“Can I do anything to help?” - “Trade kids with me.”
October 21, 2014 8:08 AM   Subscribe

By Noon They’d Both Be In Heaven By Hanna Rosin
KELLI STAPLETON, whose teenage daughter was autistic and prone to violent rages, had come to fear for her life. So she made a decision that perhaps only she could justify.
posted by davidstandaford (118 comments total) 27 users marked this as a favorite
 


This whole story makes me want to pull my hair and then hide under a rock forever. I don't even know where to start.
posted by emjaybee at 8:32 AM on October 21, 2014 [7 favorites]


I'm coming back from a weekend with my grandfather in law, who is a retired botanist and occasional pastor. In one conversation we had, he expressed that the saying "God doesn't give us more than we can handle" was absolute horseshit. Ain't that the truth.
posted by AlonzoMosleyFBI at 8:37 AM on October 21, 2014 [53 favorites]


God, it's all so heartbreaking.
posted by suelac at 8:50 AM on October 21, 2014 [1 favorite]


I feel bad for the Schizophrenic man killed by the police and not bad at all for the woman who tried to murder her own autistic kid and herself.
posted by Renoroc at 8:52 AM on October 21, 2014 [2 favorites]


When he was younger, my (autistic) son was much more prone to violent outbursts. I was less worried about myself (I am a large man, still physically able to overpower and control my son if necessary), and more for his mother, his teachers, and for any random passers-by who might wander into his sphere in public. Thankfully those violent tendencies have dramatically reduced in the past few years, and it seems less of a concern now.

But honestly, having lived inside this reality for more than two decades now, I can understand what Kelli Stapleton did. I am not condoning it by any stretch of the imagination, but I can absolutely understand the sequence of events that led to that result. As horrifying as it is, I am sympathetic. I am not a religious dude, but seriously - "There but for the grace of God go I" and all that.
posted by Lokheed at 8:53 AM on October 21, 2014 [73 favorites]


Renoroc: I feel bad for the Schizophrenic man killed by the police and not bad at all for the woman who tried to murder her own autistic kid and herself.

I didn't know we were each issued a finite amount of empathy.
posted by tzikeh at 8:54 AM on October 21, 2014 [51 favorites]


I think this NYMag piece is the most nuanced look at this situation I've read.

I'm glad that Issy seems mostly unharmed by her attempted murder. It sounds to me like Kelli has found some semblance of peace; I hope she is getting whatever help she needs inside prison.
posted by muddgirl at 8:55 AM on October 21, 2014 [1 favorite]


Maybe I can't think of anything to say because there isn't anything to say, except "Parents with disabled kids, especially those who pose a danger to themselves or others, should never be left to twist in the wind but be supported with services, counseling and treatment, for their sake and for their child's. The fact the we don't do so is an indictment of the callous and brutal nature of our society's attitudes towards the disabled and their families."

The weird, half-condemning and half-sympathetic articles about this phenomena (she is certainly not the first parent to do this) don't really help, but are a reflection of people's fears that a. they could be in this situation as a parent and b. they would also do something so monstrous to escape it.

Which, as the disabled community points out, seldom gives any voice to the disabled kid themselves. Or sees much of anything from their viewpoint. The kids remain angels or monsters, seldom people to the reader. Maybe because we leave the whole work of helping disabled kids have a life, be a person in the world, to their families, but the rest of us are relieved to not have to deal with that difficult and tedious and heartbreaking work. We condemn their parents for violating their personhood, but our society mostly treats them as unpleasant presences and burdens that we gladly avoid dealing with.

I was struck by the part where the mother expresses relief that jail is safer than home was for her, followed up by the husband saying "But the rest of us are still here," implying that she selfishly escaped her situation by attempted murder and going to prison and he resents it. And how fucked up is that? She might respond that she of course tried to free the rest of her family by taking her autistic daughter with her to death. But who can possibly be ok with that?

It's a moral black hole and we are all responsible for helping create it.
posted by emjaybee at 8:56 AM on October 21, 2014 [53 favorites]


Yeah, I'm having so many feels. Because with stories like this I try to focus on the fact that being emotionally overwhelmed even for the sake of empathy is less useful than trying to learn something useful and put that to action, (as opposed to curl up in a ball and scream what the fuck is wrong with the world which might provide release but doesn't actually help much)-- I want to instigate a little thought towards the kinds of solutions that would prevent things like this from happening.

I have volunteered in occupational therapy services and so many families are extremely overwhelmed and under resourced. Even families that have money may feel ashamed to hire extra help because it seems embarrassing to need extensive services, not only for the children but for the parents who often coping with a very traumatic circumstance on a daily basis. Home care services, child (and disabled adult) care services that give parents a break for long periods of time are very needed. What's more finding people who are both capable of caring for children or adults with violent conditions without themselves becoming abusive is extremely rare. This is a circumstances where supervised (with cameras) care facilities with very well paid and well trained staff may be better than leaving a staff worker alone with a violent teen who is capable of harming them (that is both a mental and physical health hazard in a work environment and needs to mean we develop better protections for staff and family caregivers to not be injured while doing this work.

Having a messy house, or escaping into personal pleasures like the internet or social activities (which is still a better choice than other forms of escapism like drug addiction or alcoholism); these are signs of distress and they can be worked with through emotional support and identifying the problems and finding solutions often that involve solutions coming in from outside sources because the person is too overwhelmed or their health and functioning damaged to identify and achieve the task load they are being given.

If there is a truly compassionate deity, that deity is not governing this realm. The idea that god is doling out suffering as part of "his plan" is a sinister human concept that helps people abandon those in need and justify the terrible things that happen in this world that each and everyone one of us should find unacceptable at the core of our beings and be rising up against with all the power we can create. Compassion is an opposing force to suffering. Suffering is not part of any compassionate beings plan for anyone and it should not be part of societies plan for what people should be allowed to go through either.
posted by xarnop at 8:58 AM on October 21, 2014 [27 favorites]


Please don't try to justify attempted murder here.

Squidalicious: Amplify This: Don't Murder Your Autistic Kids
And I want us to put victims like Issy first. I want parents to understand that while of course they need and deserve help if their children require intense support, they need to get that help from people who believe in and respect their kids, not from people who do see their children's lives as less worthy than non-disabled children's lives.

WWMT: Autism support groups hoping Stapleton case changes conversation
"Issy has been dehumanized and treated like this violent monster," said Morenike Onaiwu, a mother with autism from Houston, Texas, with two autistic children. She also sits on the board of the Autism Women's Network.
"We felt there is no way that we would allow the public to think at any moment it's acceptable to be on the brink of thinking you can kill your child," she said.
She stressed there's always another way, no matter what services are in your area, and the network wants mothers and fathers to think a different way.

posted by Daily Alice at 8:58 AM on October 21, 2014 [6 favorites]


I do feel bad for a woman who had the shit beat out of her on the regular by a member of her family, no matter how inexcusable the things she did afterwards or how little malice was involved in the beatings and how many extenuating circumstances existed for them.
posted by edheil at 8:59 AM on October 21, 2014 [58 favorites]


You know, I appreciate the whole intention behind deinstitutionalization, but when someone violently attacks caretakers and can't be stopped, maybe it's for the best. I know it won't help the patient much, but I don't think it's reasonable to sacrifice the health and safety of many other people to make the (probably futile) attempt to change them.
posted by Mitrovarr at 9:00 AM on October 21, 2014 [36 favorites]


The program worked; Issy had performed, Kelli told me, like a “rock star.” But after seven months, the insurance company wanted to stop funding the treatment. Issy’s bad behaviors had spiked a little, which the insurance company interpreted to mean the program was no longer working; the center said it was a natural response to teaching Issy to interact again with her family, which it does toward the end of each child’s stay. At first, Kelli was prepared to fight, but then she changed her mind and decided Issy should come home in time for the school year.

Probably the most frustrating aspect about autism, at least in the US, is how damn difficult it is to get insurance companies to support any kind of treatment. Families can, and do, go bankrupt in the process--to say nothing of horrific incidents like the Stapleton case. In fairness there just aren't that many effective treatments to be had; the one mentioned in the article, ABA, has been shown to (sometimes? maybe?) improve behavior in autistic children, but it's not the kind of evidence that would make an actuary at Cigna say, "Yeah, we'll pay for that."
posted by Cash4Lead at 9:00 AM on October 21, 2014 [6 favorites]


Yeah, sorry, I meant to post the other link. I understand what Kelli did. I can't say that I would have dealt any better.
posted by roomthreeseventeen at 9:02 AM on October 21, 2014 [4 favorites]


I am not condoning it by any stretch of the imagination, but I can absolutely understand the sequence of events that led to that result.

Did you read the allegation in the article that Kelli was thinking about, and even executing the plan, to kill Issy even before she left Great Lakes? The sequence of events where Kelli knows that Issy is a danger to her, and that she is a danger to Issy, but brings her home anyway without telling anyone is where I start to question why Kelli has become a symbol of a failed system, and not an ill woman who reportedly did not reach out in time.

I do feel bad for a woman who had the shit beat out of her on the regular by a member of her family, no matter what inexcusable things she did afterwards.

Not an equal member of her family, but her child. Children do not have a moral, ethical, or societal duty to protect their parents, because we recognize that they do not have the capacity to do so.
posted by muddgirl at 9:04 AM on October 21, 2014 [3 favorites]


I feel bad for the Schizophrenic man killed by the police and not bad at all for the woman who tried to murder her own autistic kid and herself.

I feel bad for the Schizophrenic man who may have felt that getting a cop to kill him was the only option.

I feel bad that the We Have All Failed Sky thread was in 2009, and nothing has changed since then.
posted by Melismata at 9:05 AM on October 21, 2014 [3 favorites]


Not an equal member of her family, but her child.

...who is larger and stronger than her.
posted by roomthreeseventeen at 9:05 AM on October 21, 2014 [16 favorites]


In November, she put up a post about life with Issy called “Domestic Abuse and Why I Stay With My Abuser”: "I’ve been bruised from head to toe, knocked unconscious, suffered injuries that were visible and others that weren’t. I’ve had to make decisions about going out in public because of how my face looked, and what to wear to best cover my bruises and contusions. I’ve had a bank close my account because my signature never matched my signature card … but it doesn’t if your fingers are broken, strained, and sprained.

And If I am killed, I hope I don’t get revived by some well-meaning EMT or ER doctor. I would hate to have to die like that TWICE!"

Kelli’s friend who worked at a nursing school once read the post to a group of her students. When the students thought it was a story about an abusive spouse, they were full of outrage and advice. But when the friend explained that the writer was talking about her autistic daughter, the room went silent.


Who can HONESTLY say they know what they'd do, living a life like this?
posted by showbiz_liz at 9:05 AM on October 21, 2014 [47 favorites]


Please don't try to justify attempted murder here.

