Aspergers Syndrome

[Cazzi]

From mums point of view

Wow, I didn't think this would turn into such an essay! Apologies for the length.

From a mothers point of view, sometimes it can be hard to get your kids diagnosed.

When my daughters traits started to show more, in her earlyish teens when you'd expect a person to start to become more independent etc, my daughter started to seem rebellious, was getting into trouble at school for not doing work, disrupting class etc. We had instances of bullying because she was considered weird... hell, my daughter at one point was convinced she was an alien as she had so little in common with most people at school; this in turn lead to bad temper outbursts, including throwing her best friend against a wall; having permanently scarred knuckles from hitting walls in frustration etc etc.
She's also a very intelligent girl but refused to work at school, she had lots of unexplained headaches & fuzzy eyes etc

We tried the school counseling service,, no help.
I had her off to the doctors & referred to behavioral counselors... who would only see her, basically ignored any output from me and then decided as my daughter wouldn't talk to them as by this time she wouldn't talk to people she didn't know well, than they couldn't help... so it was back to square one!

It wasn't til she went to college at 16 that we started getting help. She chose to do an IT course, which she enjoyed, but kept crying off class due to the fact she was the only girl in there (she doesn't get on with boys in general) and she had to walk to college & was literally scared that someone might want to stop & talk to her!
Luckily she had a very understanding tutor who appeared on out doorstep with coursework for her & she managed to pass that class with very good marks.

This was about the stage where my mother (her grandmother) took her off to see the new GP she'd been transferred too when her regular one retired. He's quite young and was relatively fresh out of training.
He listened, asked lots of questions, listened again, surprisingly became one of the very few men (or people in general) that my daughter responded to; and the referred her to a psychiatrist he knew personally.

This was an excellent move, again he was another person she would respond to, although she did spend most of her sessions with him with her head buried in my shoulder. He knew she wouldn't talk on her own so didn't force the issue & instead saw us in a family group. After a fair few sessions his diagnosis was traits of Aspergers, anxiety & social phobia.

The effect on my daughter when she found that out was pure relief that there was a name for what she was going through & yes she was weird ( and is now proud of that) but it wasn't her fault. We've only had to suffer one more tantrum since then, just before her 18th birthday when she trashed her bedroom because she didn't want to grow up!
I got her through that by explaining that unfortunately getting older was mandatory, but "growing up" wasn't

As for me, I've been carrying the guilt around that I'd been treating her as a rebellious teenager, forcing her out of the house, punishing her for all the trouble & non work at school etc etc and I have to live with the fact that I've probably contributed towards the social phobia/agoraphobia etc issues she has.

2.5 years down the line she's settles in a routine, she communicates to friends all over the world via the internet as she is scared of using a phone. She, like others, doesn't like to be touched, but will come and hug me frequently.
Although she's basically a hermit in her room full of anime poster & books, she does like to get out of the house sometimes as long as myself of her grandmother is with her; the last time the 3 of us went out, she was brave enough to order tea & food in a cafe
She does have trouble reading people, we had to give her brother a lock for his bedroom door as she couldn't understand why she couldn't just walk in and take something/start talking to him without knocking first, so he's happier now. She's happier now we're not trying to force her to do things that scare her and is gradually getting to not mind being left alone for a few hours.. which gives me a break by getting out to the gym/visiting friends etc.

I don't know if she'll ever get herself to the stage where she'll overcome her phobias and get out of the house & maybe find employment, but she's much happier & relaxed with life now

[Seshat]

I know that Seshat posted a link to some sort of online self-therapy project.

http://www.moodgym.anu.edu.au/

Kelly, my parents don't even BELIEVE in Asperger's. They think I'm just intentionally weird.

You've all seen (roughly) how depressed and anxious I am. My parents don't believe in THAT, much less my probable-Aspie-ness.

The hardest part of my Asperger's is meeting people I know somewhat. <much snippage>

Magpie, that could have been me saying that!

& was literally scared that someone might want to stop & talk to her!

That's me.

As for me, I've been carrying the guilt around that I'd been treating her as a rebellious teenager, forcing her out of the house, punishing her for all the trouble & non work at school etc etc and I have to live with the fact that I've probably contributed towards the social phobia/agoraphobia etc issues she has.

Cazzi: my parents will STILL behave like that towards me, and I'm 41. You at least were trying to get your daughter diagnosed, and now that you KNOW, you've changed.

