I should know how to deal with this?

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I'm the sister of an Aspie (diagnosed at age 23)... with a 7 y/o Aspie niece (who also has SID)... and now my 3 1/2 year old has an initial diagnosis of Asperger's with Autistic tendencies.

My husband and I knew it was coming. Our oldest 2 kids (10 and 7) have known it was coming. We've seen the signs for quite a while. It's still a bit of a shock to have the diagnosis confirmed.

My mother is -not- being supportive. I'd rather hear "You're strong and smart. You can help her through this." instead of "You've dealt with your niece. This shouldn't be a problem. Why are you so upset?" in a snide tone of voice.

I know, in my head, that this isn't a "bad" thing... But my heart is hurting for now. I know that I can help guide my daughter to having a full and happy life. I'm just heart sore right now. I'll get over it and be the best advocate and teacher that I can be... I'd just like a little better support from my mom while I'm readjusting my thoughts about my youngest daughter.

Meanwhile, my daughter is quite content to sit beside me and watch "Mickey Mouse Clubhouse" while I do research online.

*sighs* I really do love my daughter...

That was kind of mean. Maybe she's got issues with the way she raised your sister? Getting a diagnosis has it's benefits, but doesn't mean it's going to be any easier.

My daughter never got a diagnosis, but I have suspected for years. The list of female Asperger's traits really sealed it. Mine is 18. I remember one summer she was spending her days at my supervisor's house, his wife did some day care. One day the wife said to me that she had told her husband that it was too bad I hadn't had more kids, so I could "have a normal one". I burst into tears and didn't stop crying for a good half hour. I suppose it hadn't occurred to me that my daughter was so obviously different, even though I knew she was. She was 7 or 8 at the time.

Oh, my, I understand those feelings. All of them.

I'm sorry, but I'm with your mother on this. It really annoys me to see parents talking about their child having AS as if they'd suddenly grown a hump on their back. It goes right along with all those Autism Speaks Public Disservice Ads that go on and on about how autism HUMILIATES parents by turning their kids into lunatic freaks.

AS is a handicap and one of the most frustrating aspects of that handicap is that it is invisible and most people can't understand the reality of something they can't see. That having been said, those of us who have it are just people like everybody else. Before the inclusion of AS in the Diagnostic Manual in 1994, Millions of us grew up, graduated school, held jobs, eked out careers and muddled through life only a little worse for the wear and had no idea why some things seemed more difficult for us than for the majority.

In other words, we didn't die from it, we didn't sprout antenna or grow scales, we didn't even need wheelchairs, much less rafts of counselors and therapists and pill-pushing psychologists to be able to function in the real world. I'm not saying that some help is not warranted or appreciated - its wonderful to have access to assistance when we do need it, and to be sure, sometimes we do.

Its just that wailing and gnashing of teeth over your child's diagnosis is rather insulting to her, as if there were something horribly DEFECTIVE about her, and there isn't. She has an organic brain dysfunction whose primary effect is a learning disability (not inability) involving social interaction. Chances are she'll be a bit awkward socially and likely rather introverted. That's pretty much it. There are other symptoms and behaviors that may or may not be evident, but they're mostly minor and will seem to others to be individual quirks - only you and she will ever have to know otherwise unless you choose to disclose. Its a little more complicated than say, Dyslexia, but no more life threatening.

Really, the most serious thing she'll have to deal with will be the depression that results from trying to interact and communicate with a world full of people whose thought processes are different than hers (especially since she may well be smarter than most of them). Its very frustrating and it can leave one extremely psychologically tired and exasperated. One gets used to it.

Take a chill pill, Mom - you're both gonna be okay.

I'm honestly not freaked by the diagnosis... Not at all. And I -know- that it just means that I'll get to be extra-involved in helping her adjust in social situations. It's not a head thing and it really has nothing to do with my daughter. It's more of a heart thing. It's not rational, and I know that I'll soon get over it, but it -is- there. To have my mother dismiss my current emotional state in such a cold manner (and you really would have had to hear the disdain in her voice to understand what I'm saying) hurt, because I expected a little more sensitivity at first.

I'm not saying that I wanted her to go "OMG! I am sooooo sorry, baby! You must feel just awful!", because I don't feel awful at all. I'm simply in a mental adjustment period. It happens. I'll be over it in less than 48 hours. But we just found out this morning that we were right... so we're a little overwhelmed right now.

I think I can relate to how you feel. Once I gave a voice to my thoughts that my son might be aspie, I had to readjust my thinking, and in the process mourn the loss at least a little bit of the boy I had envisioned my son to be in my head. Then I was ready to move on. When and if my son get a dx, I'm sure I'll cry again right before I fall in love with the amazing child I am privileged to call my own. I don't think there is anything wrong with doing that.

My sister has CP and I know my mom had to mourn the loss of the child she thought she had--the one who could walk and didn't have to struggle as much. But this isn't to insinuate that we ever felt sorry for my sister or ourselves. I think this is just part of the process when you find out your child is going to have a more challenging road ahead of them than what you previously expected.

I thought this was interesting because it may be one of the things you have to work with your daughter to overcome. She'll have those same mental adjustment periods - but they might last longer than the 48 hours and be more intense. Remember the emotion you're feeling now - maybe you can use the memory of what you're feeling now to understand her better during a meltdown.

Willard, I don't think she is heartsick out of any selfishness or preconceived ideas. I think what she knows is that her lovely daughter will have a more difficult time of life because of the condition and, well, a parent wants life to be a happy and easy experience for their child. Knowing that it won't be - even if that is because of faults in the world and not in the child - is a sad thing to integrate. I get sad for my son not because of him but because of the things he faces that I wish he didn't have to. Does that make any sense? I know there are parents there who come from a different place, and I know why you are defensive agaisnt that, but we really don't see that here; this isn't where those parents come to post.

To the OP, it would have been nice if your mom could have acknowledged or understood what you felt. Maybe she just never went through it herself, or maybe its so long ago she has forgotten. I have not forgotten. I know the tears I cry when the world can't see the brilliance in my son that I see, and wants to beat him down instead. That is a reality for our kids, and its the one we would all love to change. I am grateful that he is such a naturally happy child, so it isn't easy for the world to win against him, and I hope the same will be true for your daughter. Not all AS kids have that personal disposition, but it would be nice if they did. It helps so much.

Good point.

Hello,
Sorry about how your mom is acting. Having your niece diagnosed with AS is very different from having your daughter diagnosed with it. And no, AS is not the end of the world, but it does make parenting more of a challenge. Especially when all parenting advice is directed towards NT kids and the minute you ask about an AS kid you hear "I don't know about that" if they are honest or "it should still work" even though you've tried it and it doesn't. Also, we parents can be very very judgemental of one another and if there is something different about your child People will look for a reason that is not flattering to you the parent. Oh, he has tantrums? well you must spoil him. Oh, he has accidents? You must not care enough about your child to potty train him. Not to mention the difficult time many AS kids have with peers which can cause them stress.

No, As is not the end of the world but it is a disability of sorts and as a parent I want to make the world as easy as possible for my kids. It's so much more comforting if you can attribute certain behavior to a phase than to think it will last his/her entire life. BTW, I have a chronic disease which is similar to having a disability and no, not the end of the world. But would life be lots easier without it? You betcha.

And finally, there is the issue of not being heard by your mother. To her, it's just another grandchild with AS -- she doesn't seem to get it that you have a closer relationship with your daughter (for obvious reasons).