Asperger's...jump start my understanding, please

[Julie in MO]

Hi,

I have happily taken advantage of the K-8, high school, and general WTM boards in recent years...now I find myself needing this particular set of experts.

 

Last week a practitioner suggested I get dd 12 evaluated for Asperger's. I have done an internet search, searched this board, made a short list of books to read, and just joined a yahoo group. I'm trying to quickly learn about this. Please share any words of wisdom you have if you've "been there, done that."

 

I could really use some encouragement about how to handle social situations with dd. She wants to fit in. She tries to fit in. I'm not sure who to share this new information with and who not to (locally - family, friends, acquaintances). Tonight my "mama bear" claws are out because a teen posted something unkind on google buzz about the way my dd looked at her costume at a costume party on Friday night. DD felt awful - she didn't mean to make this girl feel judged. DD has a certain stare that makes it hard for people to "read" her.

 

I left a message with the only austism treatment center in our area, but have not received a call back yet. I'm hoping for some encouragement, please.

 

Thanks,

Julie

[cindergretta]

My stepson (16) and my son (7) are both Aspies. Social situations are so hard. I see both of them yearning to fit in and belong, but they just don't know how. I generally have no idea how to help them. You are not alone and I will wait here with you and have some :lurk5: .

 

(((((hugs)))))

[lisabees]

I don't have an Aspie, but want to send you hugs as you go on this journey. I do know what it's like to hold a child's hand as they go through their struggles. Your Mama Bear claws will get you both through this.

[Julie in MO]

and thanks for the endorsement of my mama bear claws! :001_smile:

Blessings,

Julie

[AngieW in Texas]

It is hard. My 15yo is Aspie. She is actually somewhat okay at reading people, insofar as what those people are feeling. However, she has no idea how to make her facial expressions or her tone of voice match what she is feeling. And while she can quickly figure out that people are looking at her like she suddenly sprouted tentacles, she generally has no idea WHY they are doing that.

 

I have found that socially she does much better with either much younger kids or with adults. My 12yo mostly hangs out with 13yo kids, but my 15yo does better with 10-11yo kids.

[Julie in MO]

I see her gravitate to kids that are younger and older as well, especially boys. Boys tend to just play and not delve into relationship like girls do. Her best friends right now are 15 and 8 year old boys and an 11 year old girl who just loves being with our family no matter what (thank the dear Lord). Makes for interesting social gatherings! :001_smile: I appreciate your response to my post.

Blessings,

Julie

[Guest]

I don't know whether this will encourage or depress you -- but right now your dd is at the very hardest age to be "different" in any way. My 14-year-old

Aspie did quite well for years in a very small co-op; although she didn't have the same intensity of friendships that other kids did, she was happy, included in most things, and never bullied, teased, or in any way made to feel badly because of her differences. At the start of 7th grade -- and this is rather delayed because the kids were more protected in a homeschool setting; usually it seems to set in around 5th -- things changed dramatically. While no one was ever, ever unkind, the friendships of the girls started switching almost weekly and becoming enormously more emotionally intense. The friendships were not activity-based so much as confidence-based. Most (although not all) of the girls began using make-up, acquiring boyfriends, piercing their ears if they hadn't already, etc. And then there was dd, with her clothes all every which way, her hair looking like a rat's nest, her socks over her pants half the time, her love of physics and science fiction, her earnestness and loyalty... it was disappointing to her because the co-op had been wonderful for three years before then, but she still liked it. Then it ran out of money and folded.

 

In a private school she briefly attended for 8th grade: she was never teased or treated unkindly, but she was left out of slumber parties, birthday parties, get-togethers.

 

The good news is that as kids become older teens, that first really powerful and nasty stretch of ultra-conformity begins to break down and kids start to accept others for what and who they are. Non-conformists even start looking attractive and interesting to some kids. And friendships can be formed around similar interests rather than emotional confidences.

