End of our ropes with autistic child

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annibe11e
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30 May 2017, 10:44 am

My 9 year old stepson who is on the spectrum is driving my husband and I (as well as the other children) absolutely bonkers. He requires one on one help at school and has limited verbal ability. He's always used repetitive words and wanted them repeated back. Even when people around him complied, it was never enough and he would devolve into screaming. So, in a joint effort with the school, we stopped repeating words/phrases back to him. Instead, we say, "we're not doing that". After awhile, it became clear that all he wanted was a response so that worked fine. Then he began to increase the frequency, so that we are saying "we're not doing that" every 2 or 3 minutes all day. That got a bit old, so we decided to start using time outs in the hopes of reducing the frequency. We did this for a few months and saw that it did nothing to reduce the frequency and was just a new "response" to him and didn't bother him at all. Now we've come to notice that he uses his repetitive phrases and words whenever anyone speaks. So then we thought maybe he is bothered by speech, so we tried giving him noise cancelling headphones. He refused them and broke them. I took a step back this weekend and decided to observe him. We ignored him until he devolved into screaming and then put him in his room until he calmed down. He quickly showed the ability to calm down instantly, which tells me he is in control the whole time, but is using a "meltdown" as a tactic to get what he wants. Any punishment seems to be what he wants, as it forces us to stop and focus on him. Perhaps this has to do with him having a 3 year old sister at him mom's house. He probably is struggling with no longer being the one receiving the most attention. I can certainly understand that, but it's taking it's toll. I'm at the point that I want to put a lock on his door and deny him interaction when he does this, but I hate that idea. Please help with any ideas at all!!



sunshinescj
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30 May 2017, 11:43 am

How is his interaction with you guys and his siblings? Does he try to interact/show interest in what you guys are doing? I don't know how much he can be/is involved in family activities but maybe he is trying to make himself more relevant/be more involved. Also you said he likes hearing his words repeated, have you tried something like the app Talking Tom? It would repeat his words back to him in a funny voice. Maybe he would enjoy that. Does he use any kind of assistive speech device/app? If not, maybe something like that would help him express himself and cut down on frustration for all of you. Best of luck!



annibe11e
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30 May 2017, 12:04 pm

sunshinescj wrote:
How is his interaction with you guys and his siblings? Does he try to interact/show interest in what you guys are doing? I don't know how much he can be/is involved in family activities but maybe he is trying to make himself more relevant/be more involved. Also you said he likes hearing his words repeated, have you tried something like the app Talking Tom? It would repeat his words back to him in a funny voice. Maybe he would enjoy that. Does he use any kind of assistive speech device/app? If not, maybe something like that would help him express himself and cut down on frustration for all of you. Best of luck!


He likes to interact physically with me and his dad. He shows almost no interest in interacting with his siblings. Perhaps we could increase one on one interaction with dad in his room. We call it floor time.

Talking Tom is a great idea!! We just got him a tablet and I'm going to install it ASAP.

Thank you so much for responding!



sunshinescj
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30 May 2017, 12:08 pm

You're very welcome! I hope Talking Tom works well for you all!



ASDMommyASDKid
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30 May 2017, 12:45 pm

OK, it looks like the school gave you the worst possible advice, which is why this has backfired on you. I have a very-verbal (little professor-type) autistic son, and when he was younger and less verbose, he would get very upset if we did not parrot back phrases. (We did it but sometimes you can't do it every time b/c you have to do something else and he was not patient enough to understand it) It was an integral part of his language acquisition process. I cannot imagine the logic of punishing this, especially in a child who is struggling with verbal communication. It would be like punishing babbling in a toddler because it was getting on your nerves.

The being upset part has subsided with age and maturity, but the need still exists albeit in more sophisticated forms. Yes, it can be annoying at times, because it is repetitive and not always about something of interest to my husband and me or we are in the middle of something etc. and it makes it difficult sometimes for us to do what we need to do. That said, it is a need and it is something you really need the school to have more tolerance for it, and you also need to get used to dealing with it yourselves.