Please do not confuse compassion with approval.
posted by Tell Me No Lies at 9:08 AM on October 21, 2014 [91 favorites]


Of course it's not justifiable to murder your [autistic] kid. I feel like there's always a missing term here, though - what does it do to a person to be under incredible stress and in fear of violence for years and to have no hope of it ending ever, since your child will never be able to live on her own and will virtually certainly outlive you? What does it do when it is controversial to say that you hate getting hit in your own home on a daily basis? What does it do to your cortisol levels, your stress hormones, all your mental processes?

If someone were to say off the top of their head "I don't like the idea of dealing with this and therefore it's totally okay to [commit violence]", that's different from "someone has been under mind-breaking stress for years with very little recourse and makes a horrible, monstrous decision". What she did was obviously, obviously monstrous. I just feel like...we put too much confidence in the individual, maybe? Like, you put a woman under destructive stress and in the middle of a crazy contradiction ("I love my daughter and I am responsible for her, but she hits me and has put me in the ER") and then we assume that woman is just walking around whole and completely morally capable.

It seems like one of those things where we are so desperate to maintain the idea that all individuals are strong and super-resilient, and that all stories have explanations about "this person knowingly and with 100% moral responsibility chose to do this horrible thing OR else this person is an innocent individual"...When it seems like the moral is "we want autistic kids to have good lives, so we just fucking can't put their caregivers under insane, destructive stress that is going to break at least a certain percentage of them".
posted by Frowner at 9:10 AM on October 21, 2014 [79 favorites]


Not an equal member of her family, but her child.

...who is larger and stronger than her.


I'm not arguing that Kelli Stapleton and mothers like her should sit and let their kids abuse them. I'm saying Kelli has a duty to keep herself and Issy safe, even if it's embarrassing or shameful or taboo to ask for help. She was willing to sacrifice her life to kill Issy, but not sacrifice her image as a good mother to keep them both safe? Issy apparently has in-home aides now, why wasn't that an option before Kelli went to jail?
posted by muddgirl at 9:11 AM on October 21, 2014 [4 favorites]


What does it do to a person to be under incredible stress and in fear of violence for years and to have no hope of it ending ever, since your child will never be able to live on her own and will virtually certainly outlive you? What does it do when it is controversial to say that you hate getting hit in your own home on a daily basis? What does it do to your cortisol levels, your stress hormones, all your mental processes?

Amen. That was the defense in the famous "The Burning Bed" domestic violence case. And she was acquitted.
posted by Melismata at 9:13 AM on October 21, 2014 [4 favorites]


I do feel bad for a woman who had the shit beat out of her on the regular by a member of her family, no matter how inexcusable the things she did afterwards or how little malice was involved in the beatings and how many extenuating circumstances existed for them.

I mean...I feel bad for a kid whose mom tried to murder her, no matter how inexcusable it is to beat the shit out of someone?

This is just a really upsetting story. This family had a lot of resources. They had aides in the home- Issy had the ONE Medicaid waiver for in-home care available in her state. They had something like eighteen hours of one-on-one care per day. They had seven months of residential. The family was warned to expect behavioral regression in the early weeks. I don't feel that they're the "underresourced" or "abandoned" family most people assume them to be.

One thing I often think about is...people attribute Issy's aggression to her autism, and say Kelli was just the easiest target. But I wonder a lot if her aggression was related to having a parent who wanted to kill her and trying to communicate that she was scared of her mom? Because it turned out she would have been right to be.

That's absolutely my opinion, but one thing I think is more mainstream is that it was super upsetting to read Kelli's thoughts that the "real" Issy wouldn't have autism and would speak in her "real" voice. Like...she literally thought there was a non-autistic Issy trapped by autism and that she had to destroy the village in order to save it.
posted by Snarl Furillo at 9:14 AM on October 21, 2014 [10 favorites]


Issy apparently has in-home aides now, why wasn't that an option before Kelli went to jail?

I'm wondering this too, but I can't help but think the answer is "because it was assumed that Kelli would handle it because She's The Mom." Even though she obviously didn't have the ability to deal with it.
posted by showbiz_liz at 9:14 AM on October 21, 2014 [20 favorites]


OK, Snarl Furillo's comment is that they did have an in-home aide, which is a detail I somehow missed.
posted by muddgirl at 9:16 AM on October 21, 2014


If someone were to say off the top of their head "I don't like the idea of dealing with this and therefore it's totally okay to [commit violence]", that's different from "someone has been under mind-breaking stress for years with very little recourse and makes a horrible, monstrous decision".

I have an autistic, sometimes abusive child. He's 12, and the mind-breaking stress doesn't really let up. He's almost as tall as I am and strong enough to hurt me if he wants. If I felt that I were at a breaking point where it was starting to seem like a good idea to commit murder to get out of this situation, I would call 911 on myself as the person who's the danger to herself and others. Even if they decided I was an unfit parent and took him away, that would be better than him being dead.
posted by Daily Alice at 9:19 AM on October 21, 2014 [27 favorites]


Yeah, they definitely did. Kelli says in the article that she gave them the day off the day of the murder-suicide attempt, and she posted in her blog with some excitement about their Medicaid waiver.

I feel like there's always a missing term here, though - what does it do to a person to be under incredible stress and in fear of violence for years and to have no hope of it ending ever, since your child will never be able to live on her own and will virtually certainly outlive you? What does it do when it is controversial to say that you hate getting hit in your own home on a daily basis? What does it do to your cortisol levels, your stress hormones, all your mental processes?

I obviously do not feel a lot of personal sympathy for Kelli Stapleton, but I do think her multiple concussions should have been a factor in resolving her legal case. Concussions are significantly associated with cognitive impairment, and I think it's likely (and I should probably try to find more sympathy in my heart) that Kelli was suffering from some level of cognitive impairment and difficulty with impulse control.
posted by Snarl Furillo at 9:20 AM on October 21, 2014 [15 favorites]


The sequence of events where Kelli knows that Issy is a danger to her, and that she is a danger to Issy, but brings her home anyway without telling anyone is where I start to question why Kelli has become a symbol of a failed system, and not an ill woman who reportedly did not reach out in time.

I thought the reason she brought Issy home was because their health insurance was no longer willing to pay for inpatient care?
posted by poffin boffin at 9:20 AM on October 21, 2014 [12 favorites]


The lack of cooperation from the superintendent sounds like grounds for a lawsuit against the school district, but would have easily cost Issy's father his job.
posted by dr_dank at 9:20 AM on October 21, 2014 [3 favorites]


I thought the reason she brought Issy home was because their health insurance was no longer willing to pay for inpatient care?

Yes, that is stated in the OP.
posted by roomthreeseventeen at 9:21 AM on October 21, 2014 [1 favorite]


Tragic, from every angle. A very sick child whose illness makes her physically abusive, and a mother who is psychologically unable to cope with that kind of stress.

I can't wait for the day when we can look into every zygote with every known combination of developmental disability and repair that disability before the child is born.
posted by Vibrissae at 9:22 AM on October 21, 2014 [1 favorite]


why wasn't that an option before Kelli went to jail?

Families that don't have in-home care often don't because of the cost. It's hard to get approval for them, and harder still to pay out of pocket for good ones. Also, when I worked at a childcare facility for non-neurotypical kids, it was not at all unusual to have high turnover in aides (who are generally paid very low wages) at the best of times, and when a family member is violent, it's even harder to keep qualified people in the position.

I don't in any way condone what Kelli did, but I do understand how she got there. Have a violent child isn't like having an abusive spouse - you can't just DTMFA. You have to stick it out, and (like spousal abuse) often other people -- even close family members -- just deny what's going on or don't want to know. I certainly know of families who would reach out again and again and again for help, only to be repeatedly rebuffed, until things got so desperate that law enforcement had to step it. It shouldn't be that way, but it is.
posted by anastasiav at 9:24 AM on October 21, 2014 [10 favorites]


I thought the reason she brought Issy home was because their health insurance was no longer willing to pay for inpatient care?

I was trying to stress the second part of that sentence - without telling anyone that she was suicidal/homicidal. If Kelli was telling people that she was going to kill herself and Issy, and over her objections Issy came to live in the same home as Kelly, that's a different matter. I would have liked more interrogation on that aspect in the NY Mag article, honestly. In hindsight Kelli was shouting that she was a danger in every blog post she wrote, but it's extremely difficult to parse tone. When Kelli says, "I want to die, but I can't while Issy is alive," is she talking in metaphors or is she serious? Did she express these thoughts to friends/family members? Did they laugh it off?
posted by muddgirl at 9:26 AM on October 21, 2014 [5 favorites]


But I wonder a lot if her aggression was related to having a parent who wanted to kill her and trying to communicate that she was scared of her mom?

Lots of loving, caring parents of autistic kids find themselves being physically attacked by those kids. It's not some freakishly rare aspect of autistic behavior that only occurs if the parents are somehow bad people.

Raising an autistic child is, in most cases, an incredibly trying, incredibly challenging thing to do--even if you're getting all kinds of support. I don't think any of us knows, without having gone through it ourselves, how we would bear up under those challenges. It's facile to say "well, it's obviously wrong to kill your child." Yes, of course it's wrong. But any of us can end up doing something morally wrong under sufficient duress. It's morally wrong to physically attack your mother, come to that--but we don't find it difficult to summon compassion for the person struggling with the challenges of autism who finds themselves incapable of simply "choosing" not to do that.
posted by yoink at 9:26 AM on October 21, 2014 [28 favorites]


I don't in any way condone what Kelli did, but I do understand how she got there. Have a violent child isn't like having an abusive spouse - you can't just DTMFA

Well, many, many parents used to institutionalize children like Issy. Now, it's expected that you raise the child and keep them home with you through adulthood.
posted by roomthreeseventeen at 9:27 AM on October 21, 2014 [9 favorites]


Yes, that is stated in the OP.

I know, because I read it.
posted by poffin boffin at 9:28 AM on October 21, 2014


In hindsight Kelli was shouting that she was a danger in every blog post she wrote, but it's extremely difficult to parse tone. When Kelli says, "I want to die, but I can't while Issy is alive," is she talking in metaphors or is she serious? Did she express these thoughts to friends/family members? Did they laugh it off?

Yeah, I feel like people just assumed she was being dramatic (which must be agonizing in retrospect), especially her mother in law who seems to feel that she masterminded this entire plan from the day Issy was born.
posted by poffin boffin at 9:29 AM on October 21, 2014 [12 favorites]


Yes we need to get realistic about the fact that ongoing services to people who will not be getting better needs to be funded. Not everyone can get better and they still deserve a safe environment to be supported in, and caregivers deserve services and resources to protect them from the trauma of exposure to violence and aggression on a regular basis. We also might want to look at caregiving work with such high cost to physical and/or mental health might should be reduced to smaller hours or mixed up with other forms of work such that people who do bravely take on these kinds of tasks for their work are getting breaks from it and allowed to persue and develop other forms of work that will not be so damaging.

