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#1 of 16 Old 02-24-2011, 10:20 AM - Thread Starter
 
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Jack was diagnosed with PDD-NOS last Thursday. My husband went to the meeting because our boys and I were home sick. I have 2 sheets of info and some recommendations for support groups, therapies, and the Autism Speaks 100 Day Kit. They told my husband that they'll send the full report to us in the mail.

 

So, I had to do some googling. Am I understanding this correctly? That those with PDD-NOS have symptoms of Autism but don't fall under the category of actually having Autism?


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#2 of 16 Old 02-24-2011, 12:06 PM
 
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PDD-NOS means you ARE on the autism spectrum, you just don't meet all the criteria for classic autism. 


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#3 of 16 Old 02-24-2011, 12:09 PM - Thread Starter
 
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So I guess he has "high functioning" Autism? I'm so confused. 

They said that he was "on the spectrum" for lack of social interaction.

He has a speech delay, but they couldn't properly measure his speech because he didn't say more than 5 words. 


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#4 of 16 Old 02-24-2011, 12:14 PM
 
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If this is your 2.5 year old it could be that due to his age and type/degree of the symptoms, a definitive diagnosis of Autism cannot be made at this time; this appears to be common with toddlers and pre-schoolers. I'd see if you can get another appointment or at least a phone appointment where the evaluation can be explained to you; particularly if you are the parent that is the primary caretaker and will be arranging most of his medical care/therapies. I know that I could never have explained ds' 2hr evaluation appointment to dh.

 

Are you doing EI through your district?


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#5 of 16 Old 02-24-2011, 12:31 PM
 
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PDD-NOS refers to Pervasive Developmental Disorder - Not Otherwise Specified.  It is often used in younger children as a place holder until a more concrete diagnosis can be made (ie as the child grows), and enables families to access services/funding.  If this is for a two year old, they are likely concluding that your son will meet the criteria for an Pervasive Developmental Disorder, they just don't know which one yet.

 

I actually find reading the criteria in the Diagnostic Statistical Manual (DSM) helpful.

 

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#6 of 16 Old 02-24-2011, 12:37 PM - Thread Starter
 
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Quote:
Originally Posted by Emmeline II View Post

If this is your 2.5 year old it could be that due to his age and type/degree of the symptoms, a definitive diagnosis of Autism cannot be made at this time; this appears to be common with toddlers and pre-schoolers. I'd see if you can get another appointment or at least a phone appointment where the evaluation can be explained to you; particularly if you are the parent that is the primary caretaker and will be arranging most of his medical care/therapies. I know that I could never have explained ds' 2hr evaluation appointment to dh.

 

Are you doing EI through your district?

 

Yes. Jack is almost 3 (April). He's currently in speech, and occupational therapy 2x a with (with help from a special education teacher as well).  His evaluation was 2 hours, but when DH went to the "staffing" it was about an hour. I'm hoping the full report we'll get to us soon. 




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#7 of 16 Old 02-24-2011, 12:39 PM
 
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The diagnosis criteria in the DMS is changing, and the definition of each disorder is somewhat up to individual practitioners. but in general, the spectrum of autism includes Asperger's, PDD, PDD-NOS, and "classic" autism.

Usually, children who who appear to have autism but are more social, or learn to use expressive language quickly, are diagnosed with PDD, whereas those who aren't, and don't, are diagnosed with Autism.

I've been doing early intervention with kids on the spectrum for ten years, and I liked the way the San Francisco school districts paper listed "autism-like condition" as criteria for an IEP, so that children who were on the spectrum with any condition were covered. The students I've had with a diagnosis of PDD as opposed to Autism were, as I mentioned above, very quick to respond to traditional therapy (ABA, Floortime, etc.) and were generally able to join the general population for school with support services as opposed to being in a self-contained classroom. Other than that, they had the same general issues as the kids with Autism, but to a less intense degree, or with less frequency.

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#8 of 16 Old 02-24-2011, 01:58 PM
 
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Hello!

 

How are you doing? How are you taking this news?  I'd send you a big hug but it icon button isn't working!

 

My DD used to have the dx PDD-NOS, but her dx was changed to Asperger's when she was 13. My understanding of PDD-NOS is that it is the dx used when a child is on the autism spectrum, but doesn't neatly fit into a specific type of autism. Often kids with the label PDD-NOS are on the higher end of spectrum, but not always so. Because it is a catch all, dx, it can mean almost anything.

 

The full report should tell you a great deal more about what they are actually seeing right now.

