Aspergers Syndrome??? Opinions please

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Hi, My son is almost 5 and he has been dx'd as Aspergers syndrome by his developmental pediatrician, PDD-NOS by his nuerologist and bipolar-NOS by his psychiatrist who also agrees with his aspergers dx. Im really confused not just because of all the different diagnosis we have gotten but because of my sons behavior. Me and my husband both know something is wrong but were not sure what. 6 months ago he fit aspergers to a T except he has always had ok eye contact unless hes stressed he will not look at you or talk to you with his back turned and he seems pretty very connected to the world unless hes stressed hel stomp around like a dinosaur or there are certain days he seems really off but other than that he seems in touch with his surroundings. His dev. ped. said he was too in touch with his surroundings to have autism itself so I guess thats partly why he got aspergers dx.
There have been alot of worrisome things going on with my son since he was about 2 or almost 2 such as rocking his head when hes overstimulated or tired, constantly sucking on his 2 middle fingers, the urgent need to rub only my elbow with few exceptions if not he will throw a tantrum, rare tantrums that seem like hes a wild animal that come out of nowhere and then followed by guilt him crying apologizing (which started last year), sensitivitys to textures of clothes, foods, sunlight (rarely) and loud/sudden sounds and will run away and has almost gotten hit by a car. Overstimulated in loud/crowded places like family get togethers he would get agitated, yell at everyone who approached him or looked at him, cry, retreat or put himself to bed in a back room or want to be carried by me and he would squeeze his eyes shut and rub my elbow and suck his fingers while rocking his head, not want to be hugged or touched by others except mommy, woudnt acknowledge daddy, not potty trained and poop on the floor and play around it because hed rather run around naked all day long (altho he wears clothes outside he complains they hurt on occasion), slaps and punches himself when he gets frustrated or angry about something (never seriously hurt himself but makes himself cry on occasion which is really weird), he has a short temper and when he gets angry says horrible things like "Im going to crack my head open" or "I dont like myself" and breaks/flies his toys, likes to line things up and categorize things with thier families and get excited seeing things that are the same (same type of car in parkinglot etc.), hes very emotional and cries easily and is very moody, dislikes trying new things, appears to be seriously deaf but this is rare but pretty freaky and more often you have to call him quite a few times because hes into playing or something but he does look but alot of times he looks right away too.
Hes afraid of bug esp. spiders and will freak out and is paranoid that they are crawling all over the floor or crawling up from under the couch and touching him than running away and hiding and talks about them often altho he loves catching those little black bettles in cups, does a pretend fluency or sound when hes playing dinosaurs like "Zzz Zzz Zin!" or hel come up to us and talk gibberish all in our faces even tho he has an excellent vocabulary he also seems somewhat disoriented when he does that too kind of euphoric too. He has trouble answering questions or telling us about his day and it seems he has trouble comprehending whats being said to him often. Hel go off about something else or totally not understand whats being asked of him. Ive caught him finger painting with his poop on an occasion and didnt seem bothered one bit by it altho ive heard thats normal but the moms ive talked to thought it was strange. Hes a very picky eater and lately will take turns living off of frozen waffles or peanut butter and jelly. He gets these days where he seems depressed, indecisive, mood and just plain miserable where nothing at all helps. He is moody in general but he has a very cheerful disposition and is a very friendly kid and goes up to anybody and starts talking/laughing with them but he is still very moody if that makes any sense at all. Hes obsessed with dinosaur and talks about them all day long and will go around stomping like a trex all day long and some days it seems hes literally lost touch with reality and scares me. He also loves eggs or rocks shaped like eggs, collecting feathers and plastic dinosaurs.
He has never been one who was really strict with routine or got upset if you moved furniture around but if I do get him into a routine he picks it up quickly and that seems to cause more problems i feel. When he is upset about something he will throw a tantrum if i exit the parkinglot the "wrong" way or go a diff way home and he throws a tantrum when i go to our new drivethru starbucks because he wants to go to the old "white starbucks" and he says horrible things like hes going to get out of the truck and run into the street and die. He also has infrequent seizures. Is flat footed on his right foot and his left turns inward so he wears arch supports for now. He also has alopecia areata on his right temple.
And altho he may sound like an extremely horrible difficult child to deal with he is very pleasant and loving and caring of others and smiles alot too. The problem is that his problems seem to flareup than dissapate and he has a few good weeks with minor problems than he has a horrible few days so its sporadic and sometimes he seems almost completely normal! I dont understand!
Of all the above things ive mention he still does them except he rarely rocks his head anymore, he dosnt stomp around as a dinosaur nearly as much as 6 months ago and he actually has better conversations as far as not rambling on and on about only dinosaurs. His give and take seems alot better and i think it has to do with him being in preschool too. Hes been keeping his clothes on sometimes at home or at least his pullups on, he acknowleges his dad and actually cries if he leaves without giving him a kiss goodbye, sunlight dosnt bother him as much, he dosnt get overstimulated like before he gets hyper instead but he goes up for hugs without being asked and talks at get togethers, he likes trying new things more and dosnt line things up as much as before. He also has gotten better playing with kids because before hed get in thier face talking gibberish or about dinosaurs or he would just start acting like a dinosaur right off the bat. I think preschool has helped tremendously. We also had him in OT and I was taught the wilbarger protocol which has helped alot and i am only doing it when he needs it which is rarely now but I took him out of OT because I feel he needs something more that helps with his sensitivites and they wernt. Also he dosnt suck his fingers in school because he said a little girl he likes might see him.
He has a few other problems thats popped up like him feeling a hair on his tongue which comes and goes and so he goes around spitting all day long. A few months ago he was certain his toys were starring at him and getting mad at them and scared and he thought there was a face and an eye on his tv looking at him (which was turned off) and he kept coming to me and telling me someone touched his knee and thought it was a ghost or maybe a spider and he was paranoid of spiders he was sure he saw crawling all over the floor. Hes been having problems in school that I dont understand because besides the beginning of preschool where we thought he might get kicked out (private school) he got better besides a few bad days here and there but lately he has seperation anxiety and wants me to stay and he does fine, if i dont I get calls to pick him up because hes being disruptive, throwing his shoes, yelling at the kids to keep thier jackets on or because thier siting in his (unassigned) seat etc. or hes hiding under the tables and wont come out or hes bouncing off the walls or his teacher said hes really paranoid.
Im actually very worried about kindgergarten comming up if hes having trouble in preschool already which is only 3 days a week for 2 1/2 hours, but we got him tested by the school twice and he didnt get any services because his social delay was moderate and they felt I just needed to take him to the park more (which I took him all the time!) and they felt his speech comprehension was a result of him not knowing answers to questions so he goes off and talks off topic to distract. Other than that they said hes fine and they dont think he has autism at all because he was able to sit at the table with them (he did have a really good day that day).
Is this aspergers? I understand he has alot of symptoms but reading about other things such as bipolar alot of the symptoms overlapp and im really confused. Not to mention his really bothersome symptoms seem so sporadic I dont understand. Thanks for those whove made it this far Please give me some opinions. Thanks!
ETA: He has been on trileptil for his seizures which doubles as a mood stabilizer and has worked wonderfully in his mood area because he used to be much, much worse than he is now in that department.

