THe boys first dev pedi that they saw on a regular basis before we moved said there was an overdx of ASD too. She studied with top names in autism, I have been thinking of contacting her and finding out who that was. She did not believe in PDD-NOS. To her either you had autism or you didn't. And if you didn't fit all the criteria for autism you didn't belong in the diagnosis. Usually it was something else but they just had to have a label so they got the PDD-NOS label. She refused to do that. I am oversimplifying it but it was something like that. I wish we could go back to her.
We too were told something similar. But we were told that the brain is not static, it can and does change and that vast changes may take place between 2 - 4. Specifically I was told that a child may walk into an office showing some symptoms of autism but these may disappear by the time he is 4. Autism is a lifelong disorder. Thus if your child did have it, he would be affected in some ways throughout his life. If, however, his symptoms are no more, it is likely he never had it to begin with. Greenspan says there's been an overdx of ASD, a confusion between regulatory disorders and true ASD. Maybe that was the case with you son too?Well, Nicholas was Dx with PDD-NOS around the age of 2 , about 5 months ago the dev. ped said he is more aspie then ODD but said he no longer hits all the criteria of PDD or autism. But I had her still give me a dx of PDD because If he didn't he would not get the help he needs in school . She agreed that he would benefit from more OT and speech, so she still dx him as PDD_NOS with the new ADHD dx as well.
I would feel really optimistic, and work on that speech!My son had a visit with his developmental pediatrician yesterday and i was shocked when the doctor told me my son is coming out of his autism spectrum and that all that is left is his speech and thats what he needs most work on. That if he would've met this child today for teh first time, he wouldnt be under any autism dx. My son is PDD NOS, not even under that category he fits anymore. I was just shocked about the whole thing. He said the that little repetitive.bad behavior he has is whats left of his autism besides the speech which is like 1 year behind in terms of expressing himself correctly. Thats the only thing holding my son back.
What is your opinion about this? .
What matters is the fact that he has progressed so much that a Dr even believes he is out of spectrum now. I think even if he is not, you should celebrate. Everybody to some extent has some autistic behaviors.
Daddy
P.S. How old is he exactly?
I apologize - I didn't mean to come across as a doomsayer. It is GREAT to hear such progress! However, I think at your son's age you need to keep the diagnosis for a while just to make sure this progress continues. Like someone else said - when they hit kindergarten and elementary school the differences may become more glaring. They may not - but that is what you need to wait for. Issues may surface again in puberty as someone else said. It is just good to keep a watchful eye.
Also, if you give up IEPs and services now it is sometimes difficult to get what you want back into place. Not always, but after all I have fought for I am VERY reluctant to give anything up unless I clearly see he no longer needs it.
I guess I too would hold off on taking that diagnosis off. I heartily disagree with the doc who trained with experts in autism not agreeing about PDD-NOS. I am SOOOOOO thankful we got help when we did and if our doc had thought that way - well, I don't want to think about where my son would be right now if we hadn't. The social skills he learned in the last year - well, they didn't get there by osmosis or just "growing/developing" on his own. They came through a lot of hard work both on our parts and the teachers that ds had at both Head Start and ECSE.
Please remember that there are LOTS of schools of thought about diagnosing. I liked what our dev ped said. His comment was, "Well, there are a lot of docs out there who want to hold off on diagnosis and 'wait and see'. However, they also talk about early intervention being key. Well, if they TRULY believed that, they would walk the walk and give diagnoses to these kids so they could GET early intervention. If getting early intervention results in the child eventually having the diagnosis taken off - well, that is great!" He said he had seen a lot of kids who were borderline and he saw great improvements in those who got a lot of intervention and saw no progress in those whose parents chose not to go that route. Of course, this is progress as defined by an NT doc - but he does specialize in autism and is very well-respected in his field. I do agree that if a child's diagnosis is "taken off" that one of two things has happened - one, s/he maybe should not have had the diagnosis to begin with or two, the child has learned to "cope" (fake it). The second option may result in a child who eventually explodes (thanks bullet for helping me understand that better!) because it is so much stress in "covering" for so long.
Anyway, those are just my thoughts - you asked!
I have heard and know of people who have done this, HOWEVER only those whose ORIGINAL DX was PDD NOS. BE GLAD! What I have heard is that those with PDD NOS have some of the symptoms of autism, but do not qualify for 'having full blown autism,' and occasionally 'outgrow' the symptoms they have.........so rejoice, work with your angel, and hope and pray for the best!Hooray! I know you are scared to to believe this new information, but just celebrate it! Maybe your son is pulling out of it...it is not completely unheard of.
