Diagnosed with PDD-NOS (misdiagnosed ??)

[myson2010]

Hi everyone, today my son was diagnosed with PDD-NOS, I seem to be in a bit of denial not sure. I had a normal pregnancy and during his first year he met all of his milestones on time. From after one years old to two he suffered from ear infections about every month and finally by 2 yrs. 2 months he had tubes inserted to drain fluid out that impaired his hearing. at 18 months old we started speech therapy because of speech delay but we did not see any improvement until after 2 months after his tubes being inserted. and today at 2 years 6 months he is diagnosed with PDD because of minimum verbal skills. I am waiting for the actual report to come in to see what are the areas of concern are since while they were giving me the diagnosis I could not think much because I got a bit emotional. He plays well with others and does not have any repetitive behaviors?? and that is what I though that autistic kids struggled with?? being that he has a severe speech delay I really though he was going to be diagnosed with some sort of speech problem but not PDD. He does respond when I speak to him and follows commands. I am so confused thanks in advance for any advice or thoughts. 

[fizgig]

Well, obviously no one here can tell you what is really going on with your son!  I have met parents genuinely in denial about their children's issues.  I have also seen young children given a misdiagnosis only to eventually figure things out many years later.  So either case is possible and I don't know enough of about you or your son to help you there.

However, I'm happy to share our journey.  Our son has a severe language disorder and is not on the spectrum.  DS just turned 4 and it is clear now what's really going on.  However, when he was 2-3, it was VERY hard to tell what was going on with him.  Between Early Intervention in 2 states, the school district, and 2 private speech therapists, and a developmental ped, our DS was evaluated 14 times (!!!!) between the ages of 2 and 3.5.  The dev ped with EI said that, were she giving us a diagnosis, she would have given our DS a PDD diagnosis based on his "autistic-like" behaviors.  That was based on 25 min playing with him.

The red flags she saw were - not responding well to his name, not giving her good eye contact, plus he had severe language delays.

HOWEVER, every other expert we saw was much more confused by his mix of issues because he had no restricted interests, no repetitive behavior, is very social, uses gesture appropriately, reads social ques well, etc.  And it turns out that many kids with speech delays, when they are young, can display some "autistic-like" behaviors that might confuse evaluators unfamiliar with language delays. As our son's language improves, his red flags have all gone away. 

Likewise, any evaluation is simply a snapshot in time and depends on SO many things.  How you DS felt that day, what kind of eval was done, the biases of the evaluator, etc.  I've learned to take them as one voice - and I think you need a chorus to really get a sense of the song.  To muddy the picture even more, even the experts can't agree what the criteria for Autism should be.  There are wide ranging changes currently happening with the diagnostic criteria because there is growing evidence of widespread misdiagnosis based on confusion about the criteria. 

All this is to say that, if you have doubts, I HIGHLY recommend getting another eval.  I would also stress going to a highly regarded developmental pediatrician that does NOT specialize in any one thing.  Hope that helps :)

[Linda on the move]

Hello and welcome to mothering.

I have a DD who is 16 and is on the high functioning end of the autism spectrum. She has had different diagnosis at different times, and for awhile, had the diagnosis of PDD-NOS. It isn't the same as classical autism. It means that the child has some of the same symptoms as autism, but not enough to be diagnosed with autism. Which symptoms vary from child to child, so two different kids with a PDD-NOS diagnosis can be VERY different from each other. However, they tend to be pretty high functioning.

Does your son have any sensory issues? Does he have trouble with textures, sounds, etc?

What sort of specialist did the evaluation that lead to the diagnosis? There has to be more going on that just a speech delay for it to be accurate. Do you know when you will get the full report?

Diagnosis are odd things -- I think getting evaluations is really important for the information they provide, but the same child can present different at different times, and with PDD, not all doctors agree on exactly what counts or how extreme a issue needs to be to quality.

And it is all such a spectrum. Lots of kids with PDD-NOS/ high functioning autism / Aspergers attend general education classes at school with some pull out services for extra help (such as more speech therapy). My DD just started at community college. In a way, I've always hated this diagnosis because the word "pervasive" feels very heavy to me. My DD is different and quirky and on the spectrum for sure, but she is bright, happy, and a very wonderful person. Having a "pervasive" delay isn't stopping her from building a life for herself that really works for her.

