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I have spent the last few days reading on Aspergers. I hate to say it but, I'm even more confused now then when I started. Seems to me no one really knows why it affects some people and not others? That there is such a broad spectrum of behaviors its unbelievable. Im not trying to be rude but, I'm having a hard time wording my thoughts. I mean you get chicken pox - X Y and Z happens and "they" can say you were exposed thats why you got it. Aspergers and other conditions is just fate?

DS is 8 - 4ft11 and weighs 118 lbs -definately a big kid - no medical reason he's big - just genetics. He has NO sense of personal space - it just does not exist. I never knew it was "normal" (I know to rememer the spectrum that everyones normal is different) for some kids to have to touch like that. I just thought he'd outgrow it.
We have tried sports - meltdown after meltdowns - said people would look at him - local Y he refuses to go back - because a lifeguard said "Hey buddy" and smiled at DS - was too much for DS. I'm thinking Social Anxiety?

So Where do we start? DS is being homeschooled and we have new insurance so a new DR will be available. Just tell the new DR test DS for Aspergers?

Sorry if it rambles or went in circles but, DS is about to get up so Im trying to grab thoughts and get them out as fast as possible.

Thanks for any advice.

The problem is no one really knows. Very few things are certain in this area. It's possible someday we will look back and discover that autism/AS was actually 500 different issues with 500 different "causes."

Having your son evaluated is a place to start, but you should know going it that it may not be either simple or reliable. We all just have to find out as much as we can and do the best we can with what we know. Feel free to ask questions and we will try to answer them.

Your doctor would probably not do the evaluation, btw, but may (or may not) give you a referal to someone who can. You might need to fight for this. You might need to go elsewhere. Your insurance might not cover it. Just to warn you of potential hazards.

The information on Aspergers that is out there certainly is confusing. We've had a real struggle with DS because he was diagnosed based on a performance he put on for the psychiatrist (he has a habit of "demonstrating" when he's in that type of situation) and not on the actual behaviors we were concerned about. Turns out, the accommodations he got for Aspergers were exactly what he needed, and he's improving all the time - and the behaviors we were concerned about are not uncommon in Aspies. I think there is no such thing as a "typical" case of autism; the guidelines in the DSMIV are just that, guidelines.

It might be helpful to think about it this way - some people are just different. If the differences get in their way, we - as parents, especially - should try to find ways to help them out. This applies to any kind of difference: height, neurology, handedness, big feet, etc. It doesn't matter if the difference fits into a neat package or not...what matters is that you get specific information on what your child needs and how to help him out. Good luck!

I just saw this blog post - the poster clearly knew nothing about Aspergers but her enlightenment to the issue of difference is really beautiful. (She's sort of the Anti-Smockity Frocks, right?) http://www.epbot.com/2010/10/why-i-love ... n-157.html

There is certainly a lot of open endedness with ASD's. It sounds like you're quite frusterated by that aspect and that's totally normal. I had a unique situation that sort of prepared me for my son's eventual diagnosis. Before my son was born, my husband was diagnosed with muscular dystrophy. Our immediate concern was "well, what can we do?" Even his diagnosis was a long and drawn out process that sent us from doctor to doctor and involved several tests and biopsies. It took almost a year to get the rather vague diagnosis that we received (there are many different types of MD and 6 years later we still don't know exactly what kind he has). We asked about cures, treatments,and causes and were told that there really aren't any. Well the cause is thought to be genetic, but in my husband's case, there is no family history. Anyway, I found this to be a very hard pill to swallow. Being mostly healthy, I was used to the typical straight diagnosis, treatment, cure order of things. I hated knowing that there was nothing we could really do. His prognosis is so uncertain.

Once we learned to accept the situation for how it really is, things got a lot better. We focused on the positive and learned that MD is really no big deal. We have to adjust the way we do things, but we can still do them. We take elevators instead of stairs and get the best parking spots - pretty clutch around the holidays . So what if he can't throw the ball around with his son - the kid likes Lego's way more anyway.