Last edited by Nikki03 on 28 Mar 2008, 2:14 pm, edited 3 times in total.

Hi and welcome!
A long post - only time for a quick reply.
It sounds like AS or PDD-NOS, but I would be dubious about bipolar. I read up on it, and the symptoms seemed to fit my son about a year ago (seperation anxiety, meltdowns ect.) and asked his psychiatrist, who said bipolar was extremely, extremely rare - and that all the same symtoms could be covered by AS/ADHD, or psychological effects of these.
The psychiatrist, BTW, is one of the best in my area.
What were the bipolar symptoms, were they medicated, and did that help? I don't believe just feeling depressed/down is enough for bipolar. Kids of 5, I think, would have symptoms very unlike those of adults.

Perhaps it is time to work backwards: how would applying label X or label Z help you parent your child?

A diagnosis is only worth what it can accomplish for your family. If you have the wrong diagnosis but it helps your family to act as if it is the right one, then it doesn't matter one fig that it is technically incorrect.

A diagnosis of Aspergers is likely to allow your child to access services at school that will be helpful to him. Accommodations for his sensory issues, special help in problematic educational areas, speech therapy, occupational therapy, lunch bunch, etc., as determined by the school for your unique child. However, in some districts PDD-NOS gives you better access, and Aspergers only gets you accomodations. So, work backwards: what services and accomodations do you think your child will need at school, and then pick the diagnosis that will get him those.

For now, I would set aside the bi-polar diagnosis, because I am not aware that gives you access to anything useful. ISn't the standard treatment medication? I would avoid medication; I have read so many negatives about psychiatric medicaitons and children. Plus, while I may be incorrect on the standard treatment, I think it could be important to spend as much time as possible understanding your child's sensory issues and triggers, and jumping into medication could interfere with this very necessary process. Often the tantrums, etc. are manisfestations of sensory issues the child cannot handle. You need to work on solving that puzzle first. I can easily imagine a spectrum child's sensory issues causing him to present as bi-polar, when the real problem is external, not chemically internal.

Regardless of any diagnosis, every child is different. When you find out your child has special needs, you are given the challenge and gift of throwing out all your assumptions, and everything anyone else has tried to teach you about parenting, and starting from scratch. It becomes more important than ever to understand your unique child, to pay attention to him, to see what makes him happy, and what makes him stressed. For me, the Aspergers diagnosis handed me the keys to understanding my son, and in that way has been amazingly useful. But if it doesn't do the same for you, discard the label.