When Cole was little, we (including the docs) still thought he had a preemie hangover (he was 14 weeks early & very sick). He is very affectionate and giggly, verbal too. His conversational language & social interactions with other children were the 2 sticking points.
Nobody even suggested autism until a speech therapist mentioned to Cole's speech gal that kids who can talk but can't converse are often PDD NOS. She never heard of it, but that's how the topic of autism was raised with us.
My meandering point is: we had doc after doc say he was not on the spectrum. But now that he is 6, it is much easier to see that in fact, he is. He has started to do some stereotypical hand motions and verbalizing eee-ee-eee, but none of this appeared before he was 5.
This is not to dash your hopes! It sounds like he's doing great! Just keep watching him so you can keep up the intervention.
When I was little, aside from special ed i received nothing as far as intervention, they said i was high functioning autistic but could also mix with the other kids, tho not as well as i could when i got about high school aged.Let me tell you that the doctor kept his dx as PDD NOS of course. He is aware of the help we get and wnats them to continue and even requested more time in speech and ot for his benefit. This doctor is wonderful, couldnt be more happier! He is the Chief of the children's hospital MonteFiore Kids , manages a center of autism call Rose Kennedy Center. I mean ,the man is an expert and even has grandson's with autism. He explained everything to me in details and tested my son yesterday and saw how my son engaged in activity with him, responded to him fast... the only thing tha hold my son back was when he asked "This is a cup, what do you do with it"? my son just pointed to his mouth. But my son knows and says what cups are for ,its just he hold back at the moment and i did tell him he did know.
For the person who asked me a few questions:
Is your son able to initiate talking on a regular basis? Yes ,he talks all day long,telling you things he does or gonna do, asking questions.
Is he able to express his needs and feelings fairly easily? His eeds, yes he is able to express them, when he is hungry,wants smething to eat and cant see it in the fridge,tells me to go buy it... if his stomach hurts, to not wipe his butt too hard cause it hurts (when he is constipated) .. when he dont feel good or sleepy.
Is he eager to tell you things he's done, or point things out to you? He tells me what happens in school , like Jordan likes power ranger, Noah is my friendmwe played in playground... The teacher gave me this or that... i color today!
Does he have a normal rate and flow of speech for his age? his speech i consider it normal when he talks... ist not sluggish,he pauses occasionally to think but not so often...
If he's describing something to you? He describes things to me . the other day he said there is 5 people in the house and mention all the names. he tells me what color of shirt a girl from class was wearing or even the teacher, he tells me if a friend has a cut or scrape...and where....
I will try to post a video later on!
"Nobody even suggested autism until a speech therapist mentioned to Cole's speech gal that kids who can talk but can't converse are often PDD NOS"
Not to confuse you, but if you look at the diagnositic criteria for classic autism you will see that under Section A there's a part that talks about having adequate speech, but a marked deficit in being able to converse verbally (I'm paraphrasing here). And some of Leo Kanner's children that he studied could tell you the names of Presidents, street numbers, colours, shapes, but couldn't chat to people, if that makes sense. They were classically autistic.
To be honest, I think that some doctors have this belief that only non verbal children can be classically autistic, when the truth is it's a lot more complicated than that.
"When I was little, aside from special ed i received nothing as far as intervention, they said i was high functioning autistic but could also mix with the other kids, tho not as well as i could when i got about high school aged.
Anyways, as i got older, my parents told me, after my final evaluation to check progress so i can be 100% mainstreamed, the dr used the term juvinal autism????!!!
as i aged, the behavior stopped, i could talk pretty well, mix, make friends and socialize most of the time. My parents said that i had just a tiny bit by the time i hit middle school, so according to them i had it, like your son, then it pretty much went away. "
See, with myself, pretty much the opposite happened. At primary school up until the age of 10 although I had differences I coped pretty well. I had a couple of children I could play chase with, or sing rhymes with, or pluck bits of grass up convinced it was itching powder
And things can work out regarding the dating. I have never flirted, never asked anybody out or told anybody I was attracted to them. I can't make eye contact a lot of the time and I don't like light touches, needing to hug facing away from the person or with my head buried in their chest. Politeness deters me from telling distant relatives that I abhor hugs and kisses from them, preferring a firm handshake. But I'm still married and yes, my husband is only the second person I've been with and the first only lasted nine weeks, but things do work out :).
