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melancholyrainbowsMichelle Dean
10/20/14 10:42am
My oldest son, now 16, is autistic. There have been days where I've sat and cried and wondered what the hell to do, because I just can't see how to go on being his mother. He's attacked his younger brother. He destroys my house and my and his brother's things, causing hundreds or thousands of dollars in property damage every month. And there's no end in sight, because unlike most neurotypical kids he won't be moving out when he's 18. I'm going to be 80 years old and still caring for a person who can't speak and who expresses the slightest disappointment, like no seconds on desert, by cutting all the sleeves off my shirts or stomping on his brother's guitar or throwing fist sized rocks at people.

And there's just not enough help and no good options. I've contemplated suicide on more than one occasion, although not (yet?) murder. There's no way out, no end in sight, and no "rewards" that well meaning people like to babble about when they talk about raising children with special needs. Fuck you, it's not more rewarding. It's hell.
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  mwatson2melancholyrainbows
  10/20/14 10:59am
  Christ... I have so much sympathy for you and have only been exposed to severely autistic children well below their teens. I have often wondered what life is like as one becomes older and your story terrifies me. I know it's more out of fear than anything, but it's stories like this that make me so hesitant to start a family with my wife.
  
  Surely there are government programs for assistant right? I know there are volunteer and non-profit groups for help, but I don't doubt their in short supply or in most people's budgets. It's easy from my perspective to say "I'd rather admit my kid and enjoy my short and limited life", but as a parents I'm certain it's such a MASSIVELY bigger obstacle to tackle.
  
  Putting your family first is important, but what's the point if you lose yourself! By making it 16 years I already think you're an admirable person - I'm sure those around you feel that and then some. I hope you find some solace and know that your life is worth keeping!
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  ljndawsonmelancholyrainbows
  10/20/14 11:08am
  As I mentioned above, my stepdaughter is autistic. She's fortunately not violent, but she's certainly been destructive - and oblivious to her destruction. My heart goes out to you. It IS hard. There is NEVER enough help. We find ourselves socializing mostly with other similar families (and there are a lot of them). At least that way we are in an understanding group.
  
  Bless you for everything you are doing.
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KittensAndUnicorns_v2_The UprisingMichelle Dean
10/20/14 10:40am
long read but it most definitely kept my interest the entire time.

i know a mom with a 17yo autistic son. he is 6'3", 200 something pounds, and has violent tendencies. her son pummeled her face so much so that the LAPD advised her to keep a taser on her at all times, to disable her son.

I've wondered why it is that autism is more visible these days. I don't remember ever seeing autistic people growing up. I've got a theory that it was way more common to send your autistic kid away, like to a boarding school, never to be seen again. whereas maybe, JUST MAYBE now there is more... compassion? desire for patience and understanding?

any thoughts?
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  kemperboydKittensAndUnicorns_v2_The Uprising
  10/20/14 10:47am
  Not boarding school, asylums, mental institutes where they were left and never spoken of again (in fact my mother recently found out about a cousin she had never heard of who was sent away and never talk about because he had Down Syndrome). Some autism was just seen as that weird guy every one in town was careful of. You probably knew of adults who lived with their parents and never managed to fly the nest, people who worked on the family farm or in family shop but didn't inherit it. Susan Boyle is a great example, until she was on Britain's Got Talent she lived in her small town with her parents and she cared for them until her death; she worked part time jobs and saw her siblings families and looked after elderly members of her church congregation, everyone in town knew her and knew how to interact with her. That is the kind of life a lot of those with milder forms of autism would have lived.
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  CarlySparklesKittensAndUnicorns_v2_The Uprising
  10/20/14 10:50am
  that's what I think too.
  
  i'm only 20, but I can name at least 5 or 6 students in my grade alone that were on the autism spectrum, and had at least 1 or 2 classes with the general student population. my parents can think of maybe 1 person in their entire 13 years of school that had a learning disability.
  
