As a doc who needs to know about diagnostic codes, I am aware that most medical diagnoses have an "NOS" option...And some docs use the NOS option when they don't know what else to use, and some use it as a cop out, and some use it because they don't want to take the time to figure out exactly what code fits the patient, and the list goes on...my son was diagnosed with PDD-NOS and his developmental ped. explained it to me as mild form of autism.
I tell everyone that my son has autism, even though his official diagnosis is "atypical autism" (aka PDD-NOS). I try to focus on what my son's challenges are, rather than a textbook definition.
If the people you talk to are interested in finding out more, I recommend "Ten Things Every Child With Autism Wishes You Knew" in article form (it's also available in book form, which I recommend for you to read). It touches on all the problem areas (for example sensory overload, language delays, meltdowns...) in a very easy-to-read format. Here's the link:
http://www.ellennotbohm.com/ten_things_article.html
Good luck with everything, and welcome to the forum.
BTW, if you are not already aware of it, EVERY diagnostic category in the DSM-IV (A psychiatric manual -- and psychiatry and neurology have very different approaches to autism, and most other things) has an NOS!
NOS is important because there ARE so many people who "need" a diagnostic category, but do not fit ALL of the "official" criteria for classic "anything," be it autism, Borderline Personality Disorder, whaddevah, and yet fit enough that it is that category which seems most appropriate for their symptoms.
Consider it a flaw of the classification system, if anything.
I still consider DSM-IV and its "loophole" to be better than having to cope with the one-sentence LEGAL definition, my personal soapbox topic, in which EVERYTHING about the child, including IEP GOALS, must be written to fit the legal definition, (loose as it is), whether it is absolutely true about the child or not.
[QUOTE=AndrewsMommy]As a doc who needs to know about diagnostic codes, I am aware that most medical diagnoses have an "NOS" option...And some docs use the NOS option when they don't know what else to use, and some use it as a cop out, and some use it because they don't want to take the time to figure out exactly what code fits the patient, and the list goes on...[/QUOTE]
Hi doc. What do you think ? In case of ASD compared with other disorder is NOS used a little too much because of the services they have to provide OR because of the urealiable tools to dx ?
[QUOTE=NorwayMom]I recommend "Ten Things Every Child With Autism Wishes You Knew"
http://www.ellennotbohm.com/ten_things_article.html
[/QUOTE]
I have given out three copies of this book to family thus far.
Oh! I also wanted to comment on fred's post that said that children with AS tend to be mild. I would actually disagree. While they may APPEAR more high-functioning and be able to "fly under the radar" a bit better - AS affects all aspects of their lives. And I believe tzoya has commented that kids with AS tend not to be as social as kids with PDD-NOS in terms of WANTING to be around other kids. I think there is a wide range of severity with AS as well. I know several children with AS who I would consider far more severe than my ds - their issues more greatly interfere with their daily life.
Not to start a controversy here - but it sometimes can be as difficult for a child who "looks NT" to the general public but who then has a meltdown because someone turned on a vacuum cleaner! People expect kids to behave if they "look NT". I don't know exactly what that means, but I have had that said to me countless times - "But he LOOKS normal!"
Anyway, I guess my point was that higher-functioning kids have issues as well - they are often just more hidden. And the parents have to deal with everyone thinking they are just bad parents. Although I am getting to the point I frankly don't care anymore! But, sometimes I do still - especially when it is family or friends. But there is a wide range of severity among all of the different classifications on the autism spectrum.
I guess I for one am thankful for the PDD-NOS category or my son would not have gotten a diagnosis and we would not have gotten help. To me, he clearly has some form of autism but he doesn't meet the severity for the symptoms. Does that mean he doesn't need help - NO! So, our doc gave him the diagnosis saying most docs wouldn't give him ANY diagnosis. That PDD-NOS diagnosis has opened doors that would have been closed to us and ds has made tons of progress because of it. We wouldn't have been able to get into free social skills groups, playgroups, Head Start, etc.
Our dev ped has taken TONS of time with my ds and he is clearly baffled. My ds does not have the severity of symptoms and he has good joint attention and some definite empathy. He can read people's faces for many emotions and can also tell how someone is feeling by tone of voice. But, he has some clear symptoms of being on the spectrum - obsessions, repetitive behaviors, occasioal meltdowns, visual tracking problems, fine and gross motor delays (the last two of which aren't diagnostic criteria but are common among kids on the spectrum) and doesn't quite understand how to interact socially with his peers. He gets along much better with kids who are about a year younger than he is and/or a few years older. His imaginative play is somewhat limited but he can be very creative at times.
