Can you tell me about your daughter with Asperger Syndrome?

[Plummeting]

I will avoid the back story, but my daughter is being evaluated for something completely unrelated to anything like Asperger's, ADD, or anything else. However, the psychologist says that Asperger's seems a likely diagnosis for her at this point, but nothing definitive just yet. I have had friends mention the possibility to me before (that dd might be on high-functioning or somewhere on the spectrum) but she's my first child, so she's always seemed just...herself...to me. She's intense, has some unusual quirks and interests, and sometimes acts a little strange, but she's only 7 and I guess I've been thinking she'd outgrow it. She doesn't seem that unusual to me. I've been reading and I guess I'm noticing that so many of the things people think of with Asperger's are much less common with girls, so I was wondering if anyone would mind describing their daughters with PPD-NOS or Asperger's to me. I guess I just want to compare, if anyone's willing.

[proudmamanow]

My 6 yo has SPD, and we have been told that we could get a mild PDD-NOS label for her if we felt it would be helpful. She is not in school (yet) and we haven't felt the need (or been 100% convinced of the accuracy) of such a label. But I would be happy to compare notes, speaking from the perspective of mama to a quirky, inflexible, very bright, anxious and sensitive kid with mild SPD.  She is also our first, and one of the things that made us think about getting help for her is how different she is from her younger sister. Our 3 yo is so much more emotionally literate, flexible and empathetic than her older sister. It's like she's been given the cheat sheet to how to make friends that dd1 seems to lack. That said, the older she gets, the easier time she seems to have making friends, managing her anxiety etc. And we have had her in OT since november for the sensory issues and done listening therapy for 3 months, both of which have helped her be a happier kid. We have also recently gone GFCF and she is bitterly unhappy about that, and I can't really tell yet whether or not it is helping her, but it's only been a week and a half.

Does all that help you at all? She is definitely an enigma, our beautiful big kid. 

[Linda on the move]

My dd used to have a dx of PDD_NOS, but now has a dx of Asperger's. She's 14. She's been different at different ages, so recounting all that is more than I'm willing to do, esp since the same dx can look very different on different kids. As a general trend, it seems to me that girls on the spectrum are more likely to shut down while boys are more likely to act out violently. It like my DD just goes away. Sometimes it's so subtle that some people don't notice, her body is there in the same position, but she's gone. Some times it's huge -- curling into a ball and shaking. She has a history of full blown panic attacks as well, though she hasn't had one in a long time.

She, and a couple of the other girls I know with Asperger's, are extremely quiet. Even when they are comfortable and happy, they don't feel the need to express themselves verbally. The boys, as a general trend, are more chatty but not always noticing if the other person is listening.

For a long time it seemed that she understand why other people wanted friends. She intellectually understood that other people valued relationships, but she didn't really get why. This, however, is a more a PPD trait than an asperger's trait. Most kids with Asperger's want friends, but they don't understand how friendship works and having trouble relating to other people, even through they deeply want to.

I think there is a fine line between "typical by quirky" and "special needs."  To me, that line is how well a child is able to function in normal situations for a kid their age. How does your DD do in school, at girl scouts (or whatever she does)? What is she like in a group?

Also, there is a specific IQ pattern that shows up for Asperger's. It's not the overall IQ they are interested in, but the pattern of highs and lows. My DD is test book for the extreme and the pattern it follows.

[Plummeting]

Thanks for replying.

My daughter is home schooled, but she attends home school swim class on Mondays and P.E. on Fridays. She also does gymnastics twice a week, Girl Scouts once a week, and piano lessons. We occasionally do home school classes at a local museum or the botanic garden, so she's out of the house quite a bit. I'm not personally involved in any of those activities, so she's having to deal with those situations without me hovering or anything. Mostly she doesn't really talk to anyone. If any of the girls talk to her, she'll talk to them, but we've had to rehearse a LOT, because she doesn't know what to say once they ask a question and she answers.

She has sensory issues and what I think is some sort of synaesthesia (she says anything hot has a 'hot' smell, which I can see for cars or maybe stuffy houses, but hot clothes? hot days?). Her sensory issues include sensitivity to odors and tactile issues. She will only wear certain styles of clothes - no seams in the wrong places, etc. She has to put her shoes on and off over and over and over to get the seams in her socks right, the tongue not touching her leg the 'wrong' way, etc. She's become a very picky eater over the last couple years, but not to the point that I'm extremely concerned. It does worry me a little bit, though. She's clumsy and she seems to overreact to tiny injuries. A scraped knee can have her crying hysterically for 20 minutes, then insisting she can't walk properly for days. She still has trouble with zippers, buttons, etc.

