A Parent in need of advice

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I suspect my child (12yrs old) may have Asperger's.I had read an article about AS in the paper about someone who was diagnosed at 45yrs old. I was actually relieved to know there is a name for this, I was becoming very frustrated with her behavior. For example, she is very bright, started reading young, no problems academically but after reading some books suggested on other post - she exhibits many criteria of AS: limited interest playing w/ peers, unusual use of lang, takes everything literally, doesn't follow conversation/sustain it, loves history (to the point of watching a show on the Prohibition of alcohol while folding laundry), very knowlegable about things that interest her, won't point anything out, limited eye contact w/ people outside home/strangers, uses inappropriate tone of voice...there's more to list but my question is, Where do I begin? She needs to be evaluated - Do I go through her school or her pediatrician? or maybe psychologist? Anyone wished they had done it differently? What to expect? Thanks for your time reading this, any help greatly appreciated.

is considered a form of Autism so you do have the right to request an evaluation through the school system. However, it can be difficult to get services if it can't be proven that the disability is impacting educational performance. Yes, we all know that this includes social skills but it just depends on your school and how well they understand the diagnosis. But I would try that first. Put your request in writing and be aware that they have 30 days to either arrange for an evaluation or give you a reason why they won't test in writing.

It's free if you do it through the school, request that they do an evaluation.

I am hesitant to go through the school only because I feel like my child has already been labeled the "weird kid". It is a small school. Also I read somewhere that once the school is involved they (school system) do another follow up in 2 or 3 years? Has anyone a had positive or negative experience using the school to diagnose?

Welcome to Wrong Planet!

I suggest you start with a trusted pediatrician who knows something about autism spectrum disorders (ASDs) and Asperger's Syndrome (AS). Suggest you "interview" your pediatrician to see how familiar s/he is with ASDs and AS, how many children s/he's diagnosed in the past 6 months, etc. and if they don't have enough experience, find a pediatrician who does. This is a critical step, and will make life much easier when dealing with school systems. Next step after the diagnosis by an MD is to get an evaluation done by the school, then get an IEP for your child. There is lots of excellent information on this website and elsewhere on IEPs, how to make them, and what should be in them.

In the meantime, there are lots of good books on the subject so you can start educating yourself, I think there is a "book thread" somewhere on this website. If you can't find it, I recommend "Growing Up on the Spectrum: A Guide to Life, Love, and Learning for Teens and Young Adults with Autism and Asperger's" by Koegel and LaZebnik. Also, anything authored by Temple Grandin is worthwhile reading, regarding the topic of ASDs and AS.

Best of luck, -DD

I have been diagnosed by the school system, worked out relatively fine. I do not understand your hesitation, if the child is already recognized as being odd the school will recognize the child's problems etc easier.

As for follow-ups, the school I go to I thought they did it every year. This is because the child needs to be reevaluated to see if the child requires more services (additional help) or no longer needs them.

Going to an autism specialist is generally costly. I think going through the school is the best first option.

I've seen this before, but what does it mean?

Well, hello and welcome to the forums.

For starters I think you need to first consider what it is that you want from an official diagnosis. I am not trying to discourage you from learning all you can about asperger's syndrome. The information may indeed prove very useful to you and your daughter. However, unless you are having problems which require extra assistance, and you NEED the label in order to fulfill the bureaucratic paperwork, getting officially diagnosed isn't going to help anything.

If your daughter is flunking out of school or having major problems which requires the school to do something different, then getting a diagnosis is helpful. This diagnosis will help act as leverage to get the school system to handle your daughter differently (and hopefully bring about better results). But if your daughter is doing fine at school and your major problems consist of things like limited eye contact (o horrors), then I don't know how getting an official diagnosis will help.

There are many people with Asperger syndrome/Autism (myself included) who grew up, went to school, got jobs (well, had job), and now live independently with no formal label. I'm not saying that your daughter is normal, nor am I saying that she doesn't need to perhaps learn a new set of skills to help her function effectively. But I am saying that your first thought when looking at this new information should be 'how can this information help us', not 'how do I diagnose my daughter'. If it turns out that a diagnosis is indeed a helpful thing, then go for it. But I wouldn't jump directly to spending the time, energy, and resources getting a formal diagnosis if it isn't going to help.

That being said, you may want to talk this over with your daughter, read some books about it, have her read some books about it, and maybe discuss how this information can help. More often then not simply knowing what is going on and being conscious of other peoples perspective's is far more useful in accomplishing things then getting an doctor's official stamp of approval.

She'll see something and say," Hey, Look at that!!"
I'll say, "What?"
She'll say, "That, over there!"
So I say, "Where?"
She'll say (with a frustrated tone),"Over THERE"

There is no pointing, descriptive words, anything. That is our conversation.
You can only imagine how frustrating this is while driving in a moving vehicle.
Yet when she says something to you under normal situations - she'll use words that seem outdated, beyond her, complex.

[quote="Tracker"]Well, hello and welcome to the forums.

For starters I think you need to first consider what it is that you want from an official diagnosis. I am not trying to discourage you from learning all you can about asperger's syndrome. The information may indeed prove very useful to you and your daughter. However, unless you are having problems which require extra assistance, and you NEED the label in order to fulfill the bureaucratic paperwork, getting officially diagnosed isn't going to help anything.]


I am concerned that she may be a target in HighSchool or college for boys or the wrong crowd. She really doesn't have any friends so any attention - even if it's negative, may be better than none. I am worried about her social skills and how she may or may not cope with intergrating into society. I have read there are classes for behavior? maybe she could meet some people like her? At the same time I am afraid of having her "labeled" but I do feel that we need to address her issues for her to succeed as an adult.