Anyway, that is just one picture of a child with PDD-NOS. He is highly verbal and has been since 18 months of age. No language delay to speak of, although he only had 4 words at 17 months and then had a language explosion within that next month. He just doesn't fit neatly into any category - doesn't meet the criteria for AS due to lack of severity of symptoms and he is not considered to have classic autism by any means.
Just my thoughts!
My point was that AS kid cannot have a clinically significant language delay and must have at least a normal IQ, so, as a group, kids with AS have fewer challenges that kids in the other buckets where language delay is nearly universal and cognative delay or impairments are also very common.
With due respect (you know I like you, Snoop, so don't take this the wrong way), HF kids have their challenges, true, and my girls aren't all that mildly affected, but I don't think I can equate the challenges I face with the challenges that the parents of the more severely affected kids face.
Hi,
I'm new here. My son was diagnosed with PDD-NOS Thursday.
For the past 4 weeks we've suspected he had Autism and I've told our friends and family that he might have it. But this PDD-NOS diagnosis has me a bit baffled on how to explain it to people. I'm not sure I understand it all that well myself.
Here's my understanding of it. It's in the spectrum of Autism Disorders, but doesn't meet the criteria for any of the other disorders.
Does this mean that he does or doesn't have Autism? It's a good thing to be PDD-NOS rather than classic Autism, right? Should I still be as worried as I was before I got the diagnosis or should I be relieved?
He does still need very intensive intervention, right?
Thanks so much for any insight.
Marilyn
About to be finalized adoptive mom to Jay age 2yrs 10mos, PDD-NOS
Welcome Marilyn,
My daughter was diagnosed with pdd-nos at 2.8 years old because she didn't meet ALL the criteria for classic autism so she got the pdd label which is still autism but not as severe..lacking a couple of the sx for full blown classic autism..doesn't mean your child isnt autistic. I asked my neurologist if pdd was different from autism and he said "no". We did intense ABA therapy and speech for 3 years and she just graduated kindergarten with no aide or supports:) It is not a death sentence...at his age there is so much you can do...ABA is the best intervention in my opinion...
Please read "Let me hear your voice" it is a very inspiring book of a mom that used ABA to recover her two children from autism. It will motivate you so much:) They are many people on board with great advice and encouragement so dont be afraid to come here and posts often. Read as much as you can while remaining sane
Try to focus on the positives he can do and know he is the same sweet angel boy today as he was before diagnoses. It is a long journey the next few years but full of rewards too. You will be his hero and he will do very well if he gets the right help:) Good luck!
Blessings,
Hi there and welcome!
You can search this board and find many posts on PDD-NOS. My son has been diagnosed PDD-NOS so I would be happy to speak with you about it, but I am off the board in a moment so I will have to be brief.
If I may, you have come to a board where everyone has a child or is themself dealing with a spectrum disorder (or something akin). We are all dealing with issues here...all of them with their own difficult nuances. PDD-NOS has its own set of trials and tribulations unique in every case.
That being said...PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified) is a spectrum disorder by which 5 or less of the criteria for "Classic Autism" have been met. In order to be diagnosed as Autistic one must meet six or more of the 12 criteria.
The usual three areas of concern are around: 1) Speech (usually paired with sensory integration), 2) Social skills, and 3) Inflexibility/Rigidity
There are others, but those are the big three.
Googling PDD-NOS is a tough one because you will most often come up with answers about autism. A lot of the time when people ask me what PDD-NOS is I tell them it is a "mild form of autism, " but the NIMH specifically states that this is a very incorrect answer in that PDD-NOS is NOT autism. <shrug> Ok...it looks like a duck...it quacks like a duck...BUT IT IS NOT A DUCK?! No...not a duck. I still describe it as "mild autism" to most people and then elaborate from there.
You need to get your babe into EI as soon as possible. A full eval to figure out the deficits. Birth to Three should provide free services in your area for the next two months (until he turns three) GET ON THAT. Once he turns three it is up to the school district and that is a whole new fight. Birth to Three can help to advocate initially getting you into that system. USE IT...NOW. You don't have much time. From there you want to get it all lined up. PT, OT, ST, ABA, RDI, on and on...whateverhe needs however you can get it.
I don't mean to bombard you with all of this, but your post was rather broad and I want to touch all the bases before I blow out tonight (and my babe and I had a tough one this evening). I just want to impress upon you that it is of great import...as great of import as for anyone who is on this board, that you and your son get intensive services as early as possible...this starts with an intense eval.
