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My son is 13. He is, in my opinion, very mildly affected by Asperger's. I say that because he attends public school without any added services. The school does not even have it on his official record. He has a small circle of friends. He is obsessed with NHL hockey but it doesn't get too out of hand...it helps that most 13 yr old boys love sports. He is not athletic but not totally hopeless either...he plays tennis, swims and plays baseball (not very skilled but he still plays). He is not locked into routines. His issues are more social ques and allowing his feelings to buld up until he over-reacts (thankfully, he reserves this for home). Most people do not know he has Asperger's. In many ways, we are blessed that he is not more seriously affected. In other ways, I feel like we deal with a hidden disability. Since it is not obvious why he has certain issues and because he comes off so 'normal,' people just perceive him as weird. I know that some of his odd behavior (social awkwardness...for example: choosing to go inside and be alone when he has been playing with a few kids) is blamed on behavior and/or parenting. I also feel that there is really no place I can turn to talk to someone and get support. Obviously people that do not know about Asperger's don't get it...but, since my son's issues are so mild, I don't get much out of any services offered to people dealing with this disorder. I am extremely thankful that my son does so well...but sometimes I need support too. Does anyone have a child that does pretty well day-by-day. Do you just let that child roll along or are you still seeking out more for him/her? Do you have any ideas for a supprt system when you just need to talk or you need help working through an issue?

I probably don't even make sense...lol.

Thanks...
Jess

Last edited by chaos42 on 14 Jun 2010, 9:46 am, edited 1 time in total.

Welcome to Wrong Planet! My son is still very young (5), so I don't really know where his path is going to take us. I am sure others here will be able to give you more advice. The one thing that I did want to say is that many posters on Wrong Planet grew up never knowing that they had Asperger's. They did not find out until they were adults. So, somehow, they made it and many are doing just fine. Like you said, your son's case is mild, so he will more than likely be fine too.

I am glad that you have come here for support. I have found a lot of support here-----

You do make sense. My daughter wasn't diagnosed until she was nearly 16 because she appeared so 'normal'. I too was told that the problems she was showing was down to poor parenting. People just couldn't see the truth. She was a well behaved, normal child outside of the home but as soon as that door closed she erupted. Turns out she was trying so hard to 'be normal' that she just couldn't hold it in any more once she was on safe territory.

You just have to keep doing what you are doing, which is your best. I've beaten myself with guilt over not getting her diagnosed sooner, not getting help sooner and all that. But the reality is, that probably like you, I was trying to do the very best I could in the circumstances. You can't do more than that.

Even with a slightly more affected child, there are people who blame everything on behavior issues or bad parenting, and simply refuse to "get" it. That is a constant battle for everyone here; you have no choice but to learn to tune out the outside world and build confidence from within that you have done your best, and your child has done his best, and if all those critics were in your shoes they would probably be making a really big mess of it

My son is considered extremely high end, but he does have a co-morbid (loose joints) that has made services a necessity, and does make him jump out a bit among his peers.

I think that one of the big dangers with a high end child is that gradual eating away at their confidence the world likes to do, because they do appear capable of doing things they actually are not. My son is in Boy Scouts, which he generally has done really well with, but he is now finishing a 6 month stint as a patrol leader that made him miserable. He really tried, but all his failures really glared at him and it ate away at him that he just couldn't lead despite everyone else thinking he could. Being pushed a little beyond one's comfort zone is a good thing, but some things our kids really can't do, and we know where there lines are better than anyone. But, you know, my son keeps trying to do what the world asks of him, and he is mostly really comfortable in his own skin, it's just ... well, hard to watch as a parent. He's had a really rough year - 6 months ago I would have told you he had a nice, small, solid group of friends just as your son has but in the meantime one of those friends decided to turn on him, big time, and that has been devastating. We never saw it coming.

Home and family need to stay the safe place for our kids, where they get to be who they are without judgment. That is one of the most important things we offer them.

I do seek out "more" for my son when I think it is appropriate, but I also know there are limits on how much "more" he wants to have in his life. My goal is for him to be happy. To have time to invest in the things that give him joy, to compensate well enough on the weaknesses to be able to meet his own goals (and they are fairly lofty), to not give up on something he really would thrive with just because the road is rockier. I think the later is where I end up working the hardest; many AS have trouble seeing past the roadblocks, so they'll let things they really, really want slide, seeing them as "impossible" ... and resent it, but figure they have no choice. My job is to teach him that if road A is blocked, he can take road B. If road B isn't working we'll find road C. And we can keep going on through road Z depending on how important the goal is. That level of flexibility is something he absolutely will NOT learn on his own, but is essential to getting the things he really wants. It's tough as a parent to know when to see through the shrugs and realize this IS a time to push, v. one to let ride or the child will stress out.

I have twin sons who are 10, both dxed with Aspergers. One is pretty obviously affected. He moves around and stims a lot, he withdraws and can barely speak when overwhelmed, he can be completely oblivious that a person is right in front of him talking to him...so any observant person will pick up on the fact that everything isn't completely "normal" pretty quickly. My other son is much more physically controlled and verbally responsive, and appears "normal" in most situations, but I actually think the world can be harder on him than his brother. He notices what people around him are saying and doing (and often misinterprets it to his own detriment), his social anxiety is higher, he is not so good at deciding what his own limits are and pushes himself to do what his peers do (example: would never say "no" to a birthday party, but may spend days in sensory overload mode afterwards) and the adults around him often expect more than he can give socially, and treat it like a"won't" rather than a "can't" situation when he fails to meet their expectations. What DW said about the world gradually eating away at their confidence is so true!