I never really thought about this until they mentioned Asperger's, but she does take a lot of things literally. I don't know whether that's normal for her age or not. For instance, a couple of days ago I said I ran into someone at the store, and she couldn't figure out why I wouldn't look where I was going. When I explained it, she didn't like that people would say that when they really meant they saw someone somewhere. She's done that for other things too, like "dropping [someone] off". She's thought that meant pushing them out of the car. She does tend to understand sarcasm, though, and she understands jokes at what I think is an age-appropriate level. 

She's very touchy and suspicious. She's sure that people are always trying to do something bad to her on purpose. If you accidentally bump into her, she is positive you were trying to knock her down. My nephew accidentally pushed the door open on her fingers earlier and she was convinced he knew she was on the other side of the door (he definitely didn't) and he was trying to hurt her fingers by scraping the bottom of the door over her fingers, which were on the floor.

She has had 2 unusually intense interests. One was dinosaurs (we have 25 or 30 books on them - not including children's story books, just informational books, ranging from K level to high school level). She can tell you all kinds of things about dinosaurs that your average kid absolutely doesn't know. The other was Michael Jackson. However, she will not just start talking to people about either of those subjects. Maybe when she was 3 or 4 she would, but not to any degree that I recall being unusual. Everyone knew she knew a lot about dinosaurs, but she didn't talk your ear off about it or anything. Not unless you asked her anyway. That's what my sister just told me when I asked her, too, so I think it's true.

Tonight we were roasting marshmallows at our fire pit. My 2 nieces (7 and 8) and my nephew (4) were out there. They were all playing together and doing the marshmallows. When they finished up, they just ran around playing. When dd finished, she got on all fours and howled at the moon for 10 minutes or so. Alone.

I think that's everything I've noticed. I don't really know why I said so much...sorry. I know she could just be quirky. It's what I've always thought she was. Her IQ test will be Monday. Hopefully that will be helpful.

Editing because, despite saying all that, I still forgot a couple of things. I don't even know how I forgot the real doozie, which is her tantrums. She freaks out, and the freak outs are unpredictable and uncontrollable. You can't reason with her the way you can with other kids. Sometimes she'll completely lose it over something that seems ridiculous. Other times I'll brace myself when a plan doesn't work out or something that I think is a big deal and will really upset her, and it turns out not to cause the reaction I expected. Many things are predictable, but sometimes the tantrums seem random. They're HUGE though, and they can last a really long time. Also, I think she has a vocal tic. I didn't know there was even a name for it until this week, but she just makes a noise in her throat and she either says she's not doing it or she can't help it. It's quiet and she only does it sometimes, but she does it and I believe her that she really feels like she can't help it. She smacks herself in the side of the head if she gets really upset. Not hard enough to hurt herself - not nearly hard enough for that! - but it's still upsetting to see. She's rather obsessed with swinging. If we get to the playground and the swings are full, she will lose it over that. That one is predictable. It doesn't seem odd to me, but I mentioned it because I read that's common for girls with Asperger's. Don't know if it's true - I'm just really digging into all this over the last few days.

Edited by Plummeting - 5/13/11 at 7:47pm

[Emmeline II]

I recommend seeing a developmental pediatrician at a clinic like this one . 

My son has a definitive ADHD diagnosis and Asperger's is up in the air at this point. I see some similarities, but while ds has a couple intense interests they are not quite on the level typical for Asperger's--ds' DP mentioned that she had a patient that was obsessed with trains and could rattle off the serial numbers of the trains' engines. He also is particular about swings, but while it is predictable for a 7yo to whine a bit about not getting a swing, full-on meltdowns on a regular basis are not normal.

I never really thought about this until they mentioned Asperger's, but she does take a lot of things literally.. I don't know whether that's normal for her age or not. For instance, a couple of days ago I said I ran into someone at the store, and she couldn't figure out why I wouldn't look where I was going. When I explained it, she didn't like that people would say that when they really meant they saw someone somewhere. She's done that for other things too, like "dropping [someone] off". She's thought that meant pushing them out of the car. She does tend to understand sarcasm, though, and she understands jokes at what I think is an age-appropriate level.

Ds is like this, though it's gotten better in the past year. He's still doesn't quite understand sarcasm, though sometimes if I say something in a dramatic way like "I'm going to clean the toilets, I LOVE to clean toilets" he'd say "What!? no, you don't like to clean toilets, you're just being silly."

She's very touchy and suspicious. She's sure that people are always trying to do something bad to her on purpose. If you accidentally bump into her, she is positive you were trying to knock her down.

This was a huge problem in K, but has largely improved over the course of this year, though he did have problems with a couple of boys who would deliberately provoke him.

She freaks out, and the freak outs are unpredictable and uncontrollable. You can't reason with her the way you can with other kids. Sometimes she'll completely lose it over something that seems ridiculous.

Ds was like this, but has improved a great deal with CBT and medication for the ADHD.

