Hi! My mom and daughter (maybe?) are on the spectrum

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Thera
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11 Apr 2014, 12:20 pm

Hi everyone! My name is Thera. I found this forum after researching information on Asperger's. I am NT, but my mother (who is 72) is AS.

I spent much of my youth and young adulthood wondering why my mother is so different. When I discovered AS, it answered so many questions. She did get a confirmed diagnosis later in life. She presents with very typical AS behavior including "odd" gait, stimming, "unusual" appearance, echolalia, and her special interests include Classic Drama and literature, classical music and she loves animals. She is also a savant at foreign languages and worked as a language professor.

She never showed much interest in dating. The only reason I was born was because my father was predatory and needed a green card. He charmed her family and my mother felt pressure to be normal and get married and have children. Once he got his green card, he split. Needless to say, I don't have a great relationship with dad!

It wasn't always easy growing up with a single mother with AS. My adolescence was extremely turbulent and my mother had difficulty showing empathy. I wasted a lot of time being angry with my mother that she couldn't be a "normal" mother. I resented her odd choice of clothes, her inability to relate to other parents in the community, and her complete inability to understand me at all. Her main challenge with AS has been her executive function skills. She has an extremely hard time making small decisions like what to do with mail and old newspapers. As a result, I grew up in a "hoarding" environment not really fit for a child. We lived in a garbage dump and it took me awhile to get over the resentment over that.

Since discovering AS, I now realize that my mother is a unique individual and I appreciate her for who she is. She is also the sweetest person and has a wonderful heart. Though she is not always great at interpersonal relationships, I know she cares deeply about others and she did a great job raising me on her own despite the challenges. As she gets older and continues to live independently, I worry about her ability to manage her living environment and avoid living in squalor. But she has a system that works for her, though it seems a little crazy! She has one house for living in (that she keeps nice!) and she has another house for keeping her clutter (her mother's old house that she inherited). It's not the most efficient use of resources, but it works for her. It is a good compromise that I feel allows her to feel secure with her belongings, while maintaining a decent standard of living.

Though she never had much of a social circle while I was growing up, she is now the happiest she has ever been. She has a wonderful and supportive group of friends who share her interests. She spends her time traveling, seeing plays, going to classical music concerts and having fun!

I also have a daughter I believe may be on the spectrum. Since AS possibly has a genetic link, I feel it could be a possibility. My daughter is well-adjusted as has pretty good social skills with other kids, but she is terribly shy with adults and has extreme anxiety issues. She is doing very well in school (despite serious anxiety over homework). She also stims and prefers to organize her things rather than play with them. Overall, she doesn't have enough characteristics to be diagnosed with AS, and quite possibly she is NT who simply displays a few AS signs. She is 8 now, and while many of her classmates are starting to get into the "tween" thing (listening to pop music, fashion, etc.), my daughter is extremely uncomfortable around those kinds of things. Anyway, I'm not seeking a diagnosis, but I have found strategies that work with Spectrum kids work to help soothe her anxieties, sensory issues and other things that come up with Spectrum kids.

I'm getting my teaching credential now in Special Education and I'm especially interested in issues facing AS girls, as they often go undiagnosed and don't often receive the tools they need to navigate school and life.

I'm looking for research studies that focus on AS girls (presentations that differ from boys, etc.). If any of you know of any, I'd appreciate if you send them my way!

I look forward to meeting you all!



odd2k
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11 Apr 2014, 12:54 pm

Thera wrote:
I also have a daughter I believe may be on the spectrum. Since AS possibly has a genetic link, I feel it could be a possibility.


There's no "possibly" about it. AS is a genetic mutation that leads to brain restructuring.

http://www.ncbi.nlm.nih.gov/pubmed/21948742

Thera wrote:
Overall, she doesn't have enough characteristics to be diagnosed with AS, and quite possibly she is NT who simply displays a few AS signs.


The diagnostic criteria for AS in DSM-IV (and in ICD-10 for that matter) are complete rubbish, in my opinion. There's a definite genetic link underlying AS, and there are some very specific neurological factors that are displayed in a variety of ways depending on the afflicted person. I'm not a doctor or anything, but from the little you've written I'm convinced your daughter has AS. Of course, it could also be behavior she learned from your mother and from yourself.

Thera wrote:
I'm especially interested in issues facing AS girls, as they often go undiagnosed and don't often receive the tools they need to navigate school and life.

Are you suggesting that the reason there are so few AS girls is because they are under-diagnosed? I hadn't considered that!

Thera wrote:
I'm looking for research studies that focus on AS girls (presentations that differ from boys, etc.). If any of you know of any, I'd appreciate if you send them my way!


I'll keep this in mind while doing my own research. If I see anything, I will let you know.

Oh, I almost forgot... Hi, nice to meet you! :D



Last edited by odd2k on 11 Apr 2014, 1:05 pm, edited 2 times in total.

nebrets
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11 Apr 2014, 1:03 pm

Welcome. Being female on the spectrum can sure be interesting.


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Willard
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11 Apr 2014, 1:17 pm

odd2k wrote:
I'm not a doctor or anything


Never get a diagnosis from strangers on the Internet. :D



odd2k
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11 Apr 2014, 1:18 pm

Willard wrote:
odd2k wrote:
I'm not a doctor or anything


Never get a diagnosis from strangers on the Internet. :D


Very true, sorry if that whole part sounded a bit know-it-all. But you can get some insights from other people here that might prompt you to get a professional diagnosis.



AardvarkGoodSwimmer
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11 Apr 2014, 1:52 pm

Hi Thera, do you think you might be Aspie-lite or Aspie-friendly? And either way is fine, and welcome to WrongPlanet! :D :bigsmurf: :nemo:

I think I know what you mean about your mother and executive functioning and making small decisions. For example, with me filing my federal income tax, I will have a couple of projects to gear up for my taxes and then I'll do them and then I'll review them a couple of times before sending them in. For taxes, this might be entirely appropriate and helpful. Other things, not so much. It's like I have an A game and a C game, and not too much in-between. Studying some zen has helped, and by it's very nature zen is inexact and merely probabilistic.

I personally find stimming helpful in a couple of different ways. I hope you're relaxed with your daughter stimming, although perhaps modeling lower key stimming for public.

Looking back on my junior high and high school years, my boy scout troop and church were in a different school district. My judo club was in the boundaries of yet another school. And looking back, it was helpful that not everything social for me was invested in the one venue of school.



Thera
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11 Apr 2014, 2:53 pm

Thanks for the warm welcome!

I want to quote you guys and respond, but I haven't figured out the quote thing yet :oops: .

I am definitely Aspie-lite and/or Aspie-friendly!! !! I relate better to Aspies than to NTs. I suppose it's because I was "raised AS" so to speak, if that makes any sense. It's what I know and it's normal to me. I have many Aspie traits, though I suspect it's nurture not nature.

Thanks for the insight on my daughter. So far, I have no reason to seek out a diagnosis. She really is doing fine most of the time. But for those of you who know... is there a point in getting a formal diagnosis? So far she needs no accommodations in school (she's among the top of her class), and she is doing fine socially. She's not very social (well, duh), but she has a few very close friends in her grade and also a few best friends outside of school. She's also very happy taking a break from people and just hanging out in the library by herself sometimes. I encourage her to do this from time to time.

I've read that AS girls can mimic typical social behavior at school, but it's very taxing and they tend to "let it all out" at home. When she gets home from school and on the weekends, she is really emotionally spent, leading to nervous breakdown behavior. It all gets to be so much for her. But that's also just life being a girl. There's always drama.

Anyway, I'll be hanging out in the parents' section with more questions. :D