A little while back someone asked me what my babe's delays are and I posted back a quick response...tired at the end of an evening much like this one. I am cutting and pasting the body of that post below as well as a thread to the link from which it came.
Hope to hear from you soon.
BB has been assessed as having the same primary delays as most other PDD-NOS kids:
1. Speech delays-expressive and receptive. When he had his eval he was one month shy of three years. we were told that one was at 2 years and the other at 2.5. To be honest…I cannot remember which got which. What I do see is that his vocabulary is quite extensive, but he has limited “pragmatic use of language.” He still is really only doing three-word sentences regularly and more with some prompting. He can read sentences that are longer, but then he starts to really blur words. Today I could hardly understand a thing he was saying, but told him to “tell me more” each time until I could catch a word to grab on to and run with. (Edit-I forgot to add modulation and grading…he can be very loud)
2. Sensory Integration issues. I see this around sound and light, but only in certain circumstances (shopping, large groups, when he is sick…)
3. Social problems. I am hopeful that when his language improves this will improve greatly. Right now he pushes sometimes and occasionally he hits. He hits My DW and I more than anyone else. His tantrums are hellacious.
4. Inflexibility/Rigidity. This is coming along, but turn a different road going home and BOOM…meltdown. Redirectable sometimes…other times not. Sometimes it gets really hard (staying with this example) if we stop at a light and he wants to drive a specific direction that is not the way we need to go (especially bad if he points to the highway). If it is not too far out of the way I have gone with it once in a while. We were using
I really think that we have to get over this speech barrier. He wants so badly to express himself and sometimes he can. He will say “I’m sorry” unsolicited. He will also say, “Are you ok?” When he knows he has hurt one of us. Often though he does not know how to put the words together so he uses his body. He is a great kisser (stop giggling!) and I love his hugs. So when he wants to say, “I love you” he will come up and ball himself in my lap and say, “awwwww” and cuddle around and give me a kiss. He will say, “I love you” when I say it to him, but that usually takes my prompt.
He is stubborn as one can be, but I don’t know if that is a deficit or not. I know that when he does not respond to redirection from Mom or Dad this is not a good thing.
Something I have noticed and will bring to the Dev. Ped. In August (our re-eval) is that he has obsessive tendencies. He will get stuck on certain books and those are the ones that must be read before bed. He will get stuck in routines around bath time (I just broke through this barrier with a new less obtrusive routine. It used to take 1.5 hours to get through bath! Now I can get it done in less than 40 minutes). Sometimes he needs all of the lights turned on downstairs before he will go upstairs! This is infrequent, but it happens. Sometimes it takes him a really long time to get into the car seat.
He also seems to be pretty unable to play alone most of the time. This is even with solitary tasks. He wants either myself or DW to be there. This needs to change as we need a respite. My family is on this side of the Country and I will put it straight…they suck. No support system for us at all.
As with you all I have learned strategies that are pretty specific to my baby. He has become my main purpose for living. I knew that would be true before he was even born, but now…well…now it is different.
When DW and I have spoken about this she has said in times of exhaustion, “I did not sign on for this. Why couldn’t he just be normal?” My reply has been, “I didn’t sign on for this either and it would be easier if he were normal, but that isn’t what we wanted. We wanted an exceptional child and that is exactly what we have.”
And with that I will say…I love this boy more than I ever thought I could love another being. More than I thought it was possible to love. He has defined my world.
I am sure this has gone on too long. I didn’t mean to do so, but if you asked my DW she would say, “Yeah, but he always does”
He does still need very intensive intervention, right?
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Yes, it will help him a lot and it's a very good thing that he is so young. And he might improve faster because of the NOS part of the dx.
Nice meeting you, Jay's mommy.
He's on the autism spectrum but has not been diagnosed with autistic disorder. As has been explained, this is because he does not meet at least six of the twelve criteria (including two from section one, iirc and at least one from the other two sections). Bear in mind, these diagnosis are fairly subjective. There is no discreet, single condition called 'autism' that you either have or you don't. Autism is a man-made classification, nothing more - it's a clinical diagnosis made through observation of behaviors. If you child has been diagnosed with PDD-NOS I think it is accurate to say that he is on the autism spectrum, or has autism, though not the specific diagnosis of 'autistic disorder'.