  I had a conversation with a lady who was just a few years away from retirement about it, and she kept saying that she never met anyone with autism or any type of learning disabilities when she was a kid, that there's gotta be something that we're doing wrong.
  
  she called me a liar when I suggested that it was party because there's less (it's still there, but not as much) of a stigma around having a child with autism, and partly because doctors have changed the definition to include children all over the spectrum.
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OpenSecretsMichelle Dean
10/20/14 11:06am
This paragraph from the story really struck me: "But looking back, Matt sees the blog year as the period when Kelli started to get lost in her own irrational anxiety—"consumed" by fear and "obsessed with her own safety," he says. Once it became clear to Kelli that Issy was not going to be one of the success stories, he says, a wound opened up in Kelli that never healed."

There is nothing "irrational" about this woman's anxiety - her daughter regularly lashed out unpredictably and violently, sent her to the ER, and gave her concussions. Anxiety and a focus on personal safety is a completely reasonable and normal response to that type of environmental circumstance. Sounds like either the article writer and/or the husband are blaming the victim. :-( Her in-laws sound awful as well.
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Pikku MyyMichelle Dean
10/20/14 11:38am
fuck this. as someone autistic who is legitimately AFRAID of showing anger these days because of what it could make someone do to me, fuck all of this.

there is someone else in the comments who said they had considered suicide because of their autistic child, "although not (yet?) murder." WOW! How fucking BIG of you! Go fuck yourself. I'm tired of this. Just because my autism presents in a way that lets me fit into your fucking big picture doesn't mean that anyone else who is autistic doesn't deserve it any less.

I know there are problems, but this is disgusting. I have been going through a period of my life where I have been completely depressed, and some of the ableist things I've even been saying to myself shock me. The other day, I wished my mother HAD killed me. Is that, in any fucking way, healthy?

Do you people even love your autistic children, or is it all about you, and how much you're fucking suffering (which, I admit, is real, but come the fuck on, it isn't all about you.)

(I apologise if this is a bit blunt, but finding out about this story made me really upset and worried about other autistics out there. The way non-autistics treat people on the spectrum is absolutely terrifying to me, and I (predictably) get very upset about it.)
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  melancholyrainbowsPikku Myy
  10/20/14 11:53am
  You're projecting. This isn't about you.
  
  No one, least of all me, is saying autistic people don't deserve life and happiness. Fuck, I'm on the goddamn spectrum myself.
  
  I have not mistreated my son and he is well cared for and happy. I have never let him know how I feel other than to let him know I love him. But it is fucking natural to resent someone who physically assaults you and destroys your things, and it's not only natural but healthy to be unhappy and occasionally vent or harbor fantasies when someone does those things to you.
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TraceMichelle Dean
10/20/14 10:52am
Honestly, I have heard stories of parents snapping with children with these kinds of violent tendencies and I sympathize. It's certainly not the child's fault that he or she can't control themselves and I would never advocate hurting anyone, but what the parent-child relationship basically becomes is as abusive as one you might see in any other sort of abusive relationship. Even worse, there is certainly no control involved, no promise that the beating will stop before it gets to the point someone is mortally injured. What's worse is that unlike any other sort of abusive relationship, you are basically locked in hell indefinitely with no other way out.

Add to the fact help is hard to gain or find (love seeing her insurance basically was BEGGING for a reason not to keep paying for treatment, just lovely) and you have a recipe for disaster. So much of her quotes sounds like she's suffering from a crapton of PTSD and mental issues (duh) risen from what she's gone through.
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  MantisAeroplaneTrace
  10/20/14 11:12am
  All this and people still want to stigmatize and eliminate abortion.
  
  People can do what they want, if they think they're prepared to raise a child with such persistent needs that's cool, but there's no reason anyone should be forced to deal with such a burden. Especially since 'we the people' decided helping such children/adults is beyond 'our' scope and private options are often beyond the means of many parents.
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  ljndawsonMantisAeroplane
  10/20/14 11:25am
  Aside from Down Syndrome, you can't really determine intellectual disabilities before the child is born. As for DS, the rates of that have plummeted precisely because of abortion because it IS diagnose-able pre-birth. Autism is not. So you won't know until you have the child, and the kid's well into the 2nd year of life.
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laluchitaMichelle Dean
10/20/14 10:59am
This was the best article I've read in a long while about this case/the issue of parents killing kids with disabilities. I know that disability rights activists were up in arms over the Dr. Phil interview, pointing out that Issy was the actual victim here, not her mother. But I think this article really captured the fact that while this family clearly was in an untenable situation, it's likely that the mother had some serious problems of her own going on. It's not just a case of a woman at the end of her rope trying to do what is best for her family, but rather a woman obsessed with the limelight she received for her role as a martyr, who did an interview with Dr. Phil which tanked her whole defense strategy after telling her lawyer she wouldn't, who bought the grills she used to try and kill her daughter before her daughter was even living back home, and who didn't have anywhere near as much carbon dioxide in her system as her daughter did (who was strapped into a seat next to the grills.)
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HBICMichelle Dean
10/20/14 12:25pm
Okay, I am going to leave a rather long comment. I am the mother of two autistic children, and as much as I hate to admit it there are things in this I relate to.

