“Milder” Is In the Eye of the Beholder: On “Autisms” and “PDD-NOS”
April 5, 2007 by Kristina Chew, PhD
Filed under Health
Please read this comment from Amanda Baggs about this post. For myself, I do not equate “mild” autism with PDD-NOS and regret that this was not clear in my original post; I have added sentences in boldface and I thank Ms. Baggs very much.
Amanda Baggs at Ballastexistenz just put a post that lays out what PDD-NOS officially means in careful detail. Baggs notes how “indistinct” PDD-NOS is as a term, and—in addition to reviewing evolving DSM criteria—lists how the term gets used as a kind of catch-all diagnosis if a “person does not fit the doctor’s stereotype of autism even though they might meet official criteria for autism or Asperger,” and as a “milder” diagnosis than so-called “full-blown autism.” She ends her post by noting:
Every time I see people making broad generalizations about what “PDD-NOS” means, I wonder if they know exactly how varied the people are that the word can be officially applied to. PDD-NOS doesn’t necessarily say anything about “severity” (as most people conceptualize severity). It doesn’t necessarily say anything about language development. It doesn’t necessarily say anything about anything, given the amount of combinations of things it can be used for, legitimately or otherwise, and it’s wrong to make generalizations about “the unique manner in which PDD-NOS kids socialize as opposed to other kids on the spectrum” or “the severity of PDD-NOS as compared to Asperger and autism” etc. Those are meaningless statements.
“It doesn’t say anything about anything”: As Baggs writes, “PDD-NOS” is too broad, too undefined, too unspecified. Even more, as she comments, “PDD-NOS” is often incorrectly used:
In some discussions of PDD-NOS (such as the ICD’s definition of atypical autism, which translates into PDD-NOS), people most people would regard as “severely disabled” are at the forefront. “Just having PDD-NOS” in that instance does not mean “milder”, it means that the person’s other impairments (whether intellectual or physical) are so severe that they’re incapable of even engaging in enough actions to get them an autism diagnosis, which is by definition more severely impaired in those areas than anyone with an autism diagnosis.
My son Charlie has always had one diagnosis, autism—-no one has ever said to us words to the effect of “it might just be PDD-NOS” or used a word like “mild” about him. As you may imagine, eight years ago in 1999 when Charlie was not yet two years old, these were not easy words to hear. Charlie did not talk, he had difficult and severe behaviors, he showed hardly any comprehension of any language. Jim and I got the distinct impression (I have to say impression: the kind members of the Child Study Team, the pediatrician, Charlie’s daycare teachers kept their lips pressed tight when we asked these sorts of questions) that Charlie was “severe” and, even more, that his outlook was Not Good.
The result of this was that, for quite a few years, I would sometimes have an uneasy feeling that Charlie had been pre-relegated to the lower echelons of autism diagnosis—this is not a feeling that I think I ought to have had, or that I think was helpful, but I know I felt it. I felt it when another mother backed away nervously when I told her Charlie was going from a preschool special ed classroom to a self-contained autism classroom (the other mother had mentioned that her son, who was younger than Charlie, would be mainstreamed in kindergarten next year). And, from my experience, talking about “milder” autism or a child “just having PDD-NOS” or being “HFA Asperger’s” or “displaying autistic symptoms” results in an odd diagnostic competition among parents of autistic children, and this is not very helpful. Wherever your child might be on the autism spectrum—even if professionals tell you that your child is not autistic despite evidence and knowledge to the contrary—autistic children have a lot to contend with. My son cried on the bus and for the first half hour at school and said (as his teacher told me over the phone at 9.30) “something, Mom something, but we can’t tell what.” One of the ABC News stories on Asperger’s described a student who faces daily bullying.
PDD-NOS does not mean “milder,” but some professionals use the term this way, perhaps as they think that “PDD-NOS” does not sound as harsh as “autism.” “Milder” is in the eye of the beholder, not of the autistic person; being able to talk does not automatically mean one suffers less, or can tell those around you what is difficult. Suffering is not quantifiable and it is not less because someone is said to be “more high-functioning.” It may sound odd to say, but Charlie, because he is not mainstreamed and always has someone with him 1:1, has some advantages: He may not learn (not yet, that is) how to contend with bullies, but at this point in his life he has the help and support he needs.
Charlie actually had two people—an aide and a speech therapist he has known for a long time—sitting with him at school and encouraging him to eat something. Charlie usually eats breakfast at school and seems to be much more settled as soon as he has, and this was the case today: His teacher emailed me to let me know that he was doing well, but saying “Time to go home….Mom” a lot. I have the day off from teaching today and Charlie has tomorrow off from school (due to a religious holiday). A day off from school can throw Charlie off, but I did not think my not going to work would be a big deal to Charlie, as I was leaving the house at the usual time to go to the library.
Apparently I thought wrong; it also has occurred to me that I took a different bag than the one I usually do when I go to teach—-Charlie must have noticed…..
Of course Charlie noticed. Just as, of course Charlie—for all his minimal, not always well-articulated speech—-understands everything. (I cannot prove this; I can act as if I believe this to be the case, and I try always too.)
“Milder” is in the eye of the diagnoser.
What I would like to know is why the term PDD-NOS has been so misused?
…but you’ve replied to my post by making a post that again spends much of the post equating “might just be PDD-NOS” with “mildness”.
During the initial time period when I was diagnosed with PDD-NOS (officially — in an off-the-record sense I was orally diagnosed with autism), my records also refer to me as low-functioning and as having a severe and complex developmental disability of some unknown variety. I doubt anyone regarded me as having “mild” problems, from the way my records read. They just did not want to use a word (“autism”) that, in 1995, would have given me an awful prognosis. A prognosis that they were, as a group, trying to fight, albeit in an ignorant manner, and they were trying to fight it because other people were trying to give me it, which would’ve resulted in the permanent placement in a state institution that the insurance company (who also regarded me as “unsalvageable”) wanted.
