I'm a mom and I'm so confused. Aspergers? Non Verbal? Or?

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I feel so alone and so lost right now. I have a son and he is 5 years old. He is extremely smart (Im sure all parents say that lol). But he started K/1st grade combined class at 4 (he just turned 5). He is reading on a 3 grade level, 1st/2nd grade math, very intelligent but has a few things I noticed that are off.

He was diagnosed at 4 with ADD and put on Vyvanse and has been doing quite well. Socially he is challenged (as he has a hard time being flexible) and doesn't understand why children his age want to play in sand, play sports, jump rope, or get messy. (Yes he has sensory issues). He prefers, advanced board games, Yu-Gi-Oh/Bakugan/Magic Card Games, Card Games, etc things that are too advanced for children his age. He can and does at times blend in and play things they like, but seems like a chore for him.

He thinks people are staring at him (has a hard time with the expressive and receptive body language).

Can have meltdown (not often) but if something isn't going as planned, if he isn't perfect at something (his is a perfectionist) or if he gets hurt (its a major crying cant calm him down thing).

His teacher thinks he is fine and nothing is wrong with him and you can't tell he isn't just like everyone else.

Here is my situation. I do agree there is something off-but it seems once they upped his medication to 40 mgs of Vyvanse these behaviors came out more so. As prior to meds he didn't have some of these behaviors and could read body language etc easier. Having said that, I know that children as they get older can develop some of these issues, recently they attempted to drop his dose of Vyvanse (to introduce Intuniv) and I noticed some of these behaviors starting to lighten.

I came to this site hoping that if my son does have Aspergers (they said it would be mild) that there is a chance at a normal life for him. Or, wonder if it could be the Non Verbal Learning Disability they are trying to rule out. So many things they are trying to figure out, but I get so worried about them labeling him. To me he is normal for the most part, but has a big issue with the reading body language and social issues. Can he just have the lack of this without having Aspergers. Ughhhh

Sorry, just so lost and so scared because of everything they are throwing at me about him at this point. I am open to anyones thoughts, or how I could look at this, or even how to help him cope. Okay, vented. thank you

Wahoo, don't know what to tell you. Hope somebody here can offer some information on this whopper question you raised. Maybe if I read it 2 or 3 more times.
Meanwhile, seriously good luck to you and your son.

Sounds like you definitely have a lil' Aspie on your hands. That's awesome!

It's just an opinion, but I keep pounding the drum that children should not be medicated unless it's a serious illness or a life threatening condition. There is no medication at this time that is effective for AS and some of Asperger Syndrome's behaviors can closely resemble ADD, ADHD and OCD, but are not chemical in nature, therefore not treatable with meds. They are the result of non-typical perceptions and coping mechanisms adopted to make up for social deficits.

There isn't any part of AS' daily social problems that can't be handled by learning to adapt. That is not to say one ever outgrows the problems, it is a lifelong handicap, but we learn to function around others because there simply is no other choice. We may never do it very well, but not everybody is destined to be the life of the party.

It doesn't do any good to pressure someone with a brain dysfunction to do the things that they quite literally can't do (and we'll usually tell you when those things arise), but never stop encouraging him to do the things he can do, even when some of them are difficult or uncomfortable (and one of the peculiarities of this disorder is that sometimes the difference between can't and difficult is the difference between Tuesday and Thursday). Just understand that when he does undertake something that's hard for him, he's going to need plenty of alone time afterward to psychologically decompress.

As far as his teacher's attitude - that's the very thing I've had the most trouble with for 50 years (I was only diagnosed a couple years ago), and that is, that this handicap, being invisible, is treated by others - friends, family, employers, coworkers, significant others - as if it doesn't exist. As if we're just making it up as an excuse for whatever we don't want to cooperate in. And that, I can assure you is not the case. Many of us here at WP struggled with our disability for decades without ever knowing it had a name, all the while being told we were stubborn or lazy when we couldn't comply with orders and fall into lock-step with the crowd. The only thing that's going to change that is for the public to gain some comprehension of what High Functioning Autism is. Nobody questions the reality of Dyslexia anymore - we need the world to understand ASDs as well. Because it's largely that lack of comprehension that makes us such bully magnets.

Your son has a very real handicap, but he could certainly have any number of things far worse than Asperger Syndrome, so don't despair. It will most definitely make his life more difficult than most, but as you say, he's smart - he'll find a way to manage - just understand that it will be HIS way, and it often won't make much sense to you, or to his teachers, but for him it will be the only way that works, so try to be patient. Don't be saddened. You both have a great adventure ahead of you.

I can relate strongly to the difficulty being flexible in thinking... but the issue with sand, sports, jump rope... all those things my children enjoyed, and didn't care if they got messy. Meals were always an exercise in themselves. Though, as an adult, I may enjoy going to the beach to sift for shells, but personally sea-spray gives me a helluva time and I try to avoid it... I don't like salt water on my skin. Kids don't seem to mind it.



