How to get extended family to understand

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My daughter, age 12, has not yet been diagnosed. Her PCP has referred her for an evaluation, and I expect she will get a diagnosis of Aspergers.

I have always known that she is "different". She couldn't sit still to watch 5 minutes of TV until she was 6 or so. She had to learn it wasn't appropriate to run and hug every person she saw, or tell the checkout person at the market "I love you" with the exuberance only a 3 yr old can show. She tripped over her own feet, couldn't carry her own plate to the front room without dropping it til she was 9, and would bump into the couch every time she passed it. I still cannot give her more than 2 step directions unless I want her to forget everything she's supposed to do. She rarely has friends, and often doesn't really notice that she doesn't- though she's becoming more aware now. She gets into something and doesn't let it go. A couple years ago she got really into Greek mythology. She read every book on the subject in both the kids and adult section in the library, and when we moved to a new city did the same with that library. She is so creative! She has always loved drawing. As a small child she would get so angry and frustrated when she couldn't draw what was in her head onto the paper. So many times she would have tantrums because of this.

I don't want to seem like I feel negatively about my daughter- I love her so much and can't imagine her being any other way than how she is.

A pressing problem I will have to soon face- trying to get my extended family to understand my daughter, and accept her as she is.

What I hear from them when I try to explain stuff:
- you need to quit letting her get away with so much
- she's just pulling the wool over your eyes
- there is nothing wrong with her
- why are trying to find something wrong with her
- you need to put her in school, thats why she has so much trouble socially (we homeschool)
- you're just making excuses for her

I get so frustrated. I am not a passive parent. I'm quite strict actually. What I don't do though is punish her for saying something rude when I can tell she didn't mean to be rude- it just came out that way. I let her wear clothes she is comfortable in. I make sure she has a space and time for her "alone time" (when she paces or walks in circles making a particular sound).

I want my family to stop being so hostile towards her, and to understand that she isn't bad, misbehaving, being defiant, or rude when she forgets what they asked her to get out of the kitchen, she tells them what she really thinks when they ask, she trips over a pebble and drops her plate, makes noises when she eats, or plugs her ears, hides if possible, and cries when there is really loud noise like a baby crying or adult yelling.

Any suggestions? Sorry for the long post, just feeling particularly frustrated tonight.

I really wish I had advice for you, but I am dealing with the same thing. My son is only 5, so I think some in my family just chalk some of his behavior up to his age. I just wanted to let you know that you are not alone, and it sounds like you are a wonderful and loving parent.

If she does get a diagnosis, maybe you can find some simple reading material on it for your family to read.

I think you will get lots of information from other posters on here with older children, so I am glad that you found Wrong Planet!

Best wishes to you and your family!

It's hard, I know. A diagnosis does help some; I gave my mom A Parent's Guide to Asperger Syndrom and High Functioning Autism to read and she actually apologized to me for not having "gotten it" before.

I'm not sure what to advise, except perhaps to keep saying things like "she's doing her best" and "we're handling the situation as we think best." Miss Manners generally advises not engaging with people who are being rude, just pick a line and stick with it.

Your daughter sounds somewhat like mine.

I also have problems with extended family understanding, even when my brother has AS as well (but doesn't acknowledge it).

The only thing I have been able to do to help in this area is to become strong and solid in my own perspective of my parenting skills. That's not always the case, especially during "difficult times" when I feel I need their support. However, when I feel strong and secure in my own understanding of my daughter, what my extended family "believes" is not that important. Yes, I would like them to accept her the way she is and accept my parenting the way I approach it, but you can't make others think/feel differently. Once I let go of the need to have them accept me/her I felt much better about things.

Now, when I see frustration in the interactions between my daughter and family members I graciously leave the situation. I don't allow my daughter to spend the night with anyone who doesn't "get her". As long as I am present and can be the "go between" things are mostly fine and I can protect my daughter from abusive interaction with people who fail to "get it".

I'm right there with you. If you go back, I have a few threads about this very subject. The crap just hit the fan with my brother-in-law and his family. Unfortunately, this time it got ugly. They just do not understand. They think that because my son is smart, he surely must understand. They believe he is able to manipulate the situation and that it is not a lack of understanding on his part but rather it is willful. It's a bummer but we finally had to stand up for our son.

Good luck...
Jess

I think having the diagnosis will help a lot. I was in the same position when my eldest was younger. We homeschooled at that time and people didn't know if his differences were because of parenting or something else. He's been in public school for several years now (I now have to work) and still has Aspergers.