But NOT the part about ever wanting to hurt my child. Sorry, I feel like when you choose to be a parent, you choose to take on whatever that entails. Even a "normal" child could be in a car accident, and have a stroke, and require care for the rest of their lives. It happens more often than you think. When you agree to have a child, you are taking on a responsibility for life. I don't think that children should end up in institutions, but if you are someone who thinks about hurting your child, who could see yourself killing your child, or can't protect other people from your child and worry about what that entails, an institution is always better than death.

ABA in this case I truly think was a mistake. I know parents that love ABA, and I know kids who ABA has probably helped in some ways, but for every kid it helps there is another one who it doesn't help or possibly who it actually hurts. The thing is, you can't cure autism. It just can't be done. The only thing you can do is try to make an autistic child "act" like a neurotypical child. That can sometimes be a good thing; it helps kids make friends, maybe helps them with school and getting a job down the line. But I think the damage it can do both to the child's self-esteem and to the parent-child relationship isn't worth any potential benefits. Basically, you are training your kid like a dog. You are preventing them not only from doing harmful things, but usually from doing harmless things like avoiding eye contact and stimming. My kids never had ABA, but that's a new trend. They're a lot younger than Issy. When Issy was young, it would've been expected that any good parent of an autistic child would do ABA. Kelli would've been told that ABA fixes everything, and that if Issy wasn't improving that meant Kelli obviously wasn't working hard enough. I sympathize with that. The parents are blamed when the kids aren't "cured" even though, as I said, autism can't be cured. And in some cases maybe it shouldn't be.

I think Issy is one of those children for whom ABA was a terrible idea. I think Issy feels like she is constantly being punished when she can't or won't follow the commands she is given, and that may be part of the reason she lashed out. Kelli herself mentions guilt over denying her affection because of ABA. That's definitely part of it. I don't think Issy sees Kelli as a loving mother, and I don't think she has for a long time. While other fourteen-year-olds lash out by blaring heavy metal music and screaming "Fuck you Mom, I hate you!" Issy isn't quite capable of that level of communication. So she hits instead. I also doubted Kelli ever "presumed competence" with Issy. http://emmashopebook.com/2013/03/07/pre…

^ A great blog entry on what I'm talking about.

Presuming competence means you assume that your child knows what is going on around them, and that when they do something it's for a reason. That doesn't mean it's for a reason that makes sense to you, you just try and understand what reason might make sense to them. It also means you don't talk about your kid in front of them like they're not even there. Kelli, like a lot of parents, probably assumed that autism makes kids "crazy" in some way and that nothing they do is for any reason. I think in a lot of cases, overstimulation is the reason for strange behavior, like kids throwing tantrums in the supermarket because the bright lights hurt their eyes or kids tearing off their clothes because the tags are too itchy. Sometimes my kids get mad over things I can fix, sometimes they get mad over things I can't fix, but we can usually get through it together. I think ABA can in some cases make the reaction worse, because kids are taught if they do what they're told they'll get a reward. Problem is, sometimes the reward they want isn't possible (the article mentions Issy wanting to go to theme park on a Tuesday night) and sometimes the parent just runs out of candy or juice or whatever the standard reward is. I think most parents hope they'll get beyond the reward stage of ABA and stop having to give rewards to get the desired behavior but I don't think that always happens. Autistic kids are obsessed with rules and routine (well, most of them are at least) and if you drill into your child's head for their whole lives that if they do one thing that another thing will happen, and then you break that contract, that's going to make them confused and upset.

