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I won't give out Twitter handles, but here is part of the conversation.
"When you cure my Autism, you cure my originality".
Innocent enough. One person's opinion. No big deal. Until...the responses. Here are a few:
"Originality - that's a hell of a name for severe disability - get real".
"In severe cases it can be a lifelong drain of unconditional love. Yes...drain".
"My two children are a great gift to me. Autism - yeah, not so much".
There were a few other responses, but they are more identifying, with the names of children, so I left them out. I ended up clicking on the profile of the original poster, and found out she is 13.
Thirteen.
I am hoping none of the people who responded to her took the time to look at her actual profile, because if they did, saw she was a child, and still decided to respond that way? Well, there are no words. Not words that I want to use here, anyway, unless I want to change my blog to 18+.
Here is a girl, barely a teenager, sharing how she feels about her own autism. Let me emphasize this: her own autism. Because she is the autistic one, after all. She can speak to her own experience, and that should be respected. Even if people disagree with her, basically cyber-bullying a child is inexcusable. Period.
Telling a child the condition with which she lives is a drain on a parent's unconditional love?
Telling a 13 year old to get real?
Response after response telling her how wrong she is, and that autism can only ever be a terrible, horrible thing?
And we wonder why people sympathize with murderers. We wonder why there is so much abuse in the special needs community as a whole. We wonder why kids commit suicide, after being bullied, and feeling unsupported.
It makes me feel physically sick.
When we are so stuck in our own self-pity, our own martyrdom, our own negativity, that we don't even think to see who we might be hurting when we open our mouths? Something is very, very wrong.
When you think it's OK to tear down a 13 year own girl, who is comfortable in her own skin, and doesn't see her autism as a curse? Something is very, very wrong.
When you understand why parents would murder their child? When you feel an outpouring of compassion for those parents, and blame the child for their actions? Something is very, very wrong.
When all you put out into the world is negativity, and darkness? Something is very, very wrong.
I've had it. I really have.
I hope others have had it, too, and we can work together to make sure every child is safe. Let's change laws. Lobby for our kids. Be on the look out for signs that a parent is about to go over the edge, and stop these tragedies before they happen. Let's make sure the outside world knows autism isn't a reason to hurt your child.
Let's make sure a 13 year old is safe to go online, express her opinion, and not be verbally assaulted by adults.
When your hatred for something makes you attack an innocent child, it's a sign things have spiraled out of control. Yes, everyone is entitled to their own opinion, but when our opinions become toxic? Enough really is enough. Our children deserve better.
I couldn't agree more except that there is no way to make the Internet safe for a 13 year old. It's the net, people are judgmental, rude and downright nasty and cruel and they get to hide behind a computer or a cell phone so there is no need for decorum.
ReplyDeleteShe should at least be safe from other within the community...the mythical autism community, since one apparently doesn't really exist. Not if we treat each other like this.
Deletewhile I don't necessarily agree with her position (though I hold the slightly different position that the need for a cure varies depending on the severity of the autism and the child's ability to actually be themselves)
ReplyDeleteHowever the fact of the matter is that each person has a right to have their opinion on this issue, especially one who is so seriously affected by it.
I think she has the right to not see her own autism as a curse, without being told she is wrong, and made to feel like it is. I think after recent events, we have to take a good, long, look at what we are putting out into the world, and what we are telling our kids (verbally, and with our actions). What if this was my daughter? What if it was any of our children, being spoken to this by adults online? Is this how we want our kids to feel? Like they are drains on our unconditional love? There are just no words...
DeleteI believe in treating medical conditions...I believe in alleviating anxiety and depression and other things that can come along with an ASD dx (which may or may not be related), but I can't get behind hating autism...not when this is the result. Not when wanting a cure means tearing people down who don't. Especially a kid.
and that is part of my point in essence. It is one thing to want to cure your own child (mine is high functioning but severely autistic and will likely live with us the rest of our lives)but it is another thing entirely to force a cure on someone who does not look on their illness as a problem.
ReplyDeleteThe other issue I really have with the entire situation is the fact that as bad as our son's autism is and as difficult as he can be at times, he never has been and unlikely ever will be a drain on our unconditional love. That is a function of being a parent.
our job in life is to be his advocate and to meet his needs. He may eventually become to much for us to physically handle as we get old(and we will get old) but it will not stop how much we love him, just our ability to care for him.
I am in a similar boat, as my daughter is HF, but how autism affects her might keep her home with us forever. I will always want to find ways to make sure she is healthy and comfortable (her anxiety can be so debilitating at times), and with my son, he has severe GI issues and epilepsy, and of course those are things I wish would go away, but as far as who they are? I have come to accept it. It was a long road, for sure, but I no longer see autism as the enemy. I fought it for so long, and it was just no way to live, and none of us were happy. I truly believe you only get one life, and living in hate is just no way to live.
DeleteI just wish people weren't so negative that something like this happens: a kid on Twitter gets taken down because her opinion on her autism conflicts with someone else's. I think things have gone too far when that is OK in people's minds.
