Frustrated, when family doesn't believe your child is asperg

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Hi, I just joined today, And I'm feeling really down. My 20 year old daughter was diagnosed Aspergers when she was ten. with severe language and learning disorders.

She is not typical Aspergers though...well so far as society understands. From my experience, the public expect someone with aspergers to be odd, but brilliant.

My beautiful girl had trouble with even the most basic of functions, she has no ability to make quick decisions, and learning self care skills is really hard,,,ive been trying to teach her to do dishes, for over ten years with not much success...I mean she is willing and tries...but those dishes always need to be rewashed. even the diswasher is beyond her..

Learning to drive is something she cant do..she barely made it through school...her one thing is drawing..she is talented, loves to draw dragons. loves animae.

I grieve for her for the things she misses out on...but what hurts the most, is family that my own brother, sister and parents, dont see us often, and only see her for short bursts and of course, because I spent thousands on speech therapy when she was young...she appears normal...in the very limited time others spend with her.


what gets me...Is that im finding loads of stuff on straight aspergers..but little on aspergers where the person also has very limited IQ and or a disorder that simply prevents anything getting through.

I am ready to care for her for as long as I live, but scared for when im not around, her three younger siblings adore her and she them...

IM sorry if im rambling, and my spelling and grammer are poor...I live exausted, my husband is disabled, and I have my aspie girl and three small children, and the last thing I need is for my own family to treat me as If im holding her back,,,and doesnt understand why she cant learn to drive etc...

she is definately aspergers but not typical so many people just dont want to understand.

Sounds like she might have a general learning disability as well. If that is her primary problem and you guys are calling it Asperger's I would not agree with it either. Of course she can have both, but that is not necessarily something people understand without you telling them.

she was diagnosed aspergers, with a severe learning and language disorder.

she has alot of the typical aspie traits, its just that her language and learning disorder, seem to short circuit her ability to learn and function. does that make sense.

she is very obsessive about several things, cant handle change at all...we moved house a few weeks ago....it was a rough process getting her ready for that. packing etc. was very stressful for her, but we made it and she has finally resettled.

our saving grace is her best friend. a very loving kind and considerate girl a few years younger than her. but she is a very sensible girl, and very capable, who is able to care for my miss on occasion so miss can go to the movies with her, or shopping or stays home with her so we can go and deal with the outside world.

the thing she most has trouble with is following instructions, and reaction..

example...most of us on seeing and hearing a kettle on the stove whistling away cause its boiling. would turn off the stove, she will just panic.

we tried to teach her how to boil the kettle, but she cant remember to hold the knob down for the gas to light, and so nearly blew us up lol...and the electric kettle didnt always turn itself off, and she just left it boiling,,,couldnt think what to do..

things like that, little to none quick response ability, and cant retain things, even after learning them every day for years.

so she loves drawing, so I keep her constantly supplied with the things she finds joy in..I keep trying to teach her stuff, in the hopes that one day she will retain enough to stay alive if something happens to me.

one big problem is that she cannot wake up by herself...simply if you do not physically wake her and get her up...she stays asleep. Ive experimentent. and she slept for 26 hours straight....I didnt let it go further I was afraid for her well being,,,,so I made her get up and got lots of fluid into her and food...It has been suggested by the doctors she might also have Kleine-Levin Syndrome but the testing for that is very difficult and there is no treatment anyway. So I simply get her up same time every day, and try to help her stay awake..

but even if the Doctors wanted to give her a different label the problem with my family , is they consider there is nothing wrong and she should be able to do anything..thats the hard bit.

Meh... Does it really matter which she has? Her traits have been defined; she's on the spectrum; she's getting help. Why bother with semantics?

I don't think you can do anything with your family. Either they listen to you or they don't. I've got a mom who's a lot like that, because she refuses to believe I'm disabled, even as I'm struggling to keep my independent living arrangements. It's very frustrating, very invalidating, because it's like she's rejecting this thing which is a very big part of my life, part of my identity. Ironically, she often flips to the opposite extreme, saying that I ought to come home and live with her, or live in an assisted living facility nearby. She can't understand that a person can be disabled and independent, because she can't understand that disability can be anything other than complete incompetence.

