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Forum -> Parenting our children
"Autism is just a doctor's way of saying...
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aricelli




 
 
    
 

Post Sun, Feb 17 2019, 2:51 pm
Anyway southerbubby youre totally on the mark about diagnosing kids needlessly- I’m doing the appropriate therapies, am seeing nice results and couldnt care less about the chulent of alphabets he probably could possess... yes, I heard already- a lot of you disagree with this approach
Too bad!
Its working for us!
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amother
Silver


 

Post Sun, Feb 17 2019, 3:00 pm
Something else interesting. I flap my hands since I'm a kid when overcome with emotion. I spun and shaked a turned my head when I was younger. I'm not autistic. Glad no one ran to get me diagnosed.
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aricelli




 
 
    
 

Post Sun, Feb 17 2019, 3:03 pm
Amother silver-
Youre cute!
And so right
(I guess its when a persons quality of life is badly effected though that makes a dif)
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amother
Smokey


 

Post Sun, Feb 17 2019, 4:45 pm
Totally agree with you southernbubby. There is a big difference between children that can talk and children that can't and children that are toilet trained and children that are not.
My son is 11 and not toilet trained and cannot speak. He cannot make himself lunch or dress himself appropriately. Given a choice his preferred activities are spinning objects and wandering around in the yard.

He's a beautiful child and is able to ask for what he wants by pointing to words and we are starting to work on the letter board. But he is not going to ever get married, drive, hold a job, have a home of his own, have friends etc..

The fact that he has the same diagnosis as Bronze Amother is a joke. It simply means that the doctors do not know what they are doing in this area.

Over the years we have done everything the doctors and the Rabbis told us and we have seen very little change.

If you have found something that works good for you, otherwise we just have to keep loving, keep trying and keep praying.
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amother
Periwinkle


 

Post Sun, Feb 17 2019, 5:20 pm
I have autism and so do 2 of my children. It has definitely affected my life but to be honest what has been worse is the stigma and people thinking it is "#*#@# up," less than the challenges themselves. I have both strengths and weaknesses. Learning about my weaknesses has made it possible for me to adapt and work around them. When I just thought something was wrong with me and I needed to try harder it all just seemed futile because if I knew how to do that I would have done it already.

While it's tempting to say we should just split the condition it's actually very hard to do. Kids change a lot. One of mine was very delayed verbally. He learned to talk but you can still tell. He's super smart and works grades ahead in math but has a lot of rigidity and other issues. Especially with therapies, AAC, etc it's hard to classify children until they're much older. I had no idea when he was 3 what he'd be like later and I have no idea now what he will be like at 17.
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FranticFrummie




 
 
    
 

Post Sun, Feb 17 2019, 5:35 pm
Southernbubby, I'm going to rant and side track this conversation for a bit.

I do NOT like this new tendency to lump PPD/NOS, Asperger's, and Autism into one big spectrum diagnosis. I don't know if this was done to make insurance and hospital coding easier (or more profitable), if it was to get more kids out of special ed and into mainstream. I think they are trying to get more mainstream teachers to put in a few hours of training, instead of having to pay fully trained special ed teachers. The whole thing has gotten muddled up.

There needs to be some sort of grading system, other medical problems are graded. If a parent told me her child was HFA, a level 2 verbally, but a level 9 in math, I'd have a pretty good idea of the child I'd been dealing with. Scores can be given for social skills and other areas as well. That gives you a quick, accurate profile, kind of like a standard IQ test, but instead of focusing on problem solving, it would focus on potential, goals, and where to start looking for progress.

I also agree with the poster above me. Never lock a kid into a diagnosis or level. It's a tool for a snapshot, and it's not a crystal ball. Kids (and I mean all kids, NT or otherwise) are fluid and dynamic creatures. They should be evaluated and reevaluated at intervals through out the year.
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amother
Periwinkle


 

Post Sun, Feb 17 2019, 6:06 pm
They did it for a few reasons: the big one was that the divisions didn't work in practice. Too much of the focus was on early language development. A PDD-NOS child and an Asperger's child could wind up looking the same at 14, but one had language delay and the other didn't. Psychiatrists also thought Kanner's original criteria for autism were much too narrow. It made PDD-NOS in particular a real grab bag. It was very, very hard to get a diagnosis of autism. Some of the most hard to support kids I know were officially PDD-NOS. There was also athe problem where some states and insurers only covered autism, not PDD or AS, and a child with one of the other diagnoses might still have significant needs.

