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cvam
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23 Nov 2017, 1:01 am

Hello all parents,

I have a 12 year old boy with ASD-aspergers. he is also very fidgety and as a 6 year old was diagnosed with ADD. Our pediatrician also noticed a heart murmur and labelled it benign, but we chose not to put him on ritalin due to the mumur. we are not ready yet to do strattera.

Our boy has difficulty with fine motor skills like cutting{jagged cutting with scissors}, handwriting {illegible scrawls when hurried} and other fine motor skills. he maybe at a 5year old's level there. his dining skills are poor and he is not very comfortable making polite conversations with people he doesn't know too well..

He also has difficulty with empathy. if he spills something, he looks around to see if anyone noticed/will say anything.. if they don't, he pretends it never happened and does not clean up. He rarely offers to help, expects others to find his stuff for him, doesn't mind too much if others comb his hair or tie his laces and if his mom or I help him with his school project, sits around and watches tv while we go about doing his work. Obviously, such a lack of engagement or empathy won't work for him in the real world outside.

He grumbles loudly and angrily while doing his physical therapy exercises to help with the tight gastroc, due to years of tippy toe walking, to the point that I lose my cool.

I need to keep him plugging away on his fine motor skills and physical therapy. I try and emphasize the importance of empathy in society, even though I realize won't come naturally to him. I am not shooting for normal, but just enough skills to get by in society.

We have not yet told him about his diagnosis, since we believe that knowing the diagnosis will make him less interested in developing skills, since he will have an excuse as to why he isn't good at it/shouldn't work towards being better.

I need help with how best to deal with his verbalizations.. mainly angry words on being made to do stuff he doesn't like. he loves to play out transformers and Thor enactments and we fear that he might get injured at times. This leads me to use harsh words like stupid/moronic/idiotic or foolish to characterize his actions, which is awful because I know why he does what he does. sometimes he gets stuck on an item like say Marker pens. He has dozens of coloring instruments and he will demand that I go searching for a brand/type he wants. At times like these, I say things like I don't care about what his project team says if he doesn't get that brand of color pen. He looks deflated and that saddens me further.

What I need is a way to help him make progress in the areas that he is lacking, without taking the bait when he lashes out. What is the best way to get an aspie to do something he doesn't want to do, failing which, how do other parents of aspies maintain their cool when their aspie kids lashes out angrily at them while they get them to do something they don't like..I am very worried that my daily comments on what he needs to do better or what changes he needs to make are making him depressed...I can't let him be and not try and help and when I make him do tasks, I invariably get sucked in into responding to his angry outbursts after a while, which is emotionally detrimental to him.

thanks



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23 Nov 2017, 2:16 am

Ok well if he is getting all kinds of assistance and therapy and such, yet you keep the diagnoses from him, he is going to be confused about it and even angry. He needs to understand he could need help with things for this to be effective. Otherwise he'll just wonder why he gets all this treatment and therapy sessions when other kids his age don't go through that. So he gets all kinds of special help but doesn't even know he has a diagnoses of anything, that would freak any kid out. It would probably help him to know....


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23 Nov 2017, 2:22 am

Ok well if he is getting all kinds of assistance and therapy and such, yet you keep the diagnoses from him, he is going to be confused about it and even angry. He needs to understand he could need help with things for this to be effective. Otherwise he'll just wonder why he gets all this treatment and therapy sessions when other kids his age don't go through that. So he gets all kinds of special help but doesn't even know he has a diagnoses of anything, that would freak any kid out. It would probably help him to know....

Also I remember one time I was riding my bike in the drive-way and my grandpa pulled out, no one had told me anyone was driving and we could usually ride our bikes there. Anyways my mom calls me 'idiot' and I was pretty upset about it for a while...like no one told me anyone was pulling out and it was an accident, but she screamed 'get out of the way, idiot' and than called me that again. Eventually she said she was sorry but at the time I really took it to heart, so even if you don't mean it saying something like that to your kid is going to cause quite a bit of distress. I mean now I can look back at things my parents said that where in the heat of the moment or whatever and realize it wasn't meant litterraly...but a lot of times as a kid I took it entirely litterally and ended up feeling like I was some peice of s**t person.


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23 Nov 2017, 2:42 am

Big issues but I would just like to add that gastroc spasticity hurts! I'm not kidding. I have personal experience. You may feel he is not cooperating but I hated people hurting me and they would all act like I was being difficult. Please try to keep in mind that he probably doesn't have the words to express himself.


