Help with different types of AS

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sisymay
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11 Oct 2012, 11:06 am

Hi I'm new here. My 14 yr dd has just been diagnosed with AS. She has always had symptoms that started around 3 or 4 yrs old. Difficult situation on why she wasn't formally diagnosed before 14.
Anyway, she used to have this friend (the only one she EVER had) who has AS. But, she is nothing like my dd. She was VERY rude, arrogant, mean, etc. She hurt my daughter very badly and I stopped the friendship.
I'm reading 'the complete guide to AS' by Tony Attwood, and it's wonderful. It explains my dd to a T.
SHe is very depressed, social anxiety, sensitive to sound, obsession with 2 things, gets into it's 'world' and has a fantasy life, shy, quiet until she is in situations that she can't handle, no friends. The no friends is partly because of AS, and partly because of our family situation that we are desperately trying to change but can't.
The other girl's symptoms are explained on pg 20 of the book. Correcting and discliplining other children, thinks they are an adult, defies authority, 'runs' the family, overly critical of others, etc.
How can this be? I mean, how can 2 very different set of symptoms have teh same diagnosis name?
I am wanting to get books, find websites just for aspie kids, etc for my daughter to read to understand about herself. But, most books I have seen, even the ones just for children to read, are for the symptoms this other girl has. I don't want my daughter to think she is this way. Plus, I want books that explain HER symptoms.
Has anyone had any experience with this, or know of any books, websites etc that she can read to help with her own symptoms and not just all the symptoms put all together in one box?
Thanks so much for your help!!



ASDMommyASDKid
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11 Oct 2012, 11:55 am

Autism is a spectrum so there are a wide variety of traits that fall under its umbrella. In addition, the same traits can manifest themselves in different ways because of personality traits that have nothing to do with autism.

My son is what you consider a separate category, I guess. LOL He tries to run things his way, thinks he is an adult etc. Why? Well he has no social skills, for one. He really does not understand why he is expected to act like an adult always knows better than him, because often they don't. Because of his poor social skills he really does not know he should pretend they know better when they don't. (if something has to do with one of his special interests they often do not know better, and he is well aware of this. ) He is also very rigid and will not play games others want to play. He would rather be by himself, than do something he does not think is fun. He doesn't force anyone to play his way, but he will not compromise at all.

Your daughter may be more passive and more likely to withdraw when faced with social dilemmas. She may be socially skilled enough to know that she does not know how to fit in and is afraid of tackling that which she does not understand.

Autism is not a cookie cutter kind of thing. They all (just like NTs) have their own traits.

Edited to say. My son is not intentionally mean or anything. He is rigid and too honest,

As far as mean Apies go,of course some are mean and some are not; just like there are mean NTs and nice NTs. Aspies are just more misunderstood because they think so differently.



Last edited by ASDMommyASDKid on 11 Oct 2012, 1:33 pm, edited 1 time in total.

jedaustin
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11 Oct 2012, 12:05 pm

We're all different people and our symptoms manifest in different ways depending on our environment.
Water when very cold is a solid, when not overly agitated or heated it is a liquid, and when it becomes heated it turns to vapor; all three states are still water.

I wasn't diagnosed until I turned 42; instead I had to develop my own workarounds to deal with people I just don't understand. Being withdrawn and being explosive are just two sides of the same condition like the water with or without a flame.

It is very difficult to deal with a world that doesn't just accept you that way you are, where even well intentioned things you say are taken in negative ways, and worst in the pre-adult world where being different puts a big target on your back. I didn't have very many friends either - I still don't - because a lot of people are so vicious, unreliable, and deceptive. I have trouble trusting people that have betrayed my trust even once. People lie too much

At a certain point I transitioned from a shy depressed person into an angry abusive person because I felt like I couldn't win no matter what I did so at least it was being in control. Fortunately a few years later I had the epiphany that beating up anyone that angered me was futile. I also defied and still do defy authority to some degree. Positional authority is irrelevant to me for the most part when there are rules that supersede that authority. My guess her behavior is a way for her to feel in control.

The world is intolerant of people that are different regardless of what they say. Your daughter can't change the world any more than I could and you can't change your daughter but you can help her prepare herself for a better real life when High School is over. For me it was the realization that I had to control what I became focused on so that it was something that long term helped me rather than hurt me. I did that when I was 13 and make quite a good living as a result of that simple decision.

