Is this really Aspergers? Baffled, worried, questioning the psych's suggestion. (therapy, child)

[Aconite]

Originally Posted by syracusa

I am writing here hoping that some people may be able to help us with some insights and opinions. Basically, we are not sure whether our 5 1/2 yo son really has Aspergers or not, and we feel that the psychologist he saw recently may be too much in a hurry to label him.

He had an evaluation by a psychologist/pediatric neurologist who suggested he MAY have Aspergers.

::cut for brevity::

Any opinion whether you think this is a yay or a nay would be highly appreciated. Thank you so much!

What you have is called a differential diagnosis. That's when psychiatrists opine that "it could be this. Or it could be something else. Or it could be this other thing entirely." It is not a diagnosis, it is not a magic spell to change your son from who he was before the process started. It's simply a way of coming to a conclusion about what is the best way to give him what he needs. Eventually, after testing and much consideration, you'll arrive at a diagnosis, which may well be something else entirely.

That having been said...generally, five and a half is early days for diagnosing Asperger's (though I know there are some locally who will diagnose it at two and three, mostly because they don't like using the other "A Word"). And yes, there are always those practitioners who will see one or another diagnosis under every rock. Assuming you did your homework, though, and assuming you have a psychiatrist you can trust, I'd wait to see what the final word is before predicting doom, despair, and a life of lonely misfit-ism for your son. (FTR, I know a fair number of adults with Asperger's who are married, gainfully employed, and frankly I couldn't tell you precisely what they're looking at when we speak-- though refreshingly, at least none of the men talk at my chest, unlike some some of the NT men I know...)

[AnonChick]

Originally Posted by syracusa

What a great post - thank you AnonChick!

Should I conclude you belong to an older generation?

I always seem to love what older Americans have to say!

I am 38 but I seem to have the mind of an 85 yo by current American standards.

I'm 50, and come from a family of storytellers. My grandmother was a playwright and my mom was a kindergarten teacher for 30 years. I helped her prepare for the first week of school every year, visited her class on occasion when she was doing special projects (she had Japan week where she'd dress in full kimono and white-face and those funky wooden shoes) and got to know the education system from an unusual perspective: the teacher's job, from the student's eye.

A lot of my experience with children, is a direct result of my mom's being a teacher. I didn't do the actual "raising" of the kids - but I had the perspective of the engaged observer. That plus working for years in the Fast Food Industry as a cashier gives a whole NUTHER perspective...some of these kids are so lovely they make you weep with joy and hope for our future as a sentient race of beings. And then the troubled kids show up and the bubble bursts like a napalm bomb. The biggest differences between the two types of kids isn't their disorders. It's the parents.

[stepka]

Originally Posted by syracusa

Oh, absolutely. I am convinced there used to be people who exhibited syndromes of what we now call ...insert a variety of "disorders" here - but I would argue that such cases were much fewer in the past, percentage-wise, of course.

Today, there are simply too many children who seem to not be able to adapt to their environments as it is required. Whereas those simpler environments of the past could have still been stimulating enough for some extremely sensitive children...imagine what the crazy, overloaded, extremely fast-paced modern environment can do to a merely sensitive child (these are many).

I agree with that too. My theory, FWIW, is that the health ofall of us is suffering. Some in subtle ways and some in more profound ways, but none of us is quite right and for some of you these issues show up earlier in life.

One can start by looking at the food supply and go from there and though you may make a huge effort to eat right and maybe you even eat your traditional diet from Europe, you almost certainly can't get the same foods because I don't think it's just a matter of eating more fruits and vegetables and WW bread or popping more vitamin pills. The brain is so sensitive and there are all these neuronal pathways and so much that can go wrong that it's a wonder that any of us are alright and all it would take would be for a few "wires" to get crossed or a chemical to come up a little short. Look at all the alzheimer's cases and so many more to come--cancer--heart disease--autoimmune diseases. Autism on the rapid rise. Oh yeah, and my p-doc said that she's never seen a case of ADHD that wasn't accompanied by allergies and mine were severe as a child. This is not normal, though it seems to be b/c everyone we know has something going on. Most of you are lucky enough to grow up healthy enough as a child but then later you get sick. And we all just shrug our shoulders and shake our heads but I'm looking at this and wondering how much worse it has to get before we actually do something about our environment. Oh yes, and before my 94 yo g-mother passed away, she said she'd never even heard of allergies until she was grown and never heard of autism until she was retired, though she worked with the intellectually disabled for years.