There are quite a few good points in the posts above so I think what I'll do at this point is tell you what we've done and why, and you can decide if any of that fits into your unique situation.

We have a tentative diagnosis from the school which came about because my son had a gap between perceived intelligence and ability to perform, plus was clearly having trouble writing. We had no idea at the time it was AS; we just wanted the school to do SOMETHING before he got frustrated and tuned out (which he was starting to do). It was the school who told us he was most likely AS, and they began giving him services and accommodations based on that. For us, that was what was needed: the services and accommodations. The label has never been a negative thing for my son; the school is not free to share that information with other students or families, and it forces them to adjust to my son as needed, instead of insisting he adjust to them. Everything now is a dialogue: what is he capable of if pushed a little, what is too difficult to ask, and what can be done to help him work around the difficult area? He advances through school based on his talents, and generally takes accelerated classes but with extra support for the problem areas. With social issues, the teachers know to be extra watchful and careful. When they aren't, I get a little bossy And because he has an IEP, they actually listen.

Would the experience have been the same in a different school? Maybe yes, maybe no. It varies quite a bit and many families have had nothing but frustration with the schools. You can ask other parents at your school how they feel about the special education department and if they know anything about AS in particular, and you can ask the school if they do any lunch bunches or social skills training for certain IEP kids. My son had lunch bunch in elementary school and is doing some social skills work through speech in middle school, although he finds that a bit inadequate because they aren't teaching him slang. The main good thing is that the speech teacher recognizes these kids are targets and encourages them to talk about it.

The school asked us to pursue a medical diagnosis because as an official matter they aren't qualified to diagnose. But given that our son is getting what he needs from the school use diagnosis, right down to extra time on the SAT's if he wants it, we haven't bothered. At first I was a bit lazy, but then I read some posts by teens that had been upset by the diagnosis process, and by others who didn't want the label in their medical files and were trying to get un-diagnosed. Our school diagnosis ends when my son graduates from high school; a medical diagnosis lives forever, and we don't know yet what all the unknown consequences of that might be. So, I decided to leave it be. If my son ever needs a medical diagnosis, we will pursue it then. And he can make that choice as an adult. I know AS gets more difficult to diagnose as one grows up and adapts, but, still, it seems like the way to go for us.

Then there is the simple fact that what the school does is free, and what we pursue medically gets paid for by us given our giant insurance deductible. But, seriously, if I thought there was a reason for us to go the medical route, I would. We're just not seeing the need.

So. Best of luck making your decision on where to go next. What you do definitely depends on what you hope to gain from the diagnosis, and I agree with other posters that your daughter is old enough to be a part of the decision making process.

Ahh, I see. Well for starters, if you are worried about her getting in with the wrong crowd perhaps the best course of action would be to have a chat with her about what type of crowds you don't want to get involved in and why. Perhaps also encourage her to make connections in other more beneficial places like after school clubs and the like (assuming she is interested in more socializing). There are also many other ways for your daughter to get whatever socialization she requires in a safe atmosphere such as my personal favorite, online games.

As for the behavior classes, they are called 'social skills training'. It is basically 'how to act normal 101'. They cover things like proper etiquette regarding how to start, maintain, and finish conversations. I.E. shake hands, maintain eye contact the right amount (not looking away, but also not starring), how to smile enough to look as though your interested without looking creepy or giddy. How to know when its your turn to talk, etc. Most aspies tend to pick this information up after a decade or so of trial and error, but supposedly the classes help to reduce the learning times by giving more direct feedback.

However, I should point out that these 'social skills' classes are really just acting classes. It isn't going to change the way your daughter thinks, how she views things, or what comes naturally to her. It just gives her some information about how to pretend to be normal when she wants to. Which to be honest is a fairly useful skill for things like interviews.

As far as 'addressing her issues' and 'helping her integrate into society', those are fine goals. But they are a little bit vague and nebulous. Perhaps it would be beneficial to spend some time and list exactly what areas you are concerned about, and then think about what could be done to help in those areas. If you have trouble thinking about what would help, then feel free to post on this forum, and perhaps we could offer some advice.

As I said before, I am not trying to discourage you from getting a diagnosis if it would help you or your daughter out. If it turns out to be a benefit then by all means go for it. I am just saying that it isn't going to be everything and the only thing you need. Think for example if you wanted to go on vacation some place south. You know that part of the process is probably going to involve you going to the airport. But you dont just walk to the nearest airport in your area, and tell the ticket person that you want to go on a vacation. You have to put some more thought into it first. Plan out what it is that you want, where you want to go, how can you get there, etc. Then you can go to the airport and get a ticket. There is nothing wrong with going to the airport, its just not the first thing to do.

As for being afraid of getting her "labeled", it really is only as big of a problem as you let it be. If you get her labeled and then never tell anybody about it, never write it down on any forms, and never talk about it, then it wont do anything at all. If you go around telling everybody and their aunt about her diagnosis, then you will probably have more problems with people assuming the wrong thing, or thinking the wrong thing due to the label. But if you just get the label, and talk about it with your daughter, husband, and perhaps a few other people like a teacher then it shouldn't be that problematic.

And of course, if you haven't done so already go talk with your daughter. Tell her about asperger syndrome. Tell her about your suspicions that she probably has it. Tell her that there are other people like her. Give her some books to read about the subject. Perhaps direct her to this website and have her read it for herself. If you believe she has some problems then you aren't going to fix them by working around her. You might be able to change her environment a bit, but if she is having problems, then she is going to need to be involved in the solution. And she can't be a participant in the solution if she isn't given all the information.