A daughter lies unconscious in a hospital.
Her doctors fear she will have permanent brain damage as the result of carbon monoxide poisoning.
The mother is charged with attempted murder.
We are told the daughter was aggressive.
We are told she was Autistic.
I cannot stop thinking about Issy. As I write this, she is lying in a hospital bed unconscious. I cannot stop picturing a photo of her laughing, her blonde hair glimmering in the sunlight, her head thrown back, a look of joy on her face.
And I am angry.
We live in a society where news articles with titles like “More U.S. families in the grip of autism” are commonplace. People equate autism to cancer, refer to autism as a burden, a crisis, and an epidemic. The Judge Rottenberg Center is allowed to remain open despite their continued use of electric shock as a viable “treatment”. We live in a society that has allowed schools to put young students in isolation rooms, “Physical restraints are becoming more prevalent in public schools.” The word “treatment” is used loosely and covers a great many behavioral plans, some which allow Autistic people to be abused and even killed.
We have succeeded in dehumanizing a segment of our population. A segment of our population that includes my daughter.
Anger doesn’t begin to cover what I’m feeling.
Bodies and Behaviors – by Michael Scott Monje Jr. at Shaping Clay
It is Wrong to Murder Your Autistic Child – by Judy Endow at Ollibean
To Issy Stapleton, with love. by K. at Radical Neurodivergence Speaking
Walk in Their Shoes by Paula Durbin Westby Autistic Blog
Blaming the Victim: An Autism Parent Story – That Autistic that Newtown Forgot
Media Throws “Autism Parents” Under the Bus Again – by Ibby Grace at Tiny Grace Notes (AKA Ask an Autistic)
I can remember very clearly one night when my then 3 yr old son was in a TERRIBLE RAGE that had lasted 3hrs and continued another 4 until he passed out from exhaustion. I looked like I’d been in a bar brawl and nothing that normally soothed and calmed him was working. I felt that pain deep in my chest—the overwhelming love for him and the all-consuming frustration and exhaustion that came from being his mom. I knew I was at a breaking point and at 3 am reached out to the ONE friend I had. No questions asked, he came and sat in the room with my raging child, taking the abuse, while I crawled fully clothed into the bathtub and bawled my eyes out.
I was fortunate that night to have a person that I could reach out to; a beacon of light. It wasn’t always that way; and there will be times in the future that it won’t be again. I pray everyday for his continued growth, but dread the days that puberty hits and the inevitable rages start again. I pray that I can hold on to the memory that it shall pass and he will return to the beautiful, loving child that I’ve always loved. I pray that society will have a major revolution in the way they see our children; in the way they treat them; in the way they turn a blind eye to the mental defeat faced by parents on a daily basis.
My heart breaks for Issy’s mom–because that desperation; that defeat is a feeling we all know to well—and all society focuses on is a parent tried to end her child’s life. It is so much more than that. Don’t look at us with pity or disdain—look us in the eyes and tell us it will all be ok–tell us you understand, even if you don’t. make us feel like there are people who care. And those in the Autistic community—pay attention to our peers—give them that support daily, even on days when you want to quit.
My love to you all!!!
Misty – I am very sorry you had such a difficult experience with your son; I hope you never have to have another one that’s so difficult and painful again. Bless you for reaching out to your friend the way you did.
We can’t always count on people responding quickly or readily or ideally when we reach out. But we can always reach out, repeatedly, until someone helps with our situation. And that is always a better option than murder.
I am sure that Issy’s mom lived a very complicated life. But I don’t see in the story of this tragedy the evidence that she did not have support or respite, that she tried and tried and nobody ever responded to her pleas for help. I don’t see evidence that she exhausted every possible pathway to keep herself and Issy safe from harm. I don’t see that she lost control in a moment of extreme distress and responded unthinkingly. To the contrary, the way she (allegedly, I suppose) planned to kill Issy and herself takes a fair amount of planning.
I don’t accept the argument that “there by the grace of God go I”, because I think that’s an insult to my ability to understand that it would be better for my child (who is also Autistic, nonspeaking, and occasionally unable to control physical outbursts) to be cared for by someone else than for me to murder her, if I ever were to feel so overwhelmed that I could no longer care for her.
I agree that we all need to support each other and try to understand the struggles that we all face. But I *will* judge a child-murderer a completely unfit parent, and I will dedicate my energy to grieving for the blameless victim of that murder rather than trying to view the situation from the standpoint of someone who was willing to go through *planning* for how “best” to accomplish a murder-suicide.
Misty – so glad you had the good thinking and courage to call someone. But here’s the thing, this mother, just like you, had a choice. She could have reached out to someone, a friend, her husband, a hotline, the police and told them what she was thinking of doing. She could have done that, but she didn’t.