And on the upside, sometimes a medical person sees a disorder where there isn't one and speaks out of turn. I took my dd in for her 2 year check up and the nurse measured her head circumference and flipped out. It was too small and she started acting like my dd was a freak and ran to get the doc. The doc said it was rather small but not abnormally so and asked me questions about my dd's performance and I was able to tell her that my dd already knew all the letters of the alphabet. Now my dd is 19 and in a select midwestern university on a full ride scholarship. Best not to get worked up until you get a final dx. And neither one of my dd's has allergies or AD/HD!
But big girl has an eating disorder and little girl has PCOS so I'm not exactly congratulating myself.

[hitachi]

If you have the means and the time, I would suggest you take a trip to the Marcus Institute for Autism in Atlanta Georgia, the best in the country. Make an appointment with Dr.Panorities.


Best Regards

[wsop]

Originally Posted by syracusa

Thank you, everyone! I really appreciate all your input and I already DO feel a whole lot better. We have the follow up on May 5th and we will hear more from the psych then. In the meantime, his teacher filled out some questionnaires too and sent them in - so we will see what the final verdict is.
Thank you again!

So what happened?

[wsop]

This video sums it up for me. We need to start paying attention to what is going on. I'm not suggesting that ADD or other disorders don't exist; I just think it's a lot rarer than the current numbers suggest.

Rafael Casal – A.D.D. @ Brave New Voices « CCHR International

[Roselvr]

I could have written your post. I'm actually here looking for the same thing; older child. I've been speaking to an old friend; one who's boy was diagnosed aspergers; our kids are the same age; different sexes. She's been telling me about her kids behavior & I swear I could have written the email but with my kid. So; the seed was planted & off I went trying to watch & remember. Decoding Autism (you can watch at this link) was on the other night; some of the things shown made me get out the pen & paper to make a list. Things that stood out- sensitive hair - I can also add socks; shoes & clothes- she changes many times a day; we used to argue at the shoe store because she'd buy shoes that were too big. Anger.. actually diagnosed with Oppositional Defiant Disorder. One teacher swore she was bipolar. Also ADD

School has been a problem since 3rd grade. I've been all over trying to get help. The grades would be some A's; some B's- then we had a few C's.. this all eventually changed to mostly C's when the learning got harder. Having said that; she can do the work & seems pretty smart so I've thought she was bored.

Always needs people around- not necessarily to mingle with. Has a hard time keeping friends.. Not mature like friends; if I had to pick an age; I'd say 13; not almost 18.

Does not seem to get certain things- like saying things & hurting feelings
Messy- she will burn the counter with a hair straightener. Took me a lot of time to teach her to remember to put pot holder down. Spills & thinks nothing of it. Doesn't seem to "see" disorganization/mess.

Homework was not a happy time- got frustrated; couldn't remember learning it in class that day. Swore teacher didn't teach it. If someone tried to explain something; she knew it all

On the other hand- walked; climbed; talked early. Able to hold conversations around a year old. Rode 2 wheeled bike before 3.

If she's got aspergers- how was it missed? I've been going to all sorts of Dr's since 2nd or 3rd grade- she's been evaluated by the school; neurologist; psychologist. When we saw someone new I always let them know my nephew is diagnosed & I try to give as much info as possible about her paternal relatives.. one who is just like my girl but gone too soon at 40 & never diagnosed.