Autistic children typically have an echolaliac form of language acquisition. This is not uncommon, and the school is either incredibly uneducated or just more interested in their own convenience.



sunshinescj
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30 May 2017, 1:02 pm

I agree ASD mommy I just wasn't sure how to word it but it is like babbling just in an older person. I guess that's why I suggested a device but he may do similar things with it if he is still learning how to put his thoughts together into words and looking for input.



ASDMommyASDKid
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30 May 2017, 5:10 pm

sunshinescj wrote:
I agree ASD mommy I just wasn't sure how to word it but it is like babbling just in an older person. I guess that's why I suggested a device but he may do similar things with it if he is still learning how to put his thoughts together into words and looking for input.


Yeah--your idea is good b/c it will make it easier for the parents to let the child do what he needs more often.



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30 May 2017, 10:19 pm

annibe11e wrote:
My 9 year old stepson who is on the spectrum is driving my husband and I (as well as the other children) absolutely bonkers. He requires one on one help at school and has limited verbal ability. He's always used repetitive words and wanted them repeated back. Even when people around him complied, it was never enough and he would devolve into screaming. So, in a joint effort with the school, we stopped repeating words/phrases back to him. Instead, we say, "we're not doing that". After awhile, it became clear that all he wanted was a response so that worked fine.

Kids on the spectrum often have slower verbal processing speed so this strategy is really not going to help your stepson. You need to use short clear instructions and repeat if necessary in order that he is able to process and understand at a level that is comfortable for him. I think the school your stepson is in doesn't seem to understand the needs of an ASD child but I guess you are stuck with them?



annibe11e
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31 May 2017, 9:18 am

I might not have made it clear in my original post, but we stopped repeating words back to him because it would escalate, as the repetitions were never quite "right" or enough and would result in meltdowns. His doctor suspects OCD. Getting a different reaction like to his particular words and phrases "we're not doing that" actually worked very well for a while (about a year).

The issue now (the last 6 months or so) is that he is demanding responses every 2 or 3 minutes during the day and usually when he sees or hears other people communicating. If anyone tries to speak at the dinner table, for instance.



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31 May 2017, 6:09 pm

It escalates because they need it--just like baby babbling will increase if you encourage it and babble back.. Success in extinguishing it (regardless of the length of time) is not a reflection of a positive or negative judgment of the need for the behavior itself.

I don't know much about OCD, other than it is a common co-morbid with autism, but as I said, what you describe really is an important part of the language acquisition process for autistics. I understand it cannot be indulged 100% of the time, but by punishing it and attempting to extinguish it, you risk hindering his language development as well as other consequences.

Edited to add, I understood exactly what you meant, and the reason he is doing it is this is his way of communication. The timing of it even indicates this. Yes,they will often meltdown when the responses are not perfect. It is something that improves over time when they realize you are not doing it on purpose and cannot help the imperfections or read his mind about what he wants.

You need to learn how to manage it not extinguish it.



cyberdad
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31 May 2017, 7:32 pm

annibe11e wrote:
I might not have made it clear in my original post, but we stopped repeating words back to him because it would escalate, as the repetitions were never quite "right" or enough and would result in meltdowns. His doctor suspects OCD.


ASDMommyASDKid wrote:

I don't know much about OCD, other than it is a common co-morbid with autism, but as I said, what you describe really is an important part of the language acquisition process for autistics. I understand it cannot be indulged 100% of the time, but by punishing it and attempting to extinguish it, you risk hindering his language development as well as other consequences


OCD is very common (I understand), my daughter has comorbid OCD, anxiety/phobias and ADHD. Medication has helped manage the symptoms but we supplement with trying to extinguish her anxious compulsive behavior using behavioral strategies. OCD is treated the same way as anxiety/phobias involving aversion therapy/exposure to triggers leading to systematic desensitization



eikonabridge
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01 Jun 2017, 4:28 am

annibe11e wrote:
He quickly showed the ability to calm down instantly, which tells me he is in control the whole time, but is using a "meltdown" as a tactic to get what he wants.