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23 Nov 2017, 8:50 am

cvam wrote:
... not very comfortable making polite conversations with people he doesn't know too well..

... He also has difficulty with empathy.... Obviously, such a lack of engagement or empathy won't work for him in the real world outside.

... He grumbles loudly and angrily while doing his physical therapy exercises...

... I need to keep him plugging away on his fine motor skills and physical therapy. I try and emphasize the importance of empathy in society...

... I need help with how best to deal with his verbalizations..

... What I need is a way to help him make progress in the areas that he is lacking...

I've highlighted the keywords that get on my nerves. Your case is a prime example why autistic children's lives get ruined in our society. We start by thinking these kids are defective, and so we try to fix them, make them better. In the process, they actually turn out worse. We then panic, and turn the knob one notch higher. We repeat this process ad nauseam. And then we end up with comatose autistic adults. Most of them can barely hold low-level jobs, if any. Most of them end up with psychological damage, with little or no self-esteem.

Have you ever paused to consider that your son might actually be perfectly fine the way he is, and that all the therapies you have been doing, out of love, are actually hurting him and making him worse? By chasing after all those therapies, have you paused to think that you have actually neglected to do the most important thing: to DEVELOP him as an equal-rights human being?

Have you ever paused to think that, perhaps, it is not your son who is defective, but it is actually our society the one that is defective?

Did you know that

1 + 2 + 3 + 4 + ... = -1/12 (negative one twelfth)

? If you think that the sum of positive integers must always be another positive integer, you will of course never arrive at this identity. Nope, it's not a joke. Google for "1 + 2 + 3 + 4 + ... = -1/12 infinite sum" and see for yourself. My point is, what you think is obvious, can actually be wrong. Autistic children are not neurotypical children. You have to learn to accept that your intuition may be wrong.

Quote:
... I am very worried that my daily comments on what he needs to do better or what changes he needs to make are making him depressed... I can't let him be and not try and help and when I make him do tasks, I invariably get sucked in into responding to his angry outbursts after a while, which is emotionally detrimental to him.

At least you realize that that might be a possibility.

Take a look at the thread
http://wrongplanet.net/forums/viewtopic.php?t=356708

Particularly, read this article
http://www.eikonabridge.com/fun_and_facts.pdf

Happy Thanksgiving!


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23 Nov 2017, 10:54 pm

Sweetleaf wrote:
Ok well if he is getting all kinds of assistance and therapy and such, yet you keep the diagnoses from him, he is going to be confused about it and even angry. He needs to understand he could need help with things for this to be effective. Otherwise he'll just wonder why he gets all this treatment and therapy sessions when other kids his age don't go through that. So he gets all kinds of special help but doesn't even know he has a diagnoses of anything, that would freak any kid out. It would probably help him to know....
I think that's exactly what happened with my therapy stints. I was, pretty much, told to "sit and talk" with someone who seemed like a blithering idiot, at least when it came to understanding me. She'd grill me about my feelings, accuse me of lying when I answered her, and tried to make me cry, all in an effort to "get me in touch with my feelings". To add insult to the injury, I had to put on a happy face when my parents picked me afterwards, so they wouldn't ask questions. In the end, the therapy degraded into a battle of wits. She'd do what I described, while I either lied to her face, only to have her believe me, or fabricated problems that didn't exist, and watched her fall over herself to help me with them.



karathraceandherspecialdestiny
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23 Nov 2017, 11:55 pm

Keeping his diagnosis from him, information about himself he absolutely deserves to have and needs to have to be able to understand himself, seems highly unethical to me.

As someone who wasn't diagnosed until adulthood, I can hardly imagine how my life might have been different if I had that kind of information about myself when I was younger, how much suffering I might have been saved just by being able to understand myself and how I was different. You are doing him a great disservice by keeping this from him.



cvam
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24 Nov 2017, 3:37 am

The idea is not to keep the diagnosis from him forever, just like you don't discuss the birds and bees with an 8 year old NT kid, you don't want to burden the kid with a diagnosis that doesn't really have a cure. No one likes to think of themselves as different, there are some on the spectrum who want to be a part of social groups, just like some of them might want to be left alone with their interests.