[SpottedFoxx]

Hi there :)  Sounds like my boy.  I believe a number of doctors will throw that diagnosis out there when they know "something" is going on but isn't quite sure what it is.  It gives parents the ability to get their kids services with little push back.  My son has been on and off the spectrum (with a PDD-NOS diagnosis) so many times it's a miracle we don't have whiplash.  He presents as being on the spectrum when he first meets a specialist but after about 20 minutes, it's obvious he isn't on the spectrum.  So... they were at a bit of a loss.  At 5 years old, we did genetic testing and discovered he has a genetic deletion (16p11.2) that causes autism or autistic like behaviors. 

I know how overwhelming this is but keep in mind - a diagnosis is just a bunch of words.  It doesn't matter what they call it as long as your child receives all the services they need.

[myson2010]

thank you Fizgig, I appreciate the input. Today I signed him up for twenty hours of therapy weekly. so I hope that helps. yesterday I cried all day about my boy, but today I have become determine to find him services and not let him get lost within himself. As much as I prayed and cried for this diagnosis to go away, its here infront of me. My son deserves everything I can offer him and I will. I pray that we can move forward and that he can learn to talk as soon as we can get that far, we will then set new goals for him. My son has very limited speech, and does not always respond to his name or gaze in people in the eyes all the time like typical kids would. Prayers and therapy. 

[earthmama4]

Speech delays alone would not, by themselves, give a diagnosis of PDD-NOS. There must have been some other symptoms. There are 3 areas they look at - communication, social skills, and behaviors. There must be a certain amount of symptoms in each area for a diagnosis of autism. If there are several symptoms but not enough to qualify for a full diagnosis, then the label of PDD-NOS is given.

 

Please check out this website https://www.firstsigns.org/ especially the ASD video glossary. We tend to have a certain image in our heads of what autism is, but this is very good at showing some of those more subtle signs that tend to be missed.

An example that I can think of is something called "shared attention". This is when a child sees something new and interesting (or scary) and checks back visually with the parent to see the parent's reaction. They might look at the toy, look at the parent, then back to the toy, etc. My extremely high functioning, very verbal kids never did this, they'd just stare at the toy. They might even say, "Wow! Look at that cool toy!" But they never looked back at my face to see my reaction. Probably because it would be meaningless to them, since they can't really read facial expressions (I only know this now they are older!)

I have two with a diagnosis of PDD-NOS. They are as different as night and day from one another! And they pass off as pretty "normal" in regular life. Neither have an IEP or extra services at school. Most people find them bright and delightful, and they are! But they do need a certain type of parenting and an extra measure of patience and for me it helps to know they have a different way of thinking and making sense of the world. For that reason, I am glad for the diagnosis. 

[myson2010]

Hi Linda, Thanks for all the information. my son does not have any sensory problems right now. He has minimum language skills, does not gaze a people all the time but he does have vision problems so at this time is hard to tell if it is the vision problem or the PDD. He scored right on target with his cognitive and is to age in fine and gross motor skills so its hard to know for sure whats going on. you are right diagnosis is trickey but time will tell. congrats to your daughter:) I hope to get the full report very soon.  again thanks. 

[myson2010]

spottedfox, thank you for the information. You are so right that not all doctors agree on what PDD really is ? as confused as we are I think they are too. I am also going to do some genetic testing and an therapist that works with children with vision problems is going to work with him. so we are trying to get all the services we can so he gets the best outcome, I pray for speech for now.   what has been the last diagnosis for your son? if I may ask?

[myson2010]

thank you Earthmama for the website I will check it out. shared attention seems very interesting, I have to pay more attention to my boy to see if he does that. Yes I understand that they look at communication, social and other behaviors which I can see where my son fits but seems very mild right now. guess i will learn all this as we go forward with this diagnosis. I really hope my child is able to attain as many "normal behaviors" what ever that mean... as possible especially learning and being able to use what he learns. today I am feeling less sad and more positive on his outcome, cant wait to start this intensive therapy for the next six months and see how he does. No matter what I absolutely love him as before and I am getting him all the tools he needs to succeed. 

I WANT TO THANK EVERYONE WHO HAS BECOME PART OF THIS THREAD!!! GREATLY APPRECIATED. PLEASE CONTINUE ANY COMMENTS OR ADVICE. I WILL POST HIS ASSESSMENT SCORES AND HIS PROGRESS. 