 

Dd has found a new network of friends through her horseback riding. There are girls of all ages; she works with kids as young as five and adults as old as sixty. The conversations and activities are very inclusive -- we were lucky to find such a nice place -- and dd is respected for her skills, her love of the horses, and her dedication. She works at the stables to earn lessons and the loan of a horse for showing, so she is valued for her helpfulness and willingness to work, given lots of responsibility, asked for help by others. Plus she, like many kids on the spectrum, has an amazing bond with the animals; when she's with them she's in her Zen zone. I've been so pleased she's found somewhere that her anxieties can be put aside and she's so involved in the moment and so calm.

 

She has not yet found anyone to share her passionate love of Douglas Adams and Terry Pratchett, and this bothers her sometimes. She'll tell me she knows there are people out there who love what she does, but she hasn't found any. This is tough; but people in the family try to enter into her passions and we're all reading Terry Pratchett at the moment.

 

I still haven't worked out the fine balance of the disclosure issue. When she was little I think I erred too much in keeping it private. Gradually I found out who needed to know, which was basically anyone who worked with her coaching, teaching, or tutoring. I did share with my immediate family, but there were certain people who just did not get it and were not interested in understanding. I might as well have not bothered. I told the mother of my dd's best friend in elementary school when dd began to spend time at their house.

 

As dd has grown older we are much more open about it at home and with her, but she's at the age where she doesn't want to be different or stand out, and I feel I should gradually be discussing with her when and to whom to disclose. I think this will be a constantly shifting thing as she grows up and we'll always have to refigure that balance.

[elise1mds]

My son is younger, and he's a boy, but you definitely sound like you could use a few :grouphug:.

 

It's so hard when they're 'different' as children. I think as they grow older and get into their specialties, they become more accepted for who they are and will gravitate to groups of people who are able to understand and work with them, but I worry about my son and the teen years. Right now he's 8 and will happily play rough and tumble games for hours, but soon the pre-teen mentality will kick in and I suspect we'll be right back where we were in kindergarten when nobody understood him and he was mocked. I ache for your daughter having to go all through this. I'd suggest that she be upfront and honest about how her brain works, but I don't know that at that age that it would be any better, because SO many teens are scared of things unknown and different. You could try role-playing with her, but I honestly don't know how much that would help, either. Sounds to me like you've got a good grasp on things, though, and will help her through all this beautifully.

 

More :grouphug: for you and her.

[lisabees]

The good news is that as kids become older teens, that first really powerful and nasty stretch of ultra-conformity begins to break down and kids start to accept others for what and who they are. Non-conformists even start looking attractive and interesting to some kids. And friendships can be formed around similar interests rather than emotional confidences.

 

 

 

:iagree:

[Julie in MO]

just e-listening! I'm paying attention and trying to learn how to navigate this new path.

Blessings,

Julie

[HeidiD]

Hi,

 

I'm hoping for some encouragement, please.

 

Thanks,

Julie

 

Have you looked at "Navigating the Social World"?

 

http://www.amazon.com/Navigating-Social-World-Individuals-Functioning/dp/1885477821/ref=sr_1_1?s=books&ie=UTF8&qid=1288042326&sr=1-1

 

 

Also check out Future Horizons - they publish helpful materials.

 

http://store.fhautism.com/

 

 

I've been reading a book this week by Shonda Shilling (married to Curt, the former Red Sox pitcher). It's called "The Best Kind of Different". She describes their family journey before and after her son's Aspergers diagnosis. She also has a couple of kids (and a husband) with ADHD. It's touching, and at the same time, informative. She has obviously chosen to be quite open about her son's diagnosis. We've taken the same approach with our daughter. For the most part, we've found that people are quite sympathetic and supportive once they understand the underlying causes of her differences.

