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An Autism Truce
- Apr 17, 2009 at 10:28 AM
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- Comments (15) Total Views (381) Everyone can see this journal post.
I can honestly say "I've had it." More and more on cafemom, I see women telling me how I should think, feel and act in regards to my child's autism. I see women scoff at me (and others) simply because I would like to know what caused my child's autism. I see women on here assume that, if you dont vaccinate or selectively vaccinate, its because you were "fooled" into believing that vaccinations are the cause of autism. Then these same mothers, instead of offering support, basically make their little snide comments which imply or flat out say that if you believe autism is caused by ANYTHING other than genes, you are stupid, ignorant, uneducated, uninformed, or some other code word for "dumbass." Many of these mothers have children with autism themselves, or so they claim. Yet instead of supporting their fellow autie moms, they blame them for believing the "wrong" thing, or wanting to know the cause like that is a pointless question. Or the worst, they say autie parents are just "looking for someone to blame." Again, what is so ironic about this is the amout of moms that say this stuff and claim they have children with autism. Then, when they go into detail you find out that their children are "on the spectrum" and have something closer to PDD-NOS or Aspergers. PDD? Seriously and you are going to claim to know what is best for MY child? What is best for MY cause?
I'm tired of being told there is something wrong with me because I dont consider my child's autism a "blessing." I'm tired of being told that I should "get over it" cuz there are more "fatal" diseases out there. Why am I so tired? Well mainly cuz its hard to bite your tongue. Its hard (for me anyway) to be rude so far as to look at another "autie" mom and say "well maybe if your child had REAL autism you'd understand." So I'm gonna say it here. I'd like a truce between those moms with children with REAL autism, and those moms with children "on the spectrum." So here goes.
1. I promise, that if you will stop telling me I should be grateful for my child's autism, that I will not tell you that I think your child's diagnosis of autism or "on the spectrum" is a complete crock of shit. I will promise not to scoff in my head when you rant about how "hard" it is...when your child is BARELY effected by his or her "label."
2. I also promise to try to change my own thought process if you will. I will try very hard to change my thinking. My current thinking is that if your child was able to "recover" from autism due to a diet change or something of that nature, then your child probably isn't autistic to begin with. However, in order to not minimize your situation, I will try to change my automatic thinking that you have no idea what real autism is. In exchange, I would appreciate you NOT telling my that I am somehow hurting the autism "fight" by wanting to know what the cause is.
3. I promise to stop saying there are other POSSIBILITIES of autism causes or triggers, if you promise to show me the PROOF that it is ONLY genetic. Because I hear that's the ONLY allowable cause to say out loud, otherwise you are made fun of. I do believe its genetic, but if i DID think it was vaccines, on here you are attacked for even DARING to think that. You are accused of hurting the autism fight, thereby hurting your own child. If you can show me the proof, I'll quit thinking you are a complete bitch for trying to tell a mother struggling with a disabled child that she is hurting her child by not admitting that genetics is the only option
4. I promise, that when the Dennis Learys of the world point out that some of you are getting false diagnosis from your docs, when what your child really needs is the equivalent of an ass whopping, that I will stand for you. I will say "no, that's insensitive, that's not right, he has no business saying that, etc." Because you are a fellow mom and hearing stuff like that about your kids hurts. Even if I believe its true. Its insensitive and so I will stand up for your kids. In exchange, I'd appreciate it if you not tell me that I shouldn't be fighting to make vaccines safer even if I dont think they cause autism.
5. I promise to try to remember that just because your child looks and acts "normal" and is in a mainstream class, minimally effected by his or her diagnosis (by OUTWARD appearance), it doesn't mean you dont struggle. In exchange, I would appreciate it if you would at least acknowledge that being "on the spectrum" is really NOT as serious as having classic severe autism. They are so different in presentation that they may as well be two completely different disorders. My child is closer to a non-verbal "rainman" then most of the kids I see on here with moms saying those kids are autistic. However, when I try to bring up the differences or say that I AM STILL upset about my child's situation, I am told I should basically suck it up cuz it could be worse, he could have cancer. Yes I'm well aware of that thank you. He COULD have it worse. Thank you for minimizing my stress. You child COULD have real autism...but he doesn't. Oh wait, I wasn't supposed to say that was I lol?
So, here's to me attempting a truce. Cuz there are a few on here that I'm bout to verbally lose it on. And I'm trying real hard to keep a membership on cafemom cuz in some ways I do LOVE it here. But if I hear another mom tell me to consider my child's severe and completely disability a "blessing" I might just tell you all the reasons I think a spanking may clear up your child's "disability." And that's really NOT how I want to come across cuz I know that is hurtful. So I'm getting it out here, so I dont tell you personally lol.
Ok....rant over.
Comments:
AMEN!!!!!
I have written several posts that are pretty much word for word what you just said. :) Voting you up!
although i dont have a child that has autism, my oldest daughter is severly disabled and i feel your grief and the questions to why did this happen, thumbs up to you for expressing how you feel
I guess I haven't read the posts that have gotten you so upset, so I don't know who has made the kinds of insensitive comments or suggested that we should somehow feel blessed that our children have autism.
I have responded to some of the vaccine posts just to make the point that we can't look to just one cause and ignore any others--we may miss some important clues if we only look at one potential cause. And on those posts I said that I don't think that vaccines were the cause of my daughter's autism--but I can't speak for every case. I have read posts and replies that imply that anyone who doesn't think that vaccines cause autism are idiots or ignorant.
