Comments on: “Milder” Is In the Eye of the Beholder: On “Autisms” and “PDD-NOS” http://www.blisstree.com/articles/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/ Family, Health, Home and Lifestyles Fri, 25 Dec 2009 14:31:39 -0500 http://wordpress.org/?v=2.8.4 hourly 1 By: Quinn http://www.blisstree.com/articles/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/comment-page-1/#comment-538616 Quinn Sun, 12 Aug 2007 11:33:37 +0000 http://www.autismvox.com/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/#comment-538616 My son, too, (almost eight) was diagnosed with pdd-nos due to his not quite fitting an Aspergers diagnosis. Close but no cigar. He is articulate, engaged, obsessive with interests and seems to have a photographic memory. Yet, he is awkward socially and tends to display more interest in objects/things than people. He also has a theory of mind issues and repetitive behaviors etc. I do think an Aspergers diagnosis would have fit him better as he never had any delays cognitively or with language. He was speaking full sentences by 18 months. Yet, the evaluator was uncertain and found him "quirky" but not quite "quirky" or disengaged enough. I don't like that the pdd-nos can be either severely impaired or mildly impaired. It doesn't make sense. Aspergers is understood as high functioning which fits my son better so this is how I refer to it hfa. School label is "autism" for any ASD in my district. ASD is NOT a diagnosis--interesting someone posted that their doctor gave the child a dx of ASD. No such thing. eq My son, too, (almost eight) was diagnosed with pdd-nos due to his not quite fitting an Aspergers diagnosis. Close but no cigar. He is articulate, engaged, obsessive with interests and seems to have a photographic memory. Yet, he is awkward socially and tends to display more interest in objects/things than people. He also has a theory of mind issues and repetitive behaviors etc.

I do think an Aspergers diagnosis would have fit him better as he never had any delays cognitively or with language. He was speaking full sentences by 18 months. Yet, the evaluator was uncertain and found him “quirky” but not quite “quirky” or disengaged enough.

I don’t like that the pdd-nos can be either severely impaired or mildly impaired. It doesn’t make sense. Aspergers is understood as high functioning which fits my son better so this is how I refer to it hfa. School label is “autism” for any ASD in my district.

ASD is NOT a diagnosis–interesting someone posted that their doctor gave the child a dx of ASD. No such thing.

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]]> By: Ettina http://www.blisstree.com/articles/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/comment-page-1/#comment-533042 Ettina Sun, 08 Apr 2007 21:36:17 +0000 http://www.autismvox.com/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/#comment-533042 I'm officially diagnosed with PDD NOS. In my case, it appears to be because I almost, but not quite, fit the Asperger Syndrome criteria. I don't have 'marked impairment with multiple nonverbal signals'. Instead I have subtle differences in nonverbal communication, more receptive than expressive. But I have been socially excluded and uninterested in friends (which are separate things) and I certainly have a lot of the repetitive rituals and routines. And I have a tendency to loose expressive language skills when I'm stressed, so although I'm usually quite articulate, when my brother's pestering me I often say 'stop that' and he says 'what?' and I can't describe what he has to stop doing (which frustrates him and my parents a lot). The problem is in organizing my sensation of the annoying thing into something I can say, so alternative communication methods probably wouldn't help. I’m officially diagnosed with PDD NOS. In my case, it appears to be because I almost, but not quite, fit the Asperger Syndrome criteria. I don’t have ‘marked impairment with multiple nonverbal signals’. Instead I have subtle differences in nonverbal communication, more receptive than expressive. But I have been socially excluded and uninterested in friends (which are separate things) and I certainly have a lot of the repetitive rituals and routines. And I have a tendency to loose expressive language skills when I’m stressed, so although I’m usually quite articulate, when my brother’s pestering me I often say ’stop that’ and he says ‘what?’ and I can’t describe what he has to stop doing (which frustrates him and my parents a lot). The problem is in organizing my sensation of the annoying thing into something I can say, so alternative communication methods probably wouldn’t help.