So very true. She has the right to be proud of who she is. I'm autistic and so is my daughter. My daughter is non verbal and will always need full time care but she's our treasure and we love every bit of her. I'm proud to be autistic i'm sure if my daughter could talk she would say she's proud to be autistic too as she's usually a very happy girl. We take time with her being patient and loving taking the time to try to figure out what she needs and wants
ReplyDeleteIt saddens me that hate has taken over so much, people don't even stop to think who they are talking to, or what damage they are doing. We have one life, and that's no way to live it.
Deletemy child has smith magenis syndrome which contains many autistic traits and many additional factors as well....if she ever gets to a point when she verbalises she feels 'original' because of her condition i will cry tears of joy and want to shout it to the world from rooftops! If this sad and sorry world cannot join in the celebration then just shut the hell up...say nothing! yes, parenting a child with a disability is a drain sometimes....but parenting any child is a drain at times! Being a child with a disability is tough a lot of the time...yet again being 'typical' and just doing life is tough at times! Surely the tough times within the human condition are just a given, do we really need to say it when a child is having a positive moment? I am dumbfounded, saddened and want to wrap that girl in my arms! its people who don't know when to just say nothing who should get real! i am beginning to believe that people speaking when they shoul be quiet and people staying quiet when they should speak up is the most misunderstood life skill of all! x
ReplyDeleteYou are right...people don't know when to hold their tongues, and then sit back when something needs to be said. Truly, having a child with special needs can be draining in many ways, but it should never be draining on a parent's unconditional love for their child. And we definitely should be more aware of who our words touch, and what we are telling the rest of the world about our children.
DeleteI'd love to be able to get in contact with this girl, to tell her that she really can see herself and her autism that way if she wants, and to tell her she's OK. Even if the rest of the world says different. I want her to know that there are people who agree that it's OK to be Autistic. But I don't know how to reach her, so I'm going to leave this here instead.
ReplyDeleteI thought about putting her twitter handle in my blog post, but I was afraid I'd end up doing her more harm than good, if others jumped on the, you are an idiot for thinking autism is a positive, wagon. I can DM you, though. I just don't want to be the cause of anyone else jumping down her throat.
DeleteIf parents, educators and treatment professionals knew what damage this did to us, hearing this kind of stuff year after year no matter how hard we fought back against it, I'd like to think that they'd have the tiniest shred of a conscience enough to never say that kind of stuff. But then, I think, how could the rejection and even hatred in these statements, and the impact that those things could have on someone, NOT be obvious? And here I thought it was supposed to be us Autistic people that didn't have any empathy... [/sarcasm]
ReplyDeleteThat's the thing, how is it NOT obvious that what they are saying is so toxic and vile? I am pretty sure my 3yo niece knows better than to say awful things like this...it should be common sense. The worst part is what it portrays to those who know nothing about autism. It's why there are comments all over the internet about how it's totally OK to kill your child, and murderers should be set free bc they just had to deal with so much. What else are they supposed to think, when this is the image of autism people choose to spew? I just can't imagine living my life with so much hate...THAT'S a waste of a life.
DeleteI have autism. I am not proud of having autism as that makes about as much sense as being proud of having high cheekbones. That's different though than the right to be who I am which does make sense to me and no one should be challenging that in this case.
ReplyDeleteEvery teenager is a fragile creature. Every teen is trying to make sense of who they are. Add a significant difference to that and things will be rough. No one should make that harder.
Cure and severity are red herrings in this conversation. There will never be a cure so get over that right now I would say. That is more and more certain with the research. Severity is a construct. When people speak of severity and autism it is often other things that are severe. Often if the person also has intelligence deficits that are not in themselves part of autism yet are part of the construct of how we measure severe.
It is a mixed message that gets sent to autistic people when there is much focus on cure. It's somewhat less of a mixed message when a lot of the money that gets raised for autism goes towards not support, not services but developing screening for autism. If you are autistic you live knowing many people would just as soon you didn't exist.
Life is different degrees of tough for everyone. Surely people who are supposedly not impaired in there understanding of social skills and human interaction should have been able to recognize the teen's efforts and not respond abusively of course one would think people should also be able to not kill their disabled offspring too. The world is a disapointing place.
The world is a very disappointing place. I agree with everything you wrote...spot on.
DeleteThis is one of those moments when I can only ask "what were they thinking" and wonder if some of these folks are incapable of making the connection that they might be talking to their own children online.
ReplyDeleteI would love to tell her that two of my boys with asd feel the same as she does one is 13 the other 19. my other son will tell amyone who looks at him funny that he has autism without a thought aout it.
ReplyDeleteThis girl feeling good about who she is is something to proud of. How many so called typical girls are not happy about who they are. She should be praised for her outlook and not be torn down.
Shame on those attacking a kid for being who she is, she is allowed an opinion!
I would love to tell her that two of my boys with asd feel the same as she does one is 13 the other 19. my other son will tell amyone who looks at him funny that he has autism without a thought aout it.
ReplyDeleteThis girl feeling good about who she is is something to proud of. How many so called typical girls are not happy about who they are. She should be praised for her outlook and not be torn down.
Shame on those attacking a kid for being who she is, she is allowed an opinion!
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ReplyDeleteYes, thanks. I'm @yes_thattoo. (deleted the last one because I wrote my own handle wrong, can't do replies right because of proxy issue.)
ReplyDelete