All of the pervasive development disorders (PDD - same thing as autism spectrum) fall along a continuum ranging from mild to severe. The specific diagnosis (PDD-NOS, autistic disorder, Asperger's syndrome) does not imply level of "severity". Any of the disorders can be relatively mild or very severe. Asperger's syndrome kids tend to be mild, though, because any degree of mental retardation or clinically significant language delay disqualifies a child from that specific diagnosis, but not PDD-NOS or Autistic disorder. There are two other PDDs (child disintigrative disorder, basically, late onset, regressive autism that tends to be severe) and Rhett's syndrome (which, imo, shouldn't be on the autism spectrum because it's symptoms are caused by a known genetic disorder - this one also tends to be severe).
My daughters are full syndrome autistic and yet they are considered somewhat mildly affected, and will be attending mainstream kindergarten in the fall with minimal supports.
My PDD-NOS son is about to complete Kindergarten. He began in a Birth - 3 Program and then went on to a specialized pre-school program for 3-4 year olds in our district. ABA is also a part of our life. His IQ was just tested and he is average. Acedemics are actually one of his strengths. He still has a speech delay and some sensory issues, but we're working on it. If it comes up, I also simply say he has mild autism.
Welcome Jay's Mommy!
Take out a piece of paper. Draw a large circle. Label this circle Pervasive Developmental Disorders. Then draw 4 circles inside. Label them 1. Autism 2. Asperger Syndrome 3. Rett's 4. Childhood Disintegrative Disorder. Then, color all the parts of the larger circle that is OUTISIDE the smaller circles. The COLORED part of the circle is PDD-NOS. This graphic. That means the child fits into the larger dx of Pervasive Developmental Disorders (this is the MEDICAL term for Autism Spectrum Disorders), but it not in one of the SPECIFIED syndromes (the 4 labeled circles) Therefore, your child is in the Autism Ballpark but not with one of the specific disorders. AUTISM is what these disorders are all called, in EDUCATIONAL TERMS. MEDICALLY, they all have different terms applied to them based on the criteria in the DSM-IV.[QUOTE=marilyna]It's a good thing to be PDD-NOS rather than classic Autism, right? Should I still be as worried as I was before I got the diagnosis or should I be relieved?
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Welcome!
My understanding is that the severity of the disorder determine how "good" it is or is not. A child may have a severe case of PDD-NOS that meks him "worse" than a child with mild calssic autism. In any case, there are A LOT that could be done for your child thanks to the reasearch that most of them have been done only in the last 5-10 years.
Daddy
Thanks for your comments, gtto! I'm glad that you could relate to my post, but I'm sorry that you're having a tough time with your asthma right now.
I hope that you feel better. Remember to drink plenty of water.
I hate the PDD label too...it is way to confusing for new parents and then they either have a false sense of "oh it isnt autism but pdd" attitude or baffled on how to explain it to people. I prefer ASD~Austism Spectrum Disorder" which made sense to me for some reason. I really hate the labels I get from some parents who's child is clearly autistic but are told NO he is too social he only has: ADHD, severe sensory issues , speech delays, ect and their child has no eye contact, flapping but loves to hug you:) .... and only getting services through the school
PDD-NOS IS AN ASD, AND THEREFORE IT IS AUTISM...Tzoya's explanation is on the money, in my opinion...
Doctors often do NOT want to give an upsetting diagnosis. Personally, I'd like to get rid of the PDD-NOS diagnosis, because it's not really a diagnosis at all! It's an unspecified delay in development...What the @#^$%!!!!! does that mean to a parent?
I'm a doc...Here's an analogy. I see patients of both sexes and all ages in my profession. I am frustrated with the avoidance by other docs of the diagnosis of ASTHMA. Their charts say...over and over again diagnoses like, "Bronchospasm", "Wheezing", "Allergy induced Shortness of Breath", "Bronchitis with Bronchospasm". Now it IS possible to have wheezing, or spasm in the breathing passages, or a severe allergic reaction that causes tightening in the chest and difficulty breathing...And NOT have asthma. But when I meet patients whose medical record has recurrent mention of symptoms associated with asthma, I look for asthma. I ask the questions, do the tests, prove it and diagnose it. Once someone understands that they have asthma and that their symptoms can be controlled or even prevented, life gets a whole lot better. No parent wants to hear the diagnosis of "asthma", but I can't tell you how many times parents have thanked me and were ultimately relieved because the fear was always there and the reassurance by other docs just put off their children getting the help they needed.
Now I KNOW that asthma is a far cry from autism, but like one of the posters above said, if it looks like a duck and acts like a duck, and sounds like a duck, it is a DUCK! Quack! Don't as a physician diagnose PDD-NOS because you think it will somehow be better or easier on the parents...I think it's just confusing and upsetting and I'd rather say AUTISM or an ASD. But this is just my opinion.
