My Son is Undxed

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So I have a question for the parents on this forum, for a father just tip toeing into the pool of AS.

My son has just turned 11 and finishing up 5th grade. We have had only very minor problems with him in school over the years, being some impulse control issues mostly. He has never shown "too" obsessive of interest in any one thing to the exclusion of all others. He has some good friends, but he is a bit on the akward side playing with them (has to be reminded to take turns on video games etc). Until this year, the only thing teachers have said were in kindergarden it was brought to our attention that he didnt like the new teacher to touch him--well this was on the third day of school and he got over it, so we didnt put much stock into that incident.

In second grade we were told to expect to hear about ADHD next year, well his 3rd grade and 4th grade teacher were phenomenal teachers, he did well, was treated well, had friends, never picked on in all of school so far, but then we come to this year, 5th grade.

Some background here--his 5th grade teacher is just plain awful. She is boring to the point of tears. She doesnt even read books to the class (one of my son's favorite parts of the day in past years) she just plays them books on CD, the same series all year long, the complete, unabridged Chronicles of Narnia series ALL year long. This year is boring him to tears. She is a very unmotivated teacher.

With that in mind, she asked if she could bring in the specialist to look at my son because he was having lots of impulse control issues. We agreed and after observations, the observer said she saw some red flags for AS (I hate the whole "red flag" descriptor to begin with, makes it sound like something dangerous to me).

Well I started thinking about it and these are the AS characteristics I came up with I had seen over the years at home:
-avoids eye contact, but only sometimes, and only with some people. When he gets to know you, he is much better about it.
-Has some mildly obsessive interests.
-Occasionally says something that might seem a bit blunt or rude, but not meant as such
-Used to throw tantrums, but has largely outgrown that. Under extreme pressure, or after a bad day he might still have a meltdown.
-Has friends, and likes to do stuff with them, but has to be reminded to schedule the sleepover or call them, just doesnt think about it or do it unless he is reminded a lot. Never been bullied or picked on, loves to meet new kids, and rarely plays alone at school.
-Used to get upset over change, but seems to have outgrown this. He has done all matter of new things.
-Has a lot of trouble with handwriting and small motor skills, though his handwriting has gotten better.
-Some anxiety issues, but usually over small things. (I have anxiety disorder, so I wrote it off as that).
-Trouble with reciprocal conversation unless it is a topic he starts or happens to be keenly interested in. Asking how his day was at school ends up with "good" as about the only answer we can get, but that doesnt seem so atypical to me.
-Extreme noise (movie theaters when its loud) he has to cover his ears. Also some small sounds get to him badly, pencils on a hard surface and paper towels ripping, for example.

There are probably some others out there I am overlooking or not thinking about, but my point is, unless he has a bad teacher, so far if he has AS (and i think he probably is on the spectrum somewhere), it hasn't really caused him much trouble that we are aware of. So my wife and I, after a lot of deliberation decided to hold off on testing for the time being, and see how middle school starts out next year. If he has trouble we will get it done then. Right now my son doesn't know any of this, doesn't know anyone has said anything about his behavior, or even that he has been observed. The one thing he is concious about is sometimes what people think about him, and we are worried that all the extra attention would make matters worse, when things dont seem so bad at the moment. Any special ed label would broadside him in a bad way at this point.

So, my question is, are my wife and I making a big mistake waiting until next year, at the risk of middle school and puberty starting out bad for him, or is it okay to wait and see how things go? I know no one can answer this for us but us, but I thought ot draw on all the best experience out there.

Thanks for hearing my long and rambling story.

Thing is you never do know when it is going to cause issue or not. Services for adults are almost non-existent, you need to bare this in mind. It is all set up for children. They either feel if you slip through the net they can’t help you or you don’t exist. Reform is going to take a long time, don’t assume when he grows up it will be there.

At the moment he seems ok. However there is a difference between childhood/school and real life. Presumably school prepares you for later on but in reality this isn't quite accurate. People usually go through certain millstones on their own, it isn’t something explicitly stated because it is considered the norm. Sometimes there really isn't anything to worry, about, but it is something that you should be conscientious about nevertheless.

I would say you need to talk to him. At 11 he is well capable of understanding. He doesn't have to go for diagnosis now. He just has to be aware he has that option. Diagnosis itself is not a resource. It might help him get resources. Sometime people just want it for piece of mind.

