Page 1 of 2 [ 24 posts ]  Go to page 1, 2  Next

ellemenope
Pileated woodpecker
Pileated woodpecker

User avatar

Joined: 12 Jun 2013
Age: 40
Gender: Female
Posts: 178

12 Sep 2016, 2:09 am

Hi. This is a long post- if you can get through it, I really welcome and value your thoughts and input!

I posted a long while ago about concerns about my son (now 6 years old) seeming to live in a "fantasy" world. He's a creative kid, loves reading, looking at art, nature/animals and drawing.

Ever since we can remember, he has gone through phases where he is very fixated on a certain topic or story/character (special interests- totally normal for our kids, I know). He has held on to aspects and parts of each interest/topic/story/character over the years, and it is like almost everything is filtered through them for him. For example, he will talk about seeing things related to these stories/characters as if they are there (like actually pointing and saying "see? it's there!"), he will act or talk like the character/animal/whatever, everyone and everything around him will take the role of someone or something in the narrative. This is especially true when he is upset/melting down. (Then he and the characters/story are about violent animals, burning and destruction around him, he will growl and stomp and act intimidating/threating to anyone around, and will talk about being an attacking dino/animal etc. ) It's kind of the same when he is really happy too- then everything will be about the more happy/lighthearted parts of his special interests (flowers, pokemon, sea animals etc.).

My son has always been echolalic since he began speaking (at a "typical" age). And because we follow his special interests and encourage them, when he speaks through the "filter" of his special interests and with scripts from books and movies, we totally understand him almost all the time. But over the past couple of years, his typical and pragmatic speech has also improved greatly- he is able to hold a short back-and-forth conversation about real things (though rarely does), he can answer and ask questions about pertinent topics, he can listen and respond appropriately about "real" things that a person is talking about (when he is paying attention, which is another issue). I know he can do these things, I also know that speaking in this way probably takes extra effort/processing and doesn't come naturally to him the way his echolalic speech does. But he can do it, and he does it when HE needs to and when he wants to. Unfortunately for us, he doesn't usually talk this way when we need him to or want him to, and doesn't when other people speak to him. Other people generally don't know what the hell he is talking about- to them, when he is not answering a direct question, it must sound like utter nonsense and crazy-talk and that's problematic.
He is at a point where is pretty isolated socially because at his age, other 6 year olds are talking about real stuff and they react negatively or simply shrug/give weird looks and walk away. I try to encourage him to engage in "pretend" play with other kids because he can do that- but it always has to be what my son is pretending and pertaining to whatever he is into that day. If it is any other kind of pretending, he doesn't really engage.

I recently met with a new speech therapist- he hasn't been in speech therapy since he was about 3-4 because every time we tried he was obstructive and just refused to participate, he's also very smart and would tell me that it was "stupid and boring" :roll:. So instead of continuing to throw away thousands of dollars we stopped speech therapy, and I try to do speech and language activities with him as part of our homeschooling. Anyway, so after hearing my description of what's going on, and witnessing some of his speech and interactions the speech therapist said we've simply got to stop participating in this kind of fantasy speech. Honestly, I was glad to hear it because after years of having to communicate about "nonsense" things through my son's fantasy filter, I feel like I'm going nuts.

So in the past few days we have been insisting that he speak to us in more "real" terms about things (things we absolutely know he has the words to communicate), keeping in mind it may be more difficult/take more processing and time. And we have been trying to get across the point that there is a time for "pretend/imaginary" things and a time for dealing with and talking about reality. It's not going well. I've drawn the line at when he is upset- at these times I know it's WAY more difficult for him to process thoughts into non-echolalic speech. At these times we are just working on calming down, not paying attention to speech. The problem is that he BECOMES upset and begins melting down when we insist that he speak in "real" terms with us about things we are addressing at the moment.

My husband thinks that my son feels like we are tearing down his world, his framework of how he makes sense of things and that it's damaging or traumatic. :cry: I'm not sure what I think. I KNOW that it is extremely upsetting for my son, but I don't fully agree that we are "tearing apart his world". And although I love his creativity and how he becomes so immersed in his interests, I agree with the speech therapist and feel that we NEED to get him relating and communicating a bit more now since he can do it. I don't know if there is a gentler way to do it or if there is a way that won't be so upsetting for him.

