Need advice/comments from parents of kids w/ Asperger's...

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I am an aunt of a 9 year niece with Asperger's and would love any advice or comments....
I am concerned about her mother (my sister) who seems almost to be defined by her daughter's Asperger's. She is constantly telling people 'my daughter is autistic', it always is one of the main conversations around their house, and is always telling her daughter things like "oh look honey, that person is autistic like you" (when someone is one tv, or other kids they know etc)
It is an all consuming issue for my sister - but seems to be to the detriment of her daughter who doesn't seem to be devloping any identity other than 'the autistic kid' or 'the kid with asperger's'. Every mistake she makes, every shortcoming she may have, every temper tamtrum is written off immediately as 'her asperger's' without much attempt to determine why she may be having difficulties... think I'm rambling - but to make a long story short - it just seems to be consuming every waking moment of their life. It doesn't seem healthy.
I'd love to try to help my sister try to get some healthier perspective, but she can be very defensive when discussing her daughter.. but I truly think my niece is not making the progress she could be with such an almost suffocatingly defined environment. Maybe I'm way off base of out of line... I don't know!
Please--- any ideas, observations, or advice would be welcomed!

Hmm. How long has this been going on? I know the first year my daughter was diagnosed I absolutely could think of nothing else. I got so tired of thinking about her problems and begged God to make me think about something else, but I could not shift off the shock for over a year. Almost any new enthusiasm seems all encompassing at first until familiarity and time slot it into the right part of life. It may wear off on its own. One hopes so for the sake of the little girl.

Well, I would say.... tread carefully. I am in the "fairly new to this" boat (son is 6 with Asperger's). And I need to talk about it with folks, a lot, still. It is a big adjustment for a parent.

Now, as a parent, of an Aspie or NT, advice from relatives of the holier-than-thou variety (even if it's simply perceived that way, if not intended) can be unwelcome. I know my mother takes *every* opportunity to tell me how I'm doing everything wrong. When my son comes back from her house, he's usually completely unhinged for a day or so afterwards, usually because she has really no rules at all. But I digress.

Bottom line is, your sister is her mom. She lives with her, deals with teachers and psychs comments, breathes her children every single day and sees the patterns. You don't. She may just be needing to talk about stuff to get it off her chest or because she's still unsure how to do it herself. Also, is her behavior toward her daughter seeming to try to "go by the book"? I can say I've bought 3 books at this point... and I've read lots of conflicting ideas about how best to treat and react to his behaviors (everything from a "leave him be" attitude, to a "set lots of rules" attitude, to a "no punishment" attitude, etc etc etc.). It's like I can't really go with my gut anymore, which sucks.

Hopefully at some point, both she and I will just get comfortable with it, and it won't feel like it's learning to be a mom again anymore.

(Don't get me wrong, I'm not meaning to imply that she doesn't need to adjust, or that you are mean or anything, not at all - it's just hitting a nerve because I am somewhat in the same boat - I'm not "milking" anything for attention by any stretch, and I just wonder if we're villifying her without really knowing all the facts.)

Eh. We're going through our daughter's evaluation right now and it is definitely forefront in my mind. But the emphasis here is on who she is, not what she has. I don't know what kind of relationship you have with your sister, but I would try to calmly talk to her about this. Remind her that there are special, wonderful qualities about each child as a person, and that she needs to help her daughter realize those qualities to establish who she is. The child needs to know she exists outside of Aspeger's.

Hi! We are in the screening process at the moment, (I have been told the doc's are leaning towards aspergers) I myself am finding the whole thing all consumming, and Im sure my family and friends are sick to death of hearing about it all. Part of it all for me is because my son was origanally diagnosed with adhd so it came as a shock when his pead asked for the screening to take place. I didnt know all that much about autism/aspergers, but the more I read particullay from here wp (real stories) the more I notice things. I knew my son was having big issues in some areas particulary social stuff, people would get cross with him and pass judgement on him, my parenting skills have been judged. I was and am doing all I can to minimise his emotional meltdowns and sheild him from very critical unsupportive people. I guess now with the screening happening and my being hyper aware of various behaviours (trust me Im getting a new understanding everyday thanks to this board) I want the people screening my son to see all I see. I want the best possible outcome for my kid, I want people to stop thinking he is in full control of everything he does and to have a little more understanding. I dont want to change him, I want acceptance. I want people to step into his world not expect him to blend into theirs, there will be time enough when he is older and better capable to blend. For now he is a child a very special child that needs alot of loving. So if Im screaming from the roof tops and telling people about my childs special qualities Im doing this because I want everyone to love him, accept him and appreciate him for who he is. It makes it harder because he looks so "normal". Im rambling and Im sorry but this topic struck a chord with me, big time. Your sister needs lots of reassurance, support and she is possibly scared of what the future may hold for her little girl. Listen to her. If she needs to talk send her here. The people here are fantastic. Good luck

Question; She says this stuff frequently to her daughter??? That's not good. It's called, "beating it into her head". One shouldn't do that about any trait.

Being consumed 24/7 with autism seems unpreventable. My husband complains to me that I'm like that. But don't say anything to my son about it because I don't want him to feel the stigma of "having something wrong". When he's old enough to know the difference, I'll be more candid. But we aren't going to "blame" everything on autism.