My recommendation is this - don't fight it. Don't treat her as a defective person that needs to be fixed - you will never succeed. If she feels like an adult treat her like one. Give her responsibility and show her you trust her. Encourage her to push her focuses into constructive areas. For example if she is stuck in a fantasy world she could make quite a nice living sharing that world with the rest of us if she develops it and writes it down in story form. If she's bullied at school (I WAS BIG TIME) help her deal with it (I recommend Judo!).
BTW.. I recommend she read/listen this book if she's ready: What Every Body Is Saying by Joe Navarro. It has all the 'rules' I tried in vain to learn for decades.
Good luck.



argyle
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11 Oct 2012, 12:07 pm

This is just a guess, but...autism seems to encompass a pretty broad spectrum of traits.* I'm married - and one thing that confused both of us is that each of us fits half of your typical book on Aspergers. You aren't alone. The way I'm looking at it - there's a lot of ways a machine can malfunction - it isn't realistic to expect that they'll all be broken in the same way.

For example, I'm fairly asocial, hardly ever display emotion, and have communication issues, but I'm fairly flexible. On the other hand, my wife is extremely sensitive, has different communication issues, lacks empathy, and is very rigid.

DSM V is moving towards defining autism in terms of the presented traits. From a clinical standpoint, this seems reasonable.

You might try encouraging your daughter to become aware of her autistic traits by measuring them. In the test post in the general autism forum, there's one test that measures social tendencies, communication issues, and rigidity. There's another test that measures emotional sensitivity. Taking those tests might give her some notion of how she is autistic. Following that, she'll probably have to pick and choose applicable sections from books based on whether or not she has those issues. She won't have some of them. F'r instance, I pretty much ignore the meltdown sections - while my wife reads them very carefully. I haven't found a book that splits up coping strategies by trait, which is kind of a shame.

One problem you seem to be encountering is that (speaking really, really approximately and only from my personal experience), Aspies seem to fall into two groups. (sample sizes of order 10, with significant amounts of bleed between groups)
(1) Quiet, socially odd
(2) Rigid, meltdowns
Type (2) is easily recognized at a young age and tends to receive treatment and attention because they beat other children and have issues with employment.
Type (1) is more often recognized later in life, if at all, when their significant others start complaining.

Your daughter sounds more like type (1).
So, you might have more look checking out relationship books for adults - many of those are contain advice for type (1) because we seem to run into problems later in life.

--Argyle
*This is true of a lot of diagnoses. Take cancer, for example, if you actually look at it, there are probably 10-20 different traits associated with a cell being cancerous. Or take personality disorders, there are roughly 10 separate personality disorders - each of which has a lot of shared traits. Humans are complicated and even really similar disorders can express themselves very differently based on small differences in the underlying pathology.



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11 Oct 2012, 12:38 pm

It is depressing when AS gets portrayed a certain way. One of my pet peeves is when AS gets portrayed as us being cold hearted sociopaths and being incapable of caring for others and when we do care, it's always about us than them. Then I hate it when they also make it out to be that our special interests makes us commit crimes. That just makes my blood boil. No doubt there are aspies who are actually like this but they be in the minority. Those ones I would avoid.

But sadly I must say that mean girl does sound a lot like me from what you described what Attwood said. But I am an adult now so I am not the same as I was as a child. I am loosened up and am now laid back, I still want to control my environment so I go off into my own world and will refuse to play a game with others if it's not done my way. I don't try and punish other kids because I know now that is something parents do to their own children and I quit being the authority of everyone.

But I am not a typical aspie.


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sisymay
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11 Oct 2012, 12:43 pm

thanks everyone for your replies, and I'll have to answer later. Just wanted to say for right now is that the girl I am talking about, her parents admit she has aspergers, but will not get help for her. The mother told me she doesn't wnat her to take meds, so she takes meds herself to deal with her. She is torn down, exasperated, to the point of hating her. But, she doesn't do anything to help her.
One thing that is so sad is that she had a friend, had similiar troubles, and wrote on facebook - '' xxxx, you are now officially dead to me'. The girl died less than 6 months later.



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11 Oct 2012, 1:04 pm

sisymay wrote:
thanks everyone for your replies, and I'll have to answer later. Just wanted to say for right now is that the girl I am talking about, her parents admit she has aspergers, but will not get help for her. The mother told me she doesn't wnat her to take meds, so she takes meds herself to deal with her. She is torn down, exasperated, to the point of hating her. But, she doesn't do anything to help her.
One thing that is so sad is that she had a friend, had similiar troubles, and wrote on facebook - '' xxxx, you are now officially dead to me'. The girl died less than 6 months later.



That sounds horrible what she wrote. I wonder if they had a fight or something and she was mad at her and then she was glad she was dead? I wonder if she has issues with anger?