Labels are only keys. If that key isn't unlocking a door for you, don't bother with it. If is, then go inside and never look back.

Last edited by DW_a_mom on 28 Mar 2008, 2:23 pm, edited 1 time in total.

Thanks Katrine
I edited in my original post I had forgotten to mention he is on a mood stabilizer (trileptil) for his seizures and mood.
His psych actually told us she isnt officially diagnosing him with bipolar but it is his unofficial diagnosis because hes so young and because he has alot going on with the aspergers and seizures but she also mentioned it would be hard to know what type of bipolar is emerging as well. So im not sure but the new diagnosis pretty much screwed me up further! Ive read and alot of the symptoms overlapp but he does seem to have alot of the bipolar symptoms too that arnt overlapping with aspergers syndrome except his rages are few and far in between but definately horrible when they do happen. Also bipolar runs very strongly on mine and my husbands side of the family.
I was thinking that maybe his symptoms have improved alot the past few monthes because hes been on a mood stabilizer but honestly I really dont know what to think. Ive cancelled all his follow ups and 4 opinions with all his doctors the past couple of months (unless emergency) because everything was getting too stressful and I didnt want to hear something new thrown at my son.
My husband thinks we should just lay off and wait till hes older to figure out what is really wrong but im not sure what to do.
Thanks Katrine for your reply and opinion it means alot

Leave it to dracula to pick out that one part of the post out of everything else.-_-



and to be more seroius,could be aspergers.could be autism.

I suppose it would help in areas like shcool or whatever.>->

I would be inclined to agree with the PDD-NOS diagnosis most of all, though of course the line for where you cut off between Asperger's and PDD-NOS is difficult to define, since it's hard to say if you're "Asperger with unusual behavior x" or PDD-NOS that is "almost like Asperger but not because of unusual behavior x" - if you know what I mean. Do you have the opportunity to talk over the difference with the developmental pediatrician - and ask why he chose Asperger's or if PDD-NOS might be a viable option due to the behaviors that are not common with AS?
As for bipolar, I agree with waiting. He's five. Even he doesn't understand his emotions or reasons yet...

Wow I cant believe how fast the replies are comming in!
Actually his pdd-nos dx from his neuro didnt get him anywhere and they treated us as if we were crazy to tell them this because pdd-nos didnt mean anything. But when we had the aspergers dx (by the time his eval. rolled around) from his dev. ped. (who also put: at risk for autism) they were taking it more seriously altho they made remarks about how he didnt have autism at all which made me extremely upset (not that I want my child to have autism but that they were belittling my concerns basically!) Im really hoping that once he hits kindergarten they have to provide him with services (they tried to get me to pay so he could attend thier preschool) for free hopefully.
His developmental ped. said he was too in touch with his surroundings for an autism dx and also said that because he had no speech delays he fit more into the aspergers category. He also had a very high visual i.q. altho i dont think thats one of his reasons for aspergers. Im not sure about pdd-nos tho i should ask him about it.
The fact that my son is dx'd as aspergers dosnt bother me nearly as much as his bipolar dx (mainly because I have experience growing up with bipolar around me) but that fact that sometimes he seems like he has it and sometimes he seems fine just quirky and thats all troubles me. Also the fact that people keep telling me nothings wrong with him upsets me alot. My own husband gets on me because he thinks im worrying for nothing but hes the one freaking out when something happens.
Thanks everyone for your opinions and yes him painting with his poop was disgusting

You will find that Asperger's can be like an invisible impairment: all those around you can see are the gifts, and only we are left seeing the burdens. But thank goodness we do, because belitteling those burdens can turn life into misery for an Aspie child. Kids like ours have often been labeled lazy, unwilling to apply themselves, discipline problems, and so on, all because they simply cannot perform at the level it appears they should be able to perform. And the child just gets more and more frustrated, acts out more, and retreats more. He needs someone to fight for him, to understand him.

If it turns out you need a high functioning autism diagnosis to get the services you realize he needs, once he starts school, then get it. It isn't turning your child into something he isn't; it's playing the label game to get him what he needs.

Labels mean no more and no less than what they can or cannot accomplish for your family.

I wish you the best of luck!

In case you haven't noticed, I'm not one to focus on the label and worry if it's right. It's all about results with me.

I really don't have time and have only skimmed but WOW I thought of mentioning epilepsy as my son has it too, and it tied in with the bipolar theory I had a year ago!
My son is on oxcarbepinum for partial seizures, which is also mood stabilizing.
If your son's epilepsy effects the temporal region it would effect mood.