As it is caregiving work that involves these risks is often very low paid AND damaging to staff; which also leaves them in a worse position to provide quality care and can worsen behavior of those they are providing for.

If we are to acknowledge that autism can cause teens and even adults to be violent and it is not their fault in any way- we can also acknowledge that trauma and PTSD can alter the brain functioning of some people and also cause violence that is not their fault.

In fact if we want to be truly accountable, we should start acknowledging that a large portion of criminal behavior can be tract directly to child abuse, poverty, failing education systems, and poor rearing conditions. I'm not going to deny that it's possible for in tact healthy people to choose to be assholes, I just think often the in tact healthy people choosing to be assholes are more often than not the nice people who are perfectly capable of doing more to improve the system as a whole, but don't. Perfectly nice friendly people can be monsters in the ways they abandon those in need and justify it and then shame those who crack under the terrible conditions they are DELIBERATELY left in by the rest of societies choice to abandon them.

It's often that kids behavior is a reflection of needs not being met in the home, or even needs that were not being met in the womb. Some children are resilient enough to survive their parents sins in health and some are not. Most parents have faults and not all of their children suffer so deeply for them. So even when children are suffering because of parents behavior or emotional problems (or lack of commitment to fully take on the task of parenting and connecting to their most loving self) we still need to get resources to the family and children. I agree that it's worth considering why some families who have access to services might not use them, or might not understand how much support they need to be getting for their own issues to create a safe loving presence for their children.

I can remember seeing this one autistic child who was non-verbal and afraid of sounds and eye contact get screamed at, in that sort of booming raging voice that fills the room for dropping his sippy cup. There are reasons some children shut down the energetic issues and behaviors of their parents that can be happening even in the womb. And it IS very hard to figure out how to share this information with parents, most careworkers can see it, but have very little power to help parents.

And again, what issues did the parents face in their environment, or what damages may have happened to their brain development or stress levels over THEIR development, that might have weakened their ability to be a healthy emotionally safe and nurturing parent? We need to help parents, and we need to findways of opening the doors for parents to get the help they need..... and identify they need it. A large part of it is economical-- making sure the resources are there-- some of it is educational- making sure the resources are evidence based and humanistic-- but there is also a space of trying to help parent overcome obstacles they have to seeking help that IS there-- and knowing why they resist; designing programs to help parents overcome that resistance without placing so much emphasis on shame or guilt that it drives people further from doing the right thing (but still creating the space to consider what the right thing might be).

I think there's a space for actively educating parents what to look for in terms of harsh or disconnected parenting- or that they may be losing control of their stress levels, and educating them about where to get resources if this happens. For this to work the resources need to be there for parents who are overstressed and may need extensive services- financially accessible to everyone, and parents need to know they are there BEFORE the crisis occurs that they need to reach out for help about.
posted by xarnop at 9:31 AM on October 21, 2014 [15 favorites]


I have an autistic, sometimes abusive child. He's 12, and the mind-breaking stress doesn't really let up. He's almost as tall as I am and strong enough to hurt me if he wants. If I felt that I were at a breaking point where it was starting to seem like a good idea to commit murder to get out of this situation, I would call 911 on myself as the person who's the danger to herself and others. Even if they decided I was an unfit parent and took him away, that would be better than him being dead.

What I - as an outsider, but someone who did get really fucked up by years of ongoing fears of abuse and violence - worry about isn't so much "all parents who are under stress will do [bad thing]" but that at least a small percentage of parents who are under terrible, terrible stress will be, for whatever reason, unable to recognize and act on the fact that they just can't carry on and it's an emergency. I guess what I come away with here is that the lives of children should not depend on the ability of 100% of caregivers to stand up to a very difficult situation.

This strikes me as particularly true because it's not as though only particularly resilient people have violent autistic children - people who are not very resilient have them; people who probably wouldn't have had kids at all if their culture had offered that option have them. People who have illusions about parenthood which would have been crushed by any kind of parenthood have them. So expecting all caregivers to be very resilient and no caregivers to be weaker or more depressed or more prone to bad choices...that would only make sense if there were a screening process for the caregivers. Autistic kids' wellbeing should not depend on having a very resilient parent.
posted by Frowner at 9:32 AM on October 21, 2014 [43 favorites]


Autistic kids' wellbeing should not depend on having a very resilient parent.

Yes yes yes. The kids deserve better. It's not about coddling parents who want to murder their kids, it's about recognizing that the mental and physical and financial ability of many families is not sufficient to the task of caring for kids with severe disabilities.

And if you want to take the tack of believing that regardless of stressors, a parent who acts this way is irredeemably bad and would have been so in any situation, then we still need that approach, to catch/reach those parents most likely to mistreat their disabled kids. And get those kids into a safer situation.

The mistake is in placing the interests of the kids and parents in opposition. They aren't. Issy isn't served well by what's happened to her mom, any more than her mom is. Helping her mom (or having helped her earlier) would not have hurt Issy. It would have helped her too.
posted by emjaybee at 9:39 AM on October 21, 2014 [17 favorites]


I can't even imagine at all having to live every day with my child, whom I love more than myself, knowing that I can't reach him verbally or understand (or even guess) what he's thinking and that he's likely to physically lose control and assault me.

My friend does, though. She has 2 sons with autism, her oldest is at least verbal and toilet trained, but her youngest is 12 but is non verbal, unable to be toilet trained or cut his own food or dress himself. He's also 5'8 and nearly 270 pounds. She's a single mother (her husband left when the youngest son was diagnosed with autism, saying he couldn't handle 2 defective kids) but she can't work because there's nobody that is willing to provide care for 2 profoundly disabled children. She does it ALL by herself, with occasional respite from her father. Her ex husband's wife doesn't want the boys around their new family.

My friend is strong. Far far stronger than I am. She's called me crying while she sits outside her house hiding from her son because he's angry that she locked up the refrigerator. I've gone over and helped her clean up the house he's destroyed while he was mad and ranting until he exhausted himself. I've sat with her while she cried that even in the special school the boys go to, her older son feels alone. She knows her younger son is angry and frustrated that he can't communicate, but she's been turned down for a grant for a device that will help him put his thoughts into words.

But her biggest fear? The thought that makes her cry the hardest and shake the most inside? It's not knowing that eventually they will have to live in group homes or an institution that can provide the care that they need. It's that when she and her father are gone, nobody will love her children.
posted by hollygoheavy at 9:39 AM on October 21, 2014 [55 favorites]


I guess what I come away with here is that the lives of children should not depend on the ability of 100% of caregivers to stand up to a very difficult situation.

I agree, and I do think this has implications that are more widespread than just the parents of autistic children (I don't have the numbers but I'd bet most children who are murdered by their parents are neurotypical and physically abled), but I don't personally know what the solution is. A better-funded, more-empowered child protective services? Or even adult-protective services? Mandatory ongoing family counseling for all parents? Otherwise we are just accepting that some kids will die.
posted by muddgirl at 9:41 AM on October 21, 2014 [2 favorites]


Please don't try to justify attempted murder here.

Children do not have a moral, ethical, or societal duty to protect their parents, because we recognize that they do not have the capacity to do so.

This has nothing to do with being scared, angry, desperate and violent after repeated violence from them. No one is trying to justify the mother's actions on moral, ethical or social grounds- just that they can understand how a bad situation can spin out of control. This isn't the same as justifying, excusing or absolving. Stapleton is in jail already, we can take a moment and think about this beyond the "she's a child!" gut reaction.
posted by spaltavian at 9:43 AM on October 21, 2014 [5 favorites]


muddgirl: I don't personally know what the solution is.

Unfortunately we'd have to start by eradicating the Boostrap Mindset, which is never going to happen. We don't help one another (and we often don't ask for help) because that's Not How It's Done. Our society is too many steps away from even being near ready to maybe think about considering what it would take to begin to imagine a solution.
posted by tzikeh at 9:46 AM on October 21, 2014 [9 favorites]


Currently there is a program in my city that provides crisis care for families who are on the verge of becoming abusive or that meet a category of unhealthy parenting that does not fit the level of removal but that merits intervention. These programs are designed for parents who can identify they are overwhelmed and need help, and services involve counseling, addressing the parents past or current issues and childhood environment, and reframing and educating what healthy parenting looks like including challenging the harsh parenting model and providing a model of warm and consistent care.

Don't think things are not possible, that will stifle willingness to take whatever actions are possible. Things can and do change and we will need every good heart to take whatever action they can to make such things happen.
posted by xarnop at 9:48 AM on October 21, 2014 [6 favorites]


but that at least a small percentage of parents who are under terrible, terrible stress will be, for whatever reason, unable to recognize and act on the fact that they just can't carry on and it's an emergency

And even if they do realize this, even if they do dial 911 and say "I'm scared I'm going to hurt myself and my unintentionally abusive and violent autistic child," what is going to happen? What government agency is going to step in and say "even if you can't afford it, even if your insurance no longer cares, we will help you get your kid back into an inpatient program, we will help take some of this burden, we will protect your child not just from you but from an uncaring system which would, 100 years ago, have locked her in a padded room for the rest of her life"?
posted by poffin boffin at 9:48 AM on October 21, 2014 [30 favorites]


Agencies might not have been able to put Issy back in a program, but they could have given help to Kelli. Kelli clearly needed respite and counseling. Removing Issy from the home (or killing her) is not the only way to provide that respite. Focusing on Issy as the sole source of the problem is one of the reasons I'm so frustrated by ways this story is sometimes framed.
posted by muddgirl at 9:51 AM on October 21, 2014 [4 favorites]


But her biggest fear? The thought that makes her cry the hardest and shake the most inside? It's not knowing that eventually they will have to live in group homes or an institution that can provide the care that they need. It's that when she and her father are gone, nobody will love her children.

posted by hollygoheavy


What's the opposite of "eponysterical"? Eponytragic? Man, I need to go lie down after that.
posted by Slap*Happy at 9:52 AM on October 21, 2014 [2 favorites]


We don't help one another (and we often don't ask for help) because that's Not How It's Done. Our society is too many steps away from even being near ready to maybe think about considering what it would take to begin to imagine a solution.

Which is compounded and made even more awful by the countervailing fantasy/myth that the US is a society that does pull together and help one another out when needed, and that all would be good and God would provide if we just stepped up and asked our neighbors and churches for sustenance and support and stopped asking for more money for social services.
posted by blucevalo at 9:53 AM on October 21, 2014 [6 favorites]


Back in the mid 1960s my older mentally ill brother stabbed my mother. I had come home from school and as would often happen, my mom asked me to run up to the local grocery store to pick up a few items. On this occasion, being a whiny 4th or 5th grader, I had a fit and made a big case out of it. My brother witnessed the spat. Things calmed down a little and about half an hour later I heard my mother screaming in the basement. I ran down there and saw Jim standing over my mom with a knife. She was bleeding a fair amount (although it turned out the cuts were superficial and not deep wounds.) I whacked my brother in the arm/shoulder area with a quart-sized glass Coke bottle. He dropped the knife and fell to his knees. I was crying, Mom was crying and Jim, he started crying, too. Then he begged my mother to kill him.