[myson2010]

Do I have to quote in order for all to be able to read or get reply of thread? Im new at this please let me know. thanks 

[Linda on the move]

Originally Posted by myson2010 

Do I have to quote in order for all to be able to read or get reply of thread? Im new at this please let me know. thanks 

no, you don't have to quote.

Anyone can read the thread, whether or not they have posted.

If someone has posted, they are "subscribed" to the thread. The way that works depends on how they have their User Preferences, and I'm not sure what all the options are. I just check my subscriptions first to follow up on threads I've already posted to before looking for new threads. I think some people can set it up to get an email notification every time there is a post to a thread that have posted on.

When does he start his new therapy? What kind of therapy is it?

[myson2010]

thank you Linda, my son starts therapy within the next 2 weeks hopefully sooner. He starting with Applied Behavior Analysis Therapy and will continue with Speech Therapy, I hope it works and I start seeing improvement. What kind of therapy did your daughter get? did it help? and how long did therapy take? 

[heatherdeg]

My ds is 9yo and his delays started at (or rather, were noticed by a new doctor) at 8mo.  We have been through a. lot.  So here are the things I would throw out there...

First, speech delays alone don't dictate a PDD-NOS dx.  And really, insurance companies generally won't even accept an autism spectrum diagnosis on a child under 3yo just because there are SO. MANY. other things the symptoms can look like (including "slow end of normal").  So I wouldn't panic.

You noted that he's getting 20 hours of therapy/week... which is pretty much an autism spectrum therapy schedule.  Worthy of note that often, the people evaluating are the people who provide therapies.  Conflict of interest much?    And really, it's not like it's going to be harmful to them, but as a mom who was authorized 20 hours/week and took 14 (because I caught onto that whole conflict of interest thing and had 2 years already under my belt in "the system"), I can tell you that it will interfere with the normal course of FAMILY relationship development.  Now, if your child NEEDS 20 hours of therapy/week... obviously their development is worth that sacrifice.  But if they don't, it's really hard.  We had years of speech, OT, OT-feeding (well, months of that), relationship, ABA, AVB and so help me I can't even remember what else.

ABA is generally not for kids with speech delays... so I'm more wanting to know who diagnosed this child at this point.

Vision problems can mimic both spectrum symptoms (and ADHD for that matter).  What is the diagnosed vision problem and who diagnosed it?

Last, put the issues aside and really think about how you feel when you're with your son.  No diagnosis will change that.  You've just been dealt a horrifying blow, but when you catch your breath and are able to step back with a clearer head, you might find that you disagree with some of what they're saying about your son--and seek out other opinions to get a better handle on what's what... kwim?  Take some time to process all of this, but I'm hoping you can get out of panic mode and into "mama kick-butt mode" soon.

Hugs, mama

[myson2010]

Thank you heather for the information. Based on the child psychologist the dx was based on poor eye contact, speech delay and poor social skills, there were things they were looking for that he did not do, we were there for two hours for assessment so she said she would type a detail report and mail it to me which I am still waiting for. Right now I don't have any out of pocket expenses for therapy and might not even choose the same clinic who diagnosed him so hopefully no funky business. I figured we start therapy for six months and get reevaluated ?! I am getting a second opinion next month at a different hospital just to make sure.

[myson2010]

My son has Duane syndrome means he was born without the sixth nerve in his right eye so he can't move that eye towards his nose it affects his vision where if he does not tilt his head he sees double vision. My 11 year old has it too but his body compensated at a very young age (6 months old) where my two year old just started started compensating. He was diagnosed by a pediatric eye doctor (specialist)

[myson2010]

I question this diagnosis because he may not always gaze because of his vision problem? He had ear infections and fluid in the ears from the age of one to two which might have delayed his speech and as far as social, his my third child and he plays with others at this age just like my 11 and 15 year old did with others not much different and my older ones did not have problems as a mother all I see is the speech delay as a problem right now but please do not misinterpret my denial ?! Maybe ?! I will still get him services and offer him the best therapy. Time will tell if this diagnosis is correct. It is frustrating to think that even doctors can't agree on a lot if things but this is our journey and we have to take the ride. Thank you appreciate the feedback makes me feel at ease I can hear from parents that are going or went through this.

