still” require that he try to sound out the request/want. We are now working on feelings and I have taken pictures of favorite activities we do and print them on paper and cut them out in 3×3 squares….This has really helped us all! Just sharing my story…

    Reply
  • September 12, 2011 at 5:33 pm
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    Have you tried scripting William?  I used to play airplane with my son too!  Everything I did, I did…i made..”fun.”  It is terribly frustrating NOT to be able to say, “stop asking me why..i have no idea what you mean, mom!” lol  He probably doesn’t even know how to BE a naughty boy.  Imagine if you had no way to say, stop talking, it’s annoying me or …don’t look at my face or anything at all.  

    I took my son and had fun..NEVER A PUNISHMENT …I would say….”say i love you mom” …and then he would say…”i love you mom”  echolalia scripting etc.  I had to come up with scripts for his entirel life.  I also said, “that’s not a choice”…or that’s a great choice when he did choose a good thing.  I used the same scripts over and over …when communicating until he REPEATED them to me.  ..good luck with William.  It IS frustrating for both of you 🙂  

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  • September 6, 2011 at 2:39 pm
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    I totally understand what you are going through.  My daughter is 26 and we still go through daily frustrating moments where she just can’t communicate what is going on in her head.  We often play a “game” called translation.  She’ll give me a couple words (whatever she can get out at the moment) and I’ll try to translate what she’s trying to relay.  If I’m wrong she knows to shake her head or tell me no and then I try again until I get it right. But you are right . . . there are some incidences that we may never know what was causing the meltdown.  Hang in there.  🙂

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  • September 4, 2011 at 11:45 am
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    Is it possible he could have a mood disorder in addition to his autism? My daughter does and we’ve had so many incidents like the one you described. It has taken meds and behavior therapy to make things better, and she’s in a program at school that focuses on communication. All of these things have helped but it’s been a long journey.

    I hope things get better for you soon. It’s so frustrating and I know sometimes it can make a parent feel so helpless.

    Reply

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