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RE: Kids w/ Classic Autism, PDD-NOS & Speech Delays

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claudia
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07 May 2011, 11:05 am

cyberdad wrote:
Just wondering? 99% of the posting is about Aspergers related matters. Would other parents be interested as speech therapy and speech delay is a big issue for us.

Why not?
I'm interested in speech delay issues mainly, but I also found interesting to know about other spectrum related issues, because they seem to be the complemetary issues related to my son's ones. I'm referring to sensory overloads, meltdowns, self harming and so on. I would say that my boy is autistic because he has language issues and sometimes he stims and he is a picky eater and he doesn't do imaginative play. Autism is a spectrum because each individual has some traits and not other traits and it's not easy to separate AS from Autism issues.



Caitlin
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07 May 2011, 11:47 am

cyberdad wrote:
Caitlin wrote:
With all due respect to the concepts and needs being discussed, I hope that no changes are made to WP in terms of their Asperger focus. There are lots of online forums for parents of kids on the spectrum, but very few that are tailored to Aspies and their parents. I cannot go into a forum where discussions are being had regarding classic autism, and find people who "get" what I'm talking about the way I can here. We all need a space. This is the one for Aspergers. Others are welcome, but I really hope WP never loses its Asperger focus.


You are basing this entire focus on AS on the basis of a research paper written by a Hans Asperger in 1944.


Cyberdad your response is hurtful. It is precisely the type of response I used to get on generalized autism forums when I tried to talk about my son with AS. No one here is going to question the dx of a child with pdd-nos or classic autism, so why would you turn around and question the validity of my son's dx? This is not the way to create a supportive forum, and your words only serve to reinforce my point about the need for WP to maintain its AS focus for families like mine, so we don't have to waste our energies defending the labels our children have.


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07 May 2011, 12:29 pm

claudia wrote:
cyberdad wrote:
Just wondering? 99% of the posting is about Aspergers related matters. Would other parents be interested as speech therapy and speech delay is a big issue for us.

Why not?
I'm interested in speech delay issues mainly, but I also found interesting to know about other spectrum related issues, because they seem to be the complemetary issues related to my son's ones. I'm referring to sensory overloads, meltdowns, self harming and so on. I would say that my boy is autistic because he has language issues and sometimes he stims and he is a picky eater and he doesn't do imaginative play. Autism is a spectrum because each individual has some traits and not other traits and it's not easy to separate AS from Autism issues.


I spend a good bit of time over at the general Autism section, because I know that a lot of the sensory issues tend to be interchangeable no matter where you are on the spectrum. I figure what better place to get solid answers, than from an adult who has AS and has probably experienced those sensory issues. I don't think a lot of NT parents fully understand why their kids do what they do, it seems like we're all sort of just groping around in the dark sometimes. It often feels like I'm trying to learn an unspoken language, if that makes any sense... :?



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07 May 2011, 12:36 pm

Caitlin wrote:
cyberdad wrote:
Caitlin wrote:
With all due respect to the concepts and needs being discussed, I hope that no changes are made to WP in terms of their Asperger focus. There are lots of online forums for parents of kids on the spectrum, but very few that are tailored to Aspies and their parents. I cannot go into a forum where discussions are being had regarding classic autism, and find people who "get" what I'm talking about the way I can here. We all need a space. This is the one for Aspergers. Others are welcome, but I really hope WP never loses its Asperger focus.


You are basing this entire focus on AS on the basis of a research paper written by a Hans Asperger in 1944.


Cyberdad your response is hurtful. It is precisely the type of response I used to get on generalized autism forums when I tried to talk about my son with AS. No one here is going to question the dx of a child with pdd-nos or classic autism, so why would you turn around and question the validity of my son's dx? This is not the way to create a supportive forum, and your words only serve to reinforce my point about the need for WP to maintain its AS focus for families like mine, so we don't have to waste our energies defending the labels our children have.


Caitlin, I thought your first response was hurtful when you said "... we all need a space. This is the one for Asperger's. Others are welcome ..." because it implies that we're the "others" and that we don't belong here. I didn't like being called an "other" when we belong here just as much. But then you said you empathized with what I was saying and "understood the desire to stake out a thread or spot for discussions of other types of autism." So I figured you just used a poor choice of words to convey your meaning and accept it as a misunderstanding (as long as you didn't mean for us to stake out our place outside of WP). WP is predominantly Aspergian, you don't need to worry about it losing it's AS focus and I don't think because Asperger's Syndrome no longer officially exits as a diagnosis that HFA's who relate to it will stop using the word to describe themselves, not for a while anyway.