You have a lot of information at your finger tips- there was not much up until the last few years; so I was not able to research like you can. What ever the diagnosis; even if it's nothing.. medicine is more advanced. If you watch the Autism show I linked to; they can do all sorts of testing.. some blood; think another was a brain image- too much white matter in the brain- also how something in the mom's antibodies caused their brains to not form right. Some forms of autisms (they don't know how many forms there are) some kids are having delayed signals to the brain. They say that not all parts of the brain are affected; which could be why some are more social then others; while being socially awkward.

Originally Posted by syracusa

I am writing here hoping that some people may be able to help us with some insights and opinions. Basically, we are not sure whether our 5 1/2 yo son really has Aspergers or not, and we feel that the psychologist he saw recently may be too much in a hurry to label him.

He had an evaluation by a psychologist/pediatric neurologist who suggested he MAY have Aspergers. We were shocked out of our wits to hear that, as we were expecting ADHD but we would have never guessed Aspergers in a million years. Not that we were meticulously informed about this so-called "condition"; we had just remotely heard that it is something having to do with the autism spectrum and as a result we never even bothered to read more about it as as our son comes across as ANYTHING BUT an autistic child.

After spending three hours with him, the psychologist said mainly the following:
- that he is very smart (he apparently scored somewhere in the high end of the above-average range, close to gifted, but she did not know precisely because she had not calculated the score yet, only what she was able to see with the naked eye).

- that, however, she had a few concerns related to his fidgety-ness and some things he said that sounded a bit too "literal" to her.

She said that she will write the complete report and will have an overall conclusion at the follow-up in a few weeks.

Needless to say, we started reading up on this condition after we saw her and were able to find out more. What is torturing us now is that, despite recognizing SOME "textbook traits" in our son, the overall picture simply doesn't add up. Instinctively, I don't think he has THIS condition, as it is described in books.

He is an overall highly talkative, social child, highly sensitive and highly affectionate/emotional and empathetic. He DOES NOT come across as socially "disconnected". When he was 3-4 months old we had to take him to a few sessions of physical therapy for a congenital condition called "torticollis" (tight muscle in the neck, nothing to do with Aspergers). The PT-s were trying to work with him by dangling toys in different positions so he can turn his head in those directions and thus stretch his neck.
They said he was almost impossible to work with because instead of staring at the toys he was only staring at the PT-s faces and their facial expressions or at other parents/children who would enter the PT room.
So they called him the "social king".
He started talking early and was always interested in people, tone of voice, facial expressions. As a toddler he was rather an observant, cautious child (not the action boy!) but he was never "detached" and was clearly studying up social situations around him. He was NEVER in his little world.
He's always been incredibly communicative and charming around adults but this is mainly because he grew up mostly surrounded by adults. He is also definitely not shy with children, he often strikes conversations and asks children about themselves (things like, "Hi, I like your puppy", etc) and often appears more socially mature than children his age. However, often times he just seems to meet children who really DO act and look autistic as they do not say anything or look away. I often attributed this to his cross-cultural background as he was raised in a very collective atmosphere where people get very personal, are very affectionate and always focus on the other instead of being self-absorbed - something I noticed about most children on play-grounds, pre-school etc. Eventually he seemed to get the message that most kids here act self-absorbed so he began to act more like that too and just mind his own business.

His tone of voice is perfectly normal, with adequate inflections and a very personal timber, and he would never strike anyone as "a bit weird". When I mentioned this to one of his teachers (the principle) she said "What??? Him? If it is something like that, it must be the mildest case of Aspergers that has ever existed because I don't see it".

That being said, below are some traits that he has developed mostly over the past couple of years and that DO make us think of the textbook definition of Aspergers (the other day I finished reading the "Complete Guide to Aspergers Syndrome").

1. Despite his overall high apparent sociability, he does not seem to be good in large groups of children; he does much better in one-on-one encounters where actual interaction/conversation can take place. He seems to be off when trying to become part of a group's dynamic (several children at play) and until recently he used to wander on his own without spending too much time in the large group.

