Why does the word "no or stop" send kids with an ASD into a rage and meltdown?

Paulette - posted on 10/26/2009 ( 17 moms have responded )

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I know all kids don't lke being told they can't do something but most of the time they seem to handle it. However my two sons on the Spectrum become so enraged they become verbally and physically abusive. Can anyone explain why the process is different for our kids? I feel like I need to understand better where they are coming from!

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Angie - posted on 11/02/2009

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Not just kids on the spectrum have a hard time with No. Our kids just have a hard time because they are more routine oriented. My boys, C.J. & Angel, react very differently from one another on a variety of situations. You just have to find what works for your children. We do at times have to treat our children different from our other children, but my best outcomes have come from treating my boys just as i do my daughter & son who are not in the spectrum. It then becomes routine and they adjust to being told No. It takes alot of time and patience, but it has worked well for our family.

Melissa - posted on 11/02/2009

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I wish i knew sister!!! My 8 year old is the same way. In his case, I think some of it is based on the frustration of not being able to communicate (non-verbal). Most of my son's aggression is when he isnot getting his way. I would love it if he would just whine like his little sister. When he was smaller it wasn't as noticeable. Now that he's 4 ft 7 inches and 85 lbs, I notice it a lot more.

Sue - posted on 11/01/2009

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Wow, you know its quite a relief to know that others are going thru what I did the past 6yrs with my grandson(I have custody of). I was so frustrated because I knew his behaviour was way off the "normal" mark, yet didnt know what exactly it was. After much begging over the yrs, I finally got our GP to send him to specialist. They diagnosed him two yrs ago with Aspergers. What a relief to have a name to the kaos that has been my life. He was then sent to a phycologist for counceling to help him deal with his feelings of frustration which lead to his meltdowns.

The meltdowns were the worse, repeating him self over and over, having it excalate and knowing what was coming...I just wanted to cry, well to be honest most times I did cry. Leaving a full grocery cart and carrying out a kicking,screaming child to the car, trying to get him buckled in his car seat when he suddenly had super human strength! OMG... then listening to him scream the same thing over and over and over,,at the top of his lungs in a car for the 30 min drive home... I am surprised I survived. Trying to get him off the subject by pointing out something like a road sign and then just talking to myself about it, describing what it looks like, what it does.. got his distracted enough sometimes to stop a meltdown.. sometimes it didnt. Repeating back what he was saying so he knew I actually heard what he was saying sometimes worked also. I never found any one specific thing that helped 100% of the time.

He is now 8, the meltdowns are about once a month instead of every 20 minutes...he is still stuck on certain things like now its starwars anything but mostly lego, before that it was dinosaurs for a yr, pokemon for a yr, weebles for a yr.. its all he will talk about and knows everything there is about them,, Being consistant every single time...Routine is a must, must, must, change is not something that he handles well. Even summer vacations from school, everything hours there is something on our chart to do, I even have to write in when we will go for groceries, go to the mall for something, when he must have a bowel movement (he still soils his pants) and I will sometimes find feces wipped around his bedroom..ugh..sigh...

The good news is he loves school, is above average for his age, reads like there is no tomorrow and talks like he is 20 not 8. The specialist tells me it will get better the older he gets and i have found this to be true. He still doesnt socialize well, but will make more of an effort to make friends than he use to.

There is hope, there is a light at the end of the tunnel. Be vigelant to do research on what others have found helpful and what the specialist tells you to do. The counseling helped us alot, and even though he still thinks he knows more than I do...lol.... we are going thru life together on a much calmer note these days. Good luck to you and your family.

Tanya - posted on 11/01/2009

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WOW. I am new to this community and its amazing to realise that my son is doing the "normal" asd things. We have found our 4yr old responds best to "next".