I recommend just being patient and understanding with them. If homeschooling is different to them it is a logical thing to blame. They're wrong, but it does make a little sense if you don't know anything about homeschooling or Asperger's. Thankfully for your child, you know enough about those things to make wise choices for your child.

I'm in very much the same situation. My daughter is somewhat similar to yours (except for the fact that she won't hug me, let alone a stranger, and she wouldn't dare express feelings of love). Anyway, I don't know where to begin telling family either. We homeschool too, and it seems like that's always the first thing for people to blame "social-incorrectness" on. The truth is, homeschooling is probably one of the main reasons why my daughter gets along as good as she does! I don't have any answers, but you are not alone!

She does sound wonderfully AS

If you have a family with some level of communicatioin and respect, this is the stance I'd try:

I understand that you see my daughter's behavior differently than I do, but I am going to have to ask you to accept and respect my judgement on it. I'm not trying to make there be anything "wrong" with her, but I do want to accept her exactly as she was made, and not force her to be something she is not. I spend a lot of time with her, and I've challenged myself over and over on every question anyone could ever raise, but I come back to the same conclusion. I realize you don't see what I see, and I'm not asking you to swallow it hook, line and sinker, but I AM asking you to respect my right to raise her as I believe best, and to give me some credit for maybe knowing something about her that you do not, out of sheer time spent together if nothing else. Just respect that I've thought this all through quite carefully and, thus, allow me to use my judgement. That is what people who love and respect each other do.

I know that sounds a little simplistic, but in my experience it's really hard to "get" family to understand; they have to figure it out from specific interactions with the child that you can't actually set up, and wouldn't want to. My sister finally "got" it after my son had a meltdown when we were all mini-golfing and I asked her to take him back with her to her place so that the others could continue to play. It was during that one on one time at her place that she saw and understood how truly upset he was, and how upset he was that he was upset, and finally figured out that nothing I could have done could have "snapped" him out of it.

So, I take the other angle, that I'm the mom and if someone has known me for a long time, they must also know that I really do think things out. And, well, there is no disputing that I have the right to raise my kids the way I want to, and they aren't going to nag me into doing something different, so it's best we all just get onto an "agree to disagree" platform as fast as possible.

The reply from Chaos42 is exactly where my family is at right now, too, only with my mother-in-law. She challenges our parenting at every turn instead of making an effort to understand. That line between knowing what our kids need to learn in order to survive in this world and also knowing how much they deserve to just be themselves is a hard one to walk. The people around you who choose to become educated will get to come along on the adventure and discover what wonderful individuals these kids are; the rest will end up ruining relationships that didn't have to be ruined, and that's on them. They're the ones losing out. You're right to defend your daughter and stand by her. I've taken to having extra Asperger books and copies of articles sitting around the house that I can grab and give to people when they get in my face. It's sometimes very hard not to get emotional when you're trying to make people understand what's going on, so having them read something before you try to explain how it relates to your daughter might help.

My son was diagnosed - first with Asperger's, now PDD-NOS, but I realize more and more that Aspergers is probably more accurate than I had realized. I just had a tearful session with his therapist over feeling that most parents think the problem is really us and that we "did" something to deserve the outbursts we deal with regularly.

It doesn't help that my son is sometimes capable of acting completely NT (well, NT with a bit of charming precociousness; he's going to be 10 and just read 3 Shakespeare plays) the first several times he meets someone, or when we leave him for a playdate - and then completely melts down, complete with screaming, biting, kicking, hitting the moment we show up to get him. (Rationally, I realize that the opposite would be far worse.)

This went so far with my SIL that she pulled me aside at a family gathering and said "you know, maybe if you put him on medication, you wouldn't have to yell at him all the time." We are now banned from visiting that side of the family because my son blurted that Santa Claus doesn't exist, and "ruined" Christmas. Although they know we have been seeking help for our son since he first started showing symptoms at about age 3, they don't seem to understand that, while we certainly aren't perfect parents, it's not entirely about parenting.

Thank you all for your support and advice!! A day after posting this I had to take a break from the internet so haven't been able to respond.

At this point my daughter has a de facto diagnosis of Autism Spectrum Disorder. Her primary care doctor has put this in writing, and her neuropsychologist who evaluated her "mirror movements" said the movements were part of ASD for her. Eventually I hope to save enough for DD to see the right specialist, but her doctor said right now what we have is good enough.

I've told most of my family about DD's ASD with mixed reactions. I was thrilled today when my sister said she took pics of lots of ASD/Aspergers books she found at the bookstore so I could look them up! Everyone else though... well, they'll just have to get over themselves.