My oldest daughter obsessed over Mickey Mouse around that same age, and would've taken to board games / etc if they related to her pet interest, the mouse.



Can't relate to a feeling of being stared at, but the meltdown... and perfectionist... my son is like that. If he is working on a project and anything goes wrong with the way it is turning out, he will potentially destroy it.



Yeah, I'd keep in close contact with the pediatrician. Sometimes those medications can be completely ineffective, or sometimes have the opposite effect they're suppose to.



There are coping skills that a person can learn, and to a great degree, for the most part... many Asperger people live a successful life... if you know the right diagnosis you're up against, certainly, I suppose its possible. At least, fairly normal, perhaps a little different... but different doesn't make one crazy. So yes, he can have a normal life, because most Aspergers people really don't want to be "cured" -- they're wired differently, and want to be accepted and respected for their differences. Though I can't speak for everyone, at least that's my feelings about it. Just from the intellectual potential you describe in your son... his intellect... are you sure you want "normal" anyway? It sounds as though if his energy were channelled right, he can possibly accomplish great things with his life. That's not 'normal' at all.



That's the part I can't answer for you. You'll probably benefit from more reading on A.S., and he does need to see a Child Autism specialist which can be helpful... otherwise, as he grows older, the symptoms may subside or intensify, and perhaps his condition will become easier to diagnose in the future.



I'd say not to let their "professional" confusion (and yes, some therapists and shrinks think they're gods and ready to slap on TM diagnosis, but they're not gods, and sometimes their "services" end up doing people more harm than good... don't let them get you stressed out. You're right to be asking questions, seeking advice, and don't let them slap on a diagnosis without keeping in mind the option even for a second opinion, because sometimes docs make errors and bad ones.

My son was observed for about 3 or 4 years in pre-K and the school system.. followed by occupational therapy for speech/coordination, etc -- but tests showed he was "brilliant" (so the principal told me)... he has the potential, but the environment had to be suited to accomodate his needs, where he would become focused and interested in school work again.

What I'm asking is, how long has your son been being observed and documentation following his progress at school? What I means is, if your son has already progressed this far:

How did he get there, that fast? Pre-K or homeschooling from yourself?

The important thing is that you love your son, warts and all. Acceptance is the best cure, and if you accept and love your son unconditionally, there's no telling how far he will go. Another thing is obsessions. If you don't want your son to turn out like me, let him talk about his obsessions, from time to time. Maybe two or three times a week.

Welcome to WrongPlanet, and welcome to my time warp.

Well worded.

About the meds, my daughter was diagnosed with ADHD when she was 6. We tried several stimulant based medications, including Vyvanse and either they didn't help her at all or they gave her side effects. One of the worst was when we upped her Concerta dose because it wasn't helping at the dose we had her on, she then started having trouble talking. It was kind of like stuttering, but not quite - like she knew what she wanted to say but couldn't get the words out. She would stop and start her words and pause in the middle of sentences like she was having to think about what word was coming next, etc So then I believe it was Vyvanse they put her on after that and she started twisting the hair at the base of her neck and tearing it out! We did like 2-3 days and quit. I think we tried 4-5 stimulants before deciding to try non stimulant based medicine. Right now she is on 25mg Strattera at night and 2mg of Intuniv in the mornings. This mix seems to be helping her a lot. She is able to focus better and is not so easily distracted which was something that was hurting her school work. She is in an advanced program and is very smart but she was having so much trouble staying on task, she just couldn't complete anything. Even teachers and helpers that just see her during lunch and about the school have commented on the change in her. Of course, it doesn't fix everything, but it has helped her out on the ADHD side of things.

You posted that you came to this site hoping to find that there is a chance, if he is AS, that there will be some sort of normal life for him. I can assure you there is a very good chance. Most of our kids have great prospects. Will they live the life you dreamed of for them? Probably not; few kids of any type do. But can they have a solid and independent life? Yes. While there are some exceptions, most of us expect our kids to be able to make an independent adult life that they will find fulfilling.

You may have to let go of certain dreams and assumptions, but learning to let go of dreams and assumptions is part of every parent's journey when raising their children. You are simply being forced to make that transition earlier and in a different way than other parents.

The goal in trying to figure out what is going on is not to debilitate your child with a label, but to hand you and his teachers keys. Keys that will help you channel his strengths, support his weaknesses, help you decide when to push v. when to let go, allow you to understand who he is and who he will be. Keep an open mind and discover the amazing unique being that is your child. We all want our kids to become their best selves, but to do that, we have to have some clue as to what makes them tick, and what their unique strengths and challenges are.