[EarthRootsStarSoul]

It sounds like his major problem is speech delay, and it is great that you are providing him with speech therapy.  Look at it this way, regardless of whatever causes a child's delays, helping them catch up with therapy/tutoring/whatever is what you are supposed to do.  Maybe by next year, he will be all caught up, and his diagnosis can disappear.  Or maybe his delays will continue and his diagnosis will be more firm.  It is very hard to diagnose a child under three with autism, but it's better to catch it early so therapies can begin right away.  It's a matter of qualifying a child for therapies--if you call it something, then you can provide therapy for it.  You may be in a position where you just have to sit on 'not knowing' for the next couple of years.  And your son might have one of those maddeningly borderline cases of mild PDD-NOS, where you are always questioning whether it applies. 

[fizgig]

Whew, there is a lot I want to say here, but let me start off with the qualifier that this is all only my opinion and I know some will disagree.  After our own journey I have strong feelings about some of the ways that special needs/early education services are set up and applied.

There is a very good reason that many people (especially insurance companies and some schools) won't accept a PDD-nos diagnosis given before 3 years old and that is because it is SO hard to tell what's going on at that very, very young age.  Especially since a number of things can look very similar.  So, yes of course the evaluator looked at social and behavioral issues, but to be perfectly honest, those mean nothing at such a young age.

When a child has a language delay, there are, of course, other delays because so much cognitive stuff happens in terms of language.  With our son, when all language simply sounded like white noise (I often imagine the Peanuts cartoons where the adults sounded like "wha whaaa wha whaah whaa") of COURSE his social skills were delayed.  So, for example, he didn't respond to verbal anything, because it meant nothing to him.  Likewise, learning social rules and back and forth communication is VERY sound/language based unless there is concerted effort to encourage non-verbal back and forth.  What I mean is that children with language delays often have the exact same social/emotional delays as children on the spectrum. 

The key differences are VERY subtle and often difficult for anyone to see until the child is older.  So, some of the key differences can be joint attention.  Does the child still want other people there, do they point, want to share excitement?  Do they look to see if the parent is nearby?  Do they want the parent to share their experiences?  Another hint is their ability to read social cues - do they social smile?  Do they respond "appropriately" to emotions?  Also, use of gesture - do they point?  Wave?  etc.  Finally, the lack of repetitive behaviors is also a sign.  So, children genuinely on the spectrum often have physical/behavioral issues that go with them - things called stims (self stimulating behaviors) like head tilts, hand flapping, etc.  

Last Feb in Pediatrics journal there was a report that got a lot of press suggesting that up to 40% of children given a PDD-nos diagnosis before the age of 3 lose that diagnosis by the time they are 11 suggesting that many kids given that diagnosis are misdiagnosed. 

None of this would matter except that some experts believe (and I believe) that the kinds of therapy often used for children on the spectrum can be counter-productive for children not on the spectrum.  Especially ABA therapy.  It REALLY depends on who is doing the ABA and how they are doing it and I would recommend that you find out details. 

Here's WAY too much info about ABA, sorry to dump all this on you when I know you are already confused and emotional but I wish someone had laid this all out for me when we were first starting our journey.  I tell you this because the experts we spoke with made it seem like ABA therapy was 1. the ONLY real approach and 2. always clearly the "best" therapy.  Neither of those turn out to be true. 

ABA was developed by Ivar Loovas at UCLA (where I did my graduate degree) to help almost entirely non-functional people.  He conducted his experiments on those with the most severe "classical" autism as well as on people with debilitating mental illnesses.  It was based very much on the same "behavioral training" principle that Pavlov used on dogs.  Give a treat when a person does the "correct" behavior and punish the "bad" behavior, and they will do the good behavior more and the bad less.  It is very effective, and clearly worked (and studies support that it works for children with severe "classical" autism).  Loovas even used punishments like electric shocks, etc.  The main reason they used the reward/punishment model was because people on the spectrum tend to have no intrinsic social motivation to learn appropriate behaviors.  So, a neurotypical child learns not to climb on the table because they see that no one else does it and they have the internal desire to be like others.  With a child on the spectrum, they need some other motivator not to climb on the table (an association with a reward when they don't and a punishment when they do).  That's a simplistic example, but that is the basic theory behind ABA.