Your niece is going to have a very rough ride if that's all she is hearing about herself. Maybe you can ask your sister where she learned to say that all the time. Maybe you can find an analogy where you can explain how hurtful it may to identify a child with solely a diagnosis.

maybe ...if she can take a joke......you could liken it to telling a newly reformed alcohoholic~look, honey, he's an alcoholic ljust ike you !
it doesn't help to point out anyone's shortcomings over and over and over and over and over ............Aspergers and Autism are scary roads to travel with your child. and certainly, perhaps, your sister is just trying to make her daughter feel more comfortable with the idea that she's not the only one with aspergers. there are books that she could read that outline the accomplishments of people with aspergers, though, that would be a far better way to introduce her daughter to role models within the asperger community.

We never tell other people that our daugther is autistic. Why should we? People would only feel pity which isn't exactly in the best interest of her.

Thank you to all for your insights.

To answer a few questions, yes she does comment regularly to her daughter and others what the issues are - it IS her daughter's identity. Even her older daughter is always accutely aware of her mother's focus on the Asperger's and she is often put second since 'she doens't have problems' according to my sister. But now she has problems stemming from her sister having Asperger's and needing so much time spent with her. Very unfair. It has been a few years now since my niece was diagnosed and I have really not seen much improvement in my sisters state of mind. I do worry very much about her - stressing to the point of being physically ill, relationship with her husband declining rapidly, acting like a lost puppy when the kids are with their father, etc etc.

Nan, your comments did resonnate with me - I am worried that my sister is playing a bit of the martyr... bad for her, but much worse for her daughter. She has always been very attached to her kids (ie has never left them with a babysitter and they are 9 and 11) and has always held them way to close (I always thought to feed her emotional need) instead of encouraging their independance and abilities. Maybe the Aspergers diagnosis just fed right into those insecurities she has and gave her more reason to not give her kids confidence to function without her always around?

It's a very frustrating situation to watch. I did try to speak with my sister yesterday but she doesn't seem open to hearing other ideas or view points - she only talks to the doctor about it and no one else - not her ex (the father) not her current husband, not me, no one. So I finally suggested that she should think about going and talking to someone - not with her daughter, but for herself. Don't think she will. Boy... I could ramble on for ever about the issues, but I'm sure you've all been there in one way or another, so you know all it encompasses.

Thanks again for reading and commenting. Think I'll stick around here for a while and read some more posts on other issues - esp the teen years.... that will be interesting!

Aurea, my daughter diagnosis was changed from adhd to aspergers 3 yrs ago at age 14, and I am still telling people!
I feel it is helpful that people understand. Family members do need an education thru books, internet or counseling, and they do need to accept the diagnosis. I would not allow HR to go to a relative who is not willing to.
More important is that she has insight to what aspergers is. She knows her brain is wired differently which means sometimes doing things in another way than NTs to get the job done.
For me it was such a relief to finally get a diagnosis that fit. Dealing with her autism is still all consuming at times, I dont think it will ever not be. But it is what makes her who she is and that is not a bad thing. We are constantly amused and delighted by her. Yes she has outbursts and its a struggle to get her to do tasks. She does the opposite though with just as much emotion. She laughs with no inhibition, loud and pure. She is sweet and very honest.
So Justvisiting, your sister is probably feeling all the things Aurea wrote. One very important thing to me is that our home be a safe haven for our daughter, where she can be as autistic as she needs to be after a long day in the NT world. Have you done any research on apergers? You could be a big help to your sister and her family. And maybe you will find out a way to lessen the overwhelming feeling of trying to make everything right she might be going thru. good luck

You need to talk to your sister about what it means to have aspergers. At this rate that child is going to be perminatly messed up, obsessising over a reletively minor problem in such a way just isn't healthy. My mother, for example, would use my brothers diagnosis to coddle him from everything, whether it be his own actions, or using it to get him into jobs or whatever he wanted. With me it was the oppisite, she forced my into special ed classes, and would never leave the issue alone. Any problem I had she'd blame on AS, even the smallest things and it aggrivated me to no end.

While yes, it may be part of her identity having AS, it isn't her entire being. It's like a child with cancer, would you walk them around and say "Hi this is my kid, she has cancer" as though that was the only part of her identity that mattered? Would you constantly bring her things to remind her that she's different so that in no moment she'll ever feel secure about herself?

Justvisiting, a thought on your last post-
It is pretty important that Mom communicate with the family. Do the father and husband accept the aspergers and do they have insight on how to deal with an autistic child? Sometimes husbands have a very hard time accepting the diagnosis and refuse to do anything to support the mother.
As a mother of 5, I can say from experience that it is not easy having an Aspie for a sibling. Big Sis needs constant conversation and education to understand aspergers and why her sister gets different treatment. There are classes for kids with aspie siblings.
Its to both childrens benefit that things get worked out, because autism dosnt' go away- its just becomes a regular part of life.

I have big problems with referring to Aspergers as Autism.

Yes, I know it's on the spectrum but it's just giving the wrong impression to people who don't understand the term and they'll treat you differently.

(Apologies to autistic readers out there - I'm simply making the point that the label has been misused so much that it's not much good anymore).

I'm fiercely proud of my Asperger's condition and see it as a gift. Children should be encouraged to see it that way too.

One fantastic comment that my 7 year old came out with a few weeks ago (in response to being told that he'd asked a very clever question) was "that's because I have aspergers and I'm very clever".

That's the sort of attitude that should be encouraged in apsie kids.