I wish you the best of luck as you start your journey. I know it is hard emotionally, and it will get harder. But it is an important process for you to go through so that your child will have the understanding and support he needs. There isn't anything "wrong;" there is simply something unique. This is the age when conditions like AS become apparent, and if the right label is found, you will eventually get comfortable with it.

Absolutely your son can live a beautiful life full of joy and fulfillment. But it will be his joy and fulfillment and as DW said, you will need to let go of assumptions you may have had about your own joy and fulfillment.

There is a lot of speculation about some very famous and stunningly successful people having aspergers - Bill Gates, Stephen Spielberg,Thomas Edison, etc. But I prefer to avoid measuring our kids against those kinds of pedestals and instead look to some wonderful, more grassroots level leaders with aspergers.

Check out the works of William Stillman, one of the leading experts and authors on Autism and Aspergers. You can read about him at www.williamstillman.com. You can also read a very popular blog by Gavin Bollard in Australia, who is an IT manager with a wife and two boys. He writes about having aspergers at www.life-with-aspergers.com.

It's always a bit of a shock when you first hear that initial diagnosis, but it does get better! If you'd like to read about how we worked through our son's aspergers diagnosis, you can read a guest post I did at http://www.hartleysboys.com/2010/04/we- ... itlin.html

And like another poster said, just love and accept your son, and the rest will fall into place

I didn't speak until I was four but I was diagosed with AS at seven.

From what you say, Aspergers sounds like a good diagnosis. It is good because, once you are on the spectrum, you are elligable for services (like social therapies and ot) to help with anxiety and sensory issues.

My daughter's school recommends taking her out for a reverse resource room (she has the academics skills, but take her out for a seperate social skills class)

You said that your child's issues increased as the med. dose was raised and then decreased when the dose was lowered. Maybe the child would do better with more therapy type services than meds? Just a question, you made the decision to medicate, I don't want to bully you or anything.

It's great that your child is interested in yu-gi-oh and advanced games!! The other kids will catch up, and then he will have friends!! Use the special interests, you can maybe take him to game or tournaments or sci-fi things, whatever, so he can meet people with similar interests.

Sorry for the spelling and typing mistakes, lots of kiddy craziness in the background.

Oh, I don't want to stand up on a soap box or anything, but always question everything you can whenver doctors want to medicate (or do extreme holistics) with a child. If you think the treatment isn't good then be sure to trust your instinct. Be very aware what the side effects are, particularly for children. Get second or third opinions if you have to, better to be safe than sorry. Again, I'm not trying to bullly you, I'm sure you didn't make the decision to medicate ligthtly, you probably are more aware than I am of the con side to the argument.

joeysmom04, it does sound like your son may have Asperger's.

If by "normal life", you mean can he grow up to be a scientist, engineer, or some other professional, buy a nice house, marry, have kids, and all those other "American dream" type things, absolutely. There are a lot of undiagnosed aspie professionals, and many of us would be considered fairly successful by normal standards.

If by "normal life", you mean will he ever enjoy playing in mud or becoming a beer swilling baseball fan when he could be doing interesting things like board games, perhaps not. Personally, I think that's a positive, not a negative, but maybe that's just me.

I do not agree that Asperger's is a handicap. Aspies do have difficulty relating to neurotypicals (nonaspies), and that works to the aspies' disadvantage, but that is only because aspies are in the minority, not because they are deficient. When Aspies were in the majority - and I've worked some places where that's the case - it's the neurotypicals that are at a social disadvantage.

I do agree with those that are skeptical of the medication. If a higher dose is making the symptoms worse, definitely cut back, and if I were in your position, I'd consider dropping it entirely.

As for the ADD, anyone really intelligent kid is going to have attention deficits in class, because they are going to be bored from the lack of challenge. Allowing them to learn more advanced material more quickly is the best solution, though sneaking in books to read under the desk can work too.

It sounds like you have a little AS child there to me also.

There certainly is a chance that he grows up to have what resembles a 'normal life'. Allot of aspies do. But I say resembles a 'normal life' because the autism will be there forever. You learn to play the game.

I also put 'normal life' in quotes. I also think you need to reconsider what a normal life is. What you consider a normal life may be a living hell to your kid. You may be wishing hell upon him. I know its done out of love and with the best intentions, but not everyone has the same definition of normal life. You need to consider that aspect.

I personally don't mind medication. I take anti-anxiety medication. I wouldn't function without it and I know that from experience. My son is ADD. He takes intuniv. It does wonders for him. He needs to take it around supper time. If it is any early he gets real drowsy. We tried focalene for him before. It was horrible. I guess you could argue it did to good of a job. He focused way to well. His OCD shot through the roof on it and basically he could not function. We are happy with the intuniv. But I think different people respond to things differently.

