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Hi all. I apologize in advance for my long-windedness, but I don't know how to start here without explaining my situation. My 16yo daughter was just diagnosed with Aspergers, though I have suspected for years that she has it. She was diagnosed at Rogers Hospital in Wisconsin where she was being treated for OCD.

She definitely does have full blown OCD, so when that was diagnosed, I just chalked all her symptoms up to that, but while her OCD symptoms have nearly disappeared with treatment, her Aspergers symptoms remain. She did not have the type of symptoms that TV/media portrays as OCD symptoms. Her OCD symptoms were: afraid she would intentionally stab herself or me with sharp objects, afraid she would intentionally jump off of tall things...parking garages, stairwells for example (controlled heights like thrill rides at amusement parks were ok)...afraid to sit next to strangers for fear of doing or saying something inappropriate. In the past 8 weeks, with intensive CBT, she can now cut her food for the 1st time ever, is not afraid of stairwells, and went from not being able to sit in a movie theater next to someone to flying home by herself! HUGE improvements with OCD. (it runs in our family. I have it, my mom has it, my brother has it, my grandmother had it, etc.)

However, her AS symptoms are still here. Some of them were being worked on at Rogers. For example, she can now wear clothing other than sweats, t-shirts, and a particular hoodie, though not for more than a couple of hours at a time. (But hey, she's trying and before she couldn't even touch them!). However, she is very rigid about the hoodie and is adament she will wear it, and only it, except for when she is doing exposure therapy. She used to cover her head with it when stressed, and she has stopped doing that.

She also has no concept as to why hygeine is necessary. She takes a shower every other day and that's the way it is. Even if she desparately needs one due to body odor. She doesn't care that she has body odor. Wouldn't put on deodorant unless I reminded her. Same with brushing her teeth.

She paces constantly. She is able to stifle this during the day at school, but at home she can pace for hours.

She prefers to present herself as a male in online situations. Avoids using email/Facebook or calling people she knows "in real life." Consequently, she doesn't have many friends. I'm probably the only mom in the world that forces my kid to get on Facebook daily to update her status and respond to others (mostly family but some friends she doesn't know well.) I don't tell her what to say or anything, just force her to socialize in some way.

She is actually able to empathize with people, and can be very caring, which is why she was not diagnosed for years. However, she misses a lot of other social cues. For example, somone mistook her for someone else and called her by the wrong name. Despite this girl's multiple apologies, my daughter kept repeating "My name is_____" Doesn't know when it's time to change the subject.

She does have a really good therapist here, and I guess the plan is to keep using CBT to treat the AS symptoms.

Is this the best way?

Will she ever be "normal" in society. I mean I like her just the way she is, quirks and all. But obviously, I want her to be a happy adult.

I'm also not sure what to ask for in an IEP. She has one, but it doesn't include any social help. One teacher has actually berated her for her strange behavior (she does have an accomodation to pace if needed)

I hope I didn't ask too many questions, or do too much explaining.

It will make a difference now that you "know" what causes certain things with her. The prognosis for most of our kids is pretty good, in my opinion, even if we don't have a valid statistic to let us know what it really is. Knowledge makes a difference.

I smiled at this:

We all end up making what others would consider an odd relationship with screen time for our kids, in one variation or another.

Hygiene issues are also something we can almost all relate to.

I have a pacer, too.

As for treatment and IEP's. I've heard good things about CBT so if that is working for you, great. Just try to keep it focused on the things your daughter needs to feel comfortable in the world, and not worry about the things she might change to make the world comfortable with her. Our kids have a wonderful ability to not care what others think about them as long as those others leave them alone, and I think it would be a shame to tinker too hard with that.

She doesn't need to ever be "normal" in society. She needs to be able to get by, and needs to acquire the key skills to live independently. The rest ... doesn't matter.

Unfortunately members on this board have found that some level of social skill is essential for the job market and, therefore, anything you can do through the IEP to help her with this will be useful. I'm not, unfortunately, sure what the standard route in high school is, although I think it's a pretty easy call to say that teachers must NOT berate her for strange behavior, write it right in the IEP if you have to.

There is a book free for download that most of us have found really helpful, written by a young man with AS who frequents this board. You will find it at ASDStuff.com

Good luck.

My daughter realizes she has AS, and is okay with that diagnosis. When she was in the hospital, she was in with some AS kids. She doesn't always have good insight as to what she needs to work on.

I agree that she needs enough social skills to get by, and I don't want to just turn her into a "normal" kid. Adults and most of her teachers love her! (My parents think the AS diagnosis is bull sh...) She does get bullied, though, and while she talks a good game about it not bothering her, she has ended up in the hospital (prior to Rogers) 3 times for being suicidal after kids have said something to her. She goes to a large high school, and they have a strict anti-bullying policy. But bullying can just be a tone of voice. A snicker and a point in the hallway. They can't catch them all.

I am worried about her not shaving her legs. She has to have 3 semesters of PE. She will take 2 of those next year. She has never shaved her legs. She refuses to. Says it's stupid and people in other countries don't do it. (I agree, but we live in the US which is very anti-body hair!)

Her legs look like a man's. The girls will eat her alive!

Let us be clear on something here. What you describe as "symptoms of AS" are better understood to be an aspect of her personality, and in effect, by asking if she will ever be "normal" is asking if she will ever be someone else.

I don't really see the problem with her wearing her hoodie if that's what she liked to wear and I really don't understand why it's a problem for you.