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jedaustin
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11 Oct 2012, 1:09 pm

Quote:
My 14 yr dd has just been diagnosed with AS

For some reason based on the above statement and the statements about running the family I assumed this was a parent/child relationship. I think I assumed wrong... what does dd mean?



sisymay
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11 Oct 2012, 1:41 pm

I don't know if she has anger issues, but she is very set on having things her way, won't let others do anything except what she wants, talks down to others to the point of bullying, etc.
dd means 'dear daughter' it's an internet acronym meaning daughter. I don't know why 'dear' is thrown in there. There aer others such as ds 'dear son' dh 'dear husband'. Sorry I should have not used dd I guess, but I am on a lot of message boards and am use to writing that way LOL
Out of everything I've been reading on teh internet and in books, especially by parents, is that no one is talking about what helps. What do doctors do to help these problems? It scares me that lots of parents are saying their child never has friends and are very lonely even on into adulthood. Is there no hope?
I understand that there are a lot of people who would rather not have friends. But what about the ones who do?
We have tried girl scouts, homeschool groups, vacation bible schools, church youth groups. But thru the years, we didn't realize that she had a problem keeping her from wanting to do these things. We thought the more we had her exposed to other kids, she would be better, since she was so depressed and wants friends so bad. We were so confused because when she was with them, she was so scared and had to leave. Well we found out that's not the case.
We have just started trying to find help since we weren't able to pay for any help until this past April.



zette
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11 Oct 2012, 2:16 pm

The book Parenting Your Asperger Child has a chapter where they describe 4 or 5 different subtypes of AS. You might find it interesting and helpful.



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11 Oct 2012, 2:24 pm

I just think all children are unique and that seems to apply even moreso for kids with Aspergers. I mean the traits can be so extreme compared to average kids that they make our kids that bit more different and even to each other, if the traits are not shared. I know 3 kids of similar age with Aspergers and they are completely different.

My daughter is very outgoing, tomboy, in your face, and is particularly oppositional, which is the main reason she has been diagnosed so young for a girl, I think (6yrs). She seldom does a thing she's told and sometimes appears to not hear, but she isn't destructive or violent or cheeky. She makes it all too obvious that she's not happy with something and can have mood swings. But, she's really a very happy little girl, most of the time, full of beans and enthusiasm. There's not a bad bone in her body, even if she can come across as selfish and wanting her own way, no matter what everyone else wants.

One of the other kids I know is very emotionally immature. He seems to cry an awful lot, which my daughter seldom ever does. He's very friendly and likes to touch people and he's a lovely child. The other one is quite timid and frightened by lots of things. He has regular meltdowns. When he's spoken to, he acts like he has definitely heard, but may turn his back and appear shy. He also has dyspraxia, which does impact a lot on his life.

Of the 3, my daughter is the most likely to remain in mainstream. The friendly boy is already in a special needs unit.


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11 Oct 2012, 4:54 pm

jedaustin wrote:
Quote:
My 14 yr dd has just been diagnosed with AS

For some reason based on the above statement and the statements about running the family I assumed this was a parent/child relationship. I think I assumed wrong... what does dd mean?


I think the OP was talking about her daughter...

sisymay wrote:
thanks everyone for your replies, and I'll have to answer later. Just wanted to say for right now is that the girl I am talking about, her parents admit she has aspergers, but will not get help for her. The mother told me she doesn't wnat her to take meds, so she takes meds herself to deal with her. She is torn down, exasperated, to the point of hating her. But, she doesn't do anything to help her.
One thing that is so sad is that she had a friend, had similiar troubles, and wrote on facebook - '' xxxx, you are now officially dead to me'. The girl died less than 6 months later.


and sidetracked in a later post about the friend of the daughter who is so different.



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11 Oct 2012, 9:35 pm

Partly it will be 'the disorder' and partly, it will just be personality and environment - very much like Neuro-typicals


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11 Oct 2012, 10:54 pm

sisymay wrote:

Out of everything I've been reading on teh internet and in books, especially by parents, is that no one is talking about what helps. What do doctors do to help these problems?

We talk a lot on this forum about what helps our kids so I encourage you to hang out, browse through the old posts, I know we've had lots of folks talk about dealing with kids the same age as yours. Medical doctors can have their place in the care of your child but you are more likely to find more help from therapists (occupational, speech, etc.) and in your case with an older child just being diagnosed, a psycho-therapist may be a good place to start. Depression and anxiety can be addressed. A good therapist can help her learn coping mechanisms and learn to deal with her feelings. Finding a good therapist can sometimes take a few tries so if you go down this road and don't have a good experience at first, don't discount it as a possibility. Not every therapist is a good fit for every patient. And along that line, I wouldn't hesitate to make a change if you don't feel comfortable with a doctor or therapist. Trust your gut!