I don't know your son and he may very well have ADD, but to be honest with you, I'm very uneasy about putting such young children on medication to control their behavior and I feel many psychiatrists are too quick to do this.

Some children are just hyper or have more difficulty than others sitting still, minding, and concentrating on things they find boring, and they just eventually grow out of it.

My parents made me take a variety of medications when I was younger in an attempt to control my behavior...which wasn't disruptive to anyone or violent, but apparently I was "just difficult"....in that AS sort of way that drives all of you parents crazy apparently.

Everything itched, I get ready to go places, I wouldn't want to leave places, I wouldn't put on a dress, I cut up the shower curtain for some deep passive aggressive reason (no, it was just fun to feel how the scissors cut the vinyl actually), and I wouldn't do this, I wouldn't do that, and I did this and I did that. Whatever. Drove my parents crazy.

My mother now concedes that this medication they made me take actually made my behavior worse and was responsible for most of my meltdowns and erratic behavior, and they knew this at the time and this is why they kept switching it and fiddling with the dose so much.

Sometimes these medications are warrented and serves the persons best interest, but their behavioral side affects should not be overlooked.

And then sometimes they are not warrented at all.

I, too, was misdiagnosed with ADD (for me, though, the medicine actually helped). I only found out I had Asperger's around 16 months ago. I had actually read about it beforehand, but didn't see any connection because of the emphasis on the social difficulties. I have plenty of friends, and I never really realized the one major social difficulty I have: I can't read body language.

I know exactly how you feel worrying about your son's future. I do the exact same thing, and I haven't even had kids yet. I worry about if he's going to have AS, to what degree, and what difficulties it will cause him. I'm not worrying because I had any particular difficulties (except for a disastrous transition to college, which wouldn't have happened had we known I wasn't just ADD); I'm worrying because I haven't. If I haven't ever gone through a situation, how will I be able to help my child if he encounters that situation? How will I know what to do? Will I even be able to understand how he's feeling?

Having said that, I also know that worrying is pointless. It sounds to me like he will make you proud. There is a great chance for a normal life for him. I am currently attending Georgia Tech, which is the 7th best public university in the nation, and I made Dean's List last semester. I have plenty of friends, and I even joined a fraternity. I was dropped as a pledge, but not due to Asperger's (or anything I did at all). I had ten legacies in SAE (family members initiated into the fraternity), including my father (Georgia Tech), grandfather (Emory) and great-grandfather (MIT). It turns out that 8 of the brothers decided right from the beginning they didn't like me because of that, and I was dropped after 5 weeks. Because not all the brothers attended chapter (the weekly meeting), 8 happened to be the number needed to drop someone. Every other brother had no problem with me, and I had several contact me afterward and make sure I knew I was still welcome there.

I have always gotten good grades, and I had a 2260 on the SAT (1500 on the old scale). It sounds like your son will also be very intelligent. I was never picked on for being a nerd for one reason: I am nice to everybody. That alone will cause people to change their perceptions of you from "weird" to "quirky."

As far as the sensory issues go, I had those much more severely when I was younger, but for some reason now they're almost gone. When I was three, a blizzard hit, and I went out to play in the snow with my family. I remember pulling my hat down over my face and screaming because the snow hitting my face actually hurt. I also used to not be able to get into a hottub without feeling like I was being boiled. But now, I love hottubs, and I will go out in the snow (on the rare occasion there is any). The only thing I notice now is I can't drink hot chocolate at the same temperature as everyone else.

I hope you stay on the forums; you can learn so much here. And learning is the best thing you can do to help your son and to allay your fears. Right now, it's scary, and it's new, and it's not something you know how to handle. But we can help change all that because your son is lucky enough to have a mother who cares deeply about him.

I think a lot of kids are misdiagnosed with ADD and ADHD.....sometimes I wonder if these things are a diagnosis in themselves or simply a part of something else (please dont throw rocks at me, just my opinion). I have a son who is Bi Polar and was diagnosed as ADHD at age 8....I refused meds as I have a problem putting young children on medication until you find out if they really need it. I always knew that there was something more and after I read "The Bi Polar Child" I knew what it was and I told the doctor. He was reevaluated and diagnosed Bi polar when he was 12 but by then it was too late he was already self medicating and this behavior has continued, he is now 22....most of his teeth are gone, he has Hepatitis C from sharing needles and is in prison for the second time for theft.
My 20 year old daughter who is basically NT.....certainly no social problems! She does have problems focusing and has always had difficulty reading. She asked to try Ritalin and this works for her....she read an entire book for the first time.
My 17 year old was originally diagnosed with ADD but now has also been reevaluated and has been diagnosed with Aspergers. Most teachers will tell you your child is normal....the school system doesnt have the money to offer services. The best thing to do if you suspect Aspergers is talk to his doctors. You can also see if you have a Regional Center or Easter Seals can also help.