Over time most ABA therapists dropped the punishment part all together (though some still very rarely do use punishment).  But the reward for good behavior model is still the heart of ABA and many, many psychologists and therapists think that is a poor model to rely on when trying to help children learn complex skills such as social interaction, language, etc.  In fact, almost all of the studies done on ABA have focused on relatively severe ASD children, so there is very little data about the long term impact of ABA therapy on children that are high functioning on the spectrum, and there is NO data on the impact of ABA on children not on the spectrum.  Now, most of Lovass' data is actually being questioned, so his "amazing" results are very questionable. 

Dr. Stanly Greenspan is probably the most famous critic of ABA, but there are many more out there (Dr. James MacDonald and Dr. Stephen Camarata are two other big ones).  They argue that the way skills are taught during traditional ABA therapy do not help a child learn social communication and, in fact, can hinder the development of natural language.  Instead, they promote naturalistic, play-based therapies such as "floortime" DIR (Developmental, Individual differences, Relationship-based) approaches.  They argue that these kinds of therapy focus much more on helping children learn the much larger skills of social communication and interaction.  They also suggest that the discrete, regimented approach of ABA can actually discourage natural social communication in children not on the spectrum.

This all gets much more complicated when you look at the ways that ABA is currently done.  Some people still use very traditional, sit at a table for a set time, discrete skills "training" while other therapists have adopted a much more naturalistic, play-based interpretation of ABA.  I'm very sad that they call all of those approaches ABA because they can be VERY different.  So, what one person calls ABA might be a mix of floortimey, play-based and some behavioral training while another might be very strict behavioral training.  The only way to know what kind they are offering you is to ask!  The other confusion is that, for some kids, a traditional ABA approach really IS the best therapy.  I think it can be hard to tell what will really help your child. 

There is some data to support the floortime approach, but not many studies have been done so, like I said, this is just my own personal interpretation of the data that does exist as well as my own experience. 

Just to give you an idea of why I think this all matters - our son was placed in an ABA based preschool when he was 2.3 by the dev ped who told us he was "autistic-like".  The school had NO free-play time and was VERY structured including a 30 minute circle time and a 30 minute "work time" at a table where the 2-3 year old kids were expected to sit and pay attention the entire time.  Everyone told me this was the "best" thing for him and, despite my own negative reaction to the way it was set up, I kept him there for about 6 months and really, really regret it! 

First off, the other children there were very non-social, and I watched our DS try repeatedly to engage them in play.  After a while, he just gave up and I think he learned that children are simply non-interactive.  It took him almost a year to unlearn that and try to interact with kids again.  His one-on-one time with the therapists became very negative and way too structured for him.  He was isolated alone with one person, not allowed to get up until he finished each task given to him by the therapist, and he grew to hate it.  He began to shut down socially and emotionally.  They also advised things like "when he takes off his shoes and you don't want him, shove them back on and use duct tape to secure them." uh, way to destroy his trust in me and my willingness to help him. 

Anyway, we had a VERY negative ABA experience.  I know many others have positive experiences and that the kind of ABA therapy they get is very different than what we experienced. 

Now our son gets speech therapy and floortime therapy 5 hours a week and he is thriving with this approach. 

My big point being that you know your child better than anyone and you should definitely pay attention to how your child responds to specific therapies (and even to specific therapists).  I wish SO much that I had listened to my gut (and to the messages out DS was clearly giving me) and looked into floortime or alternative therapies loooong before I did.  I think we would be much further along.  I also wish I hadn't simply gone with the PDD-nos suggestion when it was given so young, especially when I had such strong misgivings about that diagnosis when it was mentioned. 

Sorry this is so LONG! I really hope it isn't too much info and that it helps in some way. 

[aspeechthx]

Originally Posted by fizgig 

Now our son gets speech therapy and floortime therapy 5 hours a week and he is thriving with this approach. 

 Yea Floortime! I am a big supporter of relationship based therapies: Hanen, Responsive Teaching, Communicating Partners...

Please consider Apraxia as you are looking at reasons for delayed expressive language along with poor eye contact. Obviously I do not know enough about your child to make any diagnosis but often kids with apraxia are misdiagnosed. Apraxia is a motor planning issue, where the child cannot coordinate everything that we take for granted (breath support, jaw, tongue, lip movements...) to make speech happen. Most of the time these children have typical receptive skills but they cannot express themselves. Not all speech therapists are trained in early intervention and not all EI therapists are trained in Apraxia!

[myson2010]

thank you aspeechtx I will definitely keep that information in mind.