Sorry for the length...And I hope I didn't offend anyone.
Andrewsmommy:My son was also diagnosed with PDD ealy on, at 16 months. He is 28 months old now and doing well, although he still stims a lot. He has been in speech and OT and EI and ABA for almost a year now and is pointing, having extended eye contact and is starting to sign and talk so we are very pleased with his success.
Best wishes to you- I know it is hard to explain AUtism especially to those who don't know much or anything about it. I love it when they say "He doesn't look autistic" especially when they know nothing about it! Like you look a certain way when you are on the spectrum!
You will probably come up with a few ways to explain PDD-NOS, as have I. There's the Elevator Intro, the Inquisitive Aquaintance, and Friends & Family.
My elevator explanation (very quick, between two floors) is:he shows some definite signs of autism, but not enough for the docs to consider him "full bore" autistic. Still needs intervention, but we are hopeful for his future.
My inquisitive aquaintances get a slightly better picture, and I always "market" Cole's strengths. I see every kid out there as a potential friend. With the parents, I do the elevator intro and also mention that he IS social, just still in parallel play developmentally. I name-drop Bill Gates, Keanu Reeves, Albert Einstein, etc as people REPUTED to be on the spectrum. Marketing.
And for friends & family, I explained that there are 5 PDDs: two pretty bad that they've probably never heard of, next there's autism, then there's aspergers, and finally the PDD NOS catchall bucket. Aspergergers is usually more high functioning a diagnosis than PDD NOS, but not always. I explain that autism is a spectrum, and that some researchers even consider ADD and ADHD. We don't know what to expect for Cole's future, but the more we bust tail now, the better his odds. Again, I point out his strengths.
Hope this helps...you'll be more and more proficient with your own scripts as you go along. I hate to have to say to another parent, "welcome to the club" because it means your childs got some sort of hitch in his giddy-up. But what the heck - welcome to the club!
I didn't see the article you posted fred. But I agree that there are definitely some kids who are more challenging to parent than others. In fact, I would say that my own child is often easy to parent and other times I want to just throw up my hands because I have NO idea what to do! So it can even vary within the child, in my opinion.
Gtto - thanks for your input and I'm very sorry you're having such a rough week and it's only Monday! Hope Tuesday brings better things for you!
Anyway, again I didn't want to start a controversy - just pointing out that we all have challenges and some are greater than others. But it doesn't necessarily depend on the diagnosis as kids all over the spectrum are challenging and some are less so - regardless of the sub-category they are classified in. For that matter, some NT kids are rather challenging and others aren't. I would guess my parents would say I was both! Sometimes REALLY challenging but most of the time pretty easy (until puberty hit, that is!
Also, he struggles academically much more than most kids with aspergers. So, I am not sure what to say. Only that each of our kiddos is different, and we have to do the best we can for each one. And that is different for each one.
Don't feel horrible, I just have a visceral reaction to articles like that. I know some kids are harder to parent than others (I was not particularly easy myself), and I'd have dealt with it okay if the parent in the article had had a kid similar to the kid in the article, but minus the awful attitude of the parent.
snoopywoman I agree you have a point!
I would not wish for more severity, for any of our kids, of course. But my dd is very mild thus far, and I do worry that she will fall through the cracks, or skim the surface of qualifying for getting help, so she has to fail repeatedly to get help ...
Not to mention: it is the parents of the high-functioning kids who get called "nuts," for all their worries.
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fred - no offense taken whatsoever. I do agree that there are challenges on both sides. And there shouldn't even be sides. But I do think that sometimes kids who are considered HF are over-looked, fall through the cracks and don't get as much as they need to succeed. One thing I remember reading on OASIS was how few kids with AS got taught independent life skills, whereas kids that weren't as "high-functioning" were much better at these because they had gotten the one-on-one attention from an early age. Parents of the HF kids let those skills slide because they didn't want to fight the battle and they had no assistance because the kids "looked normal". So you will often find a child with AS who can't button a shirt at age 8 whereas a child with autism may be able to do it at age 6. That's just one example.
I in no way want to diminish what other people go through - please don't think I do. But I wanted to point out that AS is often not "mild". Those kids have different issues and challenges to face. NOT the same and probably not nearly as challenging as some others - but challenging nonetheless.
We ALL face different challenges and issues - and that is part of being a parent. Moreso than we bargained for - but boy do I appreciate little things a LOT more than some of my friends with NT kids! And let's not forget the kids - they are so brave to face a scary world every day where everyone else seems to know the rules but them!