I would LOVE my parents to act like that.

I don't know if she'll ever get herself to the stage where she'll overcome her phobias and get out of the house & maybe find employment, but she's much happier & relaxed with life now

Who says she has to go out of the house to find employment? Maybe she'll be a writer, or an artist, or any of a number of jobs that can be done across the web.

She probably will move out eventually - there's nothing as satisfying as having your OWN bathroom, that is organised YOUR way. And your OWN kitchen, and so forth.

[Dreamstalker]

I also have a problem with logic, but it's more me not being able to understand the logic of other people

Same here, although I've decided to give up trying to figure out why a lot of people do what they do. I understand their (lack of) logic fine, what baffles me is how they're incapable of thinking anything through.

the school systems I've been in the last decade and a half never did anything to help. They just shoved me into ESE ("Special Ed") classes and ignored me.

Been there, done that, mom had to sue the school system to get anything useful done. Supposedly this was one of the best public high schools in the city...but if you didn't have a visible disability they wanted nothing to do with you.

hell, my daughter at one point was convinced she was an alien as she had so little in common with most people at school

So it wasn't just me! I used to think that as well; that could be where my furry tendencies came from. In high school, I really came into my own on the theater crew. TD was impressed that I was the only girl to stick it out for more than a semester and the guys were wowed by the fact that I was a girl and liked building stuff/climbing around in the rafters.

[Magpie]

One thing to keep in mind - just as there are "many autisms", there are many ways that Asperger's presents. So much of what people have listed here is the exact opposite of me. That doesn't mean that one of us is wrong, or that one of us was misdiagnosed. So if you see advice on Asperger's that seems completely off-base to you, bear in mind that it's probably more useful for people who aren't you, and don't worry about trying to apply it.

[Dreamstalker]

Yup. A lot of the traits that were thought to apply to me actually didn't pan out when I had a neuropsych exam a few years ago (I can read facial/body language fine; the problem comes when people don't know what they're actually projecting). I found that a lot of the online test things describe the lower-functioning end of the spectrum; one person's interpretation of the traits won't fit everyone.

[Seshat]

Yep. We're all weird. We're just all weird in different ways.

[cewfa]

I'll be 25 this year and have my own place and pay my own bills, and I am slowly starting to accept my "traits" if you will. I do the best I can to understand my friends, and I suppose they do the best they can to understand me. I don't know, I can't really tell. It's really weird, I like myself, yet I don't like myself.

I don't mind meeting new people, although I am quiet at first, I do communicate with people via text message and internet. I'm not afraid to use the phone, I just don't like to.

I'm writing these things out mainly to sort out what I have and what I don't have. This is all confusing and I've been diagnosed with AS since I was 11 and Autism since I was 18 months old.

[Cazzi]

I forgot about the noise thing. Some days loud or high-pitched noises bother me more than other days, I also don't like to be touched unless I initiate it,

That's what we eventually found out why my girl was disruptive in school, she said even the classroom clock ticking was driving her mad & the strip lighting was hurting her head. She said that those along with the constant rumble of people whispering, writing & shuffling in their seats made her feel like she wanted to explode.

Cazzi: my parents will STILL behave like that towards me, and I'm 41. You at least were trying to get your daughter diagnosed, and now that you KNOW, you've changed.

I would LOVE my parents to act like that.

I am sorry they still behave like that. I'm sort of thankful my father isn't still around, I suspect he would have been the same.

We don't see her father very often (He decided to break promises to see/call the kids and now seems to think its my fault they've followed his example and can't be bothered if they see him or not), but it rankled me a lot when after her diagnosis he was due to take her & her brother to his grandmothers birthday lunch. Practically the first thing he said was, I'm not taking her if she's going to act stupid or cause a scene!
To say I was livid would be a bit of an understatement, I asked him if he'd say the same if she'd been born with some more noticeable condition or would he be too embarrassed to be seen out with her then. At least he had the grace to look a little ashamed then.
His parents on the other hand deal with my daughter much better, they already have a grandson who was diagnosed early so know what to expect... & they don't take it badly when my daughter hides in her room on the (rare) occasions they visit

Who says she has to go out of the house to find employment? Maybe she'll be a writer, or an artist, or any of a number of jobs that can be done across the web.

She does have beautiful writing skills, but unfortunately she won't do anything with them, one of her traits is she won't allow herself to do well so she just ignores what she can do. She also used to spend a lot of time drawing Manga until she again got too good at it.