Dad stood vigil that night and the next day Jim was institutionalized. It was many years before mom felt comfortable letting him spend the night on his scheduled visits home.

When Ohio de-institutionalized (read de-funded, imo) many of their mental health facilities my brother, while still prone to an occasional violent outburst, was deemed "healthy" enough to hit the streets. It was rough for a few years but over time he became less violent and was able to live in a small apartment by himself with some loose supervision. And that was how he lead his life until the summer of 2001 when he had a heat stroke and dropped dead on the sidewalk.

I was at the folk's house cutting the lawn for Dad when the phone call came. My mother answered the phone. She gasped and set down the phone, yelling for my father. "Jim's dead." It was more than my folks could handle. I had to pick up the phone, get the details, drive up to Cincinnati to the morgue for identification, arrange everything, and clean out my brother's apartment. I spent a lot of that time mulling about my brother's life, about the burden my parents suffered as they undertook to do the right things with Jim and of course, I reflected on my own behavior towards my brother, too.

Moral concerns are important. My parents never abandoned my brother, they did what they could, when they could, for decades. And I suspect that during the darker moments of his life they blamed themselves for Jim's deficiencies. Unfair? Probably. But life is what it is. My mother, who feared her child at some level, was also the first to run to his side on the day my brother broke down, sobbing, as he claimed that the world wasn't fair. Why? Because his siblings had significant others and he didn't. And shouldn't he have one, too? After all, he was the oldest child.

These situations aren't rare, many families have similar storms to weather. And they aren't necessarily tragic. My brother, for the most part, did okay with what little he was blessed to have. But there is more than enough genuine anguish in each of the families which have this particular cross to bear. It's always sad at some level, but it can also call out the best in folks, too.

Eh. Sorry I went on like that.
posted by CincyBlues at 9:55 AM on October 21, 2014 [81 favorites]


Foster care is a pretty brutal place and children who are violent often get abused or even killed by foster providers as well who are also not capable of being assaulted repeatedly and keeping calm and loving and nurturing and sane all along the way. Calling 911 as it is right now, might not even result in anything substantial occurring because reporting yourself prior to a crime doesn't constitute a lot of power for the state to intervene. I do however, believe this could change.

CincyBlues- it's good to hear your experience, and I'm sorry you and your family faced such difficulties. I always appreciate a good ramble from the heart... :)
posted by xarnop at 10:01 AM on October 21, 2014 [1 favorite]


I think the other thing it's important to remember here is that Kelli had two other children, who were also being abused by Issy. It's not just "should you do this to save your own life", it's also about "Can your family have a normal life if this one thing were removed?" She talks about not wanting Ainsley to be hit on her wedding day, for the son to have a girlfriend safely. How Ainsley can't leave the house when Issy wants her not to.

It's an awful choice but not necessarily just a selfish one.

I also wish that institutionalization was still an option for individuals like this. I think the mother and family would have been a lot better off. Instead we assume that parents will just have to deal with this, because after all, they birthed them! But there's no marker for autism, especially not for violent autism. There's no way to know.

I'll also note that if this were her autistic spouse that were beating her, less people would care if he was autistic or not. What do you do with someone who will never understand that violence is not appropriate?
posted by corb at 10:04 AM on October 21, 2014 [23 favorites]


I think we need to realize that The Family as an institution is not the solution for everything, and that sometimes when horrible things happen to people, it's not always because The Family or The Individual has failed.

It's obvious that a lot of Kelli's coping strategies, public persona, writing work, life-mission, etc. was tied up in being The Mother of A Violent Autistic Child. So now we get to have all sorts of discussions about the limits of parenting, family, etc. and her personal failures as a parent (and her husband's personal failures as a father and husband).

I wish society would realize that people like Issy need more than Parents Who Succeed or Fail and Family Homes that Are Safe or Unsafe--they need safe places to live (which may be an institution or a family home) and people assisting and protecting them (doctors, therapists, specialized aides). And sometimes, society and their family members need to be protected from them. And I personally feel that if autistic children had this team and this societal support, they would also be able to have parents that could be *more parental* instead of trying to be health aides, security workers, and psychologists.

I mean, for goodness sake, her mother spent three years trying this incredibly intensive psychological therapy with her (putting her other children into the care of daycare and relatives), and she admits it really screwed up their relationship! But the idea that mothers should do this! We don't ask the mothers of cancer patients to administer chemotherapy, and if they tried to, we would get professionals involved!

We can and should disagree with the ideas of 13th century madhouses or 1930s doctor-knows-best institutions, but I find it mind boggling that contemporary America has essentially endorsed the idea that care for people with mental illnesses and disabilities is an entirely familial matter.
posted by Hypatia at 10:06 AM on October 21, 2014 [29 favorites]


Focusing on Issy as the sole source of the problem is one of the reasons I'm so frustrated by ways this story is sometimes framed.

OH okay, I definitely agree with that. I was looking at it more from a "getting her out of the house (or never having had her return) would have protected her from her mom's descent into murder-suicide" POV.
posted by poffin boffin at 10:07 AM on October 21, 2014 [1 favorite]


I apologize if this is a stupid question, but:

If you are the parents of a severely autistic child, and you realize that you aren't capable of/interested in caring for that child, what are your options?

I don't mean, "What are the best options," I mean what are your options period?

(Please note that this is completely hypothetical: I have no children, I am not pregnant.)
posted by Narrative Priorities at 10:28 AM on October 21, 2014 [10 favorites]


No one has mentioned the previous MeFi FPP about this?
posted by dhens at 10:30 AM on October 21, 2014 [4 favorites]


Corb: I also wish that institutionalization was still an option for individuals like this. I think the mother and family would have been a lot better off. Instead we assume that parents will just have to deal with this, because after all, they birthed them!

Hypatia: I think we need to realize that The Family as an institution is not the solution for everything

Agreed! It seems to be like "you break it, you buy it" in the sense of "you birthed him/her, you bear the consequences." Never mind that, one, there is no way to know if your child will be violent and developmentally disabled until after he/she is born, and two, The Family can't be expected to be the only social safety net.

It's not just autistic kids, either. Who gets the responsibility of frail, demented elders? The Family! Who cares for someone rendered quadriplegic in an accident or by disease? The Family! Not just The Family, but women in The Family. "Just shuffle caregiving needs off onto The Family" seems to be the way we deal with things here in the US. (Not just the US, either - many other countries that don't have a strong social safety net and/or consider disability something shameful and to be hidden operate this way.)

The needs of families like Issy's are so great and the options are so few and so bound up in red tape that I don't know what the options are. Deinstitutionalization worked well for more high-functioning developmentally disabled folks, who now hold jobs, get married and live normal lives in many cases. But the Issys of the world, who will always need tons of hands-on care, are a different story.

The old institutions were snake-pits and awful and it's a good thing that they were closed, but nothing sprung up to take their place - it was all on The Family, and, let's face it, The Family mostly = Mom and Sister(s).

One of the many reasons I never wanted children was that I knew I could not deal with a severely disabled child, and I did not want to risk drawing the short straw, knowing that the responsibility of caregiving would be all mine.
posted by Rosie M. Banks at 10:35 AM on October 21, 2014 [29 favorites]


I regularly work with patients who have severe intellectual disabilities and autism. When I become God-emperor, I will probably start with this population and their families: subsidized therapy and training for the children, highly-paid teachers, respite opportunities for the family, etc. In the meantime, I can find nothing in my heart but compassion and sorrow for these children and their parents - even the parents who make horrible, unforgivable decisions. What a sad story.
posted by a hat out of hell at 10:38 AM on October 21, 2014 [3 favorites]


Institutionalization does not have to be the dark 1960s black hole. It is okay to institutionalize someone when you provide high quality services with the end goal of independent living regardless if that ever happens.

But no one wants to provide long term services. Residential is now that middle ground but if progress isn't made eventually the service will end.
posted by AlexiaSky at 10:40 AM on October 21, 2014 [3 favorites]


I want to add that I've seen men do a yeoman's job of caregiving. There are several here on MeFi. But in the wide world, caregiving is still seen as mostly a woman's job. Hollygoheavy's anecdote of the husband who left his wife because "he could not deal with two disabled children" is one example. Skipping out and leaving Mom to pick up the pieces was a horrible thing to do (not divorcing, per se, but saying "eh, the kids, they are YOUR responsibility!") but it's telling that Dad felt he had that option and Mom did not.
posted by Rosie M. Banks at 10:41 AM on October 21, 2014 [11 favorites]


I want to add we do institutionalize people but we do it in nursing homes. Which isn't an appropriate environment either.
posted by AlexiaSky at 10:55 AM on October 21, 2014 [1 favorite]


AlexiaSky: I want to add we do institutionalize people but we do it in nursing homes.

I'm surprised that developmentally disabled care facilities haven't picked up on the pseudo-extortionary tactics that the nursing home employs: give us all of the money or good luck caring for your demented loved one while trying to work & raise a family.
posted by dr_dank at 11:01 AM on October 21, 2014


I wrote this article fourteen years ago about the overwhelming stress of caregiving, and it pained me to see the Stapleton story come out because it tells me (as I already suspected) things haven't improved. The story that hollygoheavy describes? I've lived that. And the "god only gives you what you can handle"? I've had to bite my tongue so many times.

Please don't tell me that there's a god who sits up in the clouds and doles out circumstances like this to some, while others get rainbows and butterflies. No. That's not the case. If you ever start to say that to anybody, don't. Just go help them with their struggles instead - even a little bit. It would mean so much. Because there are no magic answers for parents like Kelli Stapleton or Dawn Kelso.
posted by tizzie at 11:04 AM on October 21, 2014 [23 favorites]


One thing I've seen in own community is the disparity of services for children with different disabilities. We have friends who have a young child who was born neurotypical, but is brain damaged after having encephalitis at 17 months old. In that case, the parents are still married, they have a neutotypical older child and both parents are able to work because their disabled child is toilet trained and not violent (also, he's only 5 and is very small). He goes to a special school with a 1 to 1 aide, his mom's employer sponsored the family for a Make a Wish trip to Disney World, he just did another Give Kids the World activity on Saturday and has his own iPad and other assistive devices. His parents have employer based health insurance as well as a support system of extended family on both sides as well as friends. Their son is learning things we never thought possible.

In contrast, my single mother friend and her boys are on Medicaid, the school board turned her request down for a 1 to 1 aide for the younger child (I went with her to the appeal hearing where she literally begged in tears for help and was told that there wasn't funding for that level of care in a public school) and Make a Wish stated that since her children didn't have a technically life threatening issue, they weren't eligible for a wish trip. Her whole entire life and world is living with 2 profoundly autistic children. She has emotionally given up after being turned down for the aide for school. Not an aide at home, for the middle of the night bed changes when her son leaks out of his adult diaper, or for her to take her kids to the zoo to see the Christmas lights or to help her figure out her non verbal son has a sore throat and that's why he's been flinging feces everywhere. She does that ALONE.