So many wrong things that I don't even know where to start. First of all, remember this mantra: STIMMING TIME IS LEARNING TIME. You use the children's stimming behavior to teach them new skills. 9-year-olds should learn multiplication/division and rational number arithmetics already, but if your son is not at this level, then integer arithmetics is good too. You can buy flashcards from Amazon.com. He should be able to draw pictures (stick figures), too. So, that's another activity you can modulate in. Be creative, you can teach your son so many skills. Regarding modulation, read this: http://wrongplanet.net/forums/viewtopic.php?t=293342

Since his stimming behavior is not harming himself (not putting himself into physically dangerous settings), there is absolutely no need to suppress it. The worst thing a parent can do is to suppress stimming/repetitive behaviors of autistic children. Stimming behaviors are the wet dewdrop spots on the leaf ("brain") of these children. That's the starting point to grow giant sequoia trees inside the braind of these children. Read this article:
http://www.eikonabridge.com/AMoRe.pdf

Another point: you are dealing with your son as if he were a neurotpyical child. You think he "is in control." You think he is manipulating you guys. Oh goodness. I just don't know when neurotypical people will ever understand autistic people. The concept of "manipulation" is a neurotypical concept. Being neurotypical, you'll never understand how foreign this concept is to autistic people. You assume that everyone else in the world thinks like you do. Your thinking is: if we don't manipulate the children, they will manipulate us.

I can understand you. For instance, the other day I mentioned to my neurotypical sister that pushing electronic switch buttons (as in circuits, or in elevators) is an important step in the learning process of many autistic children. I told her that it is because these children get to see "cause and effect." She then told me: "That makes sense. It's something that make them feel they are in control." See the difference? Neurotypical people immediately think about power, control, etc. They view things from a first-person's perspective. The driving force in neurotyical people's lives is "ego." Autistic people don't do that. They view themselves from a third-person's perspective. Whereas they see "cause and effect", you see "control."

Similarly, once upon a time someone told me: "your child is misbehaving." And then it struck me, "to misbehave" is not even part of my vocabulary in all these 9 years I've been raising my children. It's a foreign concept to me. I don't think my children ever misbehaved. Sure, they have tantrums now and then, but "having beef" on some issues, to me, is totally legitimate. They could also be ignorant or unaware or unfamiliar with things/rules, but somehow I have never described my children as "misbehaving."

To a neurotypical person, like yourself, you will probably think I am not serious or I am stretching things. But no, when I hear the word "control" (e.g. from my sister) or "misbehaving", I truly get puzzled/startled at how different neurotypical people are from autistic people, to the point that our vocabularies are actually different.

Please accept the fact that autistic people belong to a different species of humans. They think differently. They have a different way of growing up. Don't manipulate them. Don't try to "give them a lesson." All those are wrong approaches.

For instance, not long ago my son would get frustrated at bath time, because he was still playing games on laptop, so he would protest or feel mad/sad. What would you do? You want to know what I did in such a case?

I simply told him: "Yes, life sometimes is tough, like taking a bath, now. But life sometimes is fun. Remember when you saw the car in the garage of your friend's house?" And he would start to smile. I'd ask him: "What was the brand of the car?" And he would say: "It was a Tesla." And I'd ask him: "Does Tesla make good cars?" And he would say: "I think so." Etc. And afterwards he got into the bathtub without problem.