]]> By: Joeymom http://www.blisstree.com/articles/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/comment-page-1/#comment-532981 Joeymom Sun, 08 Apr 2007 04:14:53 +0000 http://www.autismvox.com/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/#comment-532981 When we first took Joey down to Charlottesville, the PDD-NOS label was discussed, and dismissed. It was discussed, because Joey. being as unique as any other kid, was "presenting" in an "unusual" manner, according to the specialist. We were told "he has classic symptoms, but not a classic combination." I now think this is really strange, but then, we were just confused. Perhaps the doctor was trying to tell us what we now know beyond doubt: getting an appropriate education for Joey is difficult, because he does not fit what anyone expects. Now I know that's because what "other people" expect is for a kid with autism to be non-verbal, self-absorbed, self-isolating, and mentally retarded. To find a bright, smiling, hard-working little kid whose main frustration is a communication disorder is apparently quite a shock. The result is that our special ed people often seem to forget he has a disability, and fail to address issues such as sensory issues or processing issues. He's called "mild" and "high functioning", yet it has been become achingly clear that he would not be able to function in the "inclusion" classroom the school offers (he would require an aide, and this school system is dead set against aides). Anyway, that long ramble comes down to Joey being diagnosed Autism Spectrum Disorder, not PDD-NOS, because the doctor felt he would already have trouble getting services. And he was right. When we first took Joey down to Charlottesville, the PDD-NOS label was discussed, and dismissed. It was discussed, because Joey. being as unique as any other kid, was “presenting” in an “unusual” manner, according to the specialist. We were told “he has classic symptoms, but not a classic combination.” I now think this is really strange, but then, we were just confused. Perhaps the doctor was trying to tell us what we now know beyond doubt: getting an appropriate education for Joey is difficult, because he does not fit what anyone expects. Now I know that’s because what “other people” expect is for a kid with autism to be non-verbal, self-absorbed, self-isolating, and mentally retarded. To find a bright, smiling, hard-working little kid whose main frustration is a communication disorder is apparently quite a shock. The result is that our special ed people often seem to forget he has a disability, and fail to address issues such as sensory issues or processing issues. He’s called “mild” and “high functioning”, yet it has been become achingly clear that he would not be able to function in the “inclusion” classroom the school offers (he would require an aide, and this school system is dead set against aides).

Anyway, that long ramble comes down to Joey being diagnosed Autism Spectrum Disorder, not PDD-NOS, because the doctor felt he would already have trouble getting services. And he was right.

]]> By: Astrid van Woerkom http://www.blisstree.com/articles/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/comment-page-1/#comment-532970 Astrid van Woerkom Sat, 07 Apr 2007 21:04:16 +0000 http://www.autismvox.com/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/#comment-532970 The worst thing with different diagnoses along the autism spectrum (Asperger's, HFA, Kanner's Autism, LFA, PDD-NOS, etc.) is that people automatically make assumptions about your situation when they hear your diagnosis. The worst example of this was when I found out I was labeled autistic spectrum disorder, my staff folk saying she was disappointed that I didn't get a specific label cause there are differences in how people with different labels should be handled..while she'd known me for FOURTEEN MONTHS! Now I don't want to talk bad about this staff person, she doesn't treat me in a stereotypical way at all and still seems to see me as an individual since finding out about the label, and still shows a lot of effort into helping me find wasy to deal with my issues, but that one comment really made me cringe. After all, there's far more variety among people with one diagnosis, than there is between people with different diagnoses - and PDD-NOS is the best example of this. The worst thing with different diagnoses along the autism spectrum (Asperger’s, HFA, Kanner’s Autism, LFA, PDD-NOS, etc.) is that people automatically make assumptions about your situation when they hear your diagnosis. The worst example of this was when I found out I was labeled autistic spectrum disorder, my staff folk saying she was disappointed that I didn’t get a specific label cause there are differences in how people with different labels should be handled..while she’d known me for FOURTEEN MONTHS! Now I don’t want to talk bad about this staff person, she doesn’t treat me in a stereotypical way at all and still seems to see me as an individual since finding out about the label, and still shows a lot of effort into helping me find wasy to deal with my issues, but that one comment really made me cringe. After all, there’s far more variety among people with one diagnosis, than there is between people with different diagnoses – and PDD-NOS is the best example of this.

]]> By: Autism Vox » Hopes and Outcomes http://www.blisstree.com/articles/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/comment-page-1/#comment-532876 Autism Vox » Hopes and Outcomes Fri, 06 Apr 2007 22:00:54 +0000 http://www.autismvox.com/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/#comment-532876 [...] Charlie—-nearly ten years with autism, though I did not know this would be Charlie’s diagnosis—-I have other goals for him now, or rather other hopes. I think of myself as a recovered [...] [...] Charlie—-nearly ten years with autism, though I did not know this would be Charlie’s diagnosis—-I have other goals for him now, or rather other hopes. I think of myself as a recovered [...]

