What do you think? Is it AS or Autism?

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Registered: 03-26-2003
What do you think? Is it AS or Autism?
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Mon, 12-11-2006 - 12:59am
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Avatar for betz67
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Registered: 03-26-2003
Wed, 12-13-2006 - 8:11am

Evelyn, that was a really insightful idea, I'm going to copy the criteria and look at each of my boys! Weston fits the autism perfectly.

12 yrs old is MUCH too old in the autism field! there has been so much research on it in the recent years to ignore.

Our family is such a mishmash of stuff on and off the spectrum. I totally agree that ADHD is related to autism! Sometimes my oldest who is dx w/ ADD-NOS is more impared than my ASD kid. My youngest is Dx ADHD and he's got all the sensory stuff too, but he isn't socially impaired, his stims are different(standing on his head for hours a day, doing laps around the house hopping on one foot, bouncing off furniture/people). My girls are "NT" but both have anxiety issues and learn differently (not enough to have an LD label, but enough to really struggle in school) and they also have sensory issues and have troubles with organizational skills. They are all on some sort of spectrum, but only one is actually dx as being on the autism spectrum. My boys no matter what the dx all have difficulty w/ receptive language and conversation skills. the ADD and ADHD boys don't have the repetitive behaviors though they do crave routine. My oldest also has always had his obsessions and restrictive areas of interest since he was very young.

We have friends w/ a 17 yr old autistic son. He is classic Kanners. He cannot hold a conversation at all. He only talks about his movies-- but he knows EVERYTHING about his movies (director, all the actors, all the lines, he can organize them by actors or directors, etc). His speech is truely all echolalia and not used conversationally appropriately either. He has no self-care skills at all. He is in a SDC and will be until he ages out, then they will have to find another situation for him. It is very unlikely that he'll live on his own ever. He's pretty easy going tho, not upset by changes and new things-- rather oblivious to those things. He's considered moderately autistic. Contrast that w/ Weston who is able to manage full mainstreaming in accelerated classes, but has NO eye contact, lots and lots of stimming, strict schedules and routines and very little conversational give and take. But he is able to use spontaneous speech and echolalia to get through a conversation when necessary due to good ST. He's considered moderately autistic as well (tho we've been told it's high functioning moderate) so according to the diagnostic criteria they're the same, but they're so far different they hardly look like they have same disorder. There are just not enough words in the diagnostic criteria to explain all the autistic possiblities. Austim is so small a word for all the possibilities, but the diagnostic criteria is so confusing.

I do think it depends on the evaluator as to which Dx each child is given. Weston was evaluated the 1st time w/a provisional Dx of aspergers or pdd-nos. We changed states and went through the waiting period and he was dx w/ autism (moderate and highfunctioning).

hmmmm,
Betsy

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Registered: 06-25-2003
Wed, 12-13-2006 - 8:51am

Isn't there a story that Hans Asperger's name for the

-Paula

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Registered: 03-26-2003
Wed, 12-13-2006 - 9:44am

Betsy,

I definitely see the difference between a child who is classically and significantly impaired by autism and "higher functioning" ones. I know kids who are completely non-verbal or verbal but it is completely echolalic and are very impaired and that is definitely different than what I live with. However, what confuses me is all those kids from completely non-verbal all the way up to those with language delayes but are high functioning have the same diagnosis. But we reach the kids who are in the normal IQ range when they start splitting things up into different diagnosis. Most kids I know with AS and HFA are virtually very similar and then the PDD-NOS thing gets really confusing. I have met kids with PDD-NOS who are definitely autism spectrum some classically so with significant delays up to those with PDD-NOS who have a few PDD like quirks who border more on ADHD or just have sensory issues and then again some are just like our AS/HFA kids.

I really think they need to relook at the criteria and how diagnosis are being split up. It really is unneccessary and not productive to split hairs on the upper end of the spectrum and then lump every thing together for the rest of the spectrum when there may be completely different needs.

I do like Evelyn's idea as well. Maybe I will give that a try only I can't use the nice colored fonts! I did look at both criteria for them yesterday and both fit autism and missed a couple small parts on the AS criteria for instance Cait's language delay and Mike's Adaptive behavior delay, etc.

Renee

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Wed, 12-13-2006 - 12:05pm

I've been a bit MIA lately, holidays, Eric changing to a new school and program in January so endless IEP-related stuff.