2. He had a bit of a tough time when he started his second year of preschool in a new state (where we relocated) and seemed to be playing mostly by himself for a few months. When I probed the teacher, she said she would encourage him to interact more and after a few months, he did make 2-3 friends according to her, two boys and a girl, but none of them were part of the little "in group" of boys that played tag, football, the jazz. He even told us a few times that "so and so" (little cool dude in his preschool class) told him he can't play tag. A "bullying" red flag showed up in my head right away but the teacher said "no way, it may have just been him because nobody bullies anybody there". I did observe him in the presence of "little cool dude" a few times (without the dude being aware of my presence) and absolutely no animosity or hostility seemed to come from that boy. So again, it MAY have been in my son's head.

3. He is very spacy, fidgety, loses things like crazy - basically he screams ADHD, though ironically enough, the psych never mentioned anything about ADHD. He is also impulsive which often passes as enthusiasm and he can get quite caught up into whatever he wants to say that he fails to notice that he also needs to stop. He interrupts quite a lot and has typically demanded large amounts of attention. He DOES cling to adults.

4. He IS obsessed with dinosaurs and the obsession has been going on for about 5 months now.

5. He DOES like jokes and has moments when he clearly catches on to irony, sarcasm, etc and laughs appropriately (so sense of humor is definitely there!!); and yet, he also has moments when he seems to be "off". For example, yesterday he came in and showed me yet another drawing of a dinosaur and I said jokingly/sarcastically: "Wow, I am SOO suprised you drew a dinosaur!!". When he didn't react to my line, his father asked him lightly and smiling: "Do you think mommy was surprised you drew a dinosaur"? And he said: yes! (also seemed to mean it) but he also seemed to be a little inattentive in that moment and not really attuned to what I was trying to get at.

But we couldn't help thinking: WTF, he really IS starting to sound like the textbook.

Yet, before we heard about this Aspergers thing, we never questioned his ability to understand jokes, context, nuances, etc. But now that we are aware of it, we seem to read a lot into everything he does, says and how he reacts.

Academically, he is ahead of his age peers for the most part: he has not started K yet and he reads and 1-3 grade level and comprehends too, he does 1st grade math, he has a large vocabulary, etc.

Basically, what is happening to us right now reminds me of a stand-up comedian who delivered this line: "I went to the eye doctor and he told me: have you ever noticed that your right eye is slightly above your left one? And I said: "Nnnnnnooo ?......but...thank you for making me self-conscious about it for the rest of my life"!!!!".

This is pretty much what we feel right now.
We are so paranoid and worried about it now that every little little "off" thing he does, we see it as a sign of Aspergers and his social future and personal life shattered.
Until one month ago, I would have not even be able to accept that he will go to anything less than an Ivy League university or that he would not finish graduate school.

And now I read about a large percentage of Aspergers who end up unemployed, with relationship problems (no partner) and an overall sucky life... because of social impairments.

Ever since this diagnostic has been suggested, I have been so stressed out and almost depressed that I feel like it is starting to eat at me.
Overall, I don't think he has this condition (he is talkative, empathetic, sensitive, highly affectionate, highly playful, highly conversational and "philosophical" for his age, socially curious, perfectly normal tone of voice with perfectly normal inflections, etc). On the other hand, he does seem to exhibit certain random, separate traits of Aspergers...and we are now reading so much into each and every little gesture, social reaction or facial expression he does or has...that we feel like we are going crazy.

Any opinion whether you think this is a yay or a nay would be highly appreciated. Thank you so much!

[syracusa]

Originally Posted by hitachi

If you have the means and the time, I would suggest you take a trip to the Marcus Institute for Autism in Atlanta Georgia, the best in the country. Make an appointment with Dr.Panorities.
Best Regards

Thank you so much!
We will - as we are relocating back to Atlanta in June.

[syracusa]

Originally Posted by wsop

So what happened?

Well...OK.