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07 May 2011, 1:01 pm

Yeah, it kind of seemed like...'Well this place is for Aspies, and you guys really don't belong here, but we'll let you hang out." :lol: Aspies FAR outnumber the rest of the spectrum, so I agree that WP isn't in any danger of losing it's main audience on account of a few parents with more heavily effected children.



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07 May 2011, 1:17 pm

Bauhauswife wrote:
claudia wrote:
cyberdad wrote:
Just wondering? 99% of the posting is about Aspergers related matters. Would other parents be interested as speech therapy and speech delay is a big issue for us.

Why not?
I'm interested in speech delay issues mainly, but I also found interesting to know about other spectrum related issues, because they seem to be the complemetary issues related to my son's ones. I'm referring to sensory overloads, meltdowns, self harming and so on. I would say that my boy is autistic because he has language issues and sometimes he stims and he is a picky eater and he doesn't do imaginative play. Autism is a spectrum because each individual has some traits and not other traits and it's not easy to separate AS from Autism issues.


I spend a good bit of time over at the general Autism section, because I know that a lot of the sensory issues tend to be interchangeable no matter where you are on the spectrum. I figure what better place to get solid answers, than from an adult who has AS and has probably experienced those sensory issues. I don't think a lot of NT parents fully understand why their kids do what they do, it seems like we're all sort of just groping around in the dark sometimes. It often feels like I'm trying to learn an unspoken language, if that makes any sense... :?


It makes sense. I'm fortunate that I understand a lot of what my son does on a personal level, because of it I'm the one who first realized my son was autistic in spite of everyone else telling me I was wrong that I couldn't know such a thing and that my child was perfect. I'd still have been able to realize it and have been able to get help even sooner though if the pediatrician had taken my earliest concerns seriously (I did not know the earliest red flags for autism but he had several and I did report them to pediatrician only to have her regard me as some sort of hypochondriac, it was only when I saw him spinning and flapping for the first time the light went on and everything else made sense. We took him back to the pediatrician and I told them he was autistic, they still didn't believe me because they didn't think I could possibly know such a thing or that they could miss something so obvious ... then they actually opened their eyes 8O I'd have also been aware much sooner if my own AS had been acknowledged and I'd been informed that I was at greater risk for having an autistic child). But I still have questions about how to make his life the best it can be that my experience or anyone else's who's only experience with autism is AS would have trouble answering.



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07 May 2011, 1:18 pm

Washi wrote:
psychohist wrote:
I guess I don't see why people can't discuss kids with low functioning autism right here?

My child isn't considered low functioning, nevertheless the problem I've been encountering is when a parent of a child who doesn't have Asperger's makes a thread for support they get a whole lot of irrelevant advice centered around Asperger's syndrome and the threads get railroaded spurring on more non-applicable commenting. And it feels rude to ignore people and it gets really depressing and aggravating to have to keep explaining to people that you're child can't talk, or is still in diapers or whatever the case may be over and over again even if it was already stated in the original post or elsewhere in the thread.

That's a valid complaint. I did notice a recent thread where the child was PDD-NOS rather than aspie and everyone was assuming the child had Asperger and making their comments accordingly. Whenever she would point out that her child wasn't aspie people would just ignore her; I chalked that up to the fact to people ignoring her because she was aspie even though her child was not, but perhaps you're right and people would have been ignoring that anyway.

When I notice anything similar in the future, I'll try to point it out.

Edit: while I don't have an objection to a separate thread, I don't think it's a very good solution. Once you get more than one discussion in a thread, it becomes much more difficult to keep things straight.



Caitlin
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07 May 2011, 1:28 pm

I apologize for not being careful enough with my language - it's a touchy subject, and difficult to discuss without offending someone. Again, what I was responding to was the tone in that specific post about changing the banner, which to me had strong messaging that it was time to erase the line everywhere - including here at WP. I read that as a call to erase the AS focus from WP.

I personally need that line here. That line between Aspergers and other forms of autism. I need it to find support and resources that are useful for my son.

I think I am the flipside, as I said, of the folks who get lost in Aspie discussions. If WP were to change over time into one giant general Autism forum, with no "lines drawn" I just think we would ALL lose. There are some discussions we all feel comfortable participating in, and all feel like we have something to contribute/take away. But there are many that are specific to where our kids are positioned on that spectrum, and THAT'S what I meant by "we all need a place". When I said there are other forums to discuss other parts of the spectrum, I didn't mean you guys should leave us alone and go there - although I can see in hindsight how that would sound. I meant for ME PERSONALLY, I have tried those other forums and they can't accommodate my needs as the parent of an Aspie, because they just don't "get" what I'm talking about (or worse, they resent my perspectives and are outright beligerent). What I meant by "this is our place" is that everyone needs a forum to feel comfortable, and I would hate to see a campaign to radically change WP away from its AS focus.