And that was not it. This last weekend, as usual, I took my son to elevator rides to a mall (my daughter actually joined, too). We stopped by a bakery and I got a blue sugar cookie for my son (my daughter got a chocolate chip cookie). While my son was enjoying his cookie, I asked him: "Is life fun, now?" And he would say "yes." And then I reminded him again about "Life sometimes is tough, like when you didn't like it when you had to take a bath, but, life sometimes is fun, like now, right?" And he'd say "yes." What am I doing? Next time he protests about taking a bath, now I can also mention about the blue sugar cookie and the elevator rides to him.

All I do is to show my son the facts. I don't tell him "you should do this" or "you shouldn't do that" or come up with rules. I simply tell him "Life sometimes is tough. But life sometimes is fun." That's all. I simply tell him facts.

Do you realize how I treat my children as equal-rights human beings? Not only I consider them as equals, I take them as my teachers, and I am perfectly prepared for the day when they are all grown-up and much more knowledgeable than myself.

As you can see, there is a different way of approaching these children. If you see them as defective, you make their lives miserable and your own life miserable. If you see them as the brightest minds in the world and pay deference to them, they are happy and so are you.

I have one and only one tool to deal with all the issues of autism. That tool is called "modulation." Autism, to me, is one single issue, solvable by using one single tool. Elementary, my dear. You'd see me doing one thousand different things (e.g. making animation video clips) and you'd get confused. But to me, everything I do is nothing but modulation. All those one thousand things I do, are nothing but different manifestations of modulation. Autism is trivial, and beautiful. I just wish more people learn to understand it.


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06 Jun 2017, 10:57 pm

annibe11e wrote:
My 9 year old stepson who is on the spectrum is driving my husband and I (as well as the other children) absolutely bonkers. He requires one on one help at school and has limited verbal ability. He's always used repetitive words and wanted them repeated back. Even when people around him complied, it was never enough and he would devolve into screaming. So, in a joint effort with the school, we stopped repeating words/phrases back to him. Instead, we say, "we're not doing that". After awhile, it became clear that all he wanted was a response so that worked fine. Then he began to increase the frequency, so that we are saying "we're not doing that" every 2 or 3 minutes all day. That got a bit old, so we decided to start using time outs in the hopes of reducing the frequency. We did this for a few months and saw that it did nothing to reduce the frequency and was just a new "response" to him and didn't bother him at all. Now we've come to notice that he uses his repetitive phrases and words whenever anyone speaks. So then we thought maybe he is bothered by speech, so we tried giving him noise cancelling headphones. He refused them and broke them. I took a step back this weekend and decided to observe him. We ignored him until he devolved into screaming and then put him in his room until he calmed down. He quickly showed the ability to calm down instantly, which tells me he is in control the whole time, but is using a "meltdown" as a tactic to get what he wants. Any punishment seems to be what he wants, as it forces us to stop and focus on him. Perhaps this has to do with him having a 3 year old sister at him mom's house. He probably is struggling with no longer being the one receiving the most attention. I can certainly understand that, but it's taking it's toll. I'm at the point that I want to put a lock on his door and deny him interaction when he does this, but I hate that idea. Please help with any ideas at all!!


One of the worst things you can do to a child on the spectrum is isolate them, because 1. They don't usually perceive it as a punishment....they will usually find something to zone out on or some way to occupy themselves, and withdraw into their own world. 2. Children on the spectrum need an immersive social environment to foster social development.

Some observations:

Your step son is language delayed. How this is perceived by him, I don't know. I was not non-verbal. However it's possible that his ability to speak is not just delayed, but his ability to understand speaking his also delayed but developing and perhaps he has just started to understand the concept of conversation. He hears people talking (though maybe he does not understand all the words, or even that all the words have meaning) and then people talk back. Perhaps he thought he would give this a try to the best of his ability, and doesn't understand why it's getting him in trouble when it doesn't get other people in trouble.

It is just speculation, but I wouldn't punish him as you might be unintentionally closing a window of opportunity for language development.

Has anyone ever attempted to teach him how to have a simple conversation with the words he does know?

