mom looking for advice

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My son just turned 6 and he is the most amazing and wonderful little boy. My baby boy was born healthy and beautiful and is the sweetest little guy and is one of the greatest joys of my life! Let me tell you the story that brought me to this website:

My son was not walking at 1 years old and after asking the pediatrician and investigating further, he was found to be described as "floppy" and have low muscle tone. He was soon-after diagnosed with hypotonia and has been in physical therapy ever since.

He has been incredibly verbal starting at a very young age (way above average, and almost shockingly verbal at around 18 months-2.5 years, then it started leveling off a little), but he has always been described as having a higher than average vocabulary and articulation. For years he has amazed those around him by his the things he says. He has been delightful and hysterical to talk to over the years!

Since he has been through the early intervention "system" since such a young age, he has been analyzed often by many people. A little before he turned 3 a more intense evaluation suggested he had sensory issues and they added Occupational therapy to his schedule. The evaluators at this time infuriated me with their "knowing looks" after spending about 30 minutes with my son. They were guarded in the words they used with me and referred me to our pediatrian. Our pediatrician was the first to mention the autism spectrum and Asperger's. He sent us to an extremely well-known childrens hospital in our city. Genetics found nothing, he had an MRI and that showed nothing of significance, and we also met with neurologists. Asperger's and PDD was brought up again but then when we went back 6 months later, it was basically ruled out. I was told that my son had suspicious symptoms (flapping - we always called it his happy dance - one odd speech pattern that he self-corrected as soon as it was pointed out to him, possible social interaction issues, but they were very inconsistent because most of the time he was interacting typically, etc.) They said to me that even one of their leading neurologists on staff "flaps" when he gets nervous or overwhelmed, but it was just like nailbiting. Also, a doctor who was described to me as "the best neurologist in the hospital" met him and looked me in the eye and said, "I can tell you that your son does not have Asperger's."

So, we went on with life and my son continued with PT and OT. When he was 4, we switched preschools and he started having some behavior issues in school. (randomly exploding if things did not go his way, throwing things, even some hitting.) We were able to get this under control for the most part, but still struggle occasionally with these behaviors two years later. The frustrating part of this has been that he knows rationally what he does wrong, but says he can't control himself or remember what we've talked to him about when he is "in those moments" where it happens.

So now he is ending his first year in kindergarten. and we just had another intense analyzation. I was again frustrated with someone who made a judgement without really getting to know my son. She came to the quick conclusion that my son has Asperger's. I did not feel comfortable and asked her to take it off his paperwork because having that "diagnosis" changed nothing in the plan in place for him. He already has hypotonia as his diagnosis which is all he needs to cover his 504 plan (a legal document that outlines the special accomodations the school will make for him in the classroom.) Basically, in class he doesn't listen well, so they need to say his name specifically before he usually pays attention to class instruction, he needs sensory breaks at times, etc. After our big meeting his PT came to me and said she was glad I had taken off Asperger's from his paperwork. She didn't think it was necessary and she is not so sure of it either. She said my son has been fascinating to work with this year, and in talking to her, I realized that she really GOT my son. She knew him. She was in awe of his uniqueness the way our family is. I respect her and I think I fell in love with her in that conversation as I realized she was someone who really took the time and interest to get to know my son. I am getting emotional now just thinking about that conversation. It moved me.

Ok, so here's my summary on my thoughts about my son that will lead to my ultimate question: My son is and almost always has been, a bit of a puzzle to us and others, but he does not seem to fit perfectly neatly into any category I've read about. Certainly he has several characteristics of the high-functioning autistic spectrum arena, including Asperger's, but my husband and I, knowing him better than anybody, do not feel convinced that there is any one perfect "fit." That is one of the reasons I am hesitant to jump into a diagnosis that may be hard to remove or change as he gets older, especially in the school system. The other, more maternal reason, I am hesitant is that I have felt a very instinctive and almost primal need to "protect" my son from a diagnosis. I can't explain why exactly, it just makes my skin crawl when I describe a characteristic of my son to one of the evaluators and they nod knowingly and say something like "that's what they do." I feel that if my son has a--for lack of a better word--label attached to him now, everyone will look at him through it and not see him as he is for who he is. I don't know if that makes any sense, but its been how I've strongly felt.