THe boys first dev pedi that they saw on a regular basis before we moved said there was an overdx of ASD too. She studied with top names in autism, I have been thinking of contacting her and finding out who that was. She did not believe in PDD-NOS. To her either you had autism or you didn't. And if you didn't fit all the criteria for autism you didn't belong in the diagnosis. Usually it was something else but they just had to have a label so they got the PDD-NOS label. She refused to do that. I am oversimplifying it but it was something like that. I wish we could go back to her.
[/QUOTE]To be brutally honest I would ask them to hold fire on removingthe diagnosis at such a young age. As children grow and develop often the differences between themselves and other children grow more definite the older the child gets. To give you an example, I appeared, from the ages of 6 to 10, to be less on the spectrum than when I got to secondary school. That's not to say there weren't signs when I was between the ages of 6 to 10, there were - and enough to benoted - but the gap between me and others my age got more once I reached the age of 10/11.
What is your son's speech patterns and means of communicating like? As you know, many people on the spectrum are verbal, but it's how they speak and what they speak about that needs to be considered. Is your son able to initiate talking on a regular basis? Is he able to express his needs and feelings fairly easily? Is he eager to tell you things he's done, or point things out to you? Does he have a normal rate and flow of speech for his age? If he's describing something to you, would you focus on main areas or what appear to be minor details. To give you an example a woman I know on another board has an AS son and when he was five, if he was talking about a day of a party he would say "do you remember that day I saw the butterfly?" I do this a lot as well. Last night my husband was teasing me, saying that if I had been told that Darth Vader was my father, I would have been saying "what's that mark on your suit? Do they have safety railings here?" rather than understanding the implications that I was sired by DV
Does your son appear to have very uneven skills? Eg he might be excellent at telling you a story, but he can't hold a spoon or knife properly. Or, conversely, he might be very good at fine motor skills and with puzzles, but struggle with his talking.
So happy for youCongratulations!! Did you cry?
Sarah lost her label right before she turned 6 years old but was given a "provisional label of autism with savant abilities" I was laughing and crying at the same time
I still see issues with social and speech and know she will have some sx of autism for life but it wont have her... she is able to compensate well and learn on her own and no longer fits the criteria for classic autism any longer. It becomes harder on some days to see any issues at all but on others especially with peers it is really obvious to me that she is behind and needs much help with social skills..
She overcame so many obstacles with years and years of ABA/Speech therapy to get her where she is.. She was so affected at 3 years old and no one would believe she would be where she is now. One of my best friends saw her recently and Sarah talked to her about her vacation we were going on the following day.. and her pets and answered questions, laughed and made jokes..my friend couldnt believe her eyes and told me she was a completely different child..she remembers the child with no words, smiles or eye contact that is now telling stories, laughing and totally engaged. IT does happen but takes thousands of hours of intense therapy.
Best of luck and continue with his speech..he is still young and will achieve great progress!! Keep up the good work!!
WHEWW !!! I think this thread has been well discussed by all parties through all angles...
One thing is for sure...MosesJr_Mommy..YOU SEE PROGRESS!!! And that's what matters... A particular diagnosis opens the door to a host of benefits and intervention programmes which helps us financially. Yet a particular diagnosis also has its social connotations later on....
So where do we go from here??...we savour the CURRENT PROGRESS and look forward to FUTURE IMPROVEMENTS... Yet we are also guarded against possible future regression that may need our extra attention and action...
Again, congrats to MosesJr_Mommy & keep us posted !!!