We went to the psychologist yesterday, she wrote her report and she said that basically, yes - it is a more or less mild form of Aspergers and that he is also likely to develop attention problems in the future. In fact, he has them now along with a major dose of fidgetiness and clumsiness (not well coordinated, tips over his chair from so much squirming) - but she does not want to apply an ADHD diagnosis at 5 1/2.

But she did see Aspergers because of some traits she elaborated on.
For the most part, I agree with her that those traits exist in my son; but to what extent such traits should be labeled "abnormal"...that I don't know anymore.

She also said he is the kind of Asperger child who would easily blend in with the "normal" because he is very social with adults, wants to please adults and WANTS to relate and converse - so no adult with an untrained eye would ever judge him as "weird/abnormal".
On the contrary, he comes across as charming, appealing (the word she used), talkative, friendly, bright...anything BUT anti-social or the poster-picture for autism (introverted, into his own little world, etc; nothing like that, in fact the opposite).

However, once you get to know him better you start noticing his over self-directed-ness (he will want to tell YOU about all sorts of stuff about himself or what HE is interested in) but is not necessarily interested in reciprocation. Adults accommodate this, but age peers don't; so if you don't know how to be flexible and adapt to others' interests, wishes, etc you end up being excluded or rather excluding yourself.

I told her that he indeed does not seem to be able to become part of a large group dynamic in play with peers but he does do relatively well in smaller groups (playing with one other child or maybe two, three at the most - but not more).
He did make a few friends at preschool and the teacher reported that he spends a lot of time in his small group (with one or two other boys/girls).

The psych also said he takes some things too literally and she argues that he uses words and phrases a bit too formal for his age and that his tone of voice doesn't have as much inflection as it should.

I tended to disagree with the last two items being a sign of something abnormal because some of the expressions he uses come from books and books-on-tape he listens to; and he sometimes tends to borrow a bit of a dramatic tone from me - which I sometimes use to exemplify or make a point for them; ... but I guess you could argue that his brain should make the distinction between drama/books and reality and that he should nevertheless choose a regular, dispassionate tone at all times.

I don't F-in know at this point.

(kindly pardon my French but I have been really down and frustrated since yesterday because of this little modern-day story about defect and labeled kids which I was hoping to be able to dodge...but how could I have been so lucky, right?).

She also asked him about what it means to be a friend and she was apparently not satisfied with his answer (being nice to each another) because she wanted to see more elaboration and deeper understanding of what friendship is.

Again, as someone who holds a PhD in a social science field, as much as the psychiatrist we saw does, I stick to my guns that you cannot possibly ask such questions of a 5 1/2 year old and expect a refined and elaborated answer when the very environment in which children are raised today are not exactly conducive to deep friendships.

How could he possibly have a deep understanding of friendship when he doesn't even have an opportunity to hone his friendship skills?

You don't forge deep friendships in a 3 hours a day, structured, institutionalized, teacher-paced environment, and you don't forge friendships in neighborhoods that are always dead (no trace of a child outside), and you don't forge friendships with a mother who simply cannot haul you daily to play dates because she is overwhelmed with work and household-related chores; and even when your mother DOES haul you to some play-dates, once in a while ...you still don't forge friendships when the play-date boils down to children going in different directions, each obsessing separately over one of the millions of toys present at the play-date.

Likewise, you don't forge friendships in organized, structured, goal-oriented activities where spontaneous human interaction is practically zero.

I will argue all the way to my grave that the modern environments in which children are raised today are INHERENTLY isolating environments conducive to such "disorders". (yes, despite all the play-dates and activities that adults with too much time on their hands organize for kids).

Such modern environments are NOT conducive to a good development of human interaction skills. They encourage self-absorption and self-directed-ness and children who are already born with brains wired for more "self-directed-ness" or for less "attention" than others will have their idiosyncrasies exacerbated to the point of disease by the incredibly stimulating, complex, yet humanly isolating environments in which they are raised.