In some discussions of PDD-NOS (such as the ICD’s definition of atypical autism, which translates into PDD-NOS), people most people would regard as “severely disabled” are at the forefront. “Just having PDD-NOS” in that instance does not mean “milder”, it means that the person’s other impairments (whether intellectual or physical) are so severe that they’re incapable of even engaging in enough actions to get them an autism diagnosis, which is by definition more severely impaired in those areas than anyone with an autism diagnosis.
So if you are told constantly, autism, autism, autism, definitely not PDD-NOS, it doesn’t just mean your child is clearly more severely impaired than people with PDD-NOS. It also means that your child is clearly less severely impaired than people with PDD-NOS. Because PDD-NOS isn’t just for people who have fewer autistic traits than other autistic people, it’s also for people too severely impaired to display certain autistic traits in the first place.
Your post, despite quoting mine, serves to reinforce the idea that PDD-NOS==milder. You quoted my post but then every reference to PDD-NOS you made from then on was about “mild” forms of autism, and to people who could be said to have “mild” forms of autism. That is not the case, that is not its only usage, and in some places it’s not even its primary usage. I made the post in order to show why statements like this don’t work, and you replied to it by making more statements like this, as far as I can tell.
Mea culpa—I meant to comment on the confusion about the use of the term “PDD-NOS” and its false equation with “mildness.” I did write about my son, who is not considered “milder.” I will reference your comment at the start of my post for the reader. My last sentence was an attempt to suggest that “mild” and “severe” are words that are applied arbitrarily and even incorrectly. Thank you for pointing this out to me.
I think both posts are important in recent conversations here. I also agree, unfortunately, that “talking about ‘milder’ autism or a child ‘just having PDD-NOS’ or being ‘HFA Asperger’s’ or ‘displaying autistic symptoms’ results in an odd diagnostic competition among parents of autistic children.” But, I’ve felt encouraged by commenters here who’ve also made similar observation–that such labels really mean very little when it comes to the significance of experience.
I will tell you, though, having an “atypical autism” diagnosis, it is comforting/reassuring to see it mentioned earlier.
I’m a little pooped today, so maybe I don’t have anything significant to add except that I liked both Amanda and your postings. (laying head on keyboard, ready for weekend)
I am so glad that you are both writing about this — thank you. The PDD-NOS Dx, or atypical autism, is so confusing, and so misused, and so unspecific.
What has been so alarming in all of the diagnostic ambiguity that we’ve been faced with over at Autism’s Edges is that every clinician who sees Sweet M has a different impression — and so far it seems as though the Dx each time corresponds to their area of specialization.
The anxiety disorder specialist sees anxiety disorder, the autism specialist sees atypical autism, the ADHD specialist sees ADHD and ODD, the speech language pathologist sees CAPD, the pediatric opthamologist sees a visual tracking crossing the mid-line problem, and, most recently, the pyschologist she sees sees psychiatric problems caused, perhaps, by “lacks parenting” — some new “slacker mom” version of the refrigerator mom theory.
Kristina, I’m so sorry if I seem as though I’m in a Dx competition . . . It’s odd to wish that one just had a Dx — any old Dx — anything definitive, and yet that is how I’ve been feeling.
It’s the problem of the Dx — it’s painful when our kids are put in a box and all expectations are blasted away, in the way that you describe happening to you and Jim and Charlie.
And it’s painful when there’s no box to put them in, because then there is no place in the world that they can fit . . . no right school, no right treatment, no right program or plan of action.
MothersVox, I definitely don’t feel as if I’m in “Dx competition” with you! I felt a little odd writing that, and yet I know I have sensed it among parents. Not that we are really “competing,” but these definitions and labels and questions and judgments of what our children “are” bring out some pained feelings. I felt so pained to read your most recent post—–have been thinking lots of M and wondering what will happen next. “Slacker icebox moms”: What will they think of next!
Thanks as always Rochelle—–hope your weekend does start tomorrow?!??
My personal experience, from knowing a family with a child locally disgnosed with PDD-NOS, is that it has allowed them to succumb to their discomfort with any diagnosis at all &, over time, let go of all of the assistance their child was getting (& entitled to). As a result, their child has not progressed with “issues” (things that they feel are issues) like not making eye-contact, difficulty with socialisation, & anxiety. These are good people, people that I care about, but I have come to the conclusion that all I can do is model what I feel is appropriate behaviour with my own kid & hope they will find the comfort to follow suit. But they are clearly uncomfortable about what it means to have a special needs kid & don’t really want to face it. There have been times when I’ve felt that Brendan’s ASD diagnosis has made them feel that he has “more severe” problems than their child, & kind of weirded them out, but so far we’re all still friends. Interestingly (& because of continuing intervention), Brendan has a good handle on some of the “issues” they have with their child, such as eye-contact & socialisation, while theirs has some severe food-aversion issues that Brendan never had. I am left feeling that, at least in our community, a diagnosis of PDD-NOS may do little but allow parents of special needs kids to avoid facing facts that they are uncomfortable with & allow the school district to withdraw services because of the “milder” diagnosis. The sad thing is that the kids are ultimately the losers. My autistic son knows what’s going on with him, is comfortable with the term “autistic” as applied to himself & others, is getting help with his areas of difficulty, & lives life with zest. He may have a “more severe” diagnosis, but in many ways he’s progressing farther than his friend…
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.
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.
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.
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 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—–
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.
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.
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.
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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