As for her presenting herself as male online, she likely does this because she feels she is treated more in accordance with the person she is. That's not to say she feels like a male trapped in a female's body....more often females with AS are just gender neutral to some degree and this probably stems from the fact that the female gender contains far more culturally defined elements than the male gender. Even in this day and age, especially in male dominated forums, people perceive users they know to be male differently from users they know to be female, and while I won't elaborate any more unless you would like me to, I can tell you that by presenting herself as male online, she is cutting through a lot of BS and eliminating many unwanted advances.

Hygiene issues are common in children and teenagers with AS as transition issues are common. A shower every other day is pretty good and actually within normal western hygiene standards. For people with AS and hygiene issues to take a shower or bath, the discomfort from being dirty must outweigh the discomfort of making the transition. At 16, you cannot teach her better hygiene so don't waste your time worrying about it. It's likely that she'll eventually improve in this area on her own as she gets older.

As for the teeth, it probably won't work but you might tell her that most of the damage to her teeth from not brushing actually happens between the teeth. If she isn't going to brush her teeth then I recommend at least flossing or rinsing with mouth wash, and avoiding sugary or carbonated beverages and acids, and avoiding things like crackers, cookies, cereal and similar starchy items because they very quickly cause a thick film of acid producing bacteria to form on the teeth.

Unfortunately I've had about $7,000 worth of dental work over the past few years to repair damage partially from the effects of poor oral hygiene when I was a teenager. My teeth looked fine on the surface but the decay had occurred between the teeth and under pre-existing fillings which I had as a result of being the victim of state dental insurance fraud when I was younger (he filled teeth that likely did not need to be filled). As I thought my teeth looked fine, I didn't realize anything was wrong until one of my molars broke. It broke below the gumline and they couldn't fix it and had to pull it. A full set of x-rays revealed three potential root canals and new fillings needed in every tooth that had one. I got away with two crowns instead of three root canals but had to have crown lengthening surgery so they could attach the crowns. Recently, a second molar has cracked as a result of the fact that I couldn't get the first one replaced with an implant (that costs $2,000 alone) and I put too much stress on the remaining molar as I could only chew on that side during the crown work on the other side.

Luckily they think they'll be able to save this tooth, but my point is, your teeth can look fine on the outside and be compromised structurally on the inside.

I think as far as the AS is concerned, I would really just get her some social skills training. There are social skills courses for teenagers with AS.

OCD involves obsessions, which are the intrusive thoughts and magical thinking, which you do not see portrayed in the media, and the compulsions, or rituals, for example, hand washing, and counting and so on, which you do see portrayed in the media.

The compulsions and rituals are done in response to the intrusive thoughts and their nature is a manifestation of the disorder itself, as one person with OCD on one side of the world, will very likely devise the same compulsion or ritual as a person with OCD on the other side of the world despite cultural differences. This is why compulsions fall into very narrow and finite categories such as hand washing, counting, and avoidance of things like cracks on the side walk, touching door knobs and so on.

Some people have obsessions/intrusive thoughts without compulsions, and this can be difficult to address with CBT as it's easier to stop doing something than stop thinking something.

Your daughter sounds to not have many compulsions accompanying her intrusive thoughts, but she does sound to avoid the situations which would cause the thoughts, so the CBT for that would be to exposure to the situations she is avoiding. This is something she needs to be an active and willing participant in.

It's also worth it to note that you as the outside observer may not be able to differentiate what aspects of her behavior are due to the AS or OCD, but these occupy vastly different realms in her head and she very likely can differentiate her OCD symptoms from even normal fears because OCD tends to have a particular feel to it.

I would just focus on getting her some social skills training, and keeping the OCD reasonably controlled (it is generally a chronic condition), mention to her what I said about teeth, and let the rest slide.

Will she care, or even notice? If not, no problem. If she does, perhaps at that point she'll care enough to shave her legs.

Other than that, what Chronos said.

She only needs to work on things that present as obstacles to what she wants in life. For example, my roommate has PDD-NOS, and while some may perceive him to have some social impairment, he does not perceive this himself. He's rather happy where he is socially even if it's not where other people would be happy socially. Thus, for him it's not a problem. I decided at one point that my social skills...or lack thereof, was a problem because it presented an obstacle to certain things I wanted in life, so I worked to address the problem.



The problem likely isn't her, but the fact that a vocal minority of teenagers are rather horrible people with no regard for others. The majority aren't so much so, but tend to be followers.

Personally I wanted nothing to do with high school when I was a teenager and I did not attend. I had no interest in the cliques, or insecurities that teenagers tended to project on others, and I had no interest in changing myself for people who's respect was too insignificant for me to care to have.

But if I did care to be accepted amongst my "peers" then yes, I would have had to have made some changes. The key word here is accepted though. There is a difference between being accepted and being afforded a basic level of respect and civility and one has to decide the appropriate price of each. If I were asking to "hang out" with people, I would expect the price should be high in that it would be reasonable that I should have to change myself significantly to gain their acceptance. However if I were simply asking to just not be harassed, and to be treated with some civility, then I might decide my "peers" unreasonable in their asking price, and that they are the ones who should change their standards.

It is not unreasonable for your daughter not to be harassed and treated with a basic level of civility without changing herself.



They might. She will have to accept that a woman who does not shave her legs in the US is going against what is considered social norms, and that people may ridicule her. It is not unreasonable that she shave her legs, however if she wishes not to that is her choice and she must be prepared to deal with that.