Has anyone dealt with anything similar? Any thoughts about this?



kraftiekortie
Veteran
Veteran

User avatar

Joined: 4 Feb 2014
Gender: Male
Posts: 76,357
Location: Queens, NYC

12 Sep 2016, 2:19 pm

I know this might seem simplistic: but I agree with the speech therapist.

He has to confront Reality, and talk about real things.

It might be that you are "breaking down his world."

But he does need to let Reality into his "world"; otherwise, he will have great difficulty with relating with other people.

The longer you wait, the worse it will get.

Always be ready with a hug when he melts down...always have a "safety net" where he can "fall into.....

But do insist that he has to live the "real" way.

Take him into stores. Have him "buy" things. Make sure he gets the correct change. Things like that. Maybe he can start by "buying" his own soda, juice, candy, or whatever.



androbot01
Veteran
Veteran

User avatar

Joined: 17 Sep 2014
Age: 51
Gender: Female
Posts: 6,746
Location: Kingston, Ontario, Canada

12 Sep 2016, 2:43 pm

ellemenope wrote:
He has held on to aspects and parts of each interest/topic/story/character over the years, and it is like almost everything is filtered through them for him.

Sounds like he's built up a safe world and method of communication. By participating in it you are validating it; trouble is it's a small world for him.
Quote:
...over the past couple of years, his typical and pragmatic speech has also improved greatly- he is able to hold a short back-and-forth conversation about real things (though rarely does), he can answer and ask questions about pertinent topics, he can listen and respond appropriately about "real" things that a person is talking about (when he is paying attention, which is another issue). I know he can do these things, I also know that speaking in this way probably takes extra effort/processing and doesn't come naturally to him the way his echolalic speech does. But he can do it, and he does it when HE needs to and when he wants to.

That he can do it is the important thing. He will be able to express himself to people as an adult.

Quote:
He is at a point where is pretty isolated socially because at his age, other 6 year olds are talking about real stuff and they react negatively or simply shrug/give weird looks and walk away. I try to encourage him to engage in "pretend" play with other kids because he can do that- but it always has to be what my son is pretending and pertaining to whatever he is into that day. If it is any other kind of pretending, he doesn't really engage.

Yeah, play is hard.

Quote:
So instead of continuing to throw away thousands of dollars we stopped speech therapy, and I try to do speech and language activities with him as part of our homeschooling. ... Honestly, I was glad to hear it because after years of having to communicate about "nonsense" things through my son's fantasy filter, I feel like I'm going nuts.

If the therapist is telling you what you already know, you should continue to save your money.

Quote:
So in the past few days we have been insisting that he speak to us in more "real" terms about things (things we absolutely know he has the words to communicate), keeping in mind it may be more difficult/take more processing and time.

I would suggest a less direct approach: turn his extremely creative mind to the arts and sciences; that is, get him interested in learning. If he takes to anything in particular (eg. biology, geology, painting, music, whatever) than try getting him to attend some sort of class or workshop about the interest. This will give him an opportunity to interact with other children/people with an interest in common and at a less personal level.

Quote:
My husband thinks that my son feels like we are tearing down his world, his framework of how he makes sense of things and that it's damaging or traumatic.

I'm with your husband on that one; which is why I suggest the indirect, go with his interest sort of approach. He has the language skills, which is awesome; forcing it will make him have bad associations with self-expression. He's young yet, there's lots of time. I do agree, however, that he does need to disengage from his unique form of communication as in the long term it will isolate him.



somanyspoons
Veteran
Veteran

Joined: 3 Jun 2016
Age: 45
Gender: Male
Posts: 995

12 Sep 2016, 4:00 pm

Yes. I've dealt with this before. I am both autstic and a former special educator who worked with kiddos who had behavior problems. I have to go with your husband on this one.

What your speach therapist is suggesting is extinguishing the behavior through planned ignoral. The problem with this is that these fantasies are how your son thinks naturally. Its his native language. Asking him to stop is like asking a kid to never speak in a way that is comfortable to him.