Debi - posted on 10/30/2009

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Great ideas and explanations from everyone. My 4 year old son also doesn't like 'No' for an answer. My approach is a combination of the above...."It's Not Okay to....but you can...." I set the alarm on my cell phone to ring when we have 5 more minutes to go to the bathroom and put our shoes on to leave for school in the morning. My son's 'job' is to get the phone and bring it to me wherever I am to shut it off. It's a fun thing for him and consistent each morning. Recently, he has been getting 'stuck' on a few things that he really adamant about doing. I'm finding it a little more difficult finding things lately to transition him to in order to get him 'off the subject' when it's a 'No' answer. For example, we had a Halloween scavenger hunt tonight. I made sure to put 'THE END' on the last note so he knew the game was over. In the moment it worked, but throughout the rest of the night he would periodically say, "I want to go on a scavenger hunt!" Even reminding him that we did this already didn't satisfy him. Although we're constantly trying to prevent their breakdowns, they're bound to happen anyways. I'm finding that staying calm and patient and talking in a soft voice has helped. I try to talk to him about how he feels and try to give him the appropriate words to express himself so the next time it's not so bad.



I definitely have to get one of those countdown clocks. The speech therapist uses one and a friend of mine who is a special education teacher uses one too.....highly recommended!



Finally, regarding siblings.....yes, we have to teach them how to handle and cope with their sibling and the time it takes for us to deal with them. My daughter is 7 and is very understanding and compassionate. I definitely reward her for her exceptional behavior during those difficult moments. My daughter craves one-on-one time with me. So, I usually reward her with extra book reading time with me after her brother goes to bed. Or, we periodically go to the salon for mother/daughter pedicures. During these times, I remind her how much I appreciate her patience and understanding while I'm dealing with my son's tantrums and what a great daughter/big sister she is.

Carrie - posted on 10/29/2009

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i worry sometimes about my 3 yo daughter, who has to see me deal w/my 5 year old's meltdowns when he hears no or stop. sometimes she cries, and sometimes she goes over to him and says "it's ok, aidan".



i will definitely take some of these suggestions to try w/him! thanks!!

Karen - posted on 10/29/2009

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I am not an expert here with siblings ... my approach didn't help, in other words. However, I strongly suggest you find time to reward Ashley. My daughter still complains and makes me feel like I didn't have the time of day for her. yet, I did a lot around her. Humm... just didn't win this one. Good luck. Join support groups for sibblings of disabilities. I hear they are helpful. I didn't get/make a chance to try it.

[deleted account]

Aspies get so fixated, that the act of transition is VERY difficult. Whether it is starting or stopping something they want, they can get stuck. My son is definitely a "rager". We have major meltdowns. His younger sister has unfortunately had to learn that when a rage starts, she leaves. I just look at her and point and say"Go". She understands the best an 8 year old can. Then I can turn my attention to Matthew and not have to worry about Ashley getting hurt.

Karen - posted on 10/29/2009

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thanks for the compliments. appreciate it. I have tried so many methods. Learned so much. I forget in the rush of things ... we rush to make our lives better ... Did it make it better? Why do we rush? Has anyone found a way to smack ourselves when we get to that point? without PAIN!!!! LOL...

Pamela - posted on 10/29/2009

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i agree with all replies to this question,my 5 yr old autistic son was the same,i only realised after months of the stop signal sending him into a rage that it was because he NEEDED to know what was happening nxt! not just why he was told to stop,we use the phrases this first then that next,i.e.dinner first then the park! or if he is doing something that may cause him injury like last christmas he wanted to bite the lights on the tree!! we just had to say no and stop and promptly distract him with an activity that we knew would get his attention in this instance play dough!! this seemed to work and became part of his routine he would approach the tree stop and say no then ask for playdough! so sweet but it had the right affect he was safe,there was no possibilty of him understanding the danger he could have been in!!

Marie - posted on 10/28/2009

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I have a 4 year old autistic child and i have the same problem. It seems he gets more frustrated and rebel everytime I use the word "no". So I tried the "thats not ok" and explain things in a simplier way that he could understand. I really understand how hard it is for us mom to maintain our composure and think for different solutions that would be more effective for our kids. Just keep in mind that there will be things that can trigger aggresive behavior so try to figure out preventive ways. An example would be a chart of routine schedule or pictures of good or naughty behaviors. I hope this small suggestion will help you paulette.

Lisa - posted on 10/28/2009

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thank you so much for all of the reponses, although I did not ask the question I live it everyday. My son loves to use movie dialouge as answers to questions people ask him. Now whenever I tell him no he proceeds to quote a Jimmy Neutron DVD - "what do you mean no'.... and the meltdown begins. I was surprised because he hasn't had tantrum meltdowns in a year. So I will definitely take every suggestion given here and put it to use with my son.