I should have started by saying I totally agree a sticky thread or sub-forum would be valuable - I thought it in my head but didn't write it out. I should have written what I meant more carefully, which is "this is our place to feel comfortable - please join us, share the space, and I support your efforts to carve out your own space here - but please don't try to fundamentally alter the things that make Aspies and their parents feel comfortable here".

However, I have to say, that none of that miscommunication adds up to questioning the validity of diagnostic labels. I came here because FINALLY I had found a place where parents of kids on the spectrum didn't attack each other using "which form of Autism do you have" as a weapon. THAT is exactly the kind of past experience I've had that led me to post my feelings on "this is our place". And once again it rears its ugly head.


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07 May 2011, 6:23 pm

Washi wrote:

It makes sense. I'm fortunate that I understand a lot of what my son does on a personal level, because of it I'm the one who first realized my son was autistic in spite of everyone else telling me I was wrong that I couldn't know such a thing and that my child was perfect. I'd still have been able to realize it and have been able to get help even sooner though if the pediatrician had taken my earliest concerns seriously (I did not know the earliest red flags for autism but he had several and I did report them to pediatrician only to have her regard me as some sort of hypochondriac, it was only when I saw him spinning and flapping for the first time the light went on and everything else made sense. We took him back to the pediatrician and I told them he was autistic, they still didn't believe me because they didn't think I could possibly know such a thing or that they could miss something so obvious ... then they actually opened their eyes 8O I'd have also been aware much sooner if my own AS had been acknowledged and I'd been informed that I was at greater risk for having an autistic child). But I still have questions about how to make his life the best it can be that my experience or anyone else's who's only experience with autism is AS would have trouble answering.


I know your frustration as far as people not listening. A mother knows her child! I voiced concerns about the stimming to his therapists when he was about a year old, and they chalked it up to the DS. I kind of took them at their word(they're the experts, right?) until he was about 2 and things just seemed to be getting worse. Now here we are at the age of 5, his speech is gone, his feeding is terrible, and all he does is stim. Honestly though, I doubt they would have been willing to give him a DX at such a young age with Down's to boot....DXing at that age is tricky enough as it is. It may end up having been better that we waited until now for the DX. But still...I feel like we've lost precious time.



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07 May 2011, 8:27 pm

Caitlin wrote:
I apologize for not being careful enough with my language - it's a touchy subject, and difficult to discuss without offending someone. Again, what I was responding to was the tone in that specific post about changing the banner, which to me had strong messaging that it was time to erase the line everywhere - including here at WP. I read that as a call to erase the AS focus from WP.

I personally need that line here. That line between Aspergers and other forms of autism. I need it to find support and resources that are useful for my son.

I think I am the flipside, as I said, of the folks who get lost in Aspie discussions. If WP were to change over time into one giant general Autism forum, with no "lines drawn" I just think we would ALL lose. There are some discussions we all feel comfortable participating in, and all feel like we have something to contribute/take away. But there are many that are specific to where our kids are positioned on that spectrum, and THAT'S what I meant by "we all need a place". When I said there are other forums to discuss other parts of the spectrum, I didn't mean you guys should leave us alone and go there - although I can see in hindsight how that would sound. I meant for ME PERSONALLY, I have tried those other forums and they can't accommodate my needs as the parent of an Aspie, because they just don't "get" what I'm talking about (or worse, they resent my perspectives and are outright beligerent). What I meant by "this is our place" is that everyone needs a forum to feel comfortable, and I would hate to see a campaign to radically change WP away from its AS focus.

I should have started by saying I totally agree a sticky thread or sub-forum would be valuable - I thought it in my head but didn't write it out. I should have written what I meant more carefully, which is "this is our place to feel comfortable - please join us, share the space, and I support your efforts to carve out your own space here - but please don't try to fundamentally alter the things that make Aspies and their parents feel comfortable here".

However, I have to say, that none of that miscommunication adds up to questioning the validity of diagnostic labels. I came here because FINALLY I had found a place where parents of kids on the spectrum didn't attack each other using "which form of Autism do you have" as a weapon. THAT is exactly the kind of past experience I've had that led me to post my feelings on "this is our place". And once again it rears its ugly head.