If you ignore him when he uses his native language, you will be ignoring him. Calling doctor obvious, right? Children who get ignored learn that they are bad and not worthy of attention. They act out. When they are autistic, they self injure and they have meltdowns.

A better, less violent, way, is to move FORWARD. Teach your son the multi-lingualism that he will need to get by in the world. Communication is a two way street. He does need to be able to communicate without using his fantasy world. But that is a skill he needs to learn, not a behavior that needs to be forced on him.

How can you go about this in a teaching way? Well, the speech therapist should be the one guiding you on that. I would suggest finding a therapist who is more play centered and child centered. The one you mention sounds behaviorist. And that doesn't really work very well for highly intelligent and creative children. At the very least, tell them that you don't like this method and ask if they have another, more child or play-centered way of teaching your son pragmatic language skills.

For a child like this one, I would use teaching stories. I think he'll really take to them, based on what you've told us. http://carolgraysocialstories.com/socia ... hat-is-it/



somanyspoons
Veteran
Veteran

Joined: 3 Jun 2016
Age: 45
Gender: Male
Posts: 995

12 Sep 2016, 4:04 pm

I do also want to address your "going nuts" with your son's native communication style. I just want to say that its totally normal to be bored with 6 year old stuff, to the point of wanting to rip your hair out. Home schooling is great for the kid, IMO, but can be pretty hard on Mom. So lets just acknowledge that you are doing something really challenging. But 6 year olds are never going to be really great conversationalists. If there is some way that you can engage your own intellect while you are homeschooling, I really suggest you do so. There are so many ways to address this. You need to take care of your own needs, too.

One suggestion I can give is to read Neurotribes. It will give you a history of how we've abused autistics in the name of making them more normal over the years. (I'm so grateful to have that book to refer people to now! It was so hard to explain to them that they are participating in a harmful social movement before that book.) It will both give you some perspective on where professionals like your speech therapist are coming from, and give your brain something adult to chew on.



Last edited by somanyspoons on 12 Sep 2016, 4:17 pm, edited 1 time in total.

ASDMommyASDKid
Veteran
Veteran

User avatar

Joined: 27 Oct 2011
Gender: Female
Posts: 3,666

12 Sep 2016, 4:06 pm

I am going to say I have mixed feelings on this mainly because we have benefited a lot from my son sharing his fantasy world with us and in our case it was definitely a net benefit because it provided me with the access I needed to his brain and his world which helped him become interested to some degree, in the outer world. It started with us visiting him,him slowly visiting our world and then everything kind of mixing together. It is till a mix, and I can't always redirect him, so we work with in his framework, still, some of the time so it ends up where I sometimes use his universe rules and characters to do what I need him to do.

That said, I don't know what I would think if it is was still a one way trip of me just visiting him, and I definitely understand the need to progress to the next step.

I am wondering if there is something in the middle, where the speech teacher could require say 10 minutes into a session, for him to "act real." This way the person trained in speech and communication is in the one in charge of the first part of the transition. In my head, I just think trying to cut him off cold turkey would drive him further underground b/c instead of destroying his world (for good or ill) I think he might just retreat into it or possibly he might act out in harmful ways. I don't know it, but I think both of these are real possibilities.

Just my 2 cents.



kraftiekortie
Veteran
Veteran

User avatar

Joined: 4 Feb 2014
Gender: Male
Posts: 76,357
Location: Queens, NYC

12 Sep 2016, 5:05 pm

Nothing wrong with putting in your 2-cents. You have experience in this.

It's true. There's nothing wrong with a child having a fantasy life. But I believe a child, while fantasizing, has to have two feet firmly in Reality.

Some day, maybe your boy could be a writer!



animalcrackers
Veteran
Veteran

User avatar

Joined: 26 Feb 2011
Gender: Male
Posts: 2,207
Location: Somewhere

12 Sep 2016, 6:05 pm

I think, even when he's talking about "fantasy things" he's probably actually trying to talk about real things.... Basically trying to use something that makes sense to him as a model for understanding the world and creating analogies (however obscure, however "that's a stretch") that he can't explain are analogies, let alone how they're analogies.