I didn't know there was even a name for it until this week, but she just makes a noise in her throat and she either says she's not doing it or she can't help it. It's quiet and she only does it sometimes, but she does it and I believe her that she really feels like she can't help it. She smacks herself in the side of the head if she gets really upset

Ds has vocal and motor tics, though he cycles through them. Ds also used to do the head smacking, but now it is rarely and usually confined to "D'oh" moments.

Ds' teacher has been great about helping him interact and improve his social skills, though next year he will be getting help from the special ed program (nothing related to academics) with this and some other things.

.

[beachcomber]

My 5 1/2 year old DD has high functioning Autism. Not sure if they'd have eventually labelled her as an Aspie, but it's pretty likely. Her traits include being very intense about some things, specifically whatever she's doing right at that moment or really wants right at that moment. For example, tonight at dinner (we always play music with dinner) she wanted a certain CD so she jumped up and down and yelled at her dad to put that one, that one, that one on. Very intense. She tends to keep asking and asking for whatever it is even after you say yes. If it's not immediately provided or done she just obsesses about it until she gets it. This can get very annoying. She completely understands rules of conduct and diligently enforces them with her friends and little brother. But they apparently don't apply to her. This is beyond annoying. She knows the rules but will descend into a tantrum if they're applied to her. She responds VERY POORLY to certain tones of voice. Do NOT sound authoritative, dictatorial or the like or she gets her back up and becomes absolutely recalcitrant. I looked up that word and she is the very definition of it when she gets her back up. She's very smart and has a great sense of humor but can be very literal as well. I asked her once if she'd like to watch a little TV and she said, "We don't have a little TV. Ours is big. Only Nana's is little. Are we going to Nana's to watch TV now?"  She has word-for-word recall on songs and often learns the lyrics of them or of her favorite TV shows the first time she hears/sees them. She loves singing them or reciting them but does it in a strange way, blending all the words together in a monotone. She's getting a bit obsessive about counting things. Isn't big on lining toys up unless she's very stressed. Plays a lot of rote games where she re-enacts scenes from TV, activities from preschool or therapy, etc. The roles of the different toys are very specific and even though she demands you play these games with her, she telly you what to do every step of the way. Interrupts constantly, even though she knows she's not supposed to. Terribly selective listening skills. Partly she gets overwhelmed and partly it's because if she's busy, you may as well not be there. Moderate to poor eye contact has been improved through therapy but when she's overwhelmed it gets bad. Don't even try to talk to her if she's not looking at you. Pointless. Has no concept of consequences in the real sense of having it alter future behavior. Hates them when they're applied and understands what they mean but this will not stop her from doing whatever it is again at a later date.

Socially she has improved tremendously with social skills groups and therapy. I'll give you the before and after so you get the idea of the changes in the last year.

Before therapy: Preschool was a passive activity for her. From birth she was a watcher not a "do-er". She never played with other kids, not even parallel play. At play grounds, she'd stand still as a statue and watch. At birthday parties, she'd insist on being in my arms or on my lap and watch. She wouldn't respond to other kids if they talked to her. She always had this "deer in the headlights" sort of stunned expression. She'd talk endlessly ABOUT kids she saw or classmates in preschool but was not able to actually respond to them or talk to them. She had very little problem talking to adults and always preferred them. Even got very friendly with adults in grocery stores, esp. the cashiers who got to know her. She'd talk the ear right off an adult and was always very talkative and animated at home. So the preschool play date and park mouse was hard to reconcile.

After therapy: she now has friends at school and has even initiated play with them. She is very good at talking in a group setting once she becomes comfortable. She likes having friends but I don't think she quite knows how to manage the relationships yet. She has a poor idea of the give and take involved. But she is playing with kids and following through with her side of games now. She's also learned how to have conversations that don't just involve her and what she's interested in. She can make observations and talk about random things really well now.

Behavior/Tantrums: She has huge melodramatic teary hysterical tantrums at home. No one outside the family has ever witnessed a tantrum until she had her first one in a store this year. Prior to therapy she'd never acted out in public because she was generally to overwhelmed to do it. Mostly her anxiety and stress get internalized and she shuts down instead of expressing it outwardly the way boys on the spectrum almost always do.

Physical: she had both gross and fine motor delays that therapy has improved greatly. Her fine motor delay means she's not quite writing letters yet and her drawing/coloring look very young, like 2 1/2 or 3 years old. This delay may never leave her and she'll probably get a lap top at school in grade 2 or so to help her with composition.

Sensory: she has smell and hearing over sensitivity. She has taste and touch under sensitivity. She is constantly looking for stimulus with touch. Stroking me, hugging, "grooming" for lack of a better word. I always though she had remarkably high pain tolerance but now understand that it's due to her low sensitivity to touch. She just doesn't notice most of the time when she gets a minor scrape or bruise. The major ones she notices but gets over really quickly. Way faster than her little brother.