On another note, I am so glad a friend of mine suggested circle of moms because I came across you guys. I am so grateful and it's always nice to know I'm not alone. :-)

Janie - posted on 10/27/2009

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Well I feel since having my son in an IEP program, I have learned instead of telling him NO, I now use the work Not Available,he doesn't have the melt downs anymore. Its like telling my other son "no you can't have ice cream" (to him that means i can't have ice cream now but it may be available later, so he can handle that!) telling my son with autism No to him means oh no i will never get it, but if you say not available he knows that later on he may request it again and he may get it at that time!!!! It really works!!!:):)

Judi - posted on 10/27/2009

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KItchen times work well too, Because we used Hanan to get Ricky to talk now No isn't a get word, but I use the timer, in the kitchen, in playroom everywhere. We also play the STOP game with teh sign and PECS image so that the croc puppet will do something Ricky doesn't like and keep doing it until Ricky verbalises STOP. Then he sees the other side.

Lisa - posted on 10/27/2009

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I agree with Karen. Our kids get stuck. I have started telling my son that no is an answer, even if it's not the one he wants. It's been a while since we've had a full blown meltdown over it, but he still hates to hear it and lets everyone know that wasn't the answer he wanted.

Sheila - posted on 10/27/2009

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I think Karen made excellent points.



For so long, our son was told use your words...(still is) So now that he is quite verbal, if he asks for something and the answer is no, his response has been BUT I USED MY WORDS (he will then list how he said please, or may I...all these beautiful powerful words that he can now use). So, the next tool that he needs is to understand that no is not the end of his world, that he needs to transition to the next goal...so, if he asks for something, we try to define his choices for him. Example: may I have some soda please..Answer: No, but you may have some water, juice, or milk. He inevitably comes back with the reasons why he NEEDS his soda (or whatever it might be)....broken record time, repeat back the choices that are acceptable. We still get the meltdowns, but not over soda!



It is a never ending battle to understand these kids.



Oh, and if you don't have a visual timer (a clock that counts backwards) IT IS THE BEST!



For the longest time, to get him to go or leave was huge. This little clock's red face counts down up to an hour. So, if I told him he had 20 minutes on the computer, I would set the clock. If he objected to getting off the computer (which he always did) I would say, what does the clock say? He would grumble and bang about, but I ALWAYS redirected to the clock. Again, he now leaves the computer with only verbal prompts...(I should say, he would attempt to throw the clock in the beginning....it is not sunshine and roses)



Good luck!



Sheila

Karen - posted on 10/26/2009

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Quoting Paulette:

Why does the word "no or stop" send kids with an ASD into a rage and meltdown?

I know all kids don't lke being told they can't do something but most of the time they seem to handle it. However my two sons on the Spectrum become so enraged they become verbally and physically abusive. Can anyone explain why the process is different for our kids? I feel like I need to understand better where they are coming from!



A child has a strong desire to "want" something. We encourage them since birth to explore and teach them how to "ask" for it. I believe two things happen with the word "no". 1. They get stuck. 2. When they can't have something that they "want" and "asked" for ... they can't transition into another "goal". They say "now what do I do?"



Out of frustration - they (autistic person) allow their strongest feeling to emerge and take over. Why not get aggressive? That behavior causes support and forces someone to help them with their feelings.



It's sad that we see our society force creativity and individualism under the carpet/mat. So they can't conform ... and the problem is what????? You look bad as a parent? Your child looks bad?




Remember - these kids need consistency and planning. Something interactive to see and touch. They don't have control of their body or mind like we do. It takes time and patience to be teaching them how we want them to behave. Similar to teaching a dog tricks (understanding that they are human) - the analogy is only to show how 'training a dog' requires quick/immediate rewards, short goals, lots of repetition and predictibility. Each person (disabled) is different and each person (parent/teacher) needs to learn how to train (remember they (child) should be treated with respect) and to follow instructions. Following one sentence at a time. It is intense, challenging and not for the faint of heart. Not painful just calmly repetitive. Never raise your voice. Give rewards for every move. Be ready for anything physical. You could never talk enough. Each motion you make needs verbal and visual reinforcements and explanations. So much to learn and not enough space. >>> Grinning

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