Or he may simply be using the language attached to his special interests, and not even relying on those special interests for the conceptual framework itself -- again, using analogies but not so much to make sense of life and the world as to just find some words to communicate with people.

This is my guess because I used to do the latter all the time, just in a less noticeable way....unless I was really upset or trying to talk about something really complex/abstract, and then I made no sense to anyone. I didn't understand until I was about 21 that I had to explain that I was using "as close as I can get" words and analogies to avoid some of the baffling misunderstandings I experienced (which required understanding stuff about how other people use words...it's a whole complicated mess).....but I didn't know how to explain that, because I had never heard or seen anyone else explain it (at least not in any context that I could relate to the contexts I found myself in).

ellemenope wrote:
My husband thinks that my son feels like we are tearing down his world, his framework of how he makes sense of things and that it's damaging or traumatic.


I think your husband is probably right.....and whether it is a framework for understanding the world or merely a framework for his speech and for communicating with the world, it is probably deeply frightening, confusing, and frustrating to suddenly have it no longer be recognized/tolerated by his parents -- likely the only people who manage to understand him at all.

You may also be overestimating his ability to talk about stuff using "real" words .... just because he can do it sometimes and about some things doesn't mean he can do it all the time about anything/everything. As a young adult, when I knew I had to explain I was using borrowed words and actually managed to say something to that effect, someone told me they didn't want to hear other people's words and to use my own words....but I didn't have any of my own (and couldn't explain that), so regardless of that person's intentions it was effectively like being told to just shut up and not say anything, and that my best effort to communicate wasn't good enough. It was extremely frustrating and hurtful and made me feel helpless.

I'm not saying you shouldn't push him to use normal speech -- it's really important to be able to communicate in ways that people actually understand. I guess I'm just saying maybe you should be gentler about it (like request more often that he use "normal" speech but shift the balance towards normal speech more gradually -- or translate what he means out loud and have him repeat it back to you or something) .....and I worry about the possiblity that it's really not about "fantasy" vs "reality" but about any communication versus none.


_________________
"Coming back to where you started is not the same as never leaving." -- Terry Pratchett, A Hat Full of Sky

Love transcends all.


androbot01
Veteran
Veteran

User avatar

Joined: 17 Sep 2014
Age: 51
Gender: Female
Posts: 6,746
Location: Kingston, Ontario, Canada

12 Sep 2016, 6:36 pm

Speaking of fantasy... this thread reminds me of an episode of Star Trek: The Next Generation (I know, but it's a short clip.)



Don't think the link above will work, so:

https://www.youtube.com/watch?v=f3N0dlL2NU8



ellemenope
Pileated woodpecker
Pileated woodpecker

User avatar

Joined: 12 Jun 2013
Age: 40
Gender: Female
Posts: 178

13 Sep 2016, 7:40 am

Thank you all so much for your replies. Whenever my head is spinning on a topic about my boy, I know I can come here and have some real thoughtful input and valuable input based on your experiences as autistic and parents of autistic kids. So thanks again.

I'm digesting all the responses. (The star trek clip is amazing, BTW- I showed it to my husband (suspected Aspie :) ) and he said "oh yes, I've often thought of that episode when thinking about communicating with [our son]" AND he remembered WHEN and WHERE he first saw the episode, years ago. LOL)

Yeah, the speech therapist is totally a behaviourist- we have extreme difficulty finding any services that TRULY follow a different approach, living abroad here. So I am also suspect of her approach of ignoring fantasy speech and basically cutting him off all the time. We haven't done exactly that, but even our milder version of what she suggested is not going well.
As someone commented, yes, his world IS extremely small and this is something we have to change but have not had a lot of success with. Sometimes I think he doesn't understand when we go out that all the other people around...are like ACTUAL people. It's hard to explain... but it often seems like he regards other people as obstacles to move around, to get what he wants and where he is going. I think this is a normal lack of TOM for us on the spectrum and all that, but I wonder if it would improve if he were challenged by being in more different social situations- though that always feels like throwing him to the wolves. I'm constantly looking for safe ways that I can "get him out there", but here they are few and far between. We were/are also of the thinking that there will come a day, with age or maturity, neurological development etc., when he is more motivated to become social and that is the best way for it to happen, but that hasn't happened at all yet. Now I'm starting to worry, it won't ever happen in that way.