Society views autism and Autistic people as inferior and less important. Everywhere you look people are devaluing the lives of Autistic people by the words used to describe them, by the actions taken, publicly and privately, in our schools, our hospitals, medical centers, the prejudice, that is so ingrained, is rampant.
i think you and Misty are partially right. i am autistic. and you’re right, all along the spectrum we are dehumanised, ignored – more so the older we get. but i think that has an impact on how we as autistics and our families may or may not make the decision to reach out for support. i feel saddest for the child, but her mum may honestly have felt that she was doing the right thing, either for herself or her child – and that makes me sad for them both, as well as any other family members. i send my love to you for writing this, and to all who read this and need it.
Thanks Ariane. It’s been a horrible night and day so far. Here is some of how I feel. http://shennyusa.tumblr.com/post/60443543272/nobody-should-be-allowed-to-wake-up-one-day-and-murder
Thanks for sharing the link Shenny.
My thoughts are WHY?? Why are there not help lines for Autistic Parents? Why are there not more services for People with Autism of all Ages? Why are there not more services for the Siblings of Autistic Children? Why does someone not make it easier to figure out what services there are for Autistic Children, and their Families? Why??? Why??? I love my Autistic Grandsons.. I am trying to figure out the Insurance, State, and School systems to get them as much help as possible.. This Mother needed help and how did the system fail her and her beautiful daughter?? Why???
Should read Help Lines for “Parents with Autistic Children”
Nancy – I know it’s frustrating. I know it’s frightening trying to figure out and battle insurance companies and the schools and everything else we face, but we really, really need to separate what this mom did with the fight every single parent with an Autistic child faces. We need to really look at how autism is consistently portrayed, we need to face the fact that Autistic people (and our children) are NOT treated with the same rights their non autistic counterparts are treated. This case is but one example.
Can you imagine if this same child had been abducted by an unknown stranger? Can you imagine if she had been locked in a van, found unconscious? Can you imagine the outrage? The news stories would have focussed completely on the stranger. Who was this person, how could they have done this. Would we have been told about Issy’s aggressive behavior? Would we have been told about all the things she’d done to “cause” this stranger to try and kill her?
It’s a double standard and it’s everywhere when it comes to autism and Autistic people. Everywhere.
You are right , I am sad to say it is a double standard. I am educating myself and my friends, my family and neighbors about my Grandsons with Autism. I have a daughter-in-law who teaches Autistic children and a Cousin that works with Autistic children. My neighbor teaches Autistic children at a public school. Fear and lack of knowledge about autism helps create this double standard system. My Grandsons are “children” who have autism. I hope with your blog and others like it the World will become better educated about Autism.
Thank you Nancy, I do too. All of this terrifies me. The level of ignorance, the level of misinformation, the prejudices, the lack of any presumption of competence, all of it. And I feel sick. Physically sick.
I’ve been treated like less than an animal based on that word on my medical chart. I have had people revise their expectations of me without ever knowing me. The celebration of these “poor exhausted parents driven to kill” has to stop. There is always an alternative and when it happens everyone else should treat it for what it is. The murder of a child. Many typically developing children are also exhausting and hard to handle the bulk of the time but murder one of them and the press looks ever so much different.
This doesn’t just dehumanize. Every word spoken along those lines, every world printed is a reminder to those of on the spectrum that so much of society doesn’t want us here. It’s hard enough to live in this world. Right now incredibly hard for me. I don’t need the added sadness and doubt.
I concur Ariane with what you have said.
I really really hope Issy pulls through and is not damaged. But whats done is done now. The mother must face justice. I think the best thing we can do for Issy and other children is to try and understand what really led to this woman taking this course. If we understand something we can deal with it better, perhaps in a different way. I’d be really interested in you putting your keen mind to that Ariane (maybe in another post when things have calmed down). The womans blog and videos on youtube make for some interesting reading/viewing.
Honestly, I can’t look at the videos or even read her blog. It makes me too upset. I am just holding my own daughter close and telling her how much I love her, how perfect she is, how she must never listen to anyone who suggests or behaves otherwise. I can’t change how the world sees her, but I’ll be damned if she doesn’t know how my husband and I see her and how lucky we feel to be able to be her parents. For today, that’s what I can and will do.
Also I just read some great news that Issy is drinking water, talking and recognising people. Sounds like she will be OK, thats the main thing 🙂
I’d like to take a moment to acknowledge the unnecessary fear and distress it causes good parents whenever they see horrible acts committed by other parents being justified and excused because of their children’s autism. What message is this meant to convey? That parents of autistic children can be expected to be potential murderers, just waiting for that final event to push them over the edge? That all parent’s of autistics should fear that their kids will one day drive them to kill? Are all autistics supposed to fear their parents now? Where is the outrage at the anguish parents feel when their children are maligned and they, themselves, are thought of as being perpetually on the edge of losing their self control because of their kids? I’m sure many parents have received pitying looks when explaining that their kids are autistic. What are those pitying looks supposed to mean now?