Being a parent is stressful at times, and being a parent to a child with autism just takes it to a whole other level. I know there are some days when I feel like I'm walking around with no skin. I may take something the wrong way, or maybe I'm just too touchy. I think we're all trying to find our place, and in all honesty, this place is about the best I've found. I've run across a number of boards that aren't even functioning anymore, they're just dead from lack of activity. I see others that seem to be full of frantic mothers asking about symptoms. And while I'd love to stay and maybe give some input, I have my own questions that need answers, so I'm here at WP.

But maybe regardless of where our children are on the spectrum, we can sort of hold each other up, maybe give some comfort when it's needed, when we can spare a moment.



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07 May 2011, 9:37 pm

I don't really notice a difference between the different forms of autism other than those considered more severe are more obvious. I can relate to them all, and am around someone with classic autism on a daily basis. Autism is autism to me, just different expressions of it.



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07 May 2011, 11:01 pm

buryuntime wrote:
I don't really notice a difference between the different forms of autism other than those considered more severe are more obvious. I can relate to them all, and am around someone with classic autism on a daily basis. Autism is autism to me, just different expressions of it.


It is mostly for those forms "considered more severe and obvious" that we'd like to get a separate parent section for. The HFA in the heading is a typo.



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07 May 2011, 11:25 pm

Woops, I apologize for misquoting, I just realized I misread what buryuntime wrote. My brain swapped out "are" for "and" and that changed the meaning.



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08 May 2011, 12:30 am

Caitlin wrote:
Cyberdad your response is hurtful. It is precisely the type of response I used to get on generalized autism forums when I tried to talk about my son with AS. No one here is going to question the dx of a child with pdd-nos or classic autism, so why would you turn around and question the validity of my son's dx? This is not the way to create a supportive forum, and your words only serve to reinforce my point about the need for WP to maintain its AS focus for families like mine, so we don't have to waste our energies defending the labels our children have.


Hi Caitlin,
I'm really sorry if I hurt your feelings as it was certainly not my intention.
I'm not trying to diminish the importance of Aspergers, I also agree with the general view that people will continue using the label even after the formal diagnosis is no longer recognized as separate from HFA.

I think you are clearly wrong that I have made any judgement over your son's dx, that decision is purely between you and the health professional you saw. You are welcome to use the label if it's helpful.

Since my daughter's diagnosis I have been told by my daughter's Psychologist that as my daughters speech improves her diagnosis can be shifted from HFA to Aspergers. I have done some background reading and there are certainly aspects of Aspergers (often typical) that she never had. For instance her fine and gross motor neuron skills are excellent she keeps up physically with her peers, although she has problems with eye contact in public, once she knows somebody she is happy to make direct eye contact, despite language she is very sociable and enjoys crowds. She has no problems with fun fairs, shopping malls and recently we visted San Diego for holiday stayed all night watching a night show with Shamu the killer whale with all types of noises, sound effects and shouting. She has perfect writing and no issue with Dysgraphia. Finally she very very rarely has a meltdown.

All of this leads me to think that the initial label she got was based purely on speech delay, but even this is not secure. She spoke from 10 months old and has an extensive vocabulary. Nowadays she speaks (certainly not equivalent to her peers) but is comfortable with communicating what she needs and what she is planning with us. She is getting better at turn taking and telling us what she did and how she feels.

When the time comes and she speaks more "normally" with us and other people I will not bother getting her re-diagnosed. No offence but I don't plan to give her a lable named after a pre-war psychologist from the 1940's. These things are unhelful. I am more interested in the traits she manifests, how these help or hinder her ability to be independent in this NT world.



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08 May 2011, 2:49 am

Anyone else have someone close to you tell you they don't come around as much anymore because seeing your child depresses them? I got that gem from my own mother who I've always been very close to earlier today when she called to say she wanted to stop by on Mother's Day. I don't think she even realized that was something that I'd already figured out and should have been left unsaid. She's typically very depressed anyway and bringing it back up would only be harmful. Is there such a thing as a non-combative, non-snarky response to that? I just let it go.



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08 May 2011, 5:49 am

Washi wrote:
Anyone else have someone close to you tell you they don't come around as much anymore because seeing your child depresses them? I got that gem from my own mother who I've always been very close to earlier today when she called to say she wanted to stop by on Mother's Day. I don't think she even realized that was something that I'd already figured out and should have been left unsaid. She's typically very depressed anyway and bringing it back up would only be harmful. Is there such a thing as a non-combative, non-snarky response to that? I just let it go.


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