She feels that even though she has friends and her father, in the end it's just her, alone, trying to give her boys something that looks like a life.
posted by hollygoheavy at 11:17 AM on October 21, 2014 [23 favorites]


Thank you so much for that, tizzie. You tell it like it is. We need more of that, a lot more.
posted by Melismata at 11:20 AM on October 21, 2014 [1 favorite]


Just to say that I am sure the mother planned murder suicide in advance. I believe she also planned a joint appearance on Dr. Phil/Opra/Nerdist Podcast that would [somehow] lead to new resources that would [somehow] solve all their family's problems.

She may have also planned to drop 10 pounds and learn to speak French.

Having crazy ideas doesn't necessarily mean you intend to, or realize that you intend to, act on them.

Her writing and statements are often overblown. I don't know that this means she premeditated this murder (at least not for more than a day or two) in the way someone who kills a spouse for insurance would. (She may have - but I see no way to know.)
posted by Lesser Shrew at 11:22 AM on October 21, 2014 [3 favorites]


I remember a day when I was so overwhelmed that I couldn't stop crying long enough to get dressed. A neighbor came over, saw the state I was in, and basically walked me through the mechanics of washing my face, brushing my hair, cleaning up the worst of the chaos, and putting something on the stove for dinner. Best part? She didn't ask me what was wrong. She just helped me make it better. I couldn't have been more grateful.
posted by tizzie at 11:23 AM on October 21, 2014 [13 favorites]


Sometimes, when speaking to my mother about my Plans for the Future, I tell her that at this point I'm probably not going to have children. I don't have any particular craving for motherhood, and I don't react well to being cornered into situations not of my choosing.

I tell her that, given that I'm barely even interested in having a "perfect" child, it seems completely irresponsible to try for children when there's every possibility I'd end up the parent of someone who's profoundly disabled.

She shakes her head sadly at me and tells me that when it's your own children, you love them so much that you don't mind. She seems to think I'm just pointlessly freaking myself out.

I kind of want to email her this thread.
posted by Narrative Priorities at 11:25 AM on October 21, 2014 [16 favorites]


She shakes her head sadly at me and tells me that when it's your own children, you love them so much that you don't mind.

Oh Jesus Harold Christ, that's not even true of "healthy, normal" kids! Plenty of parents don't love their own children! Grar! "Just have the kid and you will feel this deep surge of unconditional love BECAUSE IT'S YOUR CHILD" needs to die in a blazing bonfire, and I will light the match.

One of the reasons that this myth needs to die is the disservice it gives to parents who have high-needs kids; that love is enough, and that parental love will overcome all obstacles, even a hopelessly inadequate safety net. It's one of the beliefs that is used to justify denying or cutting aid to the disabled, as well as families with children in general. (Cut TANF and food stamps and Medicaid - mom will find a way to care for her kids Because Unconditional Parental Love!)

And, Tizzie, I remember that Salon article from way back. It has stuck in my mind all these years. My heart went out to you then and it goes out to you now.
posted by Rosie M. Banks at 11:50 AM on October 21, 2014 [13 favorites]


"the school board turned her request down for a 1 to 1 aide for the younger child (I went with her to the appeal hearing where she literally begged in tears for help and was told that there wasn't funding for that level of care in a public school)…"

Please God, I hope you recorded that meeting, as is every parent's right in an IEP meeting. Or that you got those assholes to put this disgusting statement in writing on her child's paperwork somewhere. Because not only is that statement a lie on the part of the school board -- I know at least fifteen children who have one-to-one aides in public schools! including my own son! including in some cases in private pre-schools! And most are in one of the most-overstretched school districts in the country, Los Angeles! -- but deciding the level of assistance available for a child based on budgetary issues would make this a slam dunk case in due process if you have a lawyer. And if a school district loses a case in due process, they pay your lawyer's fees, not you.

You do not judge a child's need for assistance on the budget, period. Please tell me she is going to litigate? Please tell me she has an actual lawyer?
posted by Asparagirl at 11:53 AM on October 21, 2014 [12 favorites]


Just have the kid and you will feel this deep surge of unconditional love BECAUSE IT'S YOUR CHILD" needs to die in a blazing bonfire, and I will light the match.

The problem is, sometimes this is true, and sometimes it isn't. Sometimes we do. I did. I was ready to abort and then got this weird biological protectiveness and became a fanatic about my kid in a way that I accept has no logical sense to it. Sometimes we don't.

I think we need to be honest that sometimes it is real but sometimes it isn't and it's a biological thing and not something we can control. It doesn't mean you're bad if you don't.
posted by corb at 12:00 PM on October 21, 2014 [5 favorites]


It is literally impossible for me to make a moral judgement about this. An adult should not have to be the only one responsible for tending to a child that has turned physically abusive, even when that abuse is caused by autism. A mother should not have to worry about the safety of her other children. There should be a system of support to address this, and when you take away or do not provide all options except one that is unsupportable, you wind up with people creating their own options, and, created in desperation and despair, they tend to be extreme.

We can't let families fend for themselves with this. If someone in my life turned violent, I would not have the resources to address it. I don't know what I would do if I were left without any resources or any way to make it end.
posted by maxsparber at 12:08 PM on October 21, 2014 [2 favorites]


In terms of the "why don't they just institutionalize her" question...beyond that fact that these facilities are few and far between and have long waiting lists, there's the grim reality that they are also enormously dangerous places for women and girls. I know a family with a profoundly disabled daughter being cared for at home with much love (there aren't the behavioral issues present in Izzy's case) and their biggest fear is the day they can no longer do this themselves and she ends up in a facility where she could easily be molested, raped, etc., particularly as she is non-verbal.
posted by blue suede stockings at 12:12 PM on October 21, 2014 [4 favorites]


And even if you do manage to get a place you trust to take care of your kid, this kind of thing is often so far out of the financial reach of so many people. And as the article explained, even though the challenges Issy was having in her residential program were totally expected and explained and reasonable by the course of her medical treatment, the insurance company looked at a brief period of setbacks and said "oh well this means we don't have to give you another penny lol sry not sry bye". By the time you get to appeal these decisions, by the time someone at the company reviews the appeal and passes their shitty judgment on your case, then the coveted available space at this institution has gone to some other needy kid and you're back to square one.
posted by poffin boffin at 12:21 PM on October 21, 2014 [2 favorites]


I think we need to realize that The Family as an institution is not the solution for everything...I find it mind boggling that contemporary America has essentially endorsed the idea that care for people with mental illnesses and disabilities is an entirely familial matter.
posted by Hypatia at 1:06 PM


I don't.

Take a look at Home Is Not For Everyone, by Fern Kupfer. In this essay from 1997, Ms. Kupfer followed up on her now-classic (at least, among the families of people with severely disabled members) article Institution Is Not A Dirty Word. I’m particularly mindful of this quote:

“ Years ago, we did put our retarded children "away" -- we knew so little and were ashamed. Then we learned the horror stories of institutional warehousing that resulted from this kind of ignorant social policy. But the progressive backlash that promotes the "home" as some kind of sacred shrine is also hurtful and wrong....

Well-meaning reformers who tell us how terrible the institutions are should be wary lest they become unwilling accomplices to politicians who only want to walk a tight fiscal line. It takes a lot of money to run residential facilities. No politician is going to say he's against caring for the handicapped. But he can talk in sanctimonious terms about efforts to preserve the family unit, about families remaining independent and self-sufficient...

Each child is different. Each family is different. The hard truth is that the home is not the best place for every child. The harder truth is that even if it were, it might not be the best place for everyone else.
(emphasis mine)

When some of the worst abuses were discovered in the institutions for the disabled in the 1970s, there was a big push by disability rights and human rights activists to get disabled people out of those environments and into private homes where they could be cared for by families, or live as independently as they could. There were many people with good cognitive abilities that were able to live on their own with the right support who'd had their rights ignored and been locked away from their families. There were people with only mild cognitive differences who were receiving no education or stimulation, institutionalized and treated as vegetables.

So the activist sales pitch to politicians was "Get the disabled into environments with the people that love them, where they can receive a higher quality of care and even achieve independence! Think of the money that would save you!"

That pitch was true for many, many disabled people. Removed from those awful places, they thrived. But unfortunately, IMO, the baby was thrown out with the bathwater.

There exist many profoundly disabled people who require professional, expensive care-giving 27/7. Their families simply can't afford to pay for that level of care. The insurance companies won't pay for it (for whatever reason, probably tied to profits). And the government won't fund it because they were convinced they wouldn't have to.

So I'm not mind-boggled. Living with families instead of in institutions was held up as THE compassionate, progressive solution for caring for the disabled back in the '70s (it still is for many disabled people). Plus, once you talk the government out of funding something, it's awfully hard to talk them back into funding it again.
posted by magstheaxe at 12:37 PM on October 21, 2014 [17 favorites]


I'm interested in answers to Narrative Priorities question above. If you have a child with severe disabilities, to the extent when you feel you cannot take care of them, are there really no other options beyond being left in the situation? I see people saying that residential care is expensive, but what happens if you go to social services and say, this child is a danger to me/beyond my abilities to take care of, please take them away?

What happens if you walk to a police station, pop the child in the waiting room and say you won't take care of them anymore? Do you get arrested? Do you get sent home with the child and told to suck it up? Do you have to actually neglect/abuse your child before they are taken away?

I mean, how do you remove your own child from your life? Is it even possible?
posted by the long cold night at 12:41 PM on October 21, 2014 [2 favorites]


In two parent homes, one parent has the option of divorcing or simply abandoning the family and not requesting custody of the child in question.
posted by poffin boffin at 12:47 PM on October 21, 2014 [2 favorites]


I was able to find this article about a family who declined to pick up their son from residential care. He became a ward of the state, although the family is still paying for his care.
posted by kitcat at 12:58 PM on October 21, 2014 [1 favorite]


Re removing your child from your life: Nebraska was one of the last states to pass a "safe haven" law; unlike most other states, they did not specify an age for children to qualify. This resulted in a mass wave of abandoned children, many of them teenagers. Parents would abandon their children in emergency rooms and fire stations.

Nebraska's safe haven law soon was amended to apply only to infants.

I found it telling that there were just so many parents who were willing to abandon their children. I'm sure many were just fallen on hard times (2008 was a recession year) and desperate, but I wonder how many abandoning parents had special-needs kids whom they could no longer handle? Whatever the cause, there were a hell of a lot of parents at the end of their ropes, as well as kids for whom The Family did not work out.
posted by Rosie M. Banks at 1:01 PM on October 21, 2014 [6 favorites]


One issue with giving up custody of your child with these issues is that yes, if you abandon them you will likely be arrested for neglect. The other thing is, if you leave your child with social services, where will they end up? These are children who can't be cared for by the typical foster family-they need a family trained in dealing with physically large people who can be violent and often times you don't have the abiity to ask them why they're angry or if something hurts or even physically hug them if they're afraid. If we aren't willing to help natural parents cope with these problems, then we sure aren't going to teach foster parents what to do.