Anybody who wants to sympathize with parents who murder their own children should think of how much harder they’re probably making parenting for parents who would never try to harm their kids. This is some of the same kind of thinking I had when word was going around that people who have Asperger’s syndrome are prone to premeditated mass murder. It’s also the way I think whenever I’m reminded of attempts to raise money by scaring everyone about the “autism epidemic”. If we’d all known I was on the spectrum when I was growing up, I would never have wanted to see my parents suffer because of these ignorant notions. I loved them, and their pain would have become my pain, as well (though in a confusing way for me, I’m sure, as I wouldn’t have been able to understand things so fully when I was so little).
Hey, thanks so much for this. A commenter on someone else’s blog said something like, “this is what autism moms do, they are struggling and they can’t cope and then they break and this is what happens…” and I just groaned, because this is NOT what most parents do. It isn’t. MOST parents do not try to kill their children. They don’t. They don’t. They don’t.
I think what most people fail to consider is that, if parents of kids that don’t have special needs can suffer from various forms of mental anguish, parents whose kids do have special needs can, too. They’re not somehow immune, any more than autistic kids are immune to having other issues (which was one of my arguments during my assessment for Asperger’s, when I didn’t want my concerns about being on the spectrum to be dismissed because of other aspects of my history).
I’m actually okay with having compassion for the mother. I just don’t think it’s because her daughter drove her to kill (or to try to, anyway). I’m also not insensitive to the struggles parents have, regardless of the needs of their kids. I don’t have any children, and I’m in no position to claim to know what raising them would be like. Even though I’m the only one diagnosed as being on the spectrum, my sisters and I all presented various challenges for our parents. Sometimes they made mistakes. They weren’t perfect, nor could anyone have expected them to be. Sometimes they did the right thing, but we reacted as though they had not, simply because we didn’t like what they did. I’m sure that alone was challenging enough.
Thanks for all that you’re learning and doing. Your blog has the right kind of name. It’s one of the things that remind me there’s hope for the future and that there are some really awesome parents in the world.
Thanks so much, really appreciate that.
To piggy back on to the other part of what you wrote, ALL children present challenges to their parents and ALL parents present challenges to their children and ALL people present challenges to each other, we cannot justify killing people we feel are challenging, we just can’t.
Yes, and it constantly astounds me how sure a lot of parents seem to be that their autistic kids can’t see, hear, read, or feel what they’re thinking or saying (or won’t be able to one day).
And if you as a parent are expressing sympathy and understanding for someone who tried or succeeded in killing their child…what is that saying to your child about you as a parent? What is your child supposed to believe about you, if your understanding is for someone who did that?
You’re absolutely right Ariane there is a lot of work to be done to change attitudes and public policy. This is a human rights issue. When my son was young he used to have melt downs on the city bus. I would have to hold him in a safety hold to protect him and others from his thrashing around. The stares and looks of annoyance used to make me angry. Not of my son but people who were ignorant and mean staring at us. I love my son. We all has parents have an absolute duty to protect our children and keep the safe.
Dave – People are saying all kinds of things right now, but to me the most important piece is that what is said, how autism is talked about in the general public must change. It won’t completely stop people from doing horrible things to their children and to other people, but it can change the way autism is viewed, it can change how Autistic people are treated, it CAN make a difference, slowly and over time, it can. I have to believe this. I have to or I’m left with absolutely no hope at all for this world.
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Prayers for Issy and her Mom both. Following Kelli’s blog, it is easy to see how she was hurting but trying to keep going. Even as you said in one of your posts, once you start going down that dark road of depression, it is not easy, or a quick path, to get back to where you used to be. Again, prayers for both Issy and Kelli, and their family and community. While some of us know what it can be like to have a child with incredible meltdowns, not everyone knows the private hell of a deep depression that can accompany it.
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Many days it has taken all my strength, intellect, and patience getting the supports and services that my daughter with autism deserves to have in school. She is 15 years old and just yesterday I was in tears after hearing “no” from school personnel over an issue that made no sense to me.
School personnel should not have the authority to make parents feel so helpless and desparate. The “rules” that get conveyed can make families feel marginalized. We need stronger legislation to make schools inclusive so parents have the right to send their children with special needs to their neighborhood schools (with the supports and sevice they need)–without the threat of the child being “removed” at any moment. Removed where? To “someplace else” that will deal with them. Go look at those places and see if that is someplace you would want to spend your days…
I hope there are severe consequences for the school personnel that resulted in this mother feeling so alone and desparate. They have an ethical and moral responsiblity to children and their families. Yet, parents of children with special needs are often being treated without respect and there are not consequences for personnels’ poor, uncaring attitudes toward parents of these delicate and special children.
Sending my children with typical needs to school seems almost effortless compared to the number of meetings I attend for my daughter with special needs. Schools take the families with the greatest needs, responsiblities, and worries and make them fight for what their children with special needs require to have a great, inclusive life.
I think