 

http://www.amazon.com/Best-Kind-Different-Aspergers-Syndrome/dp/0061986836/ref=sr_1_1?s=books&ie=UTF8&qid=1288042732&sr=1-1

 

Temple Grandin has written about her experiences as an autistic person growing up, being educated and joining the job market. She considers her autism an advantage in some ways (for instance, when she had to make sales calls, she wasn't bothered by rejections to the same degree a neurotypical person might be:)). It's not all bad - in fact, it's probably a strength and an advantage to be less conscious or concerned with other people's opinions than many of us are. I think that this is something to be encouraged (within reason, of course :)). The most important aspect of mental health for anyone, autistic or neurotypical, is to be comfortable in one's own skin. I think that there is too much effort to standardize ("fix") autistic people, to try to make them conform to other people's expectations. It's a healthier and happier approach to develop a social life and connections around one's particular interests. (Isn't this what most neurotypical people do anyway?) Homeschoolers are in an excellent position achieve this, and it's really quite doable.

 

Good luck, HTH! :)

[Julie in MO]

and I noticed that Temple Grandin was speaking at a conference about two hours from me. I might attend that. I'll check out the other resource - thanks!!

Blessings,

Julie

[Guest]

Temple Grandin is great to hear in person. I went to a book reading and signing for Animals in Translation and was both heartened and tickled by her obvious comfort with herself and sometimes her obliviousness. She's a wonderful character.

[Dobela]

and I noticed that Temple Grandin was speaking at a conference about two hours from me. I might attend that. I'll check out the other resource - thanks!!

Blessings,

Julie

If there is a conference 2 hours from you, I highly recommend going and not just to hear Temple Grandin (although she is one of my favorite people to listen to). There you will find (and be overwhelmed with) all sorts of resources and information. Some will apply to you, some will not. You may be able to network with other parents and find social outlets for your child that are already established.

 

If you have time to listen, this is a story I have listened to more than once on NPR - about a Dad diagnosed with Aspergers after his 4 yr old son was. Very interesting, to me anyway. Another first person story from NPR is this one interviewing Pulizer Prize winner Tim Page, a music critic.

 

I have a brother, now 38, that was finally diagnosed with Aspergers in his early 30s after years of struggle. Someone else later diagnosed him with Autism, but that was based on early childhood history my mom kept detailed. Depending on the day I can call either one correct. The teen years were very difficult for him. He didn't play sports, didn't know how to make friends or find someone to date, and so on. It was rough but he also had lots of family suport and school support. Honestly, I didn't have his limitations and I found jr/sr high to be really tough at times. But then college was even harder for him. The social skills needed there are tremendous and there are so many more nuances. His regular support system was gone. People didn't know him or understand his quirks. And living in a dorm was a disaster for him. My brother has struggled finding a job right for him. He still struggles and misunderstands some situations, but now that he has a diagnosis and knows that people aren't just picking on him, or expecting things from him that are unreasonable, he has made huge strides. However, as he has aged he has found good friends. Some are disabled more severely than him, some have Aspergers like tendancies, some have no disabilities at all but have similar interests. He is very loyal and good to his friends. He is a fantastic uncle to my children and volunteers at organizations that love him. His confidence has grown, his willingness to be himself and reach out to others is amazing. He is very social - but now isn't offended when someone tells him to back off or stop looking at them in a certain way or doesn't understand his jokes.

 

I know your dd is having a hard time, Jr. high is HARD. It is hard for someone without special needs or special ways of seeing the world so I can just imagine how much harder it is for her. :grouphug:

[Julie in MO]

And thanks for the thoughts specifically about junior high. I see such a difference now in how kids relate to her than even last year.

 

I am so encouraged by what everyone has shared...thanks SO much.

 

Blessings,

Julie

[amydavis]

Just wanted to send you hugs. :grouphug:

Ds10 is an aspie. He functions pretty well, but our main concerns are his "processing" issues and anxiety. It can be so hard. I rarely make it over to this board*, but it does feel good to know that there are others out there dealing with some of these issues. Once again, hugs! :grouphug:

 

*and by board, I mean specifically this special needs section. I most certainly spend far too much time on the WTM boards in general, LOL.

Edited October 26, 2010 by amydavis
Did not want to look like I was in denial...LOL!

[Julie in MO]

and isn't it nice that this boards covers so many needs in one place? Sort of like an education superstore!

Blessings,

Julie