To the person who said he will be a writer- oh my yes. Or an artist. He is incredibly into drawing and he has created some art that is really amazing and out of this world.

Still more thoughts to share, but I have to go for now. Thanks again



kraftiekortie
Veteran
Veteran

User avatar

Joined: 4 Feb 2014
Gender: Male
Posts: 76,357
Location: Queens, NYC

13 Sep 2016, 7:49 am

You should also note that most kids improve on their own as they age.



androbot01
Veteran
Veteran

User avatar

Joined: 17 Sep 2014
Age: 51
Gender: Female
Posts: 6,746
Location: Kingston, Ontario, Canada

13 Sep 2016, 9:09 am

ellemenope wrote:
(The star trek clip is amazing, BTW- I showed it to my husband (suspected Aspie :) ) and he said "oh yes, I've often thought of that episode when thinking about communicating with [our son]" AND he remembered WHEN and WHERE he first saw the episode, years ago. LOL)

It's how I used to think when I was a kid. Like the experience could be shared by the sharing of the memory. My mother is elderly but she is still here and she can speak this language with me because she remembers the experiences. I will be sad to no longer have anyone to communicate this way with as it is what is natural for me. But I speak neurotypical too.
ellemenope wrote:
Yeah, the speech therapist is totally a behaviourist- we have extreme difficulty finding any services that TRULY follow a different approach, living abroad here.

I think its the same everywhere. CBT in all it's forms is the accepted form of therapy. It can be useful, but has to be taken in small doses.
ellemenope wrote:
Sometimes I think he doesn't understand when we go out that all the other people around...are like ACTUAL people. It's hard to explain... but it often seems like he regards other people as obstacles to move around, to get what he wants and where he is going. I think this is a normal lack of TOM for us on the spectrum and all that, but I wonder if it would improve if he were challenged by being in more different social situations- though that always feels like throwing him to the wolves.

He doesn't see them at all. He is comfortable in his world now, he has no need to engage them.
How does he react when you introduce social concepts to him? Can he put himself in the place of others (how would you feel if someone pushed into you?) He may not care. Like you say, he's young and the value of socializing will likely become apparent to him as he ages.
I used to have an autistic acquaintance (we fell out, long story,) and we once went to the drugstore together and to the magazine section where a woman was browsing a section. My acquaintance walked right between her and the section she stood in front of and began to browse himself. She huffed and stomped off. I was so embarrassed and I pointed out that he had cut into her space. He shrugged and said "who cares." It was disconcerting to see an adult be unaware of such basics of civility.
ellemenope wrote:
I'm constantly looking for safe ways that I can "get him out there", but here they are few and far between.

Something structured would be good. As he gets older there will more education/social opportunities. Perhaps something where there is a focused activity he can concentrate on while being in the midst of others. I'm going to guess that he doesn't like sports as they resemble play, but there are some he may take to. I enjoyed horseback riding as a kid.



DataB4
Veteran
Veteran

User avatar

Joined: 7 May 2016
Age: 36
Gender: Female
Posts: 2,744
Location: U.S.

13 Sep 2016, 9:55 am

What would happen if you presented "real time" like a school assignment? I assume he understands the concept of schoolwork time, so could you use that? Even if you use the foreign language analogy, it'd be like saying, "foreign language time," and foreign language students translate between languages during that time.

Androbot01, I thought of that Star Trek episode also, because the concept of speaking only in shared metaphors/stories is similar. "When the wall fell" means nothing to us, for example.



kraftiekortie
Veteran
Veteran

User avatar

Joined: 4 Feb 2014
Gender: Male
Posts: 76,357
Location: Queens, NYC

13 Sep 2016, 10:22 am

I should have thought of that!



ellemenope
Pileated woodpecker
Pileated woodpecker

User avatar

Joined: 12 Jun 2013
Age: 40
Gender: Female
Posts: 178

13 Sep 2016, 10:57 am

androbot01 wrote:
He doesn't see them at all. He is comfortable in his world now, he has no need to engage them.
How does he react when you introduce social concepts to him? Can he put himself in the place of others (how would you feel if someone pushed into you?) He may not care. Like you say, he's young and the value of socializing will likely become apparent to him as he ages.
I used to have an autistic acquaintance (we fell out, long story,) and we once went to the drugstore together and to the magazine section where a woman was browsing a section. My acquaintance walked right between her and the section she stood in front of and began to browse himself. She huffed and stomped off. I was so embarrassed and I pointed out that he had cut into her space. He shrugged and said "who cares." It was disconcerting to see an adult be unaware of such basics of civility.