 

Evals are sort of like photos. They are just a snap shot in time. Depending on what is going on with your child and how he changes over the years, he'll most likely have more eval. Just as a photo can't tell you what a child will look like in a year or two, or when they grow up, an eval and a dx can't tell you what they will be like. And that's a good thing. There's lots of hope.  

 

My favorite book on the topic is "quirky kids" by Klass. It is about several related dx's -- including PDD-NOS. It's a great starting place. It talks about the kinds of professionals involved, options for therapies, issues with family life etc. It has a very friendly tone -- like having a good friend who's BTDT and can kinda show you the ropes.

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#9 of 16 Old 02-24-2011, 03:58 PM
 
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I haven't been following your story, but if you don't think the autism label makes sense to you, please seek out additional information. Lots of kids with speech delays are misdiagnosed autistic or PDD-NOS when it truly doesn't apply, often because they have a unknown receptive delay in addition to expressive delays. It's important to feel comfortable with the diagnosis because the treatment pursued may be radically different.

 

The DSM IV specifies that for an autism diagnosis that language disorder is ruled out as the only potential cause for impairment (or they might get a Mixed Expressive Receptive Delay - MERLD -  diagnosis instead, 315.32) but it seems not all practitioners know this and/or are qualified to correctly diagnosis kids with major language issues. Most seem to not have heard of MERLD!

 

I mention this because nobody else has yet, and because I belong to a online community specifically for parents of kids with speech and communication delays that are not autistic. It happens very frequently that the kids are misdiagnosed as autistic or PDD-NOS, but then get a proper evaluation by someone who can recognize severe childhood speech disorder and are then diagnosed MERLD instead. Putting them in autism classes, or following an autism treatment plan can be detrimental. This also explains how some kids suddenly "grow out" of autism as they get a little older.


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#10 of 16 Old 02-26-2011, 02:45 PM - Thread Starter
 
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Quote:
Originally Posted by Linda on the move View Post

Hello!

 

How are you doing? How are you taking this news?  I'd send you a big hug but it icon button isn't working!

 

My DD used to have the dx PDD-NOS, but her dx was changed to Asperger's when she was 13. My understanding of PDD-NOS is that it is the dx used when a child is on the autism spectrum, but doesn't neatly fit into a specific type of autism. Often kids with the label PDD-NOS are on the higher end of spectrum, but not always so. Because it is a catch all, dx, it can mean almost anything.

 

The full report should tell you a great deal more about what they are actually seeing right now.

 

Evals are sort of like photos. They are just a snap shot in time. Depending on what is going on with your child and how he changes over the years, he'll most likely have more eval. Just as a photo can't tell you what a child will look like in a year or two, or when they grow up, an eval and a dx can't tell you what they will be like. And that's a good thing. There's lots of hope.  

 

My favorite book on the topic is "quirky kids" by Klass. It is about several related dx's -- including PDD-NOS. It's a great starting place. It talks about the kinds of professionals involved, options for therapies, issues with family life etc. It has a very friendly tone -- like having a good friend who's BTDT and can kinda show you the ropes.

Linda on the move:

How am I? I'm confused, that's about it. I am just curious as to what this diagnosis actually means for Jack...no paperwork in the mail yet. :( I don't feel any different towards Jack, it makes no difference to me if he's Autistic, Gifted, or the Man on the Moon...he's my boy, my first born, one of the most precious and dear things in my life. He's my little man! I LOVE HIM! PDD-NOS or any other diagnosis he could ever get is just that....a label. I'm trying really hard not to let what I think family/friends will think/feel about his diagnosis bother me, because I know that there will be comments, and not necessarily "nice" ones either. Right now Jack is in speech therapy, occupational therapy and has visits with a special education teacher. I'm told he's in the same services now that he'd be in weather Autistic or not. His teacher did say that his IEP is in May and we'll talk about preschool ect then. She thinks he should be just fine in mainstream classes. Thanks so much for the book recommendation. :) I'll check it out!
 

 



Quote:
Originally Posted by iris777888 View Post

I haven't been following your story, but if you don't think the autism label makes sense to you, please seek out additional information. Lots of kids with speech delays are misdiagnosed autistic or PDD-NOS when it truly doesn't apply, often because they have a unknown receptive delay in addition to expressive delays. It's important to feel comfortable with the diagnosis because the treatment pursued may be radically different.

 

The DSM IV specifies that for an autism diagnosis that language disorder is ruled out as the only potential cause for impairment (or they might get a Mixed Expressive Receptive Delay - MERLD -  diagnosis instead, 315.32) but it seems not all practitioners know this and/or are qualified to correctly diagnosis kids with major language issues. Most seem to not have heard of MERLD!