Of course MD is not the same as AS, but we approach my son's AS in a similar way that we approach my husband's MD. We can do everything a "normal" family can, we just do it differently. But yes, I would seek out a diagnosis so that at least you know exactly what you're dealing with. For us, the key has been to learn what strategies work and which ones don't. All kids are different, regardless of whether they have an ASD or not. The cause I find relatively unimportant because knowing the cause doesn't change a thing about the present.

I apologize if I'm way off base about what you were asking about.

Exactly. My line is that a label is only as good as what it does for you. Maybe eventually you'll need a label, maybe you won't. Right now, since your son is currently home schooled, you can try out various accommodations and strategies using your instincts and, thus, be able to help him - label or no label.

I think what I would do in your shoes, and bear in mind that I tend to avoid doctor appointments and such things because figuring out the schedules and making the calls stresses me out, so maybe what I would do isn't what you would do ... ANYWAY, what I would do for now is read around the board, think about the strategies and insights shared here, and try out those that seem to fit. If treating your child as a spectrum child in some ways helps, then you continue with it. If it doesn't, then you've possibly ruled one idea out.

The focus really is simply on figuring out what makes your one unique child tick, so that you can help him become the best "him" he can be.

My son is very much a sensory seeker in the area of touch, and has zero sense of personal boundaries. For him, it is driven by several things, including the fact that he has loose joints, so he doesn't get all signals his fingers send out when he touches something. As his occupational therapist explained it, he needs to move and touch just to have a sense of where he is in the air. He will never outgrow it, but he has learned that sometimes all that movement needs to stay isolated to your own body. We try to meet his need for physical closeness by keeping home a relatively free space, where mom can be cuddled when he needs to (within reason, or it could be a hazard!). But people outside of this family - he has to ask, but better yet just resist the urge. There are many, many ways you can honor your son's needs while helping him meet societies expectations. They learn to divert, and be careful about time and place. That is entirely reasonable to ask them to learn. Just ... be patient

You may find your son has other sensory needs, as well. Listen carefully to what he says, and take it seriously. Lights can be painfully bright, fabric painfully itching, and noises painfully loud. Heat registers can make noise, and toilet flushes can be terrifying. If he has such issues, none of it will go away by assuming he is being unreasonable or will just get used to them. You need to be sensitive to the issue, until he is ready to slowly confront it himself and learn to cope.

I mention the sensory issues because that may have been a large piece of why some of the activities you tried failed.

As for what causes AS - leading theories seem to believe it is genetic, but involving more than 25 genes, so it the trace isn't always that obvious. There may be environmental triggers or contributors, as well, but that gets more difficult to ferret out, and science has not yet been able to confirm any of the theories you will hear and has, in fact, dis-proven many (but not to the satisfaction of the believers). Getting into all that, in my opinion, is the job of the researchers. I figure that my job is to parent the child that sits in front of me, as he is, and I believe that spending too much time worrying about how he became him takes away precious time from the task at hand.

My son is doing great, btw. We are certain, after 6 years with the diagnosis, that it "fits." We are also comfortable that he has a good future. He has overcome so many significant roadblocks already, and he is a happy kid.

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If you really want to find out for sure, I would go ahead and have your son evaluated. It may give you peace of mind. But, even if you do receive the diagnosis, there is no cure. The best thing you can do is read and educate yourself on ASD's and use what applies to your son to help him cope better. There is no doctor that can really give you all of the answers that you need. You will more than likely get more help from occupational therapists and speech therapists.
There are so many claims for cures for autism out there, just be careful that you don't just jump on the bandwagon for them all. Sure you will want to try things to help your son improve, but the first step is to learn as much as you can about AS. And you are absolutely right---autism is a very mysterious condition, and every case of it is different.

Also, having a better understanding of how your son is wired and some of the struggles he faces will help you to know how to help him. Unconditional love and acceptance of your son's differences will go a long way at helping him develop.

Welcome to Wrong Planet, and I hope you will stick around!