If I were to venture a guess, my 12 year old has the emotional maturity of a 8 - 9 year old. I want to talk to him about this when I feel he has the ability to disassociate the diagnosis from how he feels about it.



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24 Nov 2017, 3:54 am

Quote:
just like you don't discuss the birds and bees with an 8 year old NT kid,


really? they talk genderchanges these days!



cvam
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24 Nov 2017, 3:56 am

Again, I am not trying to fix/convert my aspie into NT. I know that he will always lack in empathy, dexterity, volume modulation and other physical skills. I want him to be the best he can and pursue his interests like science etc without his quirks hampering him too much.

trust me, there are a lot of things NTs want to do but will not do, even if it causes us discomfort. we learn what not do do by practice and observation of our surroundings. 80% of our day is routine, stuff that some aspies can learn to do, albeit with more effort and time.

If his quirks get in the way of his dreams, is it my job as a parent who has the diagnosis to:

1> Not get in the way of his quirks, because I know it helps him better deal with all the environmental stimulus.

2> Try and lessen the obviousness of his quirks so that he can achieve what he aspires to do, aspirations that he voices very openly and vocally.

as an NT, I see myself doing option 2, which is hard on both of us. since there is dearth of data and since the spectrum is so broad, I am not sure that option 1, even if recommended by other adult aspies, is the way to go..

I'd love to hear from high functioning aspie adults and parents of high functioning aspies as to what works best for my concerns:

leave him be and let him figure stuff out

offer 1 -2 hours per day therapy to help him deal better with the world around him.



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24 Nov 2017, 4:09 am

cvam wrote:
The idea is not to keep the diagnosis from him forever, just like you don't discuss the birds and bees with an 8 year old NT kid, you don't want to burden the kid with a diagnosis that doesn't really have a cure. No one likes to think of themselves as different, there are some on the spectrum who want to be a part of social groups, just like some of them might want to be left alone with their interests.

If I were to venture a guess, my 12 year old has the emotional maturity of a 8 - 9 year old. I want to talk to him about this when I feel he has the ability to disassociate the diagnosis from how he feels about it.


You can trust that he already knows that he's different. I did at his age, I just didn't understand how. If I'd had a chance to understand HOW I was different I think it would have saved me a lot of suffering.

The way you talk about him lacking empathy makes me wonder if you have some incorrect ideas about autism. Do you know about the difference between cognitive empathy and emotional empathy?

https://www.mpib-berlin.mpg.de/en/resea ... h-asperger

https://www.huffingtonpost.com/liane-ku ... 81691.html

I hope these help.



cvam
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24 Nov 2017, 4:35 am

Deinonychus, you are right, he does lack cognitive empathy a bit. he cannot "get" impatience, disappointment, annoyance or frustration in others. If he sees a child fall down, he will go and help.. sometimes.. he makes up his mind whether to help based on whether he thinks someone got significantly hurt or if it was a routine spill and tumble. he also restricts help to those who he considers unworthy.. for example, a class bully lost a family member recently.. while the rest of his class showed some empathy towards the bully, he didn't, because he felt the bully was not worth it and the bully's past actions did not get over shadowed by his current misfortune.

My advice to him is to mimic the crowd.. but then the central issue always has been that he is oblivious of the people around him. Volume of his voice, sneaking a spit ball *while the teacher is NOT looking* , etc etc are not things he gets.. it requires him to think rather than rely on instinct



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24 Nov 2017, 5:00 am

cvam wrote:
(...) he is not very comfortable making polite conversations with people he doesn't know too well..
Just like a lot of adults I know :D

cvam wrote:
He also has difficulty with empathy. if he spills something, he looks around to see if anyone noticed/will say anything.. if they don't, he pretends it never happened and does not clean up. He rarely offers to help, expects others to find his stuff for him, doesn't mind too much if others comb his hair or tie his laces and if his mom or I help him with his school project, sits around and watches tv while we go about doing his work. Obviously, such a lack of engagement or empathy won't work for him in the real world outside.
Interesting that you put it as an "empathy" issue. So it is empathy that you realise what others expect you to do?
Tell him. Every time you want him to do something just tell him. If you want him to do something regularily, make a rule and don't make exceptions.
What would happen if he didn't finish his school project? If his hair is not combed? If his things are not found? It should be his concern, not yours. You can simply refuse to do such things for him, leaving them not done.

cvam wrote:
He grumbles loudly and angrily while doing his physical therapy exercises to help with the tight gastroc, due to years of tippy toe walking, to the point that I lose my cool.
It hurts him. Show some empathy :twisted:

cvam wrote:
My advice to him is to mimic the crowd..
But why? Why can't he rely on his own feeling of right and wrong? He will always suck at mimicking the crowd because he doesn't get the "obvious" cues and crowd thinking. But this way he can be the only sane person in an insane crowd! Even if it's a hard piece, it is worth it, the humanity needs him that way!