It's not a tendency, it's official in DSM-V. kids are now classified within ASD by level of support needed. But the problem is really that we need multiple axes. While harder to manage behaviors are more common in kids with lower verbal ability and higher support needs, I've met kids with very hard to control behaviors or sensory needs who were verbal.

It's possible that in the future we will see the diagnosis split again but right now we don't have a valid way to do it. It's easy to see the extremes, but a lot of kids don't fit at either end.
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amother
Jetblack


 

Post Sun, Feb 17 2019, 9:51 pm
For anyone reading his thread that has a kid who's nonverbal or low verbal, please look into getting a good AAC eval from a speech therapist who specializes in AAC. There are so many options nowadays for speech-generating devices. Of course, handing someone a magic talking box isn't going to solve the problem. They're going to need good speech therapy to teach them interaction skills, play skills, language skills, and communication skills. It's a lot of work. But as someone who specializes in AAC, I see amazing things happen all the time!
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amother
Pumpkin


 

Post Mon, Feb 18 2019, 9:38 am
I somewhat agree & somewhat disagree.
the reason why I disagree is because there are times that people just are not smart in other things but the doctor won't necessarily give them the diagnosis of autism.
I do agree because what I do see on my students IEPs is that a lot of times, the child has several issues and they can't pinpoint to the correct issue so the write autistic so the child will get Services faster but not necessarily is the child actually autistic.
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ora_43




 
 
    
 

Post Mon, Feb 18 2019, 12:49 pm
amother wrote:
Something else interesting. I flap my hands since I'm a kid when overcome with emotion. I spun and shaked a turned my head when I was younger. I'm not autistic. Glad no one ran to get me diagnosed.

You do realize that if someone had ran to get you diagnosed, you would never have been diagnosed based on those two things alone?

I mean, I get that it's not an exact science, but come on, doctors aren't just throwing darts at a diagnosis chart, here. Hand flapping is one of several dozen possible symptoms. You don't get an ASD diagnoses without having many of the symptoms.
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amother
Wine


 

Post Mon, Feb 18 2019, 1:55 pm
southernbubby wrote:
There are people who are truly disabled but can talk, express emotions, and take care of their own hygiene but even though they are incapable of doing what others can do, why do we apply a label that is used to describe people like my grandson? A person who is toilet trained and able to speak is not even close to what is going on with my grandson so why do we apply the same label?

Cerebral palsy can be mild, moderate or severe but the term autism has been expanded to include people who are quite personable, friendly, and enjoyable to be around.


It’s as you say, many different diseases and disorders can express as mild or severe. But they still meet disease criteria when mild. Sorry about your grandson I’m sure it’s very hard.
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imorethanamother




 
 
    
 

Post Mon, Feb 18 2019, 2:23 pm
daagahminayin wrote:
Southernbubby, if you are willing, can you share with us one of the times you got a tiny glimpse?


I have a son with severe autism. We had him in a full day ABA program by the age of two, along with speech therapy and occupational therapy. When his 9 hour day was finished, we would add more on top of that. He got gymnastics and music and art and yoga and literally everything we could throw at him. We davened and went to gedolim and took on chumrahs, etc. None of it really changed him in any way. He's made strides, sure, but teeny tiny ones. His future looks pretty bleak.

It is what it is. Some gedolim were matter of fact about it, and we were so sensitive at the time that their responses were very painful. Others cried with us, and one even gave us a book that he wrote about these children.

I don't believe that these autistic children are "tzadikim" - I don't think it works like that. I think that bechirah and hard work is what makes you a tzadik. These children are without sin, but not tzadikim. I also resist the attempt to make these children into prophets of some kind. They're not talking to angels or the like. I remember telling one gadol that if we are defined as human and as tzelem Elokim by the fact that we can talk, then what is he? It sparked an interesting discussion about what it means to have a neshama, and where is it, and if he has one, etc. I won't get into it here. But I was left with this feeling that his yiddishkeit was something to be taken for granted - no one seemed to care if it existed or not.

He then turned 13, and we brought him to Israel for his bar mitzvah. Against my wishes, really, he was given an aliyah. It was a debate whether he was able to get one in the first place (one compared it to a woman getting an aliyah).

But there it was. It was like something had come over him, and he was present in the moment. He was alert. He wasn't flapping his hands in front of his face and making funny sounds and wandering off in his own world. He had this incredible smile on his face. He said the bracha (okay, it was a bit mangled), and I will never ever ever forget how he looked. He looked at all of us, in turn. He hugged us. And he looked directly into the sefer Torah and smiled.

