Hello. Forum Newbie. Stressed Mum.

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Hello. I am pretty much a complete newbie when it comes to forums so please bear with me if I make a 'pigs ear' of things.

I am mother to two daughters aged 10 and 12. My eldest daughter was diagnosed AS when she was around 7 years old. I knew that there was something different about her from her being a small infant but never really thought too much about it as I just put it down to her being an individual even back then. When she started nursery school it became clear that her behaviour was very different from her peers and her social interaction was pretty poor as was her eye contact. It was only when she was in her second year at infant school that a teacher mentioned Aspergers syndrome to me. I had been looking into all different types of conditions but nothing seemed to fit her behaviour patterns but when I looked up Aspergers it was like a light bulb being switched on and a weight lifted off my shoulders... now I knew what it could be I could begin the process of understanding her and helping her.
Throughout her primary education it has never really been a huge problem as I work at the school and the staff understood her so well. It is now that she has moved up to high school that things are becoming a bit of a nightmare. We have had many incidents of bullying and name calling, freak, weirdo etc. In addition to this her inability to stay organised is causing a lot of stress and I have been ill. She cannot seem to get to grip with writing down her homework or even keeping her work in the special folder that was arranged for her and leaves her belongings all over the place. Up to now I have not felt the need to tell her of her diagnosis. I never wanted people to label her or for her to feel that it should hold her back or indeed use it as an excuse but it seems that she herself is realising that there are differences with her and has been asking questions about other children we know with autism. I don't want this to be a huge blow for her as I feel that the qualities that her 'aspie-ness' brings to her are what will essentially carry her through life and make her a happy and successful adult but I only get one chance at doing this right.
Anybody out there got any advice they could give me about how to go about this. Perhaps from their own experiences?

oof, that got me into so much trouble. luckily my best friend was in some classes with me and helped me keep things straight. i still love the 9pm-before-3-essays-were-due call.

and, i used to drive me friends CRAZY every freakin' year with a new special interest.

that's interesting, you knew she was different as an infant? interesting.

i seriously wish i had known back in elementary school, because it has been affecting my school work for my entire life. i don't think i would have minded trotting down to resource room for an hour for special lessons if only someone had told me. but, this was back in the early nineties, so i'm sure not many people had a clue, which is fine. now they do. like in fifth grade, i was utterly obsessed with x-files, and i used to zone out A LOT. my teacher was really nice, i wish she knew. and i did end up gathering a circle of friends via my best friend (since second grade) and my parents. they are friends to this day. actually, i found that people were pretty understanding towards me. i remember this girl really wanted to be my friend. i don't know why she came up and talked to me so many times. haha. then i offended her, because i never approached her. luckily it was all cleared up. in middle school, i used to wear a bandana. then, there was this really interesting rumor that i was this orthodox-something... haha. kids are weird. so disappointed they were when i told them my very mundane habit. serously, though, i could have used an ample break in the school day (particularly lunch or something) to send me off to a smaller, quieter room, where people could help me at least organize or teach me the inner workings of the social school body. there are some kids who are super mean, but they have serious problems. then, there are kids who are very nice, but sometimes you have to keep your eye out for them. even if you have AS, i think if you go up and ask for, say, help with physics or english, that can spark something. also, if you keep your eye out for someone who looks lost (my habit in the university -- filmore building was designed to be confusing, i think ) or needs help, maybe you can go and ask what the matter is, if you're good at it. you, this whole time, meaning your daughter. what of your youngest?

Hello, and welcome to the forums!

There is a facility at the school where she can go for support and she has a keyworker there but they can only do so much in trying to keep her organised. It is nice to hear that you had a friend that helped you through school. There was a boy in my daughters class in junior school who seemed to understand her well despite not knowing that she was AS... I am hoping that she can find someone similar at High School.
E has only really had one friend throughout junior school that she has really clicked with. This child is also AS so it has been a kind of love-hate relationship. They can't seem to keep away from one another yet when they get together it can be pretty explosive and has resulted on a couple of occasions with my child getting a punch in the face. Now that they are at high school they only really see each other at lunch times. E has always been a loner and it took me a long time to get my head around the fact that she was okay with this. I remember watching her at school approaching other children to make conversation. It would usually be too much in their personal space and the topic of conversation so completely random that the other child would look at her like she was an alien and then turn and walk away. The one thing that makes people come to her is her extradordinary capacity to draw. As she has gotten older it was not uncommon to see a group of children all hustled together only to find my daughter in the middle of it all hastily turning out drawings for them on the notepad she always has with her. Of course this blessing can also be a curse as criticism of her gift is also ammunition for those kids that just want to be mean.