Sleep: she has paediatric insomnia which means she has trouble falling asleep and staying asleep. She had a touch stim ritual for ages involving playing with my or her dad's ear. Drove us batty. Now she falls asleep in her own bed but always ends up in ours by midnight or earlier. She needs to literally be touching one of us to stay asleep.

Edited b/c I saw your mention of swinging in your last post and had to respond to that. DD loves to swing but only if she's doing the work. As a little baby, she adored being swung in a baby swing or in the bucket swings at the park. Then at 2 or so, it all stopped and she'd freak out if you ever swung her too high or too hard. Turns out that's due to poor proprioception which is the sense of knowing where you or your body parts are in space. Hers is terrible, which affected her balance and made her a late walker. Also I could never put her down in a crib. That act of lowering her would ALWAYS wake her up and she'd freak out.

Edited by beachcomber - 5/15/11 at 8:53pm

[Plummeting]

I know I posted this a while back, but just wanted to thank you all for responding. My dd did receive a formal diagnosis of Asperger's. Beachcomber, your first paragraph is my dd to a tee! Also, my daughter was the same way about swinging when she was younger - she would absolutely panic if we swung her high at all. She also hates merry-go-rounds at anything over a snail's pace, and even then she grips the bars like she might come flying off at any moment. Fortunately she doesn't suffer from insomnia. She does still wake up a few times for a drink every night, but she always goes right back to sleep.

I was wondering about something that I guess is related to ASD in some kids. She did point at things as a baby, but as she's gotten older she rarely points at things, but will instead repeatedly say "Over there!" and "Right there!" whenever we keep telling her we don't know where she means. We usually have to tell her to point at something. I know lack of pointing common with ASD, but I'm wondering 2 things. First, is it normal for kids who have an ASD and who pointed as babies to stop doing it as they get older, or is she likely just not pointing because she doesn't feel like it for some reason? Second, is it also normal for some of these kids to completely fail to notice when other people are pointing, or is that developmentally normal in a 7yo, or is that just my kid? She NEVER looks where we're pointing unless we tell her to. She will look, randomly turning her head in every direction, until we say, "Look at my hand. See where my finger is pointing? Look that way." I can't even find anything about kids not looking where others are pointing - just about them not pointing themselves - so I have no idea if it's totally normal for all 7yo's, totally normal for kids with an autism spectrum disorder, or just a weird thing my kid does. It doesn't really matter, but I'm very curious.

[EarthRootsStarSoul]

Haha, Plummeting, that was me at six, not looking where someone pointed.  I remember my mom trying to show me a bird in a tree, and I was just randomly looking all over the trees in the back yard like, "Where?  Where is it?"  And my mom said, "Look at my hand!" so I thought she had the bird in her hand and I ran over to her and opened the fingers of her hand looking for the bird, completely oblivious to the pointing finger.  She had to tell me that when someone was pointing with a finger, there is an imaginary line going straight out from the finger to the thing they are pointing at.  And I was surprised because I never thought of that before.  Hahaha! 

[beachcomber]

My DD doesn't really "see" when someone is pointing at an object, either. She did point as a baby but like you wondered, Plummeting, stopped as she got older and also yells, "There!" or "Over there!" instead. She has no idea that if she used a gesture it would help and has trouble reading other peoples' gestures for meaning. They go right by her.

[LynnS6]

Originally Posted by Plummeting 
Second, is it also normal for some of these kids to completely fail to notice when other people are pointing, or is that developmentally normal in a 7yo, or is that just my kid? She NEVER looks where we're pointing unless we tell her to. She will look, randomly turning her head in every direction, until we say, "Look at my hand. See where my finger is pointing? Look that way." I can't even find anything about kids not looking where others are pointing - just about them not pointing themselves - so I have no idea if it's totally normal for all 7yo's, totally normal for kids with an autism spectrum disorder, or just a weird thing my kid does. It doesn't really matter, but I'm very curious.

Actually, that's pretty typical of autism spectrum kids -- there probably isn't much out there on following points, but if you look for "joint attention" you'll get a ton of stuff. Joint attention is essentially the ability to figure out what someone else is interested in by following their gaze and/or their gestures, and to initiate interactions with others in the same manner.

The good news is that kids with Asperger's can be taught these skills so that they can at least figure out what others are talking about. But as you noted, you need to be much more explicit and for typically developing kids, they usually pick up on it on their own.
 

[beachcomber]

Interestingly, some of the early work done in my DD's intervention at her clinic involved teaching her to follow her interventionist's gaze through a game they'd play together. A "find what I'm looking at" kind of thing. Kids on the spectrum have to be taught these skills that typical kids pick up from watching what others around them do. Spectrum kids don't make that mental connection as readily but they can be taught to.