parents of girls with aspergers

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i'm new here and so glad to see other parents i can talk to. my 8 1/2 year old daughter was diagnosed at 5 with AS. i'm having a hard time finding info about girls with AS. from the few things i have read and witnessed, there are marked differences. grace has a huge imagination...there is no telling how many imaginary animals/people live in our house with us. her IQ is sky high, she has so many wonderful amazing qualities about her...yet she only has one friend, her hygiene is horrific, and she she has phoibias and hypersnsitivity issues.
i worry so much about her. she knows shes different and it bothers her. i have no idea how to comfort her if i can't even teach her to bathe correctly. i worry about her as she gets older...she is very pretty. we talk about sex already...i and her dad feel she needs to know. i don't know what i would do if she was ever taken advantage of.
i so dont want to feel sorry for her. she has many strengths...but ive been getting discouraged lately. i have no close friends that have children with AS. trying to talk to them about grace is like someone explaining nuclear physics to me and expecting me to get it. i get answers like "all kids do that" or "she's just acting out". i am desperate to find someone who understands.
my 4 year old is also exhibiting signs...and my husband was diagnosed with adult ADD. he talked to his dr. about AS in him...he has it.
i don't want to complain. i love my life...tom, my husband, and i are both songwriters. he's also a mega talented performer. i have beautiful children and a wonderful community support worker for grace. but, i just feel like i'm about to lose it lately. if anyone has some good strategies for parenting girls that would really help...thanks

You have to use logic. Let's take the bathing. You have to explain in a cause and effect manner what happens when she doesn't. It's like following a flow-chart. Most NT"s already understand that cause and effect; or ebb and flow in relationships and talking. We don't get it.

I always forgot to clean my ears. My brother would always snicker and say "clean your ears"...however, I didn't understand the "why"? So, show the cuase/effect....and put it into graphics because we understand pictures. and then just keep re-inforcing on why she wants to remain clean. Like, see that person....they didn't clean their body and now they smell and other people don't want to walk around him. Don't do it meanly or too often. Just a "matter of fact" tone works really well. The bad side? She could develop her own concents/reasons and not be willing to adjust them. We AS's can be very stubborn and ritualistic.....

I understand now...however, I really wished someone had tried to make me understand differnetly when I was younger.

How nice that your trying to figure this out!! ! When I was little, I used to bang my head on the radiator...how autistic was that? My mom just thought I was stubborn;-))))) I'm 39 now. I love her for that too.....HOw nice to turn an oddity into a complement.

thanks...we're working on the cause and effect with her. she also has hyper/hyposensitvity and specific phobias. her sense of smell just doesnt seem to exist. thanks for the logic reminder...i forget that sometimes. grace lives in a very literal world while my world, as an artist is very gray.

its taken alot of hard work to get close to her. i so badly want to know what shes thinking...i ask her and she says "i dont know". shes a great kid and i get the "mom guilt" when she drives me insane.

and she is stubborn, but quietly so. she has taken passive aggressive to an art form...can i borrow your radiator?

i just want to know that shes going to grow into adulthood happy...will she get married, have kids, career...i dont care how high her IQ, i care how her heart/soul is.

thanks again for the reminder

My daughter (AS) also had/has hygiene issues, particularly with not keeping her nose blown and clean (it seems to run all of the time during the school year.) I think it has something to do with sensitivity issues. She also was not a big one for hair brushing or fingernail cleaning.

One of her teachers suggested to me to ask her to do things in steps, so that in future, she would know how to know the signs to do it herself. Example:

Go and get the tissues.
Bring them over here.
Look in the mirror. See how your nose needs blowing?
Blow the left side.
Blow the other side.
Use another tissue to wipe your nose.
Feels better, huh?

Instead of: Go blow your nose -- which got me nowhere but frustrationland.

Now all I have to say is "Mirror" and she goes and blows her nose. She still forgets to, though, and needs constant reminders.

She is getting better about the other stuff - hair, clean clothes, etc. She's thirteen.