Congrats!! Karrie I'm sorry but I have a major problem with your dr continuing to give your ds a pdd-nos diagnosis so you can continue to get SSI. I have a child with a neurodegenerative condition that continues to progress, and his autistic symptoms continue to increase. Even though we are tax payers, we get no help at all. We are currently on a never ending waiting list (4 yrs already) for a medicaid waiver, and on a 2 yr waiting list for respite, even though our family is considered a crisis family. It's cases like this that cause those that desperately need help to not get any! It's a disgrace that you think it's acceptable to defraud the government and take taxpayers money, when there are those of us that desperately need assistance and get nothing. Have you considered moving to a different state? The length of time waiting for these services seems to vary greatly from place to place. WHile it's 5 years here, in NC, I don't think the wait is nearly that long in other places - measured in months, from what I've read. I hope, at least, the school is providing you with good educational interventions. I'm sorry to hear of your predicament. My son was initially diagnosed with hyperlexia at 2y 3m but then went to ASD at 2 y6m. In my introduction, I outlined all we are doing with him privately as he is too competent to get public help. This includes aba and biomedical interventions. He fits in best with an Aspergers dx. In December the same psychologist reviewed his program and said if she saw him for the first time then, she would struggle to put him on the spectrum so we were thrilled. She came back and formally assessed him a month ago and we were disappointed that she couldn't have that same conclusion, she leaned more to Aspergers. However we are also aware we have had some 'bad patches' this year as we get into a more active chelation phase. Riley still struggles with reciprocal conversation, interacting with peers, some attention focus and hand flapping for his stimming. But he is doing much better. I too don't want his dx taken away from him as I am not convinced we have uncovered everything. I read of other processing disorders and I wonder if they may come more to the forefront when he reaches school. He has some issues with maths so I see autditory processing, semantic pragmatic, nonverbal learning type disorders and wonder if there is credibility in them for Riley. So I too am thrilled to see progress but not prepared to drop any diagnosis in case he ends up qualifying for support. We always treated her for autism since delayed myelin has no treatments other than it could get worse or better...we did give her fish oil for a year and maybe that did it...I really will never know but she got a ton of ABA and not sure if she would of progressed without it and didnt want to find out:) ..her poor little neurons needed all the help & stimulation we could give her:) Her eye contact is perfect now but not at 3 years old. I am surprised that more kids with autism dont have delayed myelin..only 2 kids on this board have it that I know of and it is so hard to research it? I think she has autism but dont know if one caused the other or vise versa? I think you and I are very lucky parents and I hope many more parents on this board will be able to say that their child no longer fit the criteria for autism..even though in my gut my child will always be on the spectrum somewhere she overcame the worst challenges of autism:) Social will always be a work in progress:) I too, think you should be very happy...it's great that you have a great doctor that doesn't want to just yank his therapy and dx away from him! Whether his progress is coming from his therapies/school or even if for some reason he is out growing it, just enjoy it...and keep up the great work! You're doing a great job!
And I too couldn't see clearly enough to tell which child was crying...was he in the back row in the striped shirt on the end? If that's him he didn't show that he was too upset...kept right on dancing!
Daddy he turned 4 in may. I uploaded the video of him dancing with classmates at their last day of school. Makes me wanna cry because everybody said, he was all emotional cause too much ppl in classroom plus he saw mommy and daddy their but he kept dancing ...so cute! he is the one you see crying at your right.
http://www.youtube.com/watch?v=5y7iW5Ndu0E I think any transitions, changes, major moves, puberty, and all else will STILL be majorly influenced by the ASD, no matter how NT our kids ever appear. Someone posted something about how our kids are most at risk when they are at a point they do merge with NT, and others fail to recognize and accomodate their coping mechanisms. I take that the single best reason to keep the diagnosis at the forefront. That said, sounds like Moses is doing GREAT and yes, CEELBRATE AWAY!!!! Cannot wait for video -- he is so CUTE! What matters is the fact that he has progressed so much that a Dr even believes he is out of spectrum now. I think even if he is not, you should celebrate. Everybody to some extent has some autistic behaviors. Daddy P.S. How old is he exactly? [/QUOTE] I agree with this. Your son sounds like he's doing fantastic! Congratulations! You will probably never know if he ever really had pdd-nos or if he actually did and the therapy helped -- and that's o.k. We live in a world where we know a lot more about what is considered "typical" development which is good because we can address atypical development. But we also don't know as much as we could about neurological development so that we seem to have very few categories for kids right now - autism spectrum disorder. It's like it's ASD or bust. My ds (age 3.8 yrs) also had his pdd dx removed. And his therapists are skeptical. But you know what - he's 100% related, tries to have a conversation (and like your ds it seems like speech is the key with my ds because my ds wants to get it out but has trouble getting from point A (thinking