On the other hand: Could you please tell us something about his strengths? It's good to build on one's strengths. When you are excellent at something, others are more willing to accept your quirks.


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24 Nov 2017, 7:22 am

magz wrote:
On the other hand: Could you please tell us something about his strengths? It's good to build on one's strengths. When you are excellent at something, others are more willing to accept your quirks.

That's the whole point.

The failure of our society to develop autistic children is we invert the causality. We think autistic children need empathy for them to develop. Nope. It's exactly the opposite.

We see autistic children lacking empathy, we scramble to teach them empathy.

Don't people see that that's the wrong route to go? Why is it wrong? Because you are already assuming that your children are defective. You are assuming that you know what's best for them. That is incredibly patronizing and preposterous.

Same thing with every single one of our failures to raise autistic children. From eye contact to ADHD to verbal to social skills.

Autistic children don't develop that way. Yet we persist in using neurotypical approach to raise autistic children.

I mean, after these 74 years of child autism, you'd think people would wake up. But nope. No matter how much you tell those parents and "experts" out there, they cannot switch their mindset off the neurotypical approach. I mean, one family fails after another, one child's life is ruined after another. Yet, they insist on using the same approach. Parents always think that if only they try harder than other parents, they will succeed.

Comical. Very comical.

- - - - -

There is another way. The starting point is by assuming that these children are perfectly fine the way they are. And indeed they are problem free. The only problem they have is: they are CHILDREN. That's the only "defect" they have. It's perfectly legitimate for CHILDREN to be CHILDREN.

And I am not the only person that says that. See "Uniquely Human: A Different Way of Seeing Autism" by Dr. Barry M. Prizant.

"Autism isn't an illness. It's a different way of being human. Children with autism aren't sick; they are progressing through developmental stages as we all do. To help them, we don't need to change or fix them. We need to work to understand them, and then change what we do."

Here are his credentials: Tenured Professor of Communication Disorders at Southern Illinois University and Emerson College, Boston. Founder and Director of the Communication Disorders Department at Bradley Hospital, with an Associate Professor Appointment in Child and Adolescent Psychiatry in the Brown University Program in Medicine, and was an Advanced Post-Doctoral Fellow in Early Intervention at UNC-Chapel Hill.

Isn't it funny that he says exactly the same thing I say? How come, for someone that has worked 40 years in the field, they would arrive exactly at the very same thing that I say?

- - - - -

Neurotypical children develop based on the "push" model: you push what you want them to learn to them.

Autistic children develop based on the "pull" model: you pull them from their interests and expand their brain from there.

Why do people worry about (a) hyperactivity, (b) eye contact, (c) verbal skills, (d) social skills (e.g. empathy), when you know that autistic children will all get there, on their own, without help, without intervention, as long as they are properly developed, based on the "pull" model?

That is even true for "fine motor skills" and "gross motor skills." Autistic children don't need any of those therapies.

Instead, parents (and teacher) should follow the interests of these children, and expand from there.

As I always tell people: my son learned all the skills he'll ever need to learn in life, from elevators. These include: talking, drawing, writing, typing, playing with building block toys, art craft with scissors, paper, tapes, and coloring, math, assembling electronic circuits, computer programming, initiating conversation with strangers, and even writing some Chinese characters. You want fine motor skills, there is plenty there. You want gross motor skills? I used to take him to shopping malls and we'd ride on 20+ elevators across the mall. We'd spend 2 to 3 hours covering the whole mall, including all the parking garages. I still take him to elevator rides now and then.

(The first picture my son ever drew was an elevator. The first word he ever wrote or typed was... yeap, elevator.)

Lately my son is into reading Captain Underpants. Guess what? That's what our babysitter is doing with him now. They'd draw comic books together, develop the story line, write down the conversation / speech bubbles. My son would add some "flip-o-ramas" to the comic books.