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12 Oct 2012, 12:24 pm

I wanna say that from what I've read, there's 4 different types of ways that AS can present. One is more "aloof", one is "active but odd", I don't remember the other one, but another way is "passive". I believe that my presentation is more of the "passive" one (which seems more in line with how your daughter is).

It's a shame the other girl's parents won't do anything to help her. And although I'm not one for medicine (as I grew up pretty much being big pharma's guinea pig for adhd stimulants and that turned out badly), there is so much more outside of that which she could do to help her daughter and thereby help herself (one thing my parents did for me was send me to a social skills coach of some kind to work out the kinks I had in mine, not that they come naturally to me, but at least it's more on my radar now). It sounds like in her ex-friend's case, that it's to a point of both parent and child harboring tons of anger and resentment towards each other and issues from that are carrying over to other facets in their lives, like into the treatment of other people.

The impression I get, is that, information out there on 'helping kids with AS' is incredibly disorganized, and sometimes that the search engine results are sludged up with unhelpful hack sites (there is a certain blog site that comes to mind, rife with "comical" stock pictures of kids "melting down" and a slew of demeaning commentary regarding the kids including emphasizing medicating kids but not a lot of strategies the parents can use to help their kids learn how to cope and grow and be empowered). A lot of sites I come across parents (not the parents here usually) that gripe about their kid with AS and basically imply that they have to mourn the fact that they weren't the normal kid that they ever wanted (which of course, especially in front of the kid is as good as telling a kid that they might as well not exist aka they're not worth anything to them, which you can imagine how hurtful this feels to come across this kind of stuff considering we didn't really get a choice over whether or not we wanted to have an ASD or not, I'm still trying to get past that type of resentment concerning stuff that my mom has said along those lines).

As to your fears, I have people in my life, if I struggle to remain to connected to them, then they come and go though but I never forget what they've done for me, but I always seem to find new people to talk to regardless save the few people I've been able to remain in contact with. There are some fears that you shouldn't let rule over you though, like fear of how you are going to be perceived by someone else for having an abnormal kid. I noticed that my mom feared this above all, and felt the need to be more controlling like a helicopter mother. This did not help me in any way learn from my mistakes and all it did was stress me out over control issues into having control issues myself (including controlling what food went into my mouth, or should I say,not go into my mouth).

When it comes to being lonely, it really depends on what type of lonely. There are different flavors of it. There is being in an environment that doesn't understand you type of lonely (with the exception of those amazing people who rise above to meet me in the middle to understand my struggles), that has more to do with having AS itself. Some places are more tolerant than others obviously. There's the needy kind of lonely, but then I find that I'm more like that when I'm deficient on certain vitamins and minerals, like for instance, D3, omega-3's, magnesium. And then there's other kinds of lonely, like wanting someone to talk to when everyone's asleep at 4-5 am (I've been pretty much sleep disordered my whole life). So that doesn't really help either (so I either go talk to other aspies on here or on AIM because I'm apparently far from alone in the disordered sleep department, or sign onto irc and talk to people on the other side of the world).

It really depends on what you mean by your choice of the word "hope" and what it means to you. Does "hope" mean functioning, and in what sense? Does "hope" mean independence, and even in what sense? Does hope mean normalcy? (I hope not that one). Basically does hope mean something that is attainable to/from her, and you will see with time where her strengths and deficits are. Granted, I'm not employed right now, I'm scared to learn how to drive, so I'm not exactly miss independent by any scope of the imagination. One day I would like to be though, but I generally mature slower than other people I've noticed. Once I tried to be employed in sales and it was a bad bad idea (not going to get into it, it was that scarring of an experience). I was way in over my head, and I notice anytime I attempt to act NT (or even attempt to function like one) for an extended period of time, I end up unraveling to the extreme because my brain is not capable of such. As for people, I have friends, but, I'm not friends in the same kind of sense NT people consider to be friends, considering that's just not who I am. The people I'm friends with, are mostly over the internet, usually are aspie or neuro-diverse in some way themselves (I have crappy luck in person, it seems like nobody around me is like me in any regard or have interests that are like mine). But finding these few souls who get me, these are the people who understand me and I wouldn't trade these people for anything (some I've remained in contact with for about 10 years). I just wish many of them didn't live in far away places. I do have a boyfriend who I've been with for over a decade. He's not AS but is neurodiverse in his own way (he's bipolar, and possibly has other stuff going on like adhd and dyslexia but has not been evaluated/diagnosed with it. He also has some aspie traits, although he doesn't seem fully aspie, he seems to have developed these traits to cope with growing up in a chaotic home).