By the rant above I don't mean to disagree with the psychologist.
She seemed like a very nice and well-meaning lady who knows the latest in her field; but then again, I know the latest in MY field too, coupled with first-hand, lived cross-cultural experience (from collective society to highly individualistic-turned-narcissistic society), as well as cross-history experience (from undeveloped, traditional, communist society to super-developed, modern, capitalist society).
That'll give you a lot of insight and then some.

What I know, without the shadow of a doubt, is that there were virtually no Autistic persons of ANY sort at the time and in the place I grew up in; and I don't mean the diagnosis!! I mean the behavior in and of itself.

No children or adults behaved Aspergers, Autistic or ADHD. Period.

We all knew how to navigate social relations, from craddle to grave, because we were all in each other's business AT ALL times, with DAILY, direct contact, with no privacy-related issues, with very close friendships. We all learned how to deal with social situations - from small, very intimate groups (2-3) where privacy or self-absorption would have been an unimaginable concept...to very large groups with their own unique dynamics or subsets of relationships.

Nobody Aspergered on anybody - EVER.
You learned to adapt because you were expected to adapt.

Only those with severe mental retardation could not - and those were pretty much removed from society (please DO NOT interpret this as me advocating that this is what SHOULD be done with the severely mentally disabled; I am just describing that environment).

Based on everything I read so far, I myself could have been a born-Asperger; but the culture in which I was raised sure didn't allow my "possible Asperger" to bloom - because there was no room for it, culturally speaking.

Like my son, I myself disliked groups larger than 2, max 3 and always felt clumsy about making myself heard in a large group (never managed to).
My entire life I only functioned in a "best friend" arrangement, never in a "gang", but then I simply learned how to maintain respectability in larger groups too. The good thing was that my best friends (serial, not all at once) were always around and always available - without my mom having to arrange play dates for me.

I myself developed a very intense preoccupation with one particular thing at the age of 14 (an American pop culture icon) and it lasted all the way into my 20's. It was so intense that it motivated me to learn English to the point of making killer scores on GRE tests which allowed me to eventually snatch scholarships at Ivy League schools.
Maybe "illness" can have its advantages.
Then the obsession went away in my early to mid 20's, got married, had kids, finished grad school, got the nice house in the burbs and the 6 figure family income... managed to not end up a "failure" (sarcasm here).

I don't remember being ADHD or fidgety, disorganized or having the meltdowns my son has had... but then again, I only had 3 toys my entire childhood so how can you ADHD on 3 toys? Even the most disorganized child will be able to put away three toys.

But then again, maybe I didn't have Aspergers and my son, along with millions of other kids, ended up with it.

As they say "cherchez la femme".
I "cherche" the environment because I remain convinced that this is where the key answer is.

[wsop]

I was really hoping you wouldn't tell me that was what happened, but considering the apparent preoccupation of adults to label kids as disordered these days, I'm not at all surprised.

And use all the French you want. I'm using some of it myself FOR you right now!

I recently watched this video...It made me feel better. Maybe it will make you feel better as well:

Neither autism or Aspergers is mentioned in this video, but WTH, might as well throw that one in too! Just another label the experts hand out like candy.

Psychiatry

Just wanted to add that from all your descriptions your child doesn't sound like anything but a normal child to me. Yes, I realize this is over the internet, but it really sounds like this psych was going out on a limb to FIND Asperger-like behavior.

For example, he takes things literally? HE'S FIVE!!
Another example: He will easily blend in with the normal - Maybe because most people that easily blend in with the normal, are, ummm, NORMAL?
Self-directedness, talks about himself and his interests? - WOW - Again, he's FIVE? Last time I checked most five years are interested in just that; themselves!

Sorry, I'm going through something similar right now so I may be somewhat irrational at the moment.

In fact, if some expert observed me over the last few days I'd be labelled with something as well. I have literally been hyperfocusing on this issue, but at the same time distracted, forgetful, wandering around seemingly without purpose, unable to concentrate or focus on housework, unable to sit still, unable to focus long enough to read more than a few paragraphs in a book, etc., etc., etc. *Sigh*