Okay. This article has all the usual hyperbole and sensationalism--that's obvious. But there is an issue here that's real, and that is the fact that parents suffer when their autistic kids are rejected, stereotyped, etc.; and they suffer when there is too much to do to raise the child and nobody helps them. Autism almost always means "difficult child" as well as "isolated parent". .....
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Ellen: Due to lack of support from one brother and his wife for both my Aspie daughter and my aging Mom- ! actually blocking Hope's access to their son Drew twice as if he needed protecting or something (Hope adores him, and he her)!- I no longer speak to either so YES autism has sad consequences sometimes. I rather hate them now as a matter of fact as they looked on and watched while I twisted in the wind with a crushing rope of responsibilities (Mom and Hope) around my neck and did as little as they could to help.
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Callista: When you have an autistic child and you go to the grocery store and that child has a meltdown, most other people have no idea they are looking at a scared, overwhelmed child. They think they are looking at a spoiled brat.
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Ellen: I got that mostly from one of Hope's tubby tutors who thought I coddled her too much. She ate too much! Idiot. But she was childless, so clueless herself about parenting. She also had a rather evangelical frame of mind- not my favorite people, sorry! We stayed on good terms, but dumped her for another tutor, who LOVED Hope and
never made judgmental comments!
I also WAS ABOUT to get a lecture from Hope's babysitter last year (a woman who works at a daycare center) but cut the bitch off, saying "gotta go!". Try it- good tactic. Run like hell. She may know toddlers, but she sure as hell doesn't know Aspies! ---------------------------------------
Callista: For high-functioning kids, the moms will get things like, "You just need to discipline him better." Being told you are a bad mother is very painful when you are trying as hard as, or harder than, everyone else. And remember, these are neurotypical moms.
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Ellen: After Hope's diagnosis clueless brother above called me once and asked me in a desperate tone of voice what I was doing to "help her ". I was so insulted as I am probably the most pro-active person you'll ever meet, for God's sake, and methodical, and cerebral (20 years education, a master's degree and teaching certificate) and experienced at parenting (2 kids). But it occurred to me later my late Dad would have done the same thing had he been alive as we are a "fix the problem" type of family...
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On top of that, raising an autistic child can be hard work. I've heard it described as "parenting squared". Maybe your child is an insomniac--sleeps four hours a night on a good day. Maybe your child doesn't have a good sense of danger, and you're forever having to pick him out of trees and make sure he doesn't run onto the highway. Maybe he has frequent meltdowns, and you're getting headaches from the screams ...
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Me: Hope has been pretty easy-- few of the problems you mention above. She had a few meltdowns in middle school, but nothing we couldn't handle (though it was stressful at the time). The only persistent one, the one that complicates everything, is her perennial lack of maturity, lagging behind others her age. God I hope she catches up. Most of the teens that post here seem lightyears ahead of Hope and that worries me a little. But she lacks still self-consciousness, won't go into Aspie chatrooms yet to learn, to discover who she is.
I also worry about her safety as she would be so easy to take advantage of in a myriad of ways. That sort of worry is probably THE most incapacitating actually.
That said, I know for a fact I have some underlying physical issues (that haven't manifested yet, but will) that stem largely from parenting her AND being my Mom's chief caretaker from 2003-January 2007. I had spinal problems in 2006-2007 that took a full 9 months to heal. At least I only had stiffness and numbness, but no pain!
I have occ. panic attacks lately too but that is consistent with aging (I am over 50). Let's just say I am a big fan of xanax, but don't abuse it.
For all women over 40 who are experiencing perio-menopause or actual menopause I recommend taking bioidentical hormones (if there is not breast cancer in the family- just to be ultra safe) in order to cope, to be able to sleep well, think clearly, you name it.
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Callista: And everybody seems to want to pity you and tell you your child is either an angel or a demon, either has to "overcome" his autism or else will never amount to anything. You have to deal with the knowledge that your child is being bullied at school. You have to wrestle with special ed teachers who would rather just warehouse the child than teach him anything.
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Me: The one thing I can't handle anymore (due to ego probably) is the pity so I spend a lot of time (like just yesterday in an email to friends and one family member) bragging about Hope's progress, reassuring people she is going to be just fine ultimately. I am also spreading the word that I am not pro-cure and that a anti-cure movement is underway that will revolutionize how we view disabilities, not just AS. As I've mentioned in previous posts- first women's rights, then blacks, then gays, now it's YOUR turn folks!
Hope was bullied on average every two months from about 4th grade to 8th. It mostly stopped in high school. She is actually, get this!, on her way to becoming popular in a sense. Case in point: She was late getting to school yesterday because of stomach cramps and when she arrived in English several girls started to baby her, get her snacks, fuss over her. Then I heard that in journalism kids were asking her what her nickname was. In special educ. she has started to talk so much to the other NT kids that it is affecting her work. She started the year by only talking to the teacher there but now seldom talks to her. She is finally one of the gang!!
Re special educ. teachers- we have been very lucky in that regard and I have no complaints. That said I still have to stay in near constant email contact with them and I track nearly every major paper, report, and test. It is exhausting!!!!! The fact that I will probably have to hold her hand thru college or technical school- well it makes me actually nauseous as I feel at my limit now.
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Callista: Autistic people do suffer from the prejudice we get. But so do our parents. There's not enough support; they're not included in the community; and in general there's much more trouble coming from prejudice and isolation than there ever was from autism itself.
And I bet I'm not the only one- Either the journalist who wrote that is careless, or he/she was having a laugh.