(For the record, I feel I should say that my friend in no way feels like Kellie Stapleton about her sons. She's defeated a lot of the time and exhausted and lonely, but she really does get a lot of love and satisfaction out of being a mother. She also says she has never known what mothering a neuro typical child would be like, so she doesn't feel as much a sense of loss as maybe other parents do.)
posted by hollygoheavy at 1:03 PM on October 21, 2014


This story hits me hard. I recently stopped working as a home care aide for a family with a non-verbal autistic teen. Thankfully, he is a sweet kid with only occasional violent outbursts but a difficult situation to say the least.

When I started the job, I was led to believe that John* could use an iPad to type in lieu of speaking. Facilitated communication, is the term used. Mom would sit or stand behind John holding his wrist or elbow or shoulder, and John would laboriously peck at the keyboard until complete, if slightly askew, thoughts and sentences were formed. With this method and the help of previous aides, John had managed to graduate high school, even excelling in many classes, and was now enrolled in community college on a part time basis. I was assured that with patience and practice, I would be able to facilitate John in his typing, thus helping him live a more 'normal' life.

My duties were to include all aspects of daily life with John. I accompanied him on hikes, took him on outings to fun cultural events, went to class with him and attempted to give him all the well-rounded experiences of a neurotypical individual. All of this sounded amazing and I thought for quite a while that this work was fulfilling a much needed service in today's society. The problem, as I slowly came to realize, was John wasn't capable of typing much, if at all, let alone composing essays and performing statistical calculations, the kind of which he was being required to do for college level credits. In fact, in my whole experience working with John, the only thing I ever witnessed him having a profound and unwavering interest and aptitude for was eating.

I struggled immensely with this thinking it was me who was at fault for not being able to type with John. We worked at it for hours and weeks on end. For months I read everything I could find on autism, searching for the key that would unlock the potential that others had somehow managed to find in this all too easily overlooked kid, in an all too easily dismissed segment of society. Finally, it dawned on me what was going on but I didn't want to believe it. How and why would anyone keep up this ruse for this long and with no foreseeable end?

Looking back, I should have seen it quicker. How can someone capable of communicating about complex issues like John was demonstrating with his mom, not be able to tie his shoe, or undo his belt, or use the toilet, instead peeing in the shower stall? His physical limitations, though real and sometimes troublesome, were relatively minor. I realized it was all an elaborate coping mechanism employed by mom to deal with her reality. It had become, either all at once or slowly over the course of John's life, an all encompassing storyline of their life. Every facet of their life was warped by it.

I still can't wrap my head around the whole situation. I was feeling pressured to complete the course work required of John. I was having to vouch to his professors daily for abilities I never witnessed and certainly couldn't coax from John on my own. Several times mom would have me sit in on meetings with disability coordinators in which John, through his mom, would strategize the best means to pursue his desire of transferring to the prestigious public university nearby so he could fulfill his dream of getting his undergraduate degree. I just sat there, every bit as silent an accomplice as John himself.

Aside from my wife and family and some close friends, this is the most I've spoken about it all. For a long time, I wanted to slap his mom, wake her up, make her come to her senses about the harm and disservice she's potentially causing her son and the autistic community at large. I wanted her to think of the genuine cases of autistic people being helped by technological advancements and how much more difficult their struggle for legitimacy becomes when her coping is finally brought to light. In the end, I couldn't do it. I just quit the job and walked away from it all. I love John and the family and my ultimate conclusion and point to all of this is that I have no way of knowing what I myself, would be capable of doing if John were my son. I hope and pray that if I were in Kelli Stapleton's situation, I would handle it differently, but after having been just a small part of a not so different situation, I will not cast stones.

*Name changed
posted by hangingbyathread at 1:05 PM on October 21, 2014 [37 favorites]


Oh, mercy - I just feel so bad for everyone here. And CincyBlues, wow. You poor thing and your poor, sweet parents. I can't imagine.

I haven't read all of the responses but I stopped when responses vilified the mother. Goodness gracious, we all need to give each other a break and find empathy and compassion. There but for the grace of God go I indeed.
posted by Punctual at 1:08 PM on October 21, 2014 [2 favorites]


She sent her other 12-year-old daughter a poem called “I Did It All for You.”

I feel terrible for the siblings. At least Issy probably doesn't fully understand what happened.
posted by ostro at 1:16 PM on October 21, 2014


That's fascinating, hangingbyathread. Facilitated Communication is written up in more detail in this Skeptical Inquirer piece. You can never tell if its wishful thinkers or cynical hucksters who foist this junk on desperate parents.
posted by dr_dank at 1:35 PM on October 21, 2014 [4 favorites]


I am fed up with seeing hate speech about this.
It is still wrong to murder your autistic children.

posted by w0mbat at 5:25 PM on October 21, 2014 [4 favorites]


> I mean, how do you remove your own child from your life? Is it even possible?

A woman on an an-line support group I used to be part of did this. Similar to Issy, the daughter was being forced to leave a residential treatment facility because of her insurance refusing to pay for it any longer. So the girls parents notified the facility that they weren't going to pick their daughter up. The facility told the state, and the girl because a ward of the state.

The parents loved their daughter and this was heartbreaking for them, but they just couldn't have her live with them any longer.

They were still in touch, knew where their daughter was, visited her frequently, and loved her; she wasn't gone from their lives. But she was gone from their house.
posted by The corpse in the library at 5:39 PM on October 21, 2014 [3 favorites]


W0mbat, what hate speech are you talking about?
posted by Narrative Priorities at 7:37 PM on October 21, 2014


I am fed up with seeing hate speech about this.
It is still wrong to murder your autistic children.
posted by w0mbat at 8:25 PM on October 21


On the other hand, I suppose it's okay if your autistic child murders you, hey?:

...A dispatcher sent three deputies to Trudy's house in Kent. Inside, they found her on the kitchen floor, her face battered and covered with dried blood, her eyes swollen shut. Her head rested in fresh blood. Blood tracks led from her body toward the basement, where they found Sky huddled on a mattress.

As deputies handcuffed Sky, he screamed and thrashed so hard they had to subdue him with pepper spray. Minutes later, he reared back and kicked a deputy in the head, hard. The other deputies pushed him to the floor and bound his ankles and wrists together behind his back.

"Boo-boo," he said, when a detective asked him what happened to his mother. "Band-Aid." "Tummy hurt." Then he sprayed the detective with spit.

Emergency workers took Trudy, still unconscious, to Akron City Hospital. She had massive trauma to her head, broken ribs, a collapsed lung, a damaged eye socket, and bite marks on her face, arms and upper legs.

...Trudy Steuernagel died without regaining consciousness.


You might want to go read "We Have All Failed Sky" really, really closely, w0mbat. Remember that Sky isn't the only severely autistic child out there to put his parents through that, and that not everyone has the emotional stamina to cope with that level of violence even if it comes from their child.
posted by magstheaxe at 8:04 PM on October 21, 2014 [2 favorites]


When I was little, I made all my wishes so that my severely disabled older sister would "get better." (She has brain deformities; she is not going to get "better" as I was envisioning as a kid.) When I got older, I wished for her to always be happy and healthy. (This is still my wish, when I make them.)

These days, I realize how lucky my family is that my sister has the level of disabilities that she does. If she had the motor control to walk or even drag herself out of bed in the night, could we have kept her in the home all these years? Could we have kept her safe? Before she had a feeding tube, she might lose 10% of her body weight during a stint in respite care. How weird is it to be thankful someone you love can't walk?

We have had great social services in Minnesota. Aides were difficult to keep, even though she is relatively small and easy to care for and it was years before we found people who we trusted (as young as elementary school, we were tasked with monitoring the aides, to make sure they didn't hurt and properly cared for my sister). Even with all of us working together, our "easy" case didn't usually feel easy.

I don't know if I'm adding to the conversation, but my heart hurts.
posted by MsDaniB at 8:16 PM on October 21, 2014 [7 favorites]


A 29-year-old woman with schizophrenia, restrained in a wheelchair, managed to send three adults to the hospital in less than two minutes in a nursing home where I worked: the RN had a broken rib, the LPN a concussion, and I had an eyebrow laceration that required a couple of stitches. The power of her rage was unbelievable - she was like a human whip.

Another woman in a different place, the County nursing home, baited a new aide with a foot whose slipper had apparently dropped off. When the aide bent down to put her slipper back on, the woman grabbed her hair and flung her back and forth like a rag doll. Several of us rushed to help. I came from behind her wheelchair and reached around her to grab her wrists and pull them to her body while someone else tried to pry her fingers apart to release the aide's hair - but the woman quickly bent her head down and took a big bite right out of my forearm and literally spit the meat/tissue onto the floor. I let go, of course, and she then managed to thrash hard enough to turn her wheelchair over backwards and then she reached out and grabbed another patient's leg and pulled him out of his dining room chair. Then someone gave her the shot that stopped those violent attacks.

Darren was a 16-year-old boy who was severely autistic way back when, when autism was still the mother's fault - remember those days? Darren was tall, a gangly teenager, though nonverbal, hyperactive, distracted - Darren just lived in a different place from the rest of us, but it was hard on his parents and his brother, obviously. Darren loved ice cream and when he was doing well at whatever he was working on, his mom Gloria would take him to Baskin-Robbins. This day they were waiting for others ahead of them and Gloria was choosing her flavor (Darren always got the same kind - his choice), when suddenly Darren jumped up and grabbed the ceiling fan that was whirring away above. The fan slashed his hand badly, spraying blood all over the customers, the employees and the ice cream. He saw the blood and of course it hurt like four hells and he went completely wild. He ran out into the street and just missed getting hit by a car, the driver of which then jumped out and started screaming at Gloria who was trying to catch Darren. Eventually Darren slowed down and sat down on a curb and Gloria caught up to him and someone called an ambulance and he was fixed up.

My aunt was nearly 90, a tiny wisp of a thing, crippled up with rheumatoid arthritis but still walking. Her adopted son began to chew on her for money to pay his gambling debts; he needed $5K this week, then $10K, then $20K "or they're going to kill me." She was a well-to-do woman, but soon she had to tell him she couldn't do any more for him. He was furious and threatened her, saying that the money she had was supposed to be his, that his father had left it to him, which was absolutely untrue; he'd already received the money from his father and a lot more. My aunt told me she only hoped that "when he hits me he hits me hard enough to kill me because I don't want to open my eyes and see his eyes and know that he just tried to kill me." He was frightening enough that her housekeeper quit and her hospice nurse began carrying pepper spray. It wasn't too much longer that my sweet aunt decided she was finished, quit eating and drinking, and then passed away peacefully, leaving all her "great fortune" to her son. I hope he got a lot of good out of it. I never believed he could be so violent, but I deliberately went to visit them in Tucson and stayed up all night visiting with him and leading him out to talk about his anger and frustration - it was mind-boggling how chaotic his thinking was, how entitled and enraged he was. But NOTHING could be done "until he commits a crime of some kind" per the police.