DW, thats what I keep reading about it so I guess I should stop worrying about labels so much but basically I feel frustrated because no one is giving him services. The public school dosnt think anythings wrong with him that cant be fixed by a few trips to the park is what they told me He was in OT but it wasnt a good fit (that clinic anyway and we live in a small town with no choices ugh) and it was getting so expensive because they were charging us for sensory integration therapy which isnt covered but all she was doing was the wilbarger protocol at the beginning of his sessons. He did get qualified thru department of developmental disabilities and his case worker recommended we see a psychiatrist to rule anything else out (i think she thought bipolar too because she mentioned it to me) and she said she also wanted to try and get an autism dx to access more services. But im so irritated because he qualified thru DDD but they arnt provided him with anything which is pretty pointless because he has to also qualify for long term care to get anything from them because they are the fund source and long term care wants an autism dx and I havnt been able to get in touch with his case worker for months who is for nothing anyway. Everythings so icky right now. The only people who know whats really going on is his preschool. Which is kinda funny because when we first met with the director there she told me not to let anyone tell me my child has autism. Now I hear how my son seems to connect to her the most now and hes driving them crazy lol.
I need to keep fighting for services tho but I cant wait till he has his next eval. hopefully he wont be so cooperative and "normal" this time around. I know im horrible

Katrine, I totally forgot to add the medication he was on in there. Someone told me also that when someone has seizures with all the symptoms or behavioral problems that stem from them ifs a wonder they can have any other diagnosis. Ive thought about that too altho my sons are really infrequent so im not sure. His are partial to. I actually have been thinking about asking his doctor about weaning him off the medication this summer since he hasnt had any seizure activity for quite a long time and I always feel bad giving him medication twice a day! But maybe that isnt such a good idea anyway.

Nikki, I am so sorry to hear how frustrating it has been for you. All I can say is, "welcome to the world of special education," where the majority of schools seem to find it to be their duty to convince parents it's all in the parent's head, or the result of poor parenting, so that school doesn't have to take any of the responsibility the law requires it to.

I am very happy to hear you have a good preschool. Fit is everything; the right place makes so much difference. A teacher that "gets" your child regardless of how she would or would not label him is gold

If you can't get what you need where you are, give serious thought to finding it somewhere else.

And spend a few minutes reading the "Dear Angry Parent" thread on this board. It will make you laugh, and make you realize you are far from alone in feeling confusion and frustration.

Then spend some fantastic one on one time with your amazing child, and remind yourself what a gift he is, and how easy to "get" if all one does is actually try.

I have said this before, and I'll say it again -- don't get hung up on the label. The boundaries between Asperger's and PDD NOS are difficult to define for reasons of personality and individuality among patients. Generally speaking, Asperger's is at the top of the spectrum and PDD NOS is one rung below it. However, because personality transcends neurological conditions, it is possible to have a PDD NOS patient that functions better than an aspie in some instances, and vice versa. And since not all professionals are as good as they think they are at spotting the characteristics of autism, it can be difficult if not virtually impossibleto pinpoint exactly where someone is on the spectrum. As a matter of fact, I wish that to be licensed to dx someone as autistic you were required to either a) have a form of the disorder or b) have a child or close relative who has a form of the disorder. I believe that doctors who only see autism on a clinical basis do not see autism at all.

But know this: all you really need to know as far as dx is that he is on the spectrum. Beyond that, you know your kid better than anyone else. You know what he likes, what he doesn't like, what makes him afraid, angry, happy, etc. Learn what you can about autism in general, and then figure out what applies and does not apply to your child. Labels only slow you down, and they take effort away from dealing with the problem at hand.

Now bipolar disorder is another animal altogether, and I would be wary of that one if I were you. It is not terribly uncommon for autistic individuals to be incorrectly dxed bipolar because the person evaluating them (again, not experienced enough at recognizing autism) mistakes the adverse responses to unexpected changes (associated with autism) for the violent, inexplicable mood swings associated with bipolar. This is because the person doing the evaluation often does not recognize the antecedent that sets an autistic individual off. And the parent, seeking insight from a licensed professional, will consequently fail to recognize it as well. Thus the child is branded bipolar because the mood changes appear to be for naught. It's not likely that someone has autism AND bipolar together -- autistic individuals are often way too logical to just fly off the handle for no good reason -- but even if they did, the two conditions require very different approaches in treatment. Plus if he's 5 as you say, then it's not likely that his emotions are developed enough to really tell if he's true bipolar or not. Usually you have to be in your teens before the true signs start to show up. So if you think he's on the spectrum I would second guess the bipolar unless he's just textbook for it.

It was about the only thing that kept me awake while reading that. Lol


- D

Another possible factor is diet.

Have you ever checked him for food intolerances/allergies. Because sometimes such apparently across the board sets of symptoms as you describe can be the result of a food additives/colorants, or wheat/gluten/dairy/casein sensitivity, or a reaction to eggs, pesticides, corn sugar/cane sugar, etc.

Good luck.