]]> By: Kristina Chew, PhD http://www.blisstree.com/articles/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/comment-page-1/#comment-532859 Kristina Chew, PhD Fri, 06 Apr 2007 16:47:52 +0000 http://www.autismvox.com/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/#comment-532859 I still remember how confused I felt when I first heard the term "PDD-NOS"----what did this have to do with "autism"? I've learned a lot since then but I remember puzzling over what "pervasive and "not otherwise specified" meant. Thanks Erin----- I still remember how confused I felt when I first heard the term “PDD-NOS”—-what did this have to do with “autism”? I’ve learned a lot since then but I remember puzzling over what “pervasive and “not otherwise specified” meant. Thanks Erin—–

]]> By: Erin http://www.blisstree.com/articles/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/comment-page-1/#comment-532853 Erin Fri, 06 Apr 2007 14:28:22 +0000 http://www.autismvox.com/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/#comment-532853 I'm thrilled to see someone writing about this. My son was diagnosed PDD-NOS a year ago at 3 year of age. When I described his past to the developmental pediatrician, she said she that if she had seen him a year earlier he probably would have just been diagnosed as autistic. This is all very, very confusing for me, and any access to a person who might know enough to explain it is very limited. That's why this type of post and the internet are so invaluable to me. I’m thrilled to see someone writing about this. My son was diagnosed PDD-NOS a year ago at 3 year of age. When I described his past to the developmental pediatrician, she said she that if she had seen him a year earlier he probably would have just been diagnosed as autistic. This is all very, very confusing for me, and any access to a person who might know enough to explain it is very limited. That’s why this type of post and the internet are so invaluable to me.

]]> By: Kristina Chew, PhD http://www.blisstree.com/articles/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/comment-page-1/#comment-532790 Kristina Chew, PhD Fri, 06 Apr 2007 06:52:50 +0000 http://www.autismvox.com/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/#comment-532790 Gibberish, perhaps, but it can mean a lot: Words matter when it comes to autism. If I may ask: What sort of topics would you like (prefer) to see posts on? Thanks much. Gibberish, perhaps, but it can mean a lot: Words matter when it comes to autism.

If I may ask: What sort of topics would you like (prefer) to see posts on? Thanks much.

]]> By: Morgan http://www.blisstree.com/articles/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/comment-page-1/#comment-532789 Morgan Fri, 06 Apr 2007 06:48:46 +0000 http://www.autismvox.com/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/#comment-532789 Too much heat being generated over a label, if you ask me. Let's keep in mind what autism is: a menu of behaviors -- at least six from columns a, b, and c, with at least two from column a, and at least one each from columns b and c. What nonsense! If you didn't get one from column b, then, PDD-NOS. More gibberish. Kristina, and all of your critics and commenters: your minds are all much too valuable to waste on this stuff. Too much heat being generated over a label, if you ask me. Let’s keep in mind what autism is: a menu of behaviors — at least six from columns a, b, and c, with at least two from column a, and at least one each from columns b and c. What nonsense! If you didn’t get one from column b, then, PDD-NOS. More gibberish. Kristina, and all of your critics and commenters: your minds are all much too valuable to waste on this stuff.

]]> By: Leila http://www.blisstree.com/articles/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/comment-page-1/#comment-532805 Leila Thu, 05 Apr 2007 20:44:07 +0000 http://www.autismvox.com/milder-is-in-the-eye-of-the-beholder-on-autisms-and-pdd-nos/#comment-532805 Very interesting posts by Kristina and Amanda. I read a lot of descriptions of children diagnosed as PDD-NOS and then I think, wait a minute, those kids sound like they are totally autistic, even considering the DSM criteria. There's no doubt that doctors are not all in consensus about the differences between autism and PDD-NOS. There's also a false notion that kids diagnosed as PDD or Asperger's are always less impaired than the ones diagnosed with autism. Autism means, the person has a range of symptoms that fit ALL criteria. It doesn't mean the symptoms are necessarily stronger than another person's who has a lesser range of symptoms, but who might have much more trouble adapting to a social life because those two or three areas of difficulty are so pronounced in his/her case. In my opinion, what matters is -regardless of the diagnosis/label- this person is able to enjoy life, foster meaningful relationships, and find a creative or professional outlet that will make her/him happy. Very interesting posts by Kristina and Amanda. I read a lot of descriptions of children diagnosed as PDD-NOS and then I think, wait a minute, those kids sound like they are totally autistic, even considering the DSM criteria. There’s no doubt that doctors are not all in consensus about the differences between autism and PDD-NOS.

There’s also a false notion that kids diagnosed as PDD or Asperger’s are always less impaired than the ones diagnosed with autism. Autism means, the person has a range of symptoms that fit ALL criteria. It doesn’t mean the symptoms are necessarily stronger than another person’s who has a lesser range of symptoms, but who might have much more trouble adapting to a social life because those two or three areas of difficulty are so pronounced in his/her case.

In my opinion, what matters is -regardless of the diagnosis/label- this person is able to enjoy life, foster meaningful relationships, and find a creative or professional outlet that will make her/him happy.

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