So daagahminayin, there's your answer. That's the glimpse we sometimes get, seeing that there's a soul in there.
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keym




 
 
    
 

Post Mon, Feb 18 2019, 3:11 pm
imorethanamother wrote:
I have a son with severe autism. We had him in a full day ABA program by the age of two, along with speech therapy and occupational therapy. When his 9 hour day was finished, we would add more on top of that. He got gymnastics and music and art and yoga and literally everything we could throw at him. We davened and went to gedolim and took on chumrahs, etc. None of it really changed him in any way. He's made strides, sure, but teeny tiny ones. His future looks pretty bleak.

It is what it is. Some gedolim were matter of fact about it, and we were so sensitive at the time that their responses were very painful. Others cried with us, and one even gave us a book that he wrote about these children.

I don't believe that these autistic children are "tzadikim" - I don't think it works like that. I think that bechirah and hard work is what makes you a tzadik. These children are without sin, but not tzadikim. I also resist the attempt to make these children into prophets of some kind. They're not talking to angels or the like. I remember telling one gadol that if we are defined as human and as tzelem Elokim by the fact that we can talk, then what is he? It sparked an interesting discussion about what it means to have a neshama, and where is it, and if he has one, etc. I won't get into it here. But I was left with this feeling that his yiddishkeit was something to be taken for granted - no one seemed to care if it existed or not.

He then turned 13, and we brought him to Israel for his bar mitzvah. Against my wishes, really, he was given an aliyah. It was a debate whether he was able to get one in the first place (one compared it to a woman getting an aliyah).

But there it was. It was like something had come over him, and he was present in the moment. He was alert. He wasn't flapping his hands in front of his face and making funny sounds and wandering off in his own world. He had this incredible smile on his face. He said the bracha (okay, it was a bit mangled), and I will never ever ever forget how he looked. He looked at all of us, in turn. He hugged us. And he looked directly into the sefer Torah and smiled.

So daagahminayin, there's your answer. That's the glimpse we sometimes get, seeing that there's a soul in there.


That was me hugging you for real.
I wish you only nachas and koach in raising and continuing to raise your son.
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southernbubby




 
 
    
 

Post Mon, Feb 18 2019, 3:48 pm
amother wrote:
It’s as you say, many different diseases and disorders can express as mild or severe. But they still meet disease criteria when mild. Sorry about your grandson I’m sure it’s very hard.


Well I would think that the levels of severity would at least have more in common.
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amother
Wine


 

Post Mon, Feb 18 2019, 4:42 pm
southernbubby wrote:
Well I would think that the levels of severity would at least have more in common.


What do you mean?
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amother
Linen


 

Post Mon, Feb 18 2019, 4:50 pm
amother wrote:
What do you mean?


This is op. I think she means, and I agree, that labling a person who cannot speak, is not toilet trained, and needs a carer with them for all of their waking hours and a nerdy scientist who only ever talks about chemical valencies and who has a great difficulty sustaining relationships and is irritated by fluorescent lights with the same label - autism - is pretty silly.
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southernbubby




 
 
    
 

Post Mon, Feb 18 2019, 5:03 pm
amother wrote:
This is op. I think she means, and I agree, that labling a person who cannot speak, is not toilet trained, and needs a carer with them for all of their waking hours and a nerdy scientist who only ever talks about chemical valencies and who has a great difficulty sustaining relationships and is irritated by fluorescent lights with the same label - autism - is pretty silly.


You said it better than I could.
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aricelli




 
 
    
 

Post Mon, Feb 18 2019, 5:16 pm
Southernbubby and OP, so right- however since we are all lumped together, when we saw your title we thought you were referring to our children as well! And thats why so many of us with varying degrees of “so called” autism responded- we had no way of knowing what you meant, I’m sorry if I inadvertantly hurt you in any way by responding
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aricelli




 
 
    
 

Post Mon, Feb 18 2019, 5:36 pm
Also, keep in mind: though I’m not equating our childrens difficulties with yours in no way and in any way- remember- our childrens struggles are real
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imorethanamother




 
 
    
 

Post Mon, Feb 18 2019, 5:43 pm
keym wrote:
That was me hugging you for real.
I wish you only nachas and koach in raising and continuing to raise your son.


Thanks! I know my post sounded otherwise, but my son is actually my biggest blessing in life! I love him and I'm so happy to have him, and that he's mine.
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