There is a need for institutionalized care for persons who are dangerous to others, whether they're children or adults. It's pure evil that insurance companies are responsible directly or indirectly for a great deal of this problem.

And I wish Mrs. Stapleton peace. For Issy, I wish a medical answer to emerge that will bring a whole new life to her.

My heart hurts over this kind of stuff.
posted by aryma at 8:45 PM on October 21, 2014 [13 favorites]


it's okay if your autistic child murders you

I'm not sure that in Sky's case the word "murder" is applicable, given his cognitive challenges. Manslaughter, but not murder. And of course it's not okay. It's horrifying.

But I see where w0mbat is coming from re: hate speech. People who comment on this site are usually hell on child abusers. But somehow, when the child is disabled, the rhetoric about understanding and having compassion for the abusers gets ramped up, and compassion for the victim is hardly mentioned.
posted by Daily Alice at 8:45 PM on October 21, 2014 [1 favorite]


Ah, MsDaniB, I hadn't read your comment before I posted mine. Our hearts hurt in unison, I guess.
posted by aryma at 8:47 PM on October 21, 2014 [1 favorite]


My Parents are Dead & My Sister is Disabled by Jeanie, a caregiver for her older sister Edna
posted by Juliet Banana at 9:01 PM on October 21, 2014 [2 favorites]


I'm not sure that in Sky's case the word "murder" is applicable, given his cognitive challenges.

Kelli Stapleton had multiple concussions inflicted by Issy, and she may have undiagnosed mental disorders. I don't think "murder" is necessarily applicable in her case do to her mental and emotional state, especially given that she tried to kill Issy and herself.

And of course it's not okay. It's horrifying.

Is it? Because in every thread about the Stapleton case that's come up on this site, w0mbat has posted an article by the same shrill author proclaiming the same thing, even though no one here has stated or implied that murdering autistic children is the right thing to do. The articles are all about how terrible it is that people are far too sympathetic to a murdering, abusive woman, and how the circumstances that might have had a significant psychological impact on on Kelli Stapleton are irrelevant: she's not just a murderer, but the murderer of an autistic child. And it's said with a tone that implies that this is the worst kind of murderer one can be. Or, at the very least, if you dare to recognize the enormous difficulties that Kelli Stapleton dealt with daily, you must necessarily wish that Issy Stapleton had been murdered by her mother.

Which just leaves me with the impression that if it had been the other way around, and Issy had succeeded in killing her mother, there would be no "It Is Still Wrong To Kill Your Neurotypical Parent" essays floating around the 'net.

But I see where w0mbat is coming from re: hate speech. People who comment on this site are usually hell on child abusers. But somehow, when the child is disabled, the rhetoric about understanding and having compassion for the abusers gets ramped up, and compassion for the victim is hardly mentioned.
posted by Daily Alice at 11:45 PM on October 21


Because (a) compassion for the disabled child is a given in this case, and (b) there are two victims here. Remember, this wasn't supposed to be a murder. This was supposed to be a murder-suicide. There was supposed to be two corpses found--Issy's and Kelli's. People who comment on this site tend to be very compassionate to those who've had emotional breakdowns, and who've felt compelled to take their own lives. Some of that compassion is what you're seeing here.

And please do not mistake our compassion for approval of what Kelli tried to do to her daughter. It is possible to abhor her attempt at murder, while at the same time understanding what brought her to that point in her life.
posted by magstheaxe at 9:33 PM on October 21, 2014 [17 favorites]


I can't blame Kelli. Thinking of it from her perspective, her life (and presumably Issy's and the rest of the family that is also being abused) was going to be nothing but hell with no escape but death. Nothing to look forward to but death. Which would naturally happen a long, long, loooooong time from now, and meanwhile she's trapped in an abusive relationship she can never escape. I don't think any of us can be high and mighty and say we'd never. And frankly, it's nigh-impossible to GET any help at all here, much less enough. And I do think/fear that Issy needs institutionalization given how things have been going, because it's probably too big for that family alone even with aides.

hollygoheavy, I have a friend in a similar situation. I am grateful that in my friend's case, her kids aren't even worse off, and she does have respite care access, so it hasn't gotten too heinous yet. But I do wonder and worry.
posted by jenfullmoon at 11:33 PM on October 21, 2014 [1 favorite]


Reading that article actually made me cry.

The OB kept saying "I'm sure you are worried about autism." We looked at each other and back at OB and said "No?"

My son, before he could walk, would slam his head on the floor over and over. His mother would flip out. I thought it was attention-seeking behavior, but I was always at work and never had to deal with it. The "geriatric" pregnancy had been a huge surprise, coming at a time that absolutely required one of us to work very long hours.

When Boy was about 2.5, his mother and I traded roles. I was sitting on the closed toilet and he was in the bath and He, I guess out of curiosity? squeezed one of his testicles hard. I couldn't do anything to make that pain go away.

So then the new game was Pretend You Want A Hug And Headbutt Daddy In The Gonads. His big little head was right at that level. Everyone else thought it was funny and accidental when he'd knock me down in public. It got to the point where He'd say "Hug!" and I'd say "Fuck you!" if we were alone.

The point where I started wishing for deliverance was when he did that to me while I was trying to get a pot of pasta from the stove to the colander in the sink. I found something deep within myself. If I'd gone down, he'd have had 3 gallons of boiling water dumped on him. Part of me wanted to just dump it and jump away as I fell.

His mom came home for dinner, all bubbly from her meetings and actual contact with other adults and I shut her down and told her what had almost happened and that I had thought about just letting go. She said that she had often imagined a guillotine coming down when he was headbanging.

Boy was havoc in preschool and an inveterate headbutter until the middle of 1rst grade. Wouldn't draw, couldn't write. Everyone was shrieking autism as our marriage broke up. Then something changed. I don't think it was anything we or the multiple therapists did. It was like he woke up one morning, forever changed.

Boy is in my bed, two feet away, with his arms around a large poodle who seems to be into it. Pretty sure he thinks the dog is me, since dog always goes for a vacated warm spot. Gonna get back in there with them.

So yeah, I have mucho empathy for everyone in the article. Many great posts here.
posted by Mr. Yuck at 12:37 AM on October 22, 2014 [14 favorites]


But I see where w0mbat is coming from re: hate speech. People who comment on this site are usually hell on child abusers. But somehow, when the child is disabled, the rhetoric about understanding and having compassion for the abusers gets ramped up, and compassion for the victim is hardly mentioned.

It's almost like it's possible to see a difference between this situation and the typical scenario of "child abuse" most people think about, without approving of either! Calling this hate speech is idiotic.
posted by spaltavian at 4:12 AM on October 22, 2014 [6 favorites]


I COMPLETELY FAIL to see how any of us sharing either our personal experiences with our own children with autism or our experiences as close friends of parents of children with autism is hate speech. I have not seen one comment saying what Kellie Stapleton did was ok. I have seen plenty of comments saying "this is not at all like parenting most children and I understand how hard this life is". Nope, sorry, that's not hate speech at all.
posted by hollygoheavy at 5:25 AM on October 22, 2014 [5 favorites]


Squidalicious: On Autism Murder Apologists

Most autism parents would never even think of harming their kids. Even when times are tough, they know their kids need their love and support, and are their responsibility. But some parents -- due to their own wiring -- may be at increased risk for despicable acts towards their children. When and if that risk is present, you need to ask yourself one final question: Do you want those parents to be constantly exposed to the message that society will forgive them for murdering their autistic children? Or do you want them to absorb that murder is wrong, murder is unacceptable, and that they have other options if they feel they can't continue?

It's pretty hard not to get shrill, not to take it personally, not to feel despair at the constant narrative that murder is "understandable" when the victim is autistic. The attack on Issy Stapleton did not occur in a vacuum.
posted by Daily Alice at 5:39 AM on October 22, 2014


No one who has not tried to physically escape from a situation in which their brain was shutting down from carbon monoxide poisoning can possibly judge Kelli Stapleton's actions once the murder-suicide attempt began. So what if she got out of the van in a mentally diminished state, then went back in? It is neither a rational decision nor indicative of an attempt to fake her own suicide, but rather the impulsive action of a deeply impaired person suffering the onset of brain death. (And ultimately, the gas-filled van and the impossibility of making a safe and rational choice to either stay or go and the inability of those around the situation to empathize sounds a lot like life with Issy. Her poor siblings.)
posted by Scram at 5:59 AM on October 22, 2014 [2 favorites]


Also (sorry for dominating this thread) I haven't seen anyone dismissing Issy Stapleton's rights or the fact that she's a victim. The hard truth is, it's very difficult to know what or how much Issy understands or feels due to her having autism. What I've seen are people who have said that her mother was in a situation that hasn't been acknowledged much until now; that some disabled children are violent and abusive and there aren't a lot of options for parents to cope with it. I think we can all stipulate Kellie was wrong, did a bad thing, did something illegal and heinous and that there should be some sort of repercussions. We also need to start to figure out how to help and support the parents of these children so this doesn't happen again.
posted by hollygoheavy at 6:04 AM on October 22, 2014 [2 favorites]


It's pretty hard not to get shrill, not to take it personally, not to feel despair at the constant narrative that murder is "understandable" when the victim is autistic.

That is not a narrative at all, let alone a constant one. The situation that actually occurred was that someone was being regularly physically attacked their autistic child, and people can understand- not condone, approve, or think okay- that desperation that could make some people feel. I know this is hitting close to home for you, but you've repeatedly distorted what others are saying here.

People are generally pretty hard on domestic violence here on MetaFilter. But if the actual situation was a vet with PTSD who hit their partner in the midst of a panic attack, you can believe there would be people saying the victim should leave them and that they have compassion for the vet who didn't get the help they need. Would those people be pro-domestic violence? Would you accuse them of saying domestic violence is okay if you're a vet?
posted by spaltavian at 6:19 AM on October 22, 2014 [7 favorites]


The hard truth is, it's very difficult to know what or how much Issy understands or feels due to her having autism.

Oh my god, I just can't even. In the absence of knowledge, presume competence. Issy might not understand this dialogue (then again she might!) but there are many, many autistic people who can understand it perfectly well.

What I've seen are people who have said that her mother was in a situation that hasn't been acknowledged much until now; that some disabled children are violent and abusive and there aren't a lot of options for parents to cope with it.

It's acknowledged every single time this situation comes up. The overwhelming media narrative is of compassion and empathy for the parent, along with a side order of autistic lives being less valuable than neurotypical ones.

We also need to start to figure out how to help and support the parents of these children so this doesn't happen again.