We seek out some extra support. For example they are both attending a social skills half day camp this summer, and attend a regular group throughout the school year. They both have IEP's at school. I wasn't really sure if this was necessary at first, particularly for son who appeared to be doing OK, but we found that without accommodations, he accumulates stress slowly, leading to frustration and depression over many months, even if he appears to be doing fine day to day at first. But we have also said no to many things too. I think it really is OK to just let them be them, without pushing all the time. And some things just weren't a good fit, like the parents of Autism spectrum kids support group that just left us feeling kind of guilty for even being there, because our kids were so much more high functioning than the majority of the other kids there, and unsupported because our issues and concerns are mostly different. Wrong Planet has been a great source of information and support for us. I learn something every time I come on here!

Please read my Blog on my 2E Child. You will, I am sure, be familiar with many of the things described. You may also pick up a few pointers. My wife is doing an exemplary job in raising him. I have detailed our basic methods used to great effect here:
http://2echild.blogspot.com/

My boy 11, has had hockey as a special interest since he was 5. He has also played hockey since age 5 and plays in a travel league. He is HF,, but we do not hide his AS. We tell people on a need to know basis (coaches, music instructors, and a few playmates). There is a nice book out called "Can I tell you about Asperger Syndrome" which explains it in simple terms. My son will come in from playing "essentially leaving a group of boys" because he wants to be alone in the basement. The other kids living near us and on his teams have just come to accept his differences. However, school has been another story and we are running into teasing and bullying as he becomes older.

We got a chance to meet Olaf Kolzig (ex. NHL goalie) whose son Carson is on the Autism Spectrum.

We have that book....LOVE IT!! ! We used this book to tell my son about his disorder. We have used it to explain Asperger's to many people. I love being able to hand out a book that only takes about 15 minutes to read and yet explains so much.

Jess

My Middle Son is kind of like that, but he has a few obvious behaviors that require us to tell his teachers. Two years ago, before he was diagnosed, he had a teacher who sent home notes nearly every day about the way he dresses. He wears long sleeves and pants and buttons his shirts all the way up because he doesn't like the feeling of the air on his skin. You'd think such a mild mannerism would stay under the radar. He also gets overwhelmed by the chaos of the classroom. He doesn't do anything disruptive or really odd about it, but the school won't give him a quiet lunch so he can get a break. If his teachers know most of them are sympathetic and will look for excuses to send him to the library or another quiet place when they see it's getting to be too much for him.

As he's getting older, some of his quirks are more obvious. They aren't getting worse, but little kids in general are more eccentric so his awkward gait doesn't stand out. He doesn't always do it and is now becoming more aware of it and may be doing it less so by middle school maybe it won't be obvious at all. He's very quiet and very smart so he comes off as a very shy, studious, geeky kid more than "disabled."

If your son has AS he has AS. It's nice for him that he's so capable, however, he still has to compensate for his difference as do you.

I don't understand why you don't insist that the school have his Dx on file, and that he have some social skills services at the school.

Why not? Does it serve him to be "in the closet" so to speak? It sounds like he could use help in managing his emotions and learning/practicing social skills.

If you did that, you could connect with the other parents receiving services, too.

Have you been to support groups for AS? How do you know they wouldn't provide you with some support and kinship? There might be other highly capable aspies there and/or parents of capable aspies.

There are many people like your son on this site! Maybe you could post asking if anybody lives nearby? Or if anyone could recommend a group near you?

I do not have his ASD on record at school because he has never needed it. He does very well at school. He sees a therapist outside of school to work on emotions and practice social skills.

He is not in the closet. His guidence councelor knows and I sit down with his teachers at the beginning of the school year and explain everything to them. It's just that he has never needed any special accomodations. I tell them as more of a precautionary measure. I figure it is better to be up front than wait for a problem...because then it just looks like I am making excuses. My son just finished 7th grade and he did great. My son is also free to tell anyone that he wishes to tell.

When I say that I feel out of place with other ASD parents, I base this off of the ones that I have met and I base it off of replies that I have had on other web sites. Most people dealing with ASD's seem to think that we have it made. It's great that my son does well, but we still deal with a lot. I also feel out of place because the parents that I have met are all trying many different therapies and desperately looking into any possible thing that may help. I don't feel that my son's disorder is a cause for desperation. He does well. Sure I wish it could be a little easier for him.
Jess

I know the feeling. I guess we sort of straddle worlds with our high functioning kids, but are never fully in either. From families with "normal" kids we get far too much sympathy (every family has hurdles; I don't think mine are that much worse, just different) and to families with special needs kids we got off easy and, thus, can't possibly understand (even though I think what we can learn from our more communicative kids can be invaluable to them, and it's a resource I wish they would let us share). Hopefully you will be comfortable here; we really have the full spectrum in this community, and there is much that is similar clear across the spectrum; it is really insightful.

Even a child who's "high functioning" in a lot of ways may have certain behaviors/obstacles that are a HUGE problem for them. Eldest son is very lonely. He's an outgoing people person with AS who struggles with social skills. I suspect that is probably why he's having such huge problems with some of his co-morbid medical problems. His AS is fairly mild, but he's still profoundly affected because his social drives are so high.

I think a parent of a high functioning child can have as much to contribute, as far as advice etc, as anybody.

Hi,

My son is 13 too and is "high functioning". He makes good grades and is very capable. However, he has no idea how to act in a group of other kids his age. We too have been blamed for his behavior and I don't know how many times we have been told to "just punish him" or "he'd never get away with that behavior if he were my kid" etc.

We get so much "parenting advice" from our family and friends that I just want to go crazy sometimes. I'm definitley going to have to get that book to give to all my family members.

It sounds like your child has a lot in common with mine, except that mine won't even contemplate participating in anything athletic.

I just discovered this site and I have already found it to be very helpful. Hopefully you will too.

Welcome.