To be clear, I am not blaming Kelli for anything that happened up until the night she tried to kill her daughter. She was simply doing what she was told to do time and time again and living with the frustration of not getting her desired result. And I think that's what infuriated her so much. Not a "lack of services", as Kelli had more services than most moms I know. And she didn't have to work. Losing any service is frustrating as hell, but if you aren't at the point where you and your child understand each other and can live comfortably together, the only service that will make things better is full time institutionalization. I don't think Kelli is a sane person, if you look at some of her blog and twitter entries there is a lot that might suggest some form of personality disorder.

But ultimately, the same thing that happened to Issy, happened to Kelli. Issy was told time and time again, touch your nose, get a reward. Be a good girl, get a reward. And finally, tired of doing what she was told, Issy snapped and hurt Kelli. I think it's telling that usually the mother is the one who does ABA and the mother is also the primary victim of aggression. Not just in this family, but in other families I know with the same situation, but not this bad. But Kelli was also getting trained. Do ABA every night after school, Issy will be making eye contact. Send her to this therapist, Issy will start speaking more easily. Send Issy to this facility, Issy will stop hitting you. And when Kelli, having devoted fourteen years to strictly following the advice she was given, realized it was all for nothing and turned against Issy. Kelli was sold on this idea that you can cure autism, that if you wish hard enough you'll somehow "fix" your child. That's just not true, and the parents I know who cling to such notions suffer for it. So do their children.

But it's still not okay. If you can't live your life anymore, you kill yourself, not your child. I can sympathize and understand everything that happened up until that point, but not the final act. I never will be able to understand how a parent can harm their own child.

People blame autism, and the lack of services, but I think the problem is really the conversation we have about autism. The idea that autism can be "fixed", the fantasy about recovery that is sold with ABA that the article talks about; that does so much harm to so many families. It's just not true. I'm a lot happier because I focus on what my kids can do and not what they can't. I respond to their needs and accept them for who they are, I encourage them to socialize with other autistic kids. I read a lot of blogs from other parents and from autistic adults to try and understand how they see the world and why they behave in ways I can't always understand. My kids are three and seven, and I know things will only get harder as they get older, but I feel like I've learned enough to know what I'm getting into. Kelli Stapleton clearly did not know what she was getting into. She was sold a fairytale that didn't come true, and for most parents that doesn't lead them to harm their kids, but sometimes with someone who's mentally ill or just exhausted to the point where they can't think straight, bad things happen.

But autistic people still have the right to life. I believe we have an obligation to keep all our children safe. As much as I understand Kelli Stapleton, I can't sympathize and I certainly can't condone, because I tried to put myself in Issy's place. To put my children in Issy's place, if something happened to me and they were in the care of someone else. Imagine that you can't communicate with your family normally. Imagine knowing, deep down, that they thought you were a burden. Imagine having a mother who openly wishes for a "normal kid", but try as you might you just can't be "normal" enough. Imagine being completely powerless in every situation, and having no voice for yourself, except when you use physical force. Imagine a mother who, by her own admission, won't hug you because she's afraid of rewarding you when you don't deserve it. Now imagine knowing that your own mother tried to kill you, and that thousands of other mothers sympathize with her, and feel that if you their daughter, they'd kill you too.

Issy IS the primary victim here. Is she the victim of Kelli, or the victim of a society that doesn't value autistic people? Maybe a bit of both. But I still think our sympathy should be with Issy, and that maybe Kelli is better off in jail, or perhaps a mental health facility, than at home with her kids.
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OnebananaMichelle Dean
10/20/14 11:09am
I'm a dad and my kids are thankfully functional in the traditional sense. They're a pain at times, but I would do anything for them regardless. I work and work and work for and with them so that they may be the best at whatever they choose to be in this life. I've cried at my ineptitudes and I beat myself up when I feel I failed them. Kids aren't all happy moments; they will test you and at times you will resign yourself. But they are worth it, they really are.

However, this much more than that. I can see how a parent would break. This isn't even considering the American view and systemic blunders in regards to mental 'issues' (it just compounds the matter). This is an unfortunate, abusive, relationship with no culprits. No intentional ones, at least. How can one sustain? I reserve judgment, because really, I wonder if I could do any better? I don't think I would resolve to murder-suicide, but then I presume a bit about myself- which has never been tested in such a way.
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