She probably will move out eventually - there's nothing as satisfying as having your OWN bathroom, that is organised YOUR way. And your OWN kitchen, and so forth.

She has a lot of obstacles to get over before that happens, knives & cooking hobs scare her and she can't tell if she's hot or cold, which means that during winter I have to run the heating 24/7 as she really dislikes wearing anything but a t shirt & pants
I live in hopes though, it would be a very big step forward for her.

I love my daughter to bits including all her quirks, but even so and especially when I hit a bad downer, sometimes I resent the fact that the life I was hoping to have after my kids had grown up is now on hold & the plans I made probably aren't going to happen & its gets lonely dealing with it all myself.
Which is why I almost slapped the (Ex) in-laws when they came out with . well J & N are going through the same thing with A
Grrrr, no they're not, there's 2 of them for starters, & A does go out to school & has a social life too!

That may sound like an awful thing to say, but I'm only human, like everyone else, not a saint.

Yep. We're all weird. We're just all weird in different ways.

I'll agree with that I have my little quirks too, I hate calling people on the phone for some reason, in case I catch them at a bad time or something.. that &

I'm a total geek which apparently my kids friends think is cool to have a gaming geek mum

I do the best I can to understand my friends, and I suppose they do the best they can to understand me. I don't know, I can't really tell. It's really weird, I like myself, yet I don't like myself.

Your best is the best you can do Yeah, I know that sounds weird.
I think in any situation, if you find people you like to be with & explain to them you have you're quirks & what they mean, the good people will stick around to be friends, anyone who backs off from that probably isn't going to be a good friend anyway.
For instance, the girl my daughter threw into a wall is still her friend after all that. although they don't see each other much in person, they still communicate over facebook & msn as the friend has moved away to Uni.

I don't mind meeting new people, although I am quiet at first, I do communicate with people via text message and internet. I'm not afraid to use the phone, I just don't like to.

That isn't just AS though, what you said in that sentence is so totally me And a lot of other people too I suspect!

[Misanthropical]

My big guy has AS and was diagnosed when he was 8 years old. He is 17 years old now. He has trouble with social situations and relating to his peers. He has no idea what he is suppose to do and will often look to me and I will help him through it.

He is flying out next month and I'm worried about how he will deal with it all and the getting on another plane to get to where he is going.

I can't imagine having him any other way. He is smart and very funny. We crack each other up all the time.

I tried to talk him out of going, but not because of his AS, but because I can not stand his girlfriend. Plus, I am a worst case scenario worrier.

[cewfa]

I can totally relate on the light noise and the clock ticking thing. I have to fall asleep with the TV on most nights or with a fan because I can hear the silence of my bedroom.

[Gidgetdigit]

Well, I was married to a man with Aspergers, and while I do not believe my son has Asperger's. he has some disturbing social traits. If there is anything I could do to help you. let me know.

[cewfa]

Well, I was married to a man with Aspergers, and while I do not believe my son has Asperger's. he has some disturbing social traits. If there is anything I could do to help you. let me know.

What kind of disturbing social traits, if I might ask?

[Misanthropical]

I can totally relate on the light noise and the clock ticking thing. I have to fall asleep with the TV on most nights or with a fan because I can hear the silence of my bedroom.

I thought I was the only one that heard silence and the ticking. I sleep with a man that snores, so I don't have to hear the silence or ticking very often. When I lived alone I slept with a radio or the TV on because the noise drove me nuts!

Yep. We're all weird. We're just all weird in different ways.

You say that like it's a bad thing! My family doesn't do normal and we do not allowed normal people in our house because they might upset the atmosphere of the house.

[cewfa]

I want to live in your house misanthropical.

[Lace Neil Singer]

I was diagnosed with AS over a year ago; couldn't tell you exactly as time perception is one of my issues.

Others are dislike of being touched; guarding the "bubble" cuz I have severe personal space issues; hoarding cuz I find it difficult to throw stuff away even when it's had it; inability to tell when I'm being rude; difficulty in reading people; taking things at face value logicwise, for example if you ring me up and ask me if someone's there, I will say "no" and put the phone down rather than go and look for them and ask them to come to the phone; some stimming, foot tapping and finger tapping along with moving my feet randomly; a seemingly endless plethora of obsessions, some which I have had since childhood; tuning out to listen to music playing in my head; getting stuck in conversational loops and repeating myself.

Phew, that's a lot. o_o