I agree completely.
posted by Daily Alice at 6:25 AM on October 22, 2014


That said, I'm going to take a deep breath and do something besides reading Metafilter for a while. I'm not ordinarily the sort of person who digs in and doubles down when Someone is Wrong on The Internet. This topic is bringing up all kinds of emotion for me and I apologize to anyone whose views I've mischaracterized in my posts.
posted by Daily Alice at 6:31 AM on October 22, 2014 [3 favorites]


It seems to me as if what autistic people and advocates for autism are worried about in these conversations might have to do with the pre-existing lack of "normalizing"/positive/complex portrayals of autistic people in our culture, so that it's easy for there to be slippage between "I can see what a terrible situation this is for a caregiver and how someone might make a terrible decision when they're experiencing basically PTSD" and "autistic people who hit are monsters and totally incomprehensible". I don't think anyone in this thread actually means that, but because the conversation is rooted in a culture where there's already few protections for autistic people, there's cultural pressure on the conversation already.

I think it's complicated because there is so much rhetoric around "being a good mother", so it's very difficult to talk about the unusual and terrible pressures on women caregivers without sliding over into assumptions about average parenting situations and without sliding over into the assumption that the "good mother" sacrifices everything for a child, never has failings (or if she does then she is the monster", etc.

Basically, we have two competing cultural narratives that are both really bad - "autistic people, especially ones who hit, are monstrous" and "mothers who have failings, limits or needs and who are not able to cope with really hard stuff seamlessly are also monsters". It's like, who shall we demonize? And there are real material consequences for being demonized.

Which is why I think that the whole debate about individual blame in these situations is...well, it's something that we by definition can't know about at the individual level. Maybe Kelli Stapledon was actually in her heart a selfish and bad person who just wanted to get rid of Issy. I don't know! How the hell would I know? I'm not a telepath. I'm not even a trained investigator or an investigative journalist. I don't know Kelli Stapledon. I didn't see the daily life in that home.

The only thing I can know is that - in the aggregate - it seems likely that removing what are obviously well-known as unbearable pressures on caregivers would dramatically improve outcomes for everyone. Monstrous parents do exist, but it's a lot easier to sort things out, morally speaking, when it's clearer just what they are consciously choosing to do.
posted by Frowner at 6:36 AM on October 22, 2014 [6 favorites]


I wanted to add a few more thoughts yesterday but I was pretty worked up; my emotions were churning. They still are. I'd just like to say that there is a lot of wisdom expressed in this thread. And for those whose circumstances in life include having to cope with mentally ill family members, fwiw, big-time platonic love.

And this, too:

My heart goes out to the Metafilter community for being both compassionate and loving--while still being able to dig deep and work through many differing points of view. I think that's a rare set of qualities to find in this new digitized world.
posted by CincyBlues at 7:37 AM on October 22, 2014 [3 favorites]


Oh, and caregivers, too.
posted by CincyBlues at 7:38 AM on October 22, 2014 [3 favorites]


Agreed. This thread dredged up a lot of sediment from the bottom of my emotional pond yesterday. I hope everyone who has read what I've written understands that I've never been an advocate for harming anyone. I hope that - at one point, at least - I was a voice for the tremendous need for more support for individuals with autism - as well as other disabilities - and their caregivers.

Now that my sons are adults and are no longer in my care, it's painful for me to think back to our struggles. I have moments frozen in my mind - happy moments, funny moments - that I save and keep, and I confess that I try to let the bad days fade away.

My hope, futile or not, is that young parents now not have to face their struggles without resources, so that no one feels desperate and helpless and alone. I wish I could be a stronger, more organized advocate for that, but so far, I haven't got that in me.
posted by tizzie at 7:57 AM on October 22, 2014


Something I should have included above was that Boy reacted very badly to his first immunization. Full blown seizure on the changing table an hour later. I am not saying anything about a connection to his later behavior, but it sure was in the back of our minds during "The Troubles."
posted by Mr. Yuck at 8:22 AM on October 22, 2014


Oh my god, I just can't even. In the absence of knowledge, presume competence.

So much good, and so much harm, has come out of that slogan.

Competence has been presumed. That's part of the problem. Presuming competence is why there are so few organizations that can help Issy and other people whose disabilities prompt violent outbursts. They've been judged competent enough to live at home and be aided by their families. But in reality, Issy isn't competent enough in many of the areas where it really matters (like not beating the stuffing out of people), and her disability is overwhelming her family.

ARi Ne'eman (president and co-founder of the Autistic Self Advocacy Network) told the press that it's important for Stapleton's case to be treated the same way it would be if the victim wasn't disabled. If that were actually the case, if competency was presumed? Things would have never gone this far, because Issy Stapleton would be in juvie right now for assault. I don't think that's what Ne'eman meant, but that's likely what would've resulted. Assuming competency isn't all it's cracked up to be, not with certain profound disabilities.

It's acknowledged every single time this situation comes up. The overwhelming media narrative is of compassion and empathy for the parent, along with a side order of autistic lives being less valuable than neurotypical ones.

Wait, are media outlets actually saying this? Or is something that's being inferred by people involved in autism advocacy?

I'll state it again for the record: openly acknowledging the difficulties and dangers of caring for someone whose disability compels them to violent action is not the same thing as believing that the lives of people with disabilities are less valuable, that the murders of people with disabilities are justified, or that people with disabilities are better off dead.

I think frowner has the right of it: people are conflating the "how-can-we-best-support-autistic-people-with-violent-compulsions" conversation with the "lack of normalizing portrayals of autism" conversation. And it's a real shame, because I think that conflation contributes to suppressing real, substantive conversations about how to best support folk living with the sorts of disabilities that compel them to violent action.

I wish someone could tell me about a group or organization or whatever that advocates for families like Issy's or some of the people who've posted in this thread. A group that lobbies Congress and state legislatures, maybe, for funding for good residential facilities that can support people whose disabilities compel them to violence. I want to join. I want to send them money. I want to call my congressperson. I want to do something, and I don't know how....
posted by magstheaxe at 9:59 AM on October 22, 2014 [8 favorites]




> funding for good residential facilities that can support people whose disabilities compel them to violence

Even that is not without controversy. There's an institution in my town that some people hate and some people want to keep open. It has about 200 residents.

On one hand, nobody should have to live in an institution, and the money should go towards small group homes. On the other hand, some people do better in the old-fashioned style of institution; they're too aggressive for the staff to handle in a smaller home.
posted by The corpse in the library at 10:49 AM on October 22, 2014 [2 favorites]


On one hand, nobody should have to live in an institution...


In an ideal world/heaven/utopia, they wouldn't. However, no one should have to suffer multiple concussions and other injuries at the hands of another individual, over a period of years, either; also wouldn't happen in an ideal world/heaven/utopia. Trouble is, we don't live in that glorious, utopian world.

In a small group home setting, would you have Issy sharing the home with five or six other kids who are often out-of-control violent? Really? Could YOU run that home? Just for information - when I've worked with people with violence issues in a nursing-home setting (usually people in their 20s and 30s), when one "goes off" the others get agitated and may very well react the same way - they have to be watched extra carefully.

Private homes are full of objects that can be hazardous to a violent person/child and also hazardous to others when there's an episode of slamming things, throwing things, pushing and hitting others, chasing or running from others - glass windows, sharp corners on furniture, anything glass that can be broken, silverware, even knick-knacks thrown with force can cause severe injuries. Does that sound like an issue that's so rare it's silly to even consider it? Think again. I once saw a pretty nasty head injury in a small child whose mother threw a can of soup at his father, the father ducked instinctively, and the soup can hit the child in the forehead. A soup can! No one in that family was inclined to be violent and both parents were devastated about what had happened - I'm certain neither of them every threw another thing in their lives.

For the very safety of all persons when one of them is frequently enraged and uncontrollably violent, it's sad but true that an institutional environment is best. Nurses have injections close at hand if they're needed, there are multiple adults who are physically able to restrain the person, and there are few objects in the immediate vicinity for throwing or breaking.

I want to say LOUD AND CLEAR here that most autistic children and adults do not belong in an institution - they do best with their family in their own home. Most. But overtly violent and dangerous people of all kinds belong out of situations in which they endanger others. There are levels upon levels of autism and levels of control and lack of control with medications for schizophrenia and psychosis and autism - every case is its own story. Black and white doesn't work.

Issy should have been in an institution and it's inexcusable that she wasn't.
posted by aryma at 5:05 PM on October 22, 2014 [8 favorites]


Deinstitutionalization was supposed to be accompanied by funding for a robust community mental health network providing intensive outpatient psychiatric, case-management, vocational, and other support services for community members who needed it. The idea was not supposed to be institution vs. nuclear family, but institution vs. rich web of community support. Somehow, however, in the Republican sleight of hand pushing deinstitutionalization, funding for the community mental health centers never materialized.

My heart absolutely broke reading about how Kelli spent three years being Issy's ABA therapist. As others have said, that should not be a parent's role; that's not good for either parent or child. We need so much more community support for everyone, and especially for individuals and families dealing with mental illness and neurological differences.
posted by jaguar at 8:31 PM on October 22, 2014 [6 favorites]


> In a small group home setting, would you have Issy sharing the home with five or six other kids who are often out-of-control violent? Really? Could YOU run that home?

I guess you were asking me, since you quoted my comment. I'm not sure why it matters, but no, I could not run that home.
posted by The corpse in the library at 8:41 PM on October 22, 2014


there are multiple adults who are physically able to restrain the person, and there are few objects in the immediate vicinity for throwing or breaking.

A big issue now, of course, is that these places do exist, but with not enough staff. My mother was a nurse in a large psychiatric hospital who was punched in the face by a patient when there weren't enough other staff around. In the past few years, a group home worker, a woman in her 20s, was killed when when she was the only person on duty in Revere, MA. Didn't follow the case closely, but I hope that her family sued the shit out of whatever for-profit entity that was running the place.
posted by Melismata at 11:17 AM on October 23, 2014 [1 favorite]


We've lost another one.

London McCabe, aged six, autistic. His mother threw him off a bridge in Oregon.

"[Police] said it was unclear what happened in the hours before the tragedy, but the mother was coping with a series of challenges: caring for a non-verbal and autistic child, a health crisis that left her husband fighting for his life and the death of her father...

"On a fundraising website set up by family and friends, Jillian McCabe wrote that her husband Matt had been diagnosed with MS and had a mass in his brain stem — going from acting as 'the sole breadwinner and provider to not' in a matter of two weeks...

" 'I am taking care of our son London and now Matt full-time,' she wrote. 'I am applying for any and all assistance available… I NEED YOUR HELP. I love my husband and he has taken care of myself and my son for years and years and now it's time for me to take the helm," she added. "I am scared and I am reaching out.'


Like Kelli Stapleton, Jillian McCabe blogged about caring for London at her (now defunct blog) AutisticLondon.com. You can see sections of it via the Wayback Machine.
posted by magstheaxe at 9:21 AM on November 4, 2014 [1 favorite]


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