For some reason, I have issues with initiating things. When people ask "ok, is there any concerns, questions, or requests" or any other prompting question, my brain just freezes. Likewise I have a hard time bringing things up to people. And maybe that's why I don't take good to taking the initiative to call people to talk to them (aside from not liking the phone anyway), or suggesting "let's hang out, in this place or whatever". Any time I'm required to think of anything good to ask, I just blank. And when I do initiate things, I have a hard time retaining it.

Ok, first of all, it really depends on the person. Some people are more of the less the aloof type of AS, and I notice a lot of those people don't tend to pull people terribly close to them and seem pretty okay with it. And then there are the people who want friends, but obviously having AS complicates that, as not everyone understands us, and even if we were to get multiple friends, once there's too many people at the table, our brains clock out because we cannot pay attention to that many people at once. And then there is the upkeep required to keep friends (initiating and following through with communication, hanging out, planning things, etc). That lies in executive function, which is of course, our main deficit. So we have a hard time winning there too.

Basically it sounds like you tried to put her in a bunch of social group-oriented activities. Which, at least to my experience, a lot of social dynamics play out in these groups whether people realize it or not. Either she will feel sad, seeing all the other kids around her easily make friendships, or jealous seeing people brown-nose socially to climb the ladder to have the leader like them better than her, get frustrated when people want to social-loaf and throw the work on her. I'm willing to bet it's the first reason though. And sometimes when you get a group big enough, it's overwhelming to the person with AS. And especially if there are multiple groups involved (which if they were not spaced far enough apart in meeting, would tire her out from being social all the time and not having the time and room to recharge in between).



esjayeff
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13 Oct 2012, 7:43 pm

Wow, first up let me say that with a daughter who I believe to be on the spectrum but who isn't yet officially diagnosed I cant believe it took me this long to get onto a forum....and, the reason I found this forum is that because I am so passionate about the issue of ASD, particularly in girls, I am writing a feature article on it and it suddenly occurred to me, hmmm, wonder if there are any good forums out there, lol....but anyway, to the topic of this thread....

Sisymay, I am hearing you. Since my daughter was born it was obvious to me and everyone else that she was 'different'. No-one could put a finger on it. Once she started school I was always being asked to have her assessed, it was suggested she had hearing problems, that she was a slow learner, that she was developmentally delayed or had ADHD. Some even said she was incredibly gifted. I asked about Autism, no no no everyone said, she'd very gifted, but she just cant focus. It didn;t help that my marriage was a disaster, my now ex husband was dragging us all around the country (Australia) and she was having to start new schools often. By highschool she was a meek little mouse who suffered severe anxiety and so I began homeschooling. It also didn't help that he was passionately opposed to my idea and desires to seek help. When my marriage ended I took her to see a specialist who told me she presented with symptoms indicating schizophrenia.....that she was too young for an official diagnosis, but that by age 17 she would possibly have a full blown psychotic episode....I have had my heart in my throat since then.

My daughter turned 17 this week. Between ages 14 and 17 I too came across the work of Tony Attwood. I am convinced my daughter is on the spectrum and most likly with AS.

One day we were in the bookstore and she picked up a book on the sale table called 'All Cats Have Aspergers' (she's mad about cats) and immediately recognised herself in the pages. She started researching Aspergers in girls on her own volition and also came across Tony Attwood. She asked me if we could go see him. She said reading the book about the cats made her think maybe there wasn't anything wrong with her at all, maybe she just belonged to a different group of people. This has inspired me to seek a diagnosis again, and is also the inspiration behind the feature article I am writing 'ASD; A Different Way of Being.

Anyway, I could go on and on, but really I just wanted to tell you that I really identify with what you have told us about your daughter. Mine is also a sweet, shy, gentle person. While she is socially awkward she is kind, she never takes sides, in fact she has an incredible sense of social justice. Now at 17 she is studying her obsession at TAFE (animation). We are having a whole lot of trouble with her ability to cope with the workload, organise herself, understand the instructions that may seem well laid out to everyone but make absolutely no sense to her. But, she has met a few other kids who are the same, and who accept her differences and even more importantly, accommodate them. She has never really had any friends before. She is happy. But she still want to know, does she have Aspergers?