I plan on having a conversation with family as suggested by DW, and regardless of their reaction I'll know that I did all I could to inform in a respectful way.

I've already had to limit time my DD spends with certain family members because they stress her out too much.

I think my DD is wonderful, just the way she is! It is a challenge balancing between enjoying who she is as a person and helping her get along in the world, especially now that she's a teenager (she turned 13 last month!).

It's amazing how even very intelligent and educated people can be so callous and clueless. We live with my mother in law and she's a pscyhiatrist and neurologist. (retired). She was educated and practiced in Croatia (part of Yugoslavia at the time). She was born in 1935, studied from 1953 to become a doctor, and by 1970 she had her double specialties. Yet, she couldn't tell and wouldn't even entertain the thought that our oldest son has ADHD (and he's like off the charst ADHD for testing) and while she knew there was something not quite right with Henry, had NO CLUE about autism and still says the stupidest things.

Fortunately, for most others in the family, they get it - maybe too much so - like feeling sorry for us and for him, but maybe in a way that's better as they'll have lower expectations for him and will be pleasantly surprised when they watch him blossom.

I think part of the reason people balk at the idea of there being something WRONG is that they don't want to take any of the blame themselves... what, my genes are faulty? Much easier to just blame the parent.

*****SIGH*****

Been there, done that with my in laws. Nothing is more frustrating than parenting to the best of your ability and hearing that it's not good enough. Especially from people who have absolutely zero understanding of what you're dealing with. My in-laws were absolutely in denial about A's Asperger's, though over the years they've come to understand that *something* isn't quite typical. We told them about the diagnosis, the specialists, the therapists, the behaviors, etc. Their response? "Those people just want you to keep coming back so they can keep up their businesses." Really. (this coming from a retired OB/GYN -- wonder if he ran his practice that way.) I sent them articles: "Nope, that doesn't sound like A -- he WANTS play with other kids." How about his inability to communicate directly and inability (sometimes) to answer simple questions? "All kids do that." Four years later, they are starting to come around but still don't seem willing to accept the situation.

Is your family willing to trust you? If you tell them your daughter has a diagnosis, will they be able to go with that and learn about it? Or are they the types to insist they are right at all costs (sounds like an Aspie, LOL) and come up with reasons to justify their own POV? My parents did not understand about autism/asperger's at all, but they trust me to do my homework and be thorough. They still don't understand all of his behaviors, but they are willing to listen and believe me when I tell them it has to do with his brain and suggest alternate ways to relate to him. Makes a huge difference.

Here's a trick I've used in the past when dealing with my own illness, might work for you too. If I get any flack from anyone about what I'm doing or meds I'm taking, I tell that person to feel free to call the Dr. directly. Either they will and get it out of their system with a person they likely respect and will treat with some professionalism, or they won't. Either way, they are out of your hair.

Good luck,

Once you get the diagnosis, many of your extended family member's treatment and view towards her will change over night, but not until you have the 'label'. Now it might be 'what a brat' or 'she's such a cappy parent' but once you have an autism diagnosis it will suddenly be 'oooohhhhh...poor you! I never knew!'

bjtao - that's why recently I was a little torqued with my mother in law. She hadn't told anyone - even those (family) who would put down Henry for his behavior. I 'guess' maybe she felt it wasn't her place, but as soon as I talked with this family member, she did have a sort of "ah-ah" moment (as her good friend's son has autism. ). I worry a bit about my mother in law trying to hide that her grandson has something wrong with him. Good grief... what's better? Letting everyone think the worst? or that he has a disorder we are working with him on?

Having read this I am really glad that I have actually never had my 17 yr old son diagnosed. I am fortunate that my extended family have always accepted and loved all my children just as they are, 'quirks' and all. Really lucky I guess. My h has had the most difficulty but even he seems to be finally working it out, and the change in our son in this past few months is amazing. Just feeling totally accepted by the ppl he loves the most (me and his dad) has settled him so much more than I could have hoped for. Hugs would be really nice but you can't have everything. I know he would if he could.

I guess I would just suggest telling everyone what you KNOW to be true about her, and that you expect nothing but love and support from them for her and for you. It's what families are supposed to do. After that, if they don't, then you just keep on doing what you know to be right for HER, she shouldn't have to be with them if they can't treat her as she is with respect, and they'll just have to miss out on really knowing her and spending time with her and sharing her life - which is going to be wonderful !

Good luck. You keep on with being a wonderful mum.

magicmum