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So, what happens in 2013 when a PDD dx is no longer on the spectrum?

meghans30meghans30 member
in Special Needs

My son will have the same deficits, but no longer on the spectrum? WIll I need to have him re-evaluated to see if he meets a full autism dx?  

 

So confusing.  

 

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Re: So, what happens in 2013 when a PDD dx is no longer on the spectrum?

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    meghans30meghans30 member

    imageCnAmom:
    I assume you're talking about when the new DSM comes out?  PDD, PDD-NOS, AS, and all other disorders classified as an ASD will all be rolled into a dx of Autism.  your DS will still have a dx but it will change from PDD to Autism. 

    So, he will automatically get reclassified as autism? I just heard some conflicting information. 

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    nomadicanomadica member
    I'm not sure what is going to happen. But I do know that my son (PDD-NOS) will not meet the new criteria for autism because, at this point, he lacks restricted or stereotyped behaviors/interests. Last time I checked with our developmental pedi, she didn't really know what would happen either. Hopefully when we see her this fall she'll have a better idea.
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    meghans30meghans30 member

    imagenomadica:
    I'm not sure what is going to happen. But I do know that my son (PDD-NOS) will not meet the new criteria for autism because, at this point, he lacks restricted or stereotyped behaviors/interests. Last time I checked with our developmental pedi, she didn't really know what would happen either. Hopefully when we see her this fall she'll have a better idea.

    Yes, that's what I have been reading. He does not have these behaviors either.   

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    meghans30meghans30 member
    I think he does meet the "D" category, but to someone who does not know him well, it comes off as subtle. I'm def. tuned into his behaviors lately. Sometimes when he wants something he will continuously repeat whatever it is. For example, "truck, truck, truck," even though we have already told him we are getting it. He loves the color green, maybe not so unusual, but it becomes his focus for conversation. Pencil sharpening is another. I've been taking notes to help with the behavior therapy he goes to weekly.  We just received the formal dx in Feb. and now it's changing. Just confusing.
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    nomadicanomadica member
    image-auntie-:

    imagenomadica:
    I'm not sure what is going to happen. But I do know that my son (PDD-NOS) will not meet the new criteria for autism because, at this point, he lacks restricted or stereotyped behaviors/interests. Last time I checked with our developmental pedi, she didn't really know what would happen either. Hopefully when we see her this fall she'll have a better idea.

    Below are the current DSM5 proposed criteria-

    Autism Spectrum Disorder

    Must meet criteria A, B, C, and D:

    A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

    1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,

    2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

    3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people

    B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:

    1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).

    2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).

    3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

    4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

    C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

    D. Symptoms together limit and impair everyday functioning.

    Restricted interests and repetitive behaviors are part of the B section of the criteria. A child not have the restricted special interests and still meet the criteria. That alone is not a dealbreaker. A lot of younger kids and those on spectrum with lower IQs don't have the classic "special interest" piece. Repetitive questioning is another quirk that requires significant bandwidth before it appears. Often parents miss dysfunctional routines because they're too close to them; these often turn up as teacher notes about transitioning.

    A child could have routines/ritutual, echolalia and sensory issues and meet the criteria for B.

    My son clearly fits the criteria even though his presentation is fairly subtle IRL.

    Yup, I'm familiar. At this point, DS does not meet criteria based on B. He has no sensory issues, has no difficulty with transitions, etc etc, even based on teacher and therapist report. I understand that sometimes RSBs don't present until later, like 4 or 5, so they certainly might show up. In the meantime, though, I'm not sure what will happen. Right now he presents more as "social communication disorder".

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    nomadicanomadica member
    image-auntie-:

    imagenomadica:
    Yup, I'm familiar. At this point, DS does not meet criteria based on B. He has no sensory issues, has no difficulty with transitions, etc etc, even based on teacher and therapist report. I understand that sometimes RSBs don't present until later, like 4 or 5, so they certainly might show up. In the meantime, though, I'm not sure what will happen. Right now he presents more as "social communication disorder".

    Maybe he's not properly dx'd at this point. On what is his current dx based?

    Every once in a while I run into a family with a child who is improperly dx'd as a very young child; it's one of the reasons I would prefer docs hold off on the dx until at least 3. Usually there's a family hx and similar behaviors. A lot of docs pull the PDD-Nos card when a child has speech and motor delays and they want to ensure EI or ECE services for the family. As they got older, the kids who "lost" their dx tended to have other issues that may have been part of their early delays. Specific LD and ADHD are not unusual among these kids.

    We really don't know if the dx is correct or not. Sometimes I really think it's wrong, and then I think I'm just in denial. DS was dxed PDD-NOS primarily based on diminished eye contact, decreased interaction with play, not pointing, and language delays. The picture was complicated by the fact that he had a number of early ear infections that led to temporary hearing loss (fixed at age 12 months with tube placement), which likely affected his early language development. At this point he scores as average or better on developmental scales. We'll have the ADOS done this fall with his dev. pedi (only parts of it were completed at 14 months, when he was dxed). DH has ADHD so I wouldn't be at all surprised if that was part of this picture, though at this point he doesn't seem any more inattentive or hyperactive than a NT 2 year old. DS still has diminished eye contact and seems somewhat less social than other kids his age, but otherwise doesn't really present as ASD. However, DH and some of his family members definitely seem to have some AS traits. It's all very confusing as a parent!

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    nomadicanomadica member
    image-auntie-:

    imagenomadica:
    We really don't know if the dx is correct or not. Sometimes I really think it's wrong, and then I think I'm just in denial. DS was dxed PDD-NOS primarily based on diminished eye contact, decreased interaction with play, not pointing, and language delays. The picture was complicated by the fact that he had a number of early ear infections that led to temporary hearing loss (fixed at age 12 months with tube placement), which likely affected his early language development.

    JMHO, but I think a dx at 14 months is really, really difficult to nail down. I mean, the most well developing toddlers are quirky at best with a range of skills that is all over the place. Add in a hearing loss and I think it's really pushing it.

    At this point he scores as average or better on developmental scales.

    My son was always on track or early for developmental milestones. We had 2 word phrases at 6 months, complete sentenses by 16 months. DS's fine motor skills have always been exceptional. He drew using 3 point perspective in preschool. He pointed by 9 months. He's still autistic.

    We'll have the ADOS done this fall with his dev. pedi (only parts of it were completed at 14 months, when he was dxed). DH has ADHD so I wouldn't be at all surprised if that was part of this picture, though at this point he doesn't seem any more inattentive or hyperactive than a NT 2 year old.

    That's probably a good idea. What other scales do you plan to have run? A Vineland would be a good choice to go with ADOS. You might consider a neurophych eval later if he is one of those kids who doesn't neatly fall on one side or the other.

    DS still has diminished eye contact and seems somewhat less social than other kids his age, but otherwise doesn't really present as ASD. However, DH and some of his family members definitely seem to have some AS traits. It's all very confusing as a parent!

    I don't think the pedi uses the Vineland but some other adaptive scale, and the ADI-R. DH and I have gotten to a place where we are relatively ok with the uncertainty of the dx and have taken a "wait-and-see" approach. I'm very interested in what the pedi will have to say at the next eval. We will probably get a neuropsych but later, closer to age 6 when the data gets more reliable (I'm a neuropsychologist!). Thanks for your input, Auntie!

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