Frankly he doesn’t have to be diagnosed for you to help him. The not remembering reciprocate is very familiar to me. I was exactly like that (except I never got passed the acquaintance stage). The only reason why people came to my house was because my parents invited them. I was a diplomats kid, I made no ties with anyone, and never gave a second notice leaving peers behind, never thought contact anyone. You can help him in a non patronising way, by encouraging him to reciprocate but not excessively. It is somebody you can learn. It is not always the same, it depend on the person. It is not an exact science but it easy to understand if you explain that if something does something for you it is prudent to do something in return, unless they tell you twice not to bother.

Also it should be his friends. As he has already got some, don't try and force other friends on him. You don't need many friends. I only have two close friends. The main thing is you are satisfied with the ones you have got, and know how to reciprocate.

Last edited by 0_equals_true on 21 Apr 2009, 12:20 pm, edited 1 time in total.

If your son is experiencing major impulse control issues, you might not want to wait until next year to "see how it goes." In middle school, kids have a bunch of teachers, and none of the teachers get to know any of the students as well as your child's teacher generally gets to know him in elementary school. Because of that, it is unlikely that most of his teachers will be prepared to deal effectively with his poor impulse control if you don't have a handle on it, from a professional perspective. Whether or not it is AS, if there is a diagnosis that is recognized by the school, and would result in some kind of assistance being available, you would be in better shape having that assessed before you are in the midst of adjusting to the departmentalization of middle school. Whether and how you use the information you get would then be up to you.

Whether or not you get him diagnosed, you might want to at least tell him about aspergers syndrome. I wouldnt introduce it as 'here is whats wrong with you'. I wouldnt have a long drawn out conversation about it either. Perhaps just mention it as something you noticed. For example, 'I was read an article about something called asperger syndrome online yesterday. It is a interesting condition that means your brain develops in an unique way. It seems Albert Einstein, Issac Newton, and Bill gates have it. It sort of reminded me of you. Anyways, its not important, I thought you might want to take a look at the article, it might interest you.' At that point you could give him an article discussing the positive aspects of AS, without over-exaggerating the drawbacks.

Maybe a good article might be http://simple.wikipedia.org/wiki/Asperger_syndrome

Of course you know your son's reaction better then I do, so read over the article and think if it would be something your son could read without getting defensive. There are many many articles which describe AS, some focus more on negatives, some focus on positives, etc. You might want to just google Asperger Syndrome Article and go through the list till you find one you like. Youtube also has quite the selection of films about AS, made by the people with AS, which in general present it as more of a difference then a problem.

In any case, if your son knows he is weird, letting him know that there is a name for it, and that he isnt alone is a great thing. Make sure you mention the positives, and tell him that this condition describes him a bit, but by no means defines him, or what he can do.

Middle School can be a great change or a disaster for AS kids. I can honestly say that I would NOT have wanted to face this school year - 6th grade - without an IEP. The very first assingment had my son in tears and stressed out, and I was immediately asking what accommodations we were going to get. The amount of required writing takes a GIANT leap and if there are speed issues or legibility issues or comfort while writing issues it will cause problems.

5th grade he did wonderful. Had the best teacher in the world (I am SO sorry to hear that your son has such a coaster) and no issues at all, although he still had an IEP and services.

6th grade is something else.

The problem is, if you get to middle school and need an assessment, it isn't going to happen fast enough to deal with the issues as they fly at you. An assessment is going to take about a year to put together. Things move SLOW.

Of course, even with an IEP we're having to support our son through his homework, about 2 hours a day. If you are already prepared to do that sort of thing, you might be OK even if issues come up. But it's hard. I like having the IEP so I get some weight behind my concerns.

Our diagnosis was through the school and is school use only - that is rare, apparently. But it won't be a permanent record thing this way and I rather like that. The plus side is that he gets extended time for testing, and that will include all college admissions tests. Apparently lots of high school parents try to get AS assessments just for a leg up on the SAT's.

I honestly don't know what to tell you as far as assessment goes. Perhaps you can find another AS child at the middle school and see how it has been for him? My son's teachers are all dedicated, but they have over a hundred kids a day, and they just don't have time to figure out one unique child unless forced to. It is a factor to think about.

And I agree with Tracker that this is something you could get your son's input on. He sounds like a smart little guy, and kids like ours can be incredibly self-insightful.

The teacher didn't read to me in 5th grade either... then again, I read to myself from the age of 3 on...

I wouldn't say a thing until he was formally diagnosed by a specialist. Then, consult with the specialist concerning what and how much you should discuss with son, if necessary.

It will obviously come up if he gets evaluated. He may not have Asperger Syndrome. A strong, obsessive interest(s) usually causes thought intrusion and attention issues in school.

It seems as though he would have had more trouble at this point Maybe not.

I wouldn't rush out to get him evaluated if he's doing well academically and has some friends and feels confident. If he is struggling academically and socially to the degree that it's impeding his ability to do well/learn or make friends, then it won't get better in Middle School.