What troubles me here is that you seem to feel that only the most severe cases of autism are worthy of consideration--you seem to mock those who have Asperger's or PDD-NOS, and suggest that these cases are some how made-up or insignificant or not really autism. I understand that you feel that some parents of children with less severe cases of autism might be condescending to you, but that can't be everyone.
My daughter has been diagnosed with ASD. However, she doesn't display all of the characteristics to the same degree. She is becoming more verbal--thanks to a great school and wonderful therapists. She has become more social with her peers, thanks again to a great school and her work with a researcher at this school--but she needs constant prompting or she will retreat to a solitary study of the trees and bushes. I am proud of her accomplishments. But she is not "recovered", nor do I think that a recovery is possible. At this school are several children with ASD. Some have more "classic" autism, while others fall on different parts of the spectrum. Would you assume that those parents whose children are less severely affected are any less worried about their children's future? Do you think that they somehow feel superior or less compassionate toward those whose children are higher on the spectrum? That part of your rant struck a nerve with me.
I am greatly concerned about my daughter's future. Just because she is becoming more verbal does not mean that she doesn't have autism, or that I don't lie awake at night worrying about where she will be as an adult. Just because she doesn't have the most severe form of autism doesn't mean that I don't commiserate with my friends whose children are at that end of the spectrum or that I don't celebrate when the children who are at the milder end are able to mainstream.
I may have taken some of what you wrote the wrong way. It just sounded like you felt that only the children with classic autism really have autism and that the rest of us should just beat our kids into "normalcy" (I realize that it was a play on Leary's brilliant insight). You may not have meant to imply that I don't deserve the tears I have shed for my daughter, or the endless worry I have for her future. You may not have meant to suggest that just because my daughter finally started calling me "Mommy" shortly before her fourth birthday that I can no longer understand the absolute frustration and worry of those parents who may never hear their child speak. I am grateful for the progress my daughter has made. But she still has, and will always have autism. And because of it, I am involved in autism awareness and the creation of an Autism Support group in my area. No form of autism is a cause for celebration. I love my daughter, not her autism, and I support other parents who are raising children with special needs--whether their children are more or less severely affected than mine.
jsbenkert-you said this alot nicer than I ever could have today. I totally agree with you and thought that you expressed yourself well. Thank you.
I have peeking at this journal all day trying to find the right works. jsbenkert said it all very gracefully for me. My son is ASD and is one you have to know to see it. Just because he isn't severe doesn't mean he doesn't deserve the same consideration or worth the sleepless night and tears. If this is truly a "An autism Truce" you would understand mild, moderate, and severe are all problems that need to be addressed. Some does require lot more work than other but not more , credit, for the lack of a better word.
I agree with jsbenkert and mrscuniculus. ALL children on ALL areas of the autism spectrum have their own unique challenges and they are all equally deserving of being addressed.
That said, I feel the need to defend the way the OP of this journal is feeling, even if she may not necessarily have expressed it perfectly. I know several mothers of children with mild Aspergers who have told me where to get off when it comes to how I view autism. It gets old after a while to listen to them telling me I am a moron for not seeing the "delightful quirks" of autism. (Their words, not mine.) In my household, there aren't "delightful quirks". There is my precious son who can not speak, there is screaming, head banging, disconnection.....many things I could go on about, but not "delightful quirks" for the most part.
At the point that I'm speaking of it has nothing to do with the children for me. It has to do with the frustration that I feel from a mother of a much less severely affected child not being able to realize and accept that a parent with a child who has a much more severe level of autism might view things a little differently than they do. I can admit that I understand some of those mothers views on autism, and I'm sure they very well may face tough challenges with their children that I will not have to face or understand.
I just think the path of understanding needs to go both ways and many times it doesn't seem to.
"i just think the path of understanding needs to go both ways and many times it doesn't seem to."
I agree. Both sides and the middle|(because there is one on the spectrum) need to be supportive of each other. However this isn't a journal about understanding. It is about a momma being pissed at certain people going on a rant and ripping everyone apart -whether they had something to do with her anger or not. That's not being understanding. It's the same meaness and cruelty that she has been receiving that she is now spewing.It doesn't sound to me like she wants a truce. It sounds more like she wants a fight.
jsbenkert and the rest of you, I think you mistook my sarcasm and intentional mocking as seriousness, instead of a reverse on how i have been treated. my point was to come across as rude, mocking and minimizing as some of the women on here are towards me. the majority of the women that have gave me "what for" on here ARE those with children who's autism is less severe. sorry but that is the facts. i didn't refer to ALL children on the spectrum, i did acknowledge that regardless of the diagnosis each child (and the parents of child) struggle, so if my journal still rubbed you the wrong way, so be it. the "cruelty" i'm spewing is just the same thing i've gotten from a lot of moms on here. i'm not going to apologize for being angry. if you AREN'T one of those moms, then this post doesnt apply to you in ANY way because i made it clear this was directed at a few specifically. and i'm not going to apologize either, for believing that some kids on the spectrum should not be. there are even experts admitting that its very easy to confuse a great many things with being "on the spectrum."
As I was reading this and all of the replies, I was in defence of you, because I thought you were angry and just venting. After reading your last comment, however, I am questioning my initial reaction. Who are you to decide what children have and don't have ASD? Are you a Dr? You need to learn empathy for others, not just self-pity. If people are treating you the way you said, they shouldn't...but that doesn't warrant your words here. Everyone with a child on the spectrum hurts, no matter where their child is...because it's THEIR child. Nobody wants to see their child go though any kind of problems. So, if a child is mainstreamed and made fun of by other kids, is it ok because they "only have asperger's"?
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