But this has always been a fascinating q to me. They do need to update for sure, but I guess we can see how complicated this is.

I mentioned this to DH who said he liked Tony Atwood's comment that the only difference between AS and autism is how they are spelled. That it is a matter of degree. I have always viewed it, like most of us, as a spectrum.

As for my kiddo, he fits the autism critera, but how many areas he fits has changed over time. He did have a significant language delay, but now has that "little professor" thing going. But eye contact is hard, though better than it used to be, he paces when talking too. Has lots of stims under stress. But can carry on a real conversation (not just a monologue on the topic of his choosing) on a good day.

Adaptive skills, well, he is capable of learning them. He's about a year or two behind. With everything, it is one a good day he can do it. On a good day he can use the toilet and accomplish everything. On a bad day he will forget to wipe, or flush, or even pull up his pants. Eating would never occur to him unless prompted. But he will say if he is thirstly.

Socially, he has always been mostly pretty social. At first with us, now with others. And that is kind of the most heartbreaking thing at the moment. He wants to play, uses skills he has practiced, "Hi. What's you name? My name is Eric, want to play?" It works sometimes, but if it doesn't he's an angry little mess.

He never wants to be alone. He will seek me out if in another room, admonish me that he was so lonely and I should never leave. Yet two years ago, all I heard was "Momma go away."

So in the past, his deficits were language and social--ie no language and was antisocial. Now there are still pragmatic problems, but functional, spontaneous speech. There is social confusion, but a desire to be social. The biggest problem areas are adaptive and self-stimulatory.

So who knows. It is so complicated. Then we have to mood worry that we are watching. As much as I hate the PDD-NOS dx that Eric has, it fits him for the moment. Actually, the exact words of his neuor are: "Autism Spectrum Disorder, probably in the PDD-NOS end of the spectrum." And that is where he seems to be to me.

I used to think he was AS. But when I see kids with AS dx, he is not like them. He is bright, but not that bright. His mind does not move as quickly as theirs. He has too many adaptive and self-stimulatory problems, in coomparison.

But neither is he Kanner's. He is "in" our world and very much wants to be a part of it.

Sorry to go on so long. Guess I just say I agree someone needs to put more thought into the criteria, but I can see why it is hard to categorize.

Katherine

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Registered: 09-13-2006
Wed, 12-13-2006 - 12:29pm

I'm thinking that perhaps autism isn't a

Avatar for betz67
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Registered: 03-26-2003
Wed, 12-13-2006 - 2:10pm

oooo! I love the color wheel analogy! that helps my understanding 100%. I think Weston is a cool aqua green w/ lots of royal blue swirls and a few yellow spots. (this makes me think of Maggie and the Ferocious Beast-- Weston sometimes seems like he's been created in a world where he doesn't quite fit and doesn't know the rules and everything must be taught to him very cautiously and he needs a special map to help-- I love that show!).

I know there is quite a bit of research being done on IQ and which dx is given and language right now. This is one reason I think they need to revamp the diagnostic criteria, so much is being learned about the whole spectrum right now, tho maybe that's a reason not to change until they are more sure of all the new info?

Betsy

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Registered: 03-26-2003
Wed, 12-13-2006 - 2:35pm

I have also read where they are considering breaking the spectrum up into various subtypes. For instance, those with digestive problems, those that developed normally and regressed, those with lots of family members affected, I could also see a subtype of those who have also significant mood issues and another for significant anxiety issues.

I could see breaking it up that way because it will affect treatment. If they can pin point which subtype of kids benefit from diet and digestive interventions vs. those that have a mood issue going on then you have a better idea where to start treatment at. kwim?

However, I would like to take the whole concept of HF and just throw it out the window. THis whole my kid is better than yours, my kid is worse off than yours thing just doesn't really help anyone at all and it doesn't give us a direction to go with to help. It ends up with animosity and division. I know parents of kids who are more impacted hate it because it is a constant reminder that their child is "low functioning". Conversely as a parent of HF type kids I am sick of AS being referred to as a mild form of autism in a way that makes it sound like this cute quirky little difference that everyone should strive toward. I am also tired of having to fight for supports and services because "well your child is "high functioning". What the heck does that mean? That he can talk? Cause if he was functioning well in the world he wouldnt need a babysitter, aide or respite worker experienced in autism for each moment of his day.

JMO

Renee

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