Another perspective: My son, nine, wants OUT of special education and just wants to do it alone. He doesn't like any of the extra attention and wants to be on his own. I do think it is stigmatizing (special ed) and becaue my son is so smart, he has a keen awareness of how he much he doesn't fit in with other kids he sees in special ed. that are much more severly affected and nonverbal. Even though he is in reg classroom, he does go to special ed room, and he has an aide etc. He wants to start 5th grade minus the coddling. I can't blame him. I would tread carefully with special education. I wouldn't say it is the best route for all kids. Some do excellent. Others, resist it and feel smothered.

I was aware of both the gifted programs and the speech and assisted programs... after awhile, I just wanted to hide. I didn't want to be different on all ends, I just wanted to be me. At the same time, there are times I wish I'd known more about how I functioned then in order to not blame myself, for lack of a better phrase, at that time. I think learning about it is a good thing; how far you take the diagnosis is something to consider the ramifications of.

And I have to admit, when I first read the title... I saw "My Son is Undead" - so I had to come read, even if I knew it was my own slippage.


M.

I have a dx son who is 4yrs and during the diagnostic process, I realised that my older son 7yrs was far more impaired in many ways. I then thought maybe he also had AS, but maybe milder/different expression.

So we went ahead and had sessions of Ocupational Therapy, and had him assessed for AS. We too were concerned about how he would see all of this, and how he would hate to be different and think there was something 'wrong' with him.

In our case the complete opposite happened!! It turned out that he did not even nearly meet the criteria for AS, and he came on so so much with the OT sessions. He LOVED the attention it all brought, and it changed him completely!!

As I live with it day after day with my younger son, I was so sure he had AS, just shows that we may not always be right.

I would say no harm in having him assessed, might turn out just to be sensory issues. You have certainly taken the very best first step and found Wrong Planet.

I love to see the Dad's take the initiative to ask for advice, Good luck with it all.

It is better to make the mistake of special ed than not to have tried it. Also it is is educational accommodations, not some remedial class.

I also think is odd of equinn to put so much faith is a "specialist" view on when kid should be told. And what basis do you think they can advise you on that? I'll tell you: there is none. it is pure specuationt, and in addition to that they don't spend anything as like as much time with your kid than you do.

please explore a dx now.........we waited until middle school- mostly because he never had any problems in elementary. his grades were fine, and he never exhibited any alarming behaviors...........middle school was H*LL..........the larger school, the larger student body, the transitioning from class to class, the sheer amount of noise..........AAAAAAAAAAAAAA

This same "specialist" has published books on the subject, has years of experience, and I trusted he and his associate to evaluate my son. Therefore, yes, I would consult this person and his associate on this matter.

It doesn't mean I'd do whatever they said. I'd just seek advice. Problem is I think they charge by the hour.

: )

This same "specialist" has published books on the subject, has years of experience, and I trusted he and his associate to evaluate my son. Therefore, yes, I would consult this person and his associate on this matter.

It doesn't mean I'd do whatever they said. I'd just seek advice. Problem is I think they charge by the hour.

: )

I don't know if it's the same where you live, but the assessment process for us was painless, positive and private. I would go ahead and get it done. It's better to know, and better to know as soon as possible.

From your description it does not sound certain that your son would even be on the autism spectrum, so I would not discuss Aspergers with him until you know for sure. Why give him that extra worry if it is unwarranted? You could just discuss how you've noticed that he has a hard time paying attention at times etc. and that the specialist will let you and him know how to make school as successful as possible for him. Coin it in positive terms, but don't give him any labels before you even have a dx, IMHO.

And 2 thumbs down for that teacher.

Alice, I am from Canada too (B.C)... I thought the assessment was absolut hell and anything but [/b]private.

Yes and they even charge the you even to find out exactly what it is they actaully do too.

Your trust may be misplaced. Let me tell you there are no specialist in this field, it is misleading even to entertain that thought. Nobody can claim to be and 'expert'. Virtually all thinking on the subject is pie in the sky at the moment. Psychiatry itself is pseudo-scientific and highly arbitrary. They are not methodical, or rigorous and don't record or share data very well. Doctors agree with me, increasingly. It is basically their opinion as to whether to tell the child or not, and much of the stigma that they may be trying to guard against is of their own creation. I'd much rather trust what a neuropsychologist has to say about a child educational needs following a standardised test than some subjective opinion a behaviourist has to say. Your opinion is as good as theirs.

It you ask people on the spectrum, who have grown up whether they would have preferred to know early on. Overwhelming the answered is yes. But you are welcome to ask that question yourself.