I've heard it's not unusual for those with limited verbal abilities to have a language development spurt around this age.



maru99
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30 Jul 2017, 10:21 am

Hi, I think You are working very hard at your best to find solutions for your step son in constructive way although the situation can be very frustrating.

I understand the repeating back thing is his OCD behavior. My son used to do that sometime ago.

I think you are right in his stress level. I guess stress level is something to do with OCD. So reducing his stress level is good idea. Head phone was good idea but I am sorry to hear it didn't work out.

I am not sure your step son's abilities in communications so I cannot give you right idea but we can reduce kids stress level by giving them some predictability and control in everyday life. For example, knowing what is happening next or tomorrow help people so in that way, people don't feel so much anxiety if they know what comes next.

Also if he can request things verbally or using assistive technology (Analogue= PECS, Degital=ipad). Even he can request things verbally, sometime it is hard to do everything such as remembering what he wants or how to say. Putting visuals or chart of things that he can request on the wall might help him. (or even carrying charts/cards)

You may have had these things already in place but I just want to let you know that I have done those things in the past and worked well.



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30 Jul 2017, 2:31 pm

[quote="eikonabridge"]
For instance, not long ago my son would get frustrated at bath time, because he was still playing games on laptop, so he would protest or feel mad/sad. What would you do? You want to know what I did in such a case?

I simply told him: "Yes, life sometimes is tough, like taking a bath, now. But life sometimes is fun. Remember when you saw the car in the garage of your friend's house?" And he would start to smile. I'd ask him: "What was the brand of the car?" And he would say: "It was a Tesla." And I'd ask him: "Does Tesla make good cars?" And he would say: "I think so." Etc. And afterwards he got into the bathtub without problem.

And that was not it. This last weekend, as usual, I took my son to elevator rides to a mall (my daughter actually joined, too). We stopped by a bakery and I got a blue sugar cookie for my son (my daughter got a chocolate chip cookie). While my son was enjoying his cookie, I asked him: "Is life fun, now?" And he would say "yes." And then I reminded him again about "Life sometimes is tough, like when you didn't like it when you had to take a bath, but, life sometimes is fun, like now, right?" And he'd say "yes." What am I doing? Next time he protests about taking a bath, now I can also mention about the blue sugar cookie and the elevator rides to him.

All I do is to show my son the facts. I don't tell him "you should do this" or "you shouldn't do that" or come up with rules. I simply tell him "Life sometimes is tough. But life sometimes is fun." That's all. I simply tell him facts.
[quote]

Wow! I totally relate to this. That is exactly the way I wanted to be treated as a child. Even as an adult I'm more liable to do things if I see a logical cause and effect or be given a logical explanation.



Demonique
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03 Sep 2017, 4:56 pm

eikonabridge wrote:
annibe11e wrote:
Since his stimming behavior is not harming himself (not putting himself into physically dangerous settings), there is absolutely no need to suppress it. The worst thing a parent can do is to suppress stimming/repetitive behaviors of autistic children. Stimming behaviors are the wet dewdrop spots on the leaf ("brain") of these children. That's the starting point to grow giant sequoia trees inside the braind of these children. Read this article:
http://www.eikonabridge.com/AMoRe.pdf

Another point: you are dealing with your son as if he were a neurotpyical child. You think he "is in control." You think he is manipulating you guys. Oh goodness. I just don't know when neurotypical people will ever understand autistic people. The concept of "manipulation" is a neurotypical concept. Being neurotypical, you'll never understand how foreign this concept is to autistic people. You assume that everyone else in the world thinks like you do. Your thinking is: if we don't manipulate the children, they will manipulate us.



OK his stimming might not be harming himself but it could be harming other people, someone constantly talking can effect the mental health of others, some of their other children might be undiagnosed ASD and his behaviour could be negatively affecting them.

Also manipulation is a neurotypical concept? BS, I'm perfectly capable of manipulating and bullshitting other people.