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

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cyberdad
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04 May 2011, 3:02 am

NOTE: This thread now is a WP section for parents of kids with more classic autism / severe impairments, PDD-NOS with more developmental delays, etc. You may post your issues and conversations here or in the general parenting forum as you feel comfortable.
- DW_a_mom



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.



Solvejg
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04 May 2011, 3:05 am

I cope fine in the general parenting area.

I actually don't bring up my children much on this site. :? Maybe i should start.......


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Washi
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04 May 2011, 5:35 pm

Yes.



Bauhauswife
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04 May 2011, 8:14 pm

That would be great.



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04 May 2011, 8:40 pm

Yes please.



DW_a_mom
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05 May 2011, 1:10 am

What about a sticky thread like the one for AS parents? That a moderator could create. Maybe, "families on the moon" to play off the turn of phrase from another thread, or ....?

Alex hasn't seemed that interested in adding new sub forums ...

But, if you want to try, the place to post would be WP Discussion. I don't think the site admins ever read the parenting board (moderators do) and only admins can make sub forums.


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cyberdad
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05 May 2011, 2:54 am

DW_a_mom wrote:
What about a sticky thread like the one for AS parents? That a moderator could create. Maybe, "families on the moon" to play off the turn of phrase from another thread, or ....?

Alex hasn't seemed that interested in adding new sub forums ...

But, if you want to try, the place to post would be WP Discussion. I don't think the site admins ever read the parenting board (moderators do) and only admins can make sub forums.


Thanks for the advice. I actually like the web architecture for WP and figured one more sub-forum wouldn't be too much to ask.
cheers!



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05 May 2011, 7:53 am

Where can I find info regarding the differences between Asperger's and HFA and PDD-NOS? Is it just the speech difference? I think my family might have one of each of those.


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Washi
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05 May 2011, 11:42 am

If we do get a separate area for PDD-NOS instead of "HFA" I think that should be worded differently because Aspergers is a form of HFA. And I don't think we should exclude parents of "Moderate" or "Low" functioning children ... I'm not sure what the second label should be though. Classic Autism?



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05 May 2011, 12:24 pm

Yeah Washi, I think HFA and Aspergers Syndrome are very closely related. I was reading up on HFA today, and I was shocked to see that it's not even recognized in the DSM!! WTH?? What happens with those kids? Do they not get services? I was told that a PDD-NOS in my district doesn't get services either.

I would consider my son to be on the lower functioning end of the spectrum, and after weeks of searching on the net, I see very few resources and parental social connections for LFA and Classic autism. The worst being Healthboards, where every post seems to be..."is this a symptom of autism? Does this sound like autism?" yadda yadda yadda...Everyone is in hysterics but no ones giving input. It's a mess.

I wonder if this is why there's such a clog in the system to get an evaluation...someone's kid licks a window one time, and they're off to see the Neurologist! :lol:



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05 May 2011, 1:36 pm

Bauhauswife wrote:
Yeah Washi, I think HFA and Aspergers Syndrome are very closely related. I was reading up on HFA today, and I was shocked to see that it's not even recognized in the DSM!! WTH?? What happens with those kids? Do they not get services? I was told that a PDD-NOS in my district doesn't get services either.

I would consider my son to be on the lower functioning end of the spectrum, and after weeks of searching on the net, I see very few resources and parental social connections for LFA and Classic autism. The worst being Healthboards, where every post seems to be..."is this a symptom of autism? Does this sound like autism?" yadda yadda yadda...Everyone is in hysterics but no ones giving input. It's a mess.

I wonder if this is why there's such a clog in the system to get an evaluation...someone's kid licks a window one time, and they're off to see the Neurologist! :lol:

My understanding is that the DSM doesn't make a separate distinction for Asperger's anymore either. All of the labels (PDD-NOS included I think) fall under Autism Spectrum Disorder. The label that a doctor may or may not put on your kid has little if anything to do with whether or not your child receives services from the public school system in the US. If your child meets the school system's criteria for having "characteristics consistent with autism" (or other "disorders") and those characteristics appear to prevent your child from learning in the normal school environment, then he or she qualifies for services. You can easily have a kiddo that is diagnosed by a doc with an ASD but who the school system thinks is perfectly capable of learning in the normal school environment so that kiddo will not receive services. Alternatively, many kids may never have been formally diagnosed by a doc but through a school evaluation it has been determined that they require accomodations in order to learn so they get the services.

I guess I kinda philosophically agree with the changes to the DSM because I tend to be a lumper not a splitter which also leads me to say that you might see more action on a thread that is stickied in the parents forum than you would if a new sub forum is created. Just my 2 cents!



Washi
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05 May 2011, 5:22 pm

Bauhauswife wrote:
Yeah Washi, I think HFA and Aspergers Syndrome are very closely related. I was reading up on HFA today, and I was shocked to see that it's not even recognized in the DSM!! WTH?? What happens with those kids? Do they not get services? I was told that a PDD-NOS in my district doesn't get services either.

I would consider my son to be on the lower functioning end of the spectrum, and after weeks of searching on the net, I see very few resources and parental social connections for LFA and Classic autism. The worst being Healthboards, where every post seems to be..."is this a symptom of autism? Does this sound like autism?" yadda yadda yadda...Everyone is in hysterics but no ones giving input. It's a mess.

I wonder if this is why there's such a clog in the system to get an evaluation...someone's kid licks a window one time, and they're off to see the Neurologist! :lol:


That doesn't sound right about the services and DSM recognition. I know what you mean about the LFA and Classic autism parental connections. I thought when I first started reading the threads in the parents section of WP I'd see people seeking support for profound problems like seizures and fecal smearing for instance, but I haven't seen anything like that here. What I do see baffles me - because I have so many symptoms of Asperger's myself but when I was growing up they were all considered non-issues so it's surreal seeing people seeking support for things my parents viewed as normal.



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05 May 2011, 7:49 pm

Ugh...don't even get me started on the fecal smearing, or as we jovially call it...the poo apocalypse. 8O :lol:
But I'll take that over the seizures any day, If I have a question about a specific subject, like teeth grinding or well....fecal smearing, as it pertains to autism, I usually just google it, and I will undoubtedly find dozens of other parents discussing(usually blogging) about the subject. But it's nice to have a more accessible open dialogue on a message board. It's nice to make connections; you feel less alone.



cyberdad
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05 May 2011, 8:15 pm

Washi wrote:
If we do get a separate area for PDD-NOS instead of "HFA" I think that should be worded differently because Aspergers is a form of HFA. And I don't think we should exclude parents of "Moderate" or "Low" functioning children ... I'm not sure what the second label should be though. Classic Autism?


I've just been advised by one of the moderators that a sub-forum is not necessary as there is already a parenting page.

You make a good point re: inclusiveness for parents of kids right across the spectrum....

The moderator has been kind enough to point out that "Aspergers and Autism are the same thing" so I have asked they change web banner to;

WrongPlanet.net
"The online resource and community for Autism"



Washi
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05 May 2011, 8:21 pm

I've only had one minor incident of that nature and I think he was really just trying get it off his hands because now when he accidentally sticks his hands down there to scratch an itch and finds more down there than he bargained for he goes to me and puts his hands in my face. :eew: Thankfully that hasn't happened in a while.