As for my other child.. they are like chalk and cheese. Although M does display some difficulties with social interaction I don't feel this is enough to say that she is AS. She has a wicked sense of humour and irony which is a blessing for her at times when her sister is being a pain in the butt.

Hi!
Thanks Gramirez

is her inability to stay organised stressing her or you out?
if its stressing you out but shes not too concerned then i would step back slightly and let her find out for herself that there are penalties for say not completing homework, losing books etc etc.
if SHE's the one stressed by it then again she needs to find coping strategies , whether that means checklists for the end and begginging of each class, visible prompts say at home in her bedroom , etc etc, and if needs be how about asking the school to buddy her up with a more organised child.
my 15 year old aspie( not officially dx yet) is way more organised than me, to the point that all her exam times etc are in lovely neat lines in post it notes on the glass pane of her bedroom window,she writes herself lots of reminders etc, however in her personal life at home shes as bad as me, so it can be done with a considerable amount of effort, and is more likely if she is the one having problems, really i think she will need to feel its her benefitting to make the kind of effort needed ... if its not important in her mind , then it aint gonna happen.
one other thing, if she leaves it to the last minute to ask you for stuff that she really needs NOW ( lol my daughter has countless times informed me she has no shirt 5 minutes before the school bus), make it clear that you need her ready the night before and if it isnt done then she goes without whatever she hasnt asked for , that you will not be responsible and make yourself stressed ... but that if she gives you fair warning then you will accomodate.
they are never too young to learn responsibility, and you cant learn that for them ( whether AS or not)

We have one parent here who recently told their child of their diagnosis, and the child was close in age to your daughter's. I believe they took some of the normal conversation the child was opening to expand into letting the child know. It sounds like your daughter is making similar observations, noticing how she is different, etc., that can be used as a starting point. From there, most of us have discussed the condition as having pro's and con's, burdens and gifts, that it is a brain working differently, and so on.

As for some of the current problems your daughter is facing with organization, my son, also 12, faces the same, and we pick up the slack for him quite a bit. One goal is to go through his binder with him at least once a week and clean it up. Every day we look over his homework assignments with him to make sure he hasn't missed or misunderstood anything. For that, we are lucky that all his current teachers are in the habit of posting daily to a system called School Loop, and I can log in to see what the assingments are. If your school doesn't have something like this, you can request that the teachers email you directly. Even NT kids this age can have issues with tracking assingments, which is why my son's school is so adamant about using School Loop. Imagine piling AS on top ... while it is important to keep teaching the organizational skills, she can't be expected to be able to apply them consistently yet, she just isn't developmentally ready (AS kids are often a few years behind in certain maturity skills, and while executive function skills may always be an issue, for now I think it helps to assume she can learn and improve, but will need time and assistance, as the expectations are always going to be moving ahead of her ability).

Welcome to WP and good luck with your wonderful daughter. We have an adult AS member here who is a professional artist. Maybe your daughter will be one someday, too

To WrongPlanet!! !

Thank you to you all for your comments and advice. It is really reassuring to read that most of the suggestions that you give I am already applying so at least now I know that I am heading in the right direction.

My mum reminded me recently of a really difficult time she had with my brother. He was not AS but was a very moody teenager. They had a horrible relationship throughout the 70's because my mum pushed him to do the things with his life that she knew would make his life easier as an adult. Sadly he died when he was 33 but before he did he called my mum one day to say thank you for being like that with him as he would not have the life he was currently enjoying if she had not encouraged him to stick at things. Like the cliche says 'it's the hardest thing in the world to do the right thing by your kids'.

Welcome to the forums. I hope you find much useful information here. If you have not yet done so, you may want to spend time reading other posts on this forum (mine are the best ) Your daughter is not the only child with AS, and you may find that the answers and information provided in other threads help you to better understand her.

Also, If you haven't done so already, then I suggest that you tell your child about AS as soon as practical. Many parents tend to assume that this is some highly critical all important event which must be perfect or else it will destroy everything. In reality thats not the case. Sure, getting a first impression done well does help things, but its not as though your daughter will move out and you will never get another chance if things go poorly. Just tell your daughter that you have something important you wish to discuss with her after dinner. Then when dinner is over, get her a nice bowl of ice cream (or pie), and discuss AS over dessert. It doesn't need to be some major production, just a mature and open conversation.