As time goes on I'm having to face the fact that I'll probably never get my mo to understand my situation. I'll probably never get her to see that a disability can be real without being obvious and extreme. I'll probably never get her to say, "Yeah, I'm sorry, I was wrong not to get you evaluated when you were a kid; I was wrong to keep you out of school; I was wrong to keep you away from the doctor," because every time I try to explain, she agrees with me and then in the next breath denies that I have any sort of disability at all.

The sad fact is that you may never convince your family that your daughter is disabled. They may never give you that assurance or support. But you can live without that. You most likely love your family and care deeply what they think, but you're an adult, and you're on your own. For that matter, your daughter is an adult too. The two of you would probably be better off just forgetting about what others think, and taking on the world together. Be a role model for her: Show her that just as you stand on your own two feet regardless of what your family thinks, she can learn to stand on her own two feet, too. Whether she'll be completely independent is anybody's guess, but like any human being she'll learn things all her life; and one of the best things for an autistic person to learn is that asking for help doesn't mean you lose control--it just means that someone else does something for you. You're the one who's doing the asking; you're an active agent, not a passive, compliant patient. It can be difficult to assert your independence and self-determination when you need assistance, especially daily assistance. Show her that you are your own person, and that your family does not determine what you do, so that she knows it's possible and has an example of how it's done.

I have a suggestion. I don't know where you are but the DSM is what they use in the US for diagnosis standards.. They are coming out with with a new version of the DSM which will eliminate Aspergers and put people who qualify (a different debate) under Autism. Maybe just say Autism? The stereotypes are different, not that it is good that people in your family are judging based on that. But maybe that will make them understand better.

that helped more than you can imagine. thankyou, all of you..seems I may have finally found somewhere that understands.

<< Moved from GAD to Parents' Discussion, by mod - hopefully get more replies here. >>

It sounds like you might have an "everything is rainbows and roses" family. They don't see things that don't meet their vision because they don't want to.

Having an autistic neice or grandchild would mean that something extra could be required of them someday. Denial is much easier.

Face it, despite how good her sppech is, they HAVE to have seen the little things. But they chose to brush it off. Some families do that almost like a religion; just keep sweeping it all under the rug, that's how it is supposed to be done! (To them)

My family, who we live close to, did eventually accept my son's diagnosis. It took a few years. My husband's family, who we see once a year, just pretends nothing is different about him. They don't say that they don't believe us, they just take out the broom and sweep our references out of their conscious, and then act in ways that make it obvious they don't believe us. The drama that gets attention is theirs; any issues we face can't possibly be as challenging. Selfish, really, but because the kids adore their cousins we ew and aw over their problems and let them sweep ours away. I have enough people who care and understand; I can survive without them.

You can't ask people to be more than they are.

But if you don't have other people to fill in that gap, it is a lot more difficult. Maybe that is what to do next: fill in that gap some other way.

I am sorry it has been so hard for you. With all you have on your plate, it would seem only fair to get a little understanding from those who love you. But life isn't fair, and I wish you all the best in finding a silver lining somewhere else.

Just wanted to let you know that I have the same problem with my husband's parents. He was diagnosed 5 years ago and have had plenty of time to read, think, ask questions, etc. it's not clear to me what's going through their heads, but like you they see him a few times a year for short periods of time and because he's so high functioning he can pass as long as they R with us. They don't see him under stress or filled with fear, and somehow they have managed to come up with an excuse for every odd behavior. They also think our doctor is a con man who just wants our business.

It's not easy for me, I feel very insulted with their attitude, especially when they have suggested that it's our fault. Since its my husband's parents and not mine, I just don't talked about it with them. If they corner me, and they have, I just say he has Asperger's and get out as fast as I can. My husband will not address this with them, so we are in a holding pattern. He's starting to see where I'm coming from and hopefully he will be able to address it soon.

Anyway, just wanted to say I understand. It sucks to not feel supported by people close to you. Do you have a supportive community somewhere?

Ditto here! Except it's my son's Father and his entire family that denies he is on the spectrum. He blames all of my son's issues on me and my "bad parenting." My ex has no interest in researching our son's condition and actively sabotages my son's treatment. We're heading to court soon... At least with extended family, you can shield your child from them. With a parent, it's much more difficult.