 

I mention this because nobody else has yet, and because I belong to a online community specifically for parents of kids with speech and communication delays that are not autistic. It happens very frequently that the kids are misdiagnosed as autistic or PDD-NOS, but then get a proper evaluation by someone who can recognize severe childhood speech disorder and are then diagnosed MERLD instead. Putting them in autism classes, or following an autism treatment plan can be detrimental. This also explains how some kids suddenly "grow out" of autism as they get a little older.

Iris:

I wasn't at the meeting...so I'll just tell you what my husband told me. He said the lady told him (she was the one who did the eval) that they were unable to measure his speech because he only said 1 word, when they needed him to say at least 5.
 


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#11 of 16 Old 02-26-2011, 05:52 PM
 
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I'm wondering if they were talking about speech rather than language.  Speech is the articulation of words, the specific sounds and sound errors and is very hard to assess in a child who doesn't speak a lot during an eval.  Language is more the actual words, sentences, things like that.  So it could be that they could assess language but not speech.  They could also be referring to difficulty in getting a standard score, that they weren't able to get a result in terms of age equivalent or standard deviation since standardized tests can be very picky about what can be reported on by parents and what has to be done during the eval.

 

I would get on wait lists for a second assessment somewhere else.  Any time there are doubts, having another look is a good thing. 

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#12 of 16 Old 02-26-2011, 07:13 PM - Thread Starter
 
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Originally Posted by Aridel View Post

I'm wondering if they were talking about speech rather than language.  Speech is the articulation of words, the specific sounds and sound errors and is very hard to assess in a child who doesn't speak a lot during an eval.  Language is more the actual words, sentences, things like that.  So it could be that they could assess language but not speech.  They could also be referring to difficulty in getting a standard score, that they weren't able to get a result in terms of age equivalent or standard deviation since standardized tests can be very picky about what can be reported on by parents and what has to be done during the eval.

 

I would get on wait lists for a second assessment somewhere else.  Any time there are doubts, having another look is a good thing. 

 

The only other place that I know we could get a 2nd opinion is our pediatrician. She specializes in Autism research ect, but the fees/labs ect for her Autism screening is EXPENSIVE, insurance won't cover it 100% because it's considered "out of network". They'd pay 60/40% and it'd still cost us $3,000!
 


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#13 of 16 Old 02-26-2011, 08:32 PM
 
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I'm trying really hard not to let what I think family/friends will think/feel about his diagnosis bother me, because I know that there will be comments, and not necessarily "nice" ones either.5.

 

 

I'm glad to hear that he's already getting good services!  Why do you think there will be icky comments? What sort of ick do you expect?  Is it something that you could work on responses for so you feel more prepared?

 

Although my DD's dx isn't a secret, it isn't really super public either. There are people who I just don't discuss it with. My family of orgin is pretty toxic, so I set boundaries with them on all sorts of issues.  
 


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#14 of 16 Old 02-27-2011, 01:31 PM
 
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Iris:

I wasn't at the meeting...so I'll just tell you what my husband told me. He said the lady told him (she was the one who did the eval) that they were unable to measure his speech because he only said 1 word, when they needed him to say at least 5.
 


That alarms me a bit and speaks to what I was saying. A good assessment should be able to gauge the skills of child without any words yet. They should also be testing for how well he can comprehend language, in addition to what he says. I would be looking for a second opinion from someone that doesn't focus on autism research.

 

Where are you located and who did this assessment for you? What is the school district/Early Intervention? We might be able to give you some suggestions on additional options.


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#15 of 16 Old 02-27-2011, 02:21 PM
 
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Quote:
Originally Posted by iris777888 View Post


That alarms me a bit and speaks to what I was saying. A good assessment should be able to gauge the skills of child without any words yet. They should also be testing for how well he can comprehend language, in addition to what he says. I would be looking for a second opinion from someone that doesn't focus on autism research.

 

Where are you located and who did this assessment for you? What is the school district/Early Intervention? We might be able to give you some suggestions on additional options.


Speech language pathologists distinguish between language and speech. They should be able to assess his language/communication without him saying any words, but since in this model speech is just how you pronounce words, they couldn't accurately assess his speech without more than a word. So, until the OP receives a report, I wouldn't worry about this. The fact that the child is also receiving ST means that she can certainly ask her current speech therapist about it when the time comes.


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#16 of 16 Old 02-20-2013, 05:09 PM
 
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Hi, my son was just diagnosed with PDD today and I was looking for information online. Can I ask how your son is doing? honestly I think my son has been misdiagnosed but I guess time will tell if I am right or wrong... he does not fit the classic criteria for autism but has a severe speech delay, he understands language but has minimum words,he is also  able to play with others. im very confused. Thanks for listening. 

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