of what he wants to say) to B (saying it), is cultivating his play skills (and I think it's because his speech is really kicking in), and his overall body awareness is getting better (and if he isn't an athlete, I think I'll live). I'm sure my ds will march to his own beat, and may need some help along the way. I can live with that. After where we've been, I will celebrate his beat. I know plenty of adults who could have used the help when they were kids. Congratulations again. I guess I too would hold off on taking that diagnosis off. I heartily disagree with the doc who trained with experts in autism not agreeing about PDD-NOS. I am SOOOOOO thankful we got help when we did and if our doc had thought that way - well, I don't want to think about where my son would be right now if we hadn't. The social skills he learned in the last year - well, they didn't get there by osmosis or just "growing/developing" on his own. They came through a lot of hard work both on our parts and the teachers that ds had at both Head Start and ECSE. Please remember that there are LOTS of schools of thought about diagnosing. I liked what our dev ped said. His comment was, "Well, there are a lot of docs out there who want to hold off on diagnosis and 'wait and see'. However, they also talk about early intervention being key. Well, if they TRULY believed that, they would walk the walk and give diagnoses to these kids so they could GET early intervention. If getting early intervention results in the child eventually having the diagnosis taken off - well, that is great!" He said he had seen a lot of kids who were borderline and he saw great improvements in those who got a lot of intervention and saw no progress in those whose parents chose not to go that route. Of course, this is progress as defined by an NT doc - but he does specialize in autism and is very well-respected in his field. I do agree that if a child's diagnosis is "taken off" that one of two things has happened - one, s/he maybe should not have had the diagnosis to begin with or two, the child has learned to "cope" (fake it). The second option may result in a child who eventually explodes (thanks bullet for helping me understand that better!) because it is so much stress in "covering" for so long. Anyway, those are just my thoughts - you asked! [/QUOTE] My boys DID recieve early intervention. There is no intervention they would have recieved with the DX through EI or the school that they didn't get without it. They had the additional appts with the neuro, the MRI, the chromosome testing, the fragile X testing. She didn't think it was autism, that didn't mean she thought nothing was wrong. She didn't take a wait and see approach, she was still looking for the cause, she honestly did not believe it was autism. Was she right or wrong? I'm not really sure yet. But the only time having a diagnosis might have made a difference was when they reached the age of 3 and started school, but the school does their own evaluations. They may or may not have listened to a dr's diagnosis. They don't have to, and knowing that school I rather doubt they would have. THey had no programs for high functioning kids. The boys therapist said the child had to be severely effected before they would be put in an autism school. Here, Nikolas received placement in an autism classroom for next year without the diagnosis. I visited this class and there is a wide range of abilities. we received the diagnosis 3 days ago. Is it a correct diagnosis? Not sure about that either. I'm not telling the school for many reasons. The school will keep it as dev delayed until the age of 6. The only real difference the diagnosis will make is now we qualify for the insurance to pay for ABA for the next couple of years and that is really the only reason I pursued a diagnosis at this time. We are going to try it, we may or may not do it depending on how they react to it. But I'm pretty psyched about trying it. They are already getting floor time. We may apply for SSi and medicaid, but there are financial requirements to that and I doubt we will qualify. I just wanted to clarify that she was NOT taking a wait and see approach. She wanted it to be an accurate diagnosis. Thanks for clarifying. I need to clarify too - when I say "early internvention" I am not necessarily referring to EI through the school district. I just mean intervening early in the child's life. For us, that was at 3 1/2 - he would not have gotten diagnosed before that. And that is what our doc was referring to - just that he wanted people to intervene early as opposed to waiting and seeing if they grow out of it. In our state, the schools don't have to take a medical diagnosis into consideration either. However, when you have a dev ped from the Mayo Clinic writing the school district a scathing letter saying how DARE they not provide services (particularly OT) to my son - well, it can get results.
I'm sorry - I'm hoping I didn't offend - I didn't mean to. I was just responding to the original post. My son would have never received services if it weren't for his medical diagnosis. He would have never been able to attend Head Start. I wouldn't be able to get reimbursed for private swim lessons (group lessons are out for him) or get discounts for them. I'm not trying to take advantage of the system - I'm trying to lessen our financial burden as his college fund has been depleted. We've spent it on interventions, co-pays, etc. I don't regret it one bit and don't want to start another discussion on those of us who have paid an arm and a leg to help our kids function better. I haven't done ABA, I've done OT, PT, social skills, tumbling, private swimming lessons, horseback riding (not all at the same time, of course!). But, these are all costly things...
Congratulations are truly in order. It's good to continue whatever treatments or therapies you are doing but you should be very very happy...:)
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