Im not sure how she is going to cope when the last of her siblings her little brother starts school next year...she spends so much time with him, there two peas in a pod, although to this point her brother appears to be NT they are so close, she is very close to her sisters as well but im unsure how she will cope without him there, he seems to be able to draw her out of herself alot. like he is her little rope attaching her to the outside.

nothing more from my brother, no message of introspection, of consideration that he may have jumped to conclusions.

ah well, I guess when you are so very good at absolutely ruddy every jolly thing you have ever tried to do....its hard to imagine someone who finds it difficult to do anything. I suppose he just cant imagine not being able to interpret the world or any of the information coming at you.

Hi, Im a new member and my daughter is being "investigated" but we are no where near a conclusion yet so cant really suggest much here. I am currently getting very frustrated with family and friends who are convinced she is fine and theres nothing in it, "all kids can be a bit naughty sometimes", "my child does that all the time" and family thinking she is perfect and referring to her possessively as if Im rejecting her and making excuses for my own bad parenting, well thats how I feel anyway. They seem to think Im making it up and being really critical of everything she does and says when I should just leave it. They are making me feel like Im insulting their genes! All I want is for my little girl to be happy, at the moment she isnt and neither am I. They are all happy to ignore the problem but it is still there. I am the one that sees her all day every day and have done since the day she was born. I am the only one she completely relaxes around. Ive pretty much only got my Mother who agrees with me, its even driving a bit of a wedge between me and my husband. I have also read that Aspergers in girls can be missed as little girls cover for eachother and they mimic eachother, if they seem ok its because they are acting, but as I said all I know so far is what Ive read and theres a lot of stuff out there that varies.

Part of my problem is that the more I look back through the family history, as I have had to do with Drs, the more signs I see in them!! ! I wonder if any of your family suffer with similar anxieties etc and this is making them reflect on themselves and therefore deny it? I also have an ex teacher of children with learning difficulties in the family so if this really did exist they would know, they are the expert and they would have spotted it!

Because Im only at the very begining of the journey to a diagnosis Im keeping it quiet, doing it all by myself (not keeping it a secret, just not going on about it) and keeping out of their way. If a diagnosis comes through and they ask and still dont believe me I dont know what I will do! Sometimes I consider dropping my daughter off for a week or two and see how they bloody well cope! If they cant see it, like you say its because you have worked closely with her and helped her to overcome things and keep things hidden, so you cant be doing too bad! Good luck, I hope they can come round at some point before it drives you appart.

my father is convinced he is aspergers, and he might be, but he bases that mostly on not liking crowds, of liking to be by himself and having a history of depression,

he has none of the obsessive traights found in nearly all aspies no stimming at all,,,

yet he is very critical, usually behind your back, of how I deal with my daughters difficulties, he has all the answers apparently even though he has done no research, he just picked up on a few things ive talked about aspergers, and decided its a good crutch to blame all of his woes on.

my mother is the most accepting of all of them,,,but push push pushes, me to send my daughter to this and that, to force her into situations, like a work group for the disabled, that I know she would hate, that would send her deep inside herself, and make her so anxious id have to be concerned about suicide....she cant accept that Im working each day to try and teach her life skills, I got her through high school, all the way, even though her scores were not enough to get her a job, but she was the first to actually go all the way through high school. she had of course alot of support with special ed classes, and it made sure she could be with her friends every day,

now her joy is to be home, where she feels safe, where the anxiety is the least, learing how to care for herself, and spend most of her time drawing, mostly dragons...I will try and insert one of her pictures. I feel at age 20 she will be 21 this year, it is time for her to settle into a calm life, rather than be pushed from one indignity to the next in the NTs obession with trying to make her normal.

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Wow thats a really nice drawing, she obviously enjoys doing it! It really sounds like you are doing your best for her. I think when we have kids, what used to be our immediate family (parents and siblings) get pushed back a bit and our partner and children become our closest family, quite rightly. I know thats happened with both my own family and my in-laws. I can imagine when this happens to me I wont like it much and may not like being a Grandmother figure instead of a mother so I do try to involve them as much as I can. But my daughter is MY daughter before she is their granddaughter or neice and I know her well enough to know what she needs and wants until she can do that for herself (assuming that day comes) then I can only observe and will have to take a back seat.

If shes happy at home with you drawing and you are happy with that then I dont see a problem! Sounds like you are doing a great job, like I said in my last post all I want is for my little girl to be happy and if theres somethign there an early diagnosis is the best thing to help her get through the struggles to come.