When my son ran to me one day at school dismissal waving his yellow homework folder and told me about his "raining homework" (inspired from the "Raining Tacos" song), I made his homework folder into a taco, full with meat, lettuce and cheese. I contacted the teacher. My son got to show his "raining homework" folder in the classroom. I asked him what other students said, and my son just smiled and told me: "They said it was insane!" Why would I let go an opportunity for my son to showcase his creative thinking, in public?

Image

- - - - -

If you start by assuming that your children are defective, you block your mind and can only think on how to "fix", "change", "treat", "cure" your children. While you are doing all that, you forget the most important thing: you forget to DEVELOP your children.

On the other hand, if you assume that your children are perfectly fine the way they are, you'd get excited about everything they do. You'd follow their interests. You do activities together with them. And guess what? Their brains get to DEVELOP and expand into other areas.

- - - - -

Autistic children are perfectly fine the way they are. They are not defective.

- - - - -

It's a competitive world out there.


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24 Nov 2017, 10:17 am

I am going to make some observations which maybe will be helpful and maybe won't be.

Everything has to be targeted for your unique child -- even within the high functioning classification, this is not providing as much info as it may seem because there really is a range of differences.

If I had had a diagnosis as a kid, I would definitely have not liked dealing with therapies or any of that junk. The information would have been useful to me at some juncture -- but I probably would have gone through points of rebellion against it and denial and resentment. That said -- the information would have been useful to me, as I knew I was not like other kids -- and I think as long as I were not told I could not do things because of it that other kids could do and my parents did not annoy me with it -- I think it would have been OK. That said -- I am an adult who still has no formal diagnosis, and I can pass as just odd.

My son, on the other hand has legitimately no clue that he is different and would not care b/c he has no social interest in other kids anyway. (Presumably he was not paying enough attention to what they do to know that what they do is different) Most of the kids had pulls out of class for something and he really did not have any curiosity what other kids' pulls were for, if they were different than his, or about why some kids had no pulls. I also have unsupportive in-laws who think neurological classifications are BS and everything can be beat out of you. So I use a lot of non-label talk about how everyone is different and here were his specific strengths and weaknesses and other people have theirs and it is no big deal. My husband and I talk about autism and don't actively hide it but we don't talk about it specifically to him, very much. Every once in awhile I attempt a talk but he really does not care. I see what you are saying about not wanting him to feel bad about something he does not notice -- but you have to kind of know this is for sure true for it to be valid. Most kids probably know.

As far as trying to get your kid to fake empathy for kids who he does not deem worthy of it -- and telling him as a blanket rule to try to do what the other kids do -- I do not think I am NT enough to understand why one would do this. I actually agree with him about the bully.

I understand why it would not "look nice" to show schadenfreude or glee at the bully's misfortune, I don't know why he should have to fake caring about someone who is mean. I think as long as you don't call attention to yourself in whatever you are doing and maybe just look neutral, that probably would suffice.

(Off topic slightly but b/c you mentioned it: My parents talked to me about sex when I was 3 or so when I was going to have a younger sibling and really, there is no reason you can't. My son doesn't care too much about this subject to be honest other than the science part. I think we had most of the talk when when he was 7 or so and mostly he liked the part about DNA. it is actually better to get a lot of this out of the way early IMO before it gets too late--although of course this is an ongoing talk as your child matures.)



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24 Nov 2017, 10:35 am

I forgot to address the part about worrying about using autism as an excuse not to try. This is valid concern as kids with autism tend to be binary and also very prone to frustration intolerance so many (not all ) may think to themselves if they are not wired to do a particular thing, it is too hard and that it is not worth the extra effort to try. They will put way more effort into things they are good at. This is actually a very rational thing because they are looking at the marginal returns per a marginal unit of effort and making the correct decision on that basis.

So, if your child is doing that and capable of understanding a variation of the explanation above that describes what they are doing, that means you can attack the issue with them rationally, which is often the best strategy with autistic skills. If you explain the notion that you need a minimum skill level in these other things, regardless of the inefficiency of attaining these levels, to be a successful adult, it might make more sense. That said, I would make sure I only would say that about skills that truly are necessary to be an adult. There may be things you find yourself wanting him to be able to do, because you think it would make his life more social or fun that actually are not necessary for adults to know how to do. Don't use this argument for those things. Those are things that you present as what they are: social choices that effect the present, and let him make the choice to do or not do.