Hi there,

First of all, (((hugs))) to you. I am sorry you feel so alone!! One of my sanity savers have been the other parents I have met who are raising girls with AS. I am very lucky to live in Southern California where we have a lot of awareness and services. My daughter attends a social skills group with five other AS girls. The girls have become her friends and the parents mine. Would there be anything like that in your area? Ours is run by a speech pathologist, but I have also heard of them being led by psychologists, etc.

A couple of books to recommend - Pretending To Be Normal by Liane Holliday Wiley (not sure if I spelled that right). She is an adult woman with AS who writes about her experiences growing up with AS. When we first got our daughters diagnosis and I was reading many of the AS books, I just did not relate, they did not seem to "fit" my daughter and the way she presented with AS. Pretending To Be Normal was my "ah-ha" moment. It actually sounded like my daughter. She also has another book about living with AS, but I cannot remember the title. But, she talks about parenting her daughter with AS.

Another book I just got is called Asperger's and Girls (available on Amazon), it is a compilation of articles - some you may have seen before (Atwood, Grandin), but others were new. There are some that deal with puberty, dating and marriage, how to "launch" your daughter into the world, etc. I felt like a lot of it was more aimed toward older girls, but it is still interesting to read and good for planning for the future.

Also, I have heard about an American Girls book. I don't know if your daughter is "into" these books, but I guess they are really popular. Anyway, supposedly there is one that deals specfically with self-care/grooming issues, etc. I am afraid I do not know the title, and have not read this one myself, but maybe it would be a good place to start a diaglog with your daughter?

Have you thought of using social stories with your daughter? If you want to target a specific issue they can be really helpful. My daughter has issues with her feet (don't ask - lol!), anyway before the start of kindergarten I wrote a social story about how she has to keep her shoes on in school. We read that thing every day before school started and it really sunk in. She has never had her feet problems at school, in fact they have pretty much faded all together. Carol Grey is the women who invented social stories and I believe she has a web site that talks about them in detail. I pretty much just made mine up on my own.

Well, I have written a novel here!! I just wanted to pass on some of the things that have helped me. Best of luck to you and your daughter - and let me know if I can be of further help!

Katie

ok basicly you have to tell her what to do every step of the way
and set a routine

make a picture time table but then break it down with your words
wash your face
clean teeth ect......
The fact that your talking to your child at 8 about the facts of life is great becouse it won't be too many years until she starts her periods and it won't come as a shock.
Then talk her through every step of those.

It's not the same as other children they just take for granted being able to do things but my child gets transfixed on drawing and the computer and doesn't see the need to wash
So i have to go through the little steps with her

Janwr, it depends. Your daughter might find a job that just suits her and a soul mate but a lot of this is based on luck and the right opportunities. It's best not to have too many preconceived notions about these things and just take each day as it comes. I know female aspies in real life and on another forum who don't really wish to have children or marry.

Some are worried they won't be able to cope with motherhood and if they have a lot of executive dysfunction, this is a realistic concern. Other Aspies make very good mothers but can find it harder to relate to any children they have who aren't on the spectrum.

Many of these things cannot be determined with any certainty right now.

I am Aspie and thought I was a freak because of not having a boyfriend or children at a certain age. It led to some bad choices but I will never regret having my two girls. An earlier diagnosis would have been a real help as I only got a diagnosis rather recently.

I still don't wash...

For girls though I guess being trim and proper is something all mothers would hope thier duaghters would aspire to be.... don't worry many female doctors scientists and engineers are the same - and they are the best chicks around - you don;t have to wait for them to get in the car when going out. (they don't decide to wash thier hair just as we're about to leave.)

Let her be... just make her wash at least once a day... any more is a waste of time to an aspie. (sometimes I go 2 days, when I know I won;t be around people)

Beleive me - when some-one at school compliments her smell (ie bad smell) ... she will soon start to wash... young aspies still want to be a part of society just dont know how.