Something structured would be good. As he gets older there will more education/social opportunities. Perhaps something where there is a focused activity he can concentrate on while being in the midst of others. I'm going to guess that he doesn't like sports as they resemble play, but there are some he may take to. I enjoyed horseback riding as a kid.


The guy in the magazine section- that's my boy, everywhere all the time. His sister is constantly telling him to get the hell out of the way of the TV, as he will just stand right in front of it. He also talks non-stop and over everyone and everything around him- really doesn't understand that we are trying to listen to the TV or music or whatever and that his talking/noise is making that impossible/unpleasant. We have tried different ways to get the idea across- playing perspective games. But it doesn't seem to compute yet, and no he really could not care any less (in the moment) about other people's comfort, feelings, intentions, wants, needs, etc etc. He does definitely care after the fact, if he feels like he hurt someone or really caused a disturbance. I'm going to start a course with the kids "Teaching the Basics of TOM", as soon as the books arrive and we get really rolling with homeschool. Because I feel like for everyone's sake, we need to make some progress, even just a bit, on that this year.
[url]https://www.amazon.com/Teaching-Basics-Theory-Mind-Approximately/dp/1849057672/ref=sr_1_2?ie=UTF8&qid=1473781461&sr=8-2&keywords=teaching+theory+of+mind
[/url]

As for activities- sports were definitely a flop, which was expected but we tried anyway. He did well in a drawing class and in a yoga/story-telling class both of these with other autistic kids. He did well- but he also mostly did his own thing. Instead of drawing what they were "supposed" to, he would draw what he was into at the time, carnivorous plants. They were amazing drawings and he was sitting and "behaving well" amongst the other children, but not doing the group assigned tasks. It was kind of the same with the yoga/story-telling- he sort of got to do his own thing in a more positive leader-like role, because he was the best reader and he knew all the yoga poses because we do them at home. We haven't had any such success with anything else we have tried so far. He really does everything to the beat of his own drum.

Androbot, I see you are in Kingston. I went to Queen's for undergrad. Hated it. :lol:



ellemenope
Pileated woodpecker
Pileated woodpecker

User avatar

Joined: 12 Jun 2013
Age: 40
Gender: Female
Posts: 178

13 Sep 2016, 11:12 am

DataB4 wrote:
What would happen if you presented "real time" like a school assignment? I assume he understands the concept of schoolwork time, so could you use that? Even if you use the foreign language analogy, it'd be like saying, "foreign language time," and foreign language students translate between languages during that time.

Androbot01, I thought of that Star Trek episode also, because the concept of speaking only in shared metaphors/stories is similar. "When the wall fell" means nothing to us, for example.


He does definitely understand schoolwork time, most of the time anyway. I could just fit it in with our regular studies like I have done with everyone else we work on. With this, it's difficult to think of a way HOW though.

I have tried different social stories, and having him fill in speech bubbles and thought bubbles of simple cartoons etc. And yep, he can do these things moderately well. It's kind of like how he can act out a totally "normal" long conversation between his dinosaurs (no scripts, ordinary stuff "how's it going? what are you doing? let's do this" etc, but has never had a long two-way conversation like that with another person himself. I mean I know it's easy to have a conversation with yourself- you know what YOU are going to say, so I get that I guess. He can read a story and tell you what happened without using "fantasy" talk or scripts. It all doesn't come together for him in conversation with another person though...
Maybe because of anxiety at the time, just the stress/pressure of interacting with another person? Maybe he doesn't care enough about what other people are saying and he feels it's all irrelevant to the real stuff going on in his mind...?

I've turned this over and over in my head. Again, I welcome all your thoughts!