Until I found this site. Now I am reading this and hearing from adults and teens who may be similar to my son and now I am starting to doubt myself. Maybe I am actually doing him a disservice. Maybe he would be better off, happier, and more content in the long run if we look this head on and come up with a diagnosis. Which, of course, is ultimately all I want for him--to be happy! I am so torn. Anyone who truly gets to know my son will be so glad they did. He is so unique in such a wonderful way, and I want to be sure that people in his life get to know HIM!

So my question: What does everyone here think? Is it better to pursue this medically and find out exactly what the medical world thinks may be going on with my son, or follow my instincts and keep them out of it, at least for now. (He is still getting the early intervention-type things, such as PT, OT, social thinking and play skills group (something new they recommended), and classroom accomodations. Is there any reason a diagnosis now would help him?

I love my son so much. I want to do the right thing for him. Thanks for taking the time to read this. I appreciate, in advance, your advice.

And I'm reminded how horribly distressing some NT's find the enigma which is called "us"

And when I was 6, there I was, happily content just being.

Silly me to think the world didn't think it was ever more complicated than that.

I think that kids should be allowed to be kids and to be the way, that they are, ASDs or not, so that everybody can live their lives in peace.

Hello there.

As for your question of whether or not to pursue a label (and which label to get). It really doesn't matter. A label doesn't do anything to change your son whatsoever, so it isn't like getting him labeled will suddenly change things.

The only thing a label will do is offer you some legal protection. Getting your child services when there is nothing diagnosed can be tricky. It depends on the state, school, and system you work with, but some systems are very reluctant to give any help without a label first. In these cases, a label can be used as leverage of sorts to convince the schools to offer support. Right now you don't need a label since the school is providing the supports you would like. But in the future (at perhaps a different school) you may have more troubles getting help and a label might be useful for fighting the bureaucracy then. So, getting a label now really wont change anything, but it may offer some legal protections in the future.

I would also point out that trying to figure out whether or not your child has asperger's syndrome is an exercise in futility. There is no agreed upon definition for the condition, just a vague set of characteristics that is open to interpretation from person to person. You can take your child to a dozen different 'specialists' and you will get a dozen different labels. Don't put much stock in trying to figure out which label your son would fit because nobody in the world can be accurately described with just one simple word.

Also, if you have more questions I would recommend that you visit the parent's forum:

http://www.wrongplanet.net/forum19.html

It is specifically for parents with aspie children. You will probably get more specific advice if you ask your question there. You will also probably get some useful advice about things like meltdowns and other aspie specific things.

Also, I know it isn't terribly important, but the phrase is asperger's syndrome. There is no B in the word. It is properly pronounced asp-er-jer. the asp is like hasp, rasp, clasp, etc. and the erger is pronounced like merger. There is no B involved.

it sounds to me like because you (and others) are able to see your son as a person, that you are hesitant to put a label on him.

he will still be a person if you get an accurate diagnosis (it will not be the only thing that defines him), and you are a good parent for seeing him and appreciating him for who he is.

that said, you will be doing him a disservice if you do not recognize his difficulties and explain to him in some manner that these difficulties are not his fault. he will know already that he is different than other children, and if you don't give him an explanation, he'll come up with one himself that might be more damaging (he could think he was crazy, for example).

this is very subjective, but from what you've said i think your son is intellectually gifted, and that can obscure things. also, you may expect more from him that he is capable of, based on his intellectual promise, and eventually be disappointed.

my nephew (age 11) is a very gifted boy with Asperger's and ADHD. he is an amazing, bright, funny, fascinating, unique kid. my brother and his wife doubt the diagnosis. and he has always been in special programs for gifted children. the important thing is that he is appreciated for who his is. however, i wonder if his inability to hear people when they're trying to facilitate getting him dressed to go somewhere has more to do with too many lights on and too much noise than his unwillingness to pay attention. (for example)

so .. i think it's important to accept the possibility he has Asperger's. it sounds like you are rejecting it for reasons other than an unlikelihood that it's true. i can't tell you if your child has Asperger's. but understanding the problems that it presents may help you understand him better. so, to be blunt, get over your rejection of the label and do whatever you can to understand and be honest to your child.