As for how you present asperger's syndrome, dont tell her about it like she has some disease. Your conversation should NOT go like this. "I was doing some research into why you act so weird, and I found out about something called Asperger's Syndrome. I am afraid that you have a neurological abnormality which makes you think wrong. Don't worry, I still love you, despite you being weird. I am going to try and get you help so you can get fixed." That is an example of the wrong way to do it. You basically just insulted her and told her that the way her brain works is inferior. Try to avoid that.

Instead, your conversation probably should go something more like this. "You have probably noticed that you are a bit different then your other classmates. You may have been wondering why this is, and as such I decided I should share the information I have, to help you better understand things. You see, everybody's brain works differently, no two people think exactly alike. But for the most part, the majority of people tend to think in a similar fashion. There is a small subset of people who have a condition called Asperger's syndrome who don't think in a typical fashion. It's not as though they are mentally ill or anything, they just happen to process information in a different way, which causes them to think differently then most people. Several key figures throughout history have had this condition, such as Issac Newton, and Bill gates. From what I have seen, I think you might also have Asperger's Syndrome. Obviously you are a very complex and unique person, and your entire thought process cannot be explain with a simple label, but I do think that looking into the condition, and perhaps thinking about how it affects you might help to explain some things."

At that point you can go into a more detailed discussion about what the condition is, what it entails, and perhaps give her some reading material such as Tony Attwood's "A Complete Guide to Asperger's Syndrome" (good book). I would also suggest that you give her a link to this website and encourage her to log on and post if she want's to talk to other people like her. Believe me when I tell you that it is an enormous relief to finally find out that you are not some random freak, and there are actually other people like you. It is hard to explain it exactly, but for somebody who has lived their entire lives not fitting in to suddenly find some place where they fit in is an amazing experience. So please, do tell your daughter as soon as possible, more for her own benefit then for yours.

Also, I feel that I should mention this. I don't know what parenting style you use with your daughter (and I dont mean to critique your methods), but your last comment about pushing your child to do things which makes her adult life easier might be taken the wrong way. I have no problem with you helping, encouraging, and guiding your child so she can learn independence skills. Having her do things like make dinner now so she can learn to cook for herself is a great idea. However, make sure that your daughter is learning these things and making progress in important areas because she understands the need for learning the skills and is a willing participant. Getting your daughter to cook via threats, and nagging may teach her how to cook, but it will not work out well for the relationship in the long run.

There is a saying that it is better to work WITH your child rather then AT them. Imposing arbitrary rules, deadlines, chores, and demands on your child in attempt to teach them skills is working at your child. Talking with them, explaining things to them, and getting them to understand why the rules are the way they are, and what purpose they serve is working with your child. If you want your children to become mature adults then you must treat them like mature people and have mature conversations with them.

It was actually my mother who pushed my brother to do the things he didn't want to. Luckily for him things turned out well. With my daughter everything has to be explained. However sometimes it is difficult to find a path of persuasion with someone who is not only AS but a pre-teen too.

I loved the description you gave of AS as a possible way of explaining it to her. I have all of those things in my head that I want to say but don't want to make a mess of it even though I do realise that it doesn't really have to be a huge event.

the ice cream is a good idea! would work for me. except now it is me telling my parents on the fly. haha.

i am sure you will work it out for yourself. she sounds like a great kid. mozol tov!

She is a great kid, in fact she's fantastic. Thanks

You said "she herself is realising that there are differences with her and has been asking questions about other children we know with autism. I don't want this to be a huge blow for her as I feel that the qualities that her 'aspie-ness' brings to her are what will essentially carry her through life and make her a happy and successful adult but I only get one chance at doing this right.'

Tate has known for a long time he was different. I would ask him why he did something like(why he laid down on the bleechers when all of the kids were stomping, I had expected him to say he was scared but instead he said " mom some kids are different and I am just different") How he came to know his diagnosis... He was noticing the traits of other friends with aspergers and seeing they were like him. I told him that those kids had aspergers. We would discuss them and how to be good friends to them and how they loved certian things and other things upset them.. I was mostly tellinng him because he is a sensory seeker as well as a sensory avioder and he is hard for some aspies to take since he switches so fast and I wanted him to give them a break and see that they got upset also so they could be friends. One day after many such discussions he told me he had aspergers. I said you are right I think you do too. He has been fine with it ever since it was like a relief to know wht he struggles. He will say I am not trying to make you mad I have Aspergers and I cannot always help it.

The most important thing is that you love, and accept her as she is. Her AS isn't going away, any time soon, so you must love and embrace everything about her, "Warts and all."