You should be careful to understand how your child interacts both in familiar and unfamiliar situations. Your son gets a nearly unlimited amount of time to try and understand you and how you work, this can help him overcome some symptoms when interacting with you. Other people are not nearly as accommodating, and need to be interacted with in much more stressful conditions.

Parents are often suspicious of the descriptions of how their child acts in a school environment because it is so different from how they act at home. I think you have to be open to the idea that the person you get to interact with may not be the person others get to see and that this itself is part of the issue at hand.

Also as katzefrau mentioned, the question of why these problems exist will come up, even if it remains unspoken. I am not going to pretend to understand what you should do with that question, just to reiterate that some explanation is required.

Being accepted for being unique is certainly important, yet understanding how you differ from others is equally important. If the diagnostic process helps you and your son understand what exactly is different, that may make it worthwhile. Whatever you decide to do, I would suggest that you be mindful about how your fear of a label can effect your reaction to the associated autistic behaviours.

p.s.
my parents fought the diagnostic process and stopped when I was 8 for a fear of what I was going to be labelled with. I would like to thank you for helping me understand their point of view.

Sorry to be off topic, but I thought the g in Asperger's was a hard g?

If you want I could see the G being pronounced hard, but the only English word I am aware of that includes the 'erger' sound is merger. Which has a soft G. So for consistency within the language I think the soft G should be used instead of the hard G. But that being said, the P is non negotiable. It is very clearly a P in there and not a B.

yes, very good point. as far as observing his behavior is concerned, you know your son when he is very comfortable (i.e. with you).


and as for pronunciation, I have heard Asperger's pronounced asp-er-jer by the British, and with a hard G by Americans. so i guess either is ok? and yes, the P is non-negotiable.

Well....there is that saying "If you've met one person with Autism than you've met one person with Autism"
Just like everyone else we are all individuals and there is no set of rules...there is no A B C D and E symptoms. There is a vast arena of symptoms to describe Autism (and this includes Aspergers).
One thing that I dont understand is why people are going to Neurologists for a diagnosis of a developmental/psychological disorder. Even though there have been some small studies that show a CT of an Autistic persons brain have shown, in some, changes in the corpus callosum this is by no way a definitive test.
My Neurosurgeon that did my back surgery didnt even know what Asperger's was....go to a psychologist or psychiatrist that specializes in Autism Spectrum Disorders.

My youngest son is also a bit of an enigma. He doesn't fit into any of the catagories, but we aren't worried about it. He's a wonderful amazing little guy. He'll be 9 tomorrow. He's very different from your child in that he didn't speak till he was 5 and hasn't ever had muscle tone or coordination issues. He was at one time diagnosed as PDD-NOS but a recent assessment indicates that may have been incorrect.

What I've found is that it's important to focus on my child's needs not his diagnosis. The diagnosis can be useful in that it can help guide us in figuring out what will be most helpful and may inspire us to try some things we might not have thought of otherwise, but in the end it's just a label. It sounds like you've been very fortunate to get good teachers who are accomodating him well and are doing a great job in understanding what your son needs to be the best him he can be.

Lots of kids with Asperger's don't get diagnosed till they are a bit older. It can be hard to tell the difference between a quirky kid and a kid with AS or ADHD. It may take a few more years for him to develop enough for the correct label to be more obvious. Its frustrating not to know.

It sounds like you feel the same way I do about it. I adore little guy just as he is but I'm extremely curious about the puzzle of why he is so different. It's intriguing to me in a positive way.

i don't agree that it's just a label. it's a language. and i cannot stress enough the value of knowing you aren't the only person in the world who speaks it.

this is the perspective of an adult who didn't know.

i'm sure things are different now.

Get him a diagnosis and tell him before it's too late, please.

I was diagnosed two years ago (age 14), and it shattered me. And, all those years where I knew I was different but didn't know why were hell. I thought I was stupid or immature.

Please, act as early as possible.

Thanks, that makes sense. I've only heard it pronounced with a hard G, but I live in the US. And yes, of course it's a P and not a B.

I recommend getting a diagnosis for him. It's not going to harm him in school. It might get him the help he needs, though. Why are you afraid of labeling your son if it actually has something? Clearly his development is atypical.

But Hans Asperger was Austrian. Shouldn't German pronunciation be used for the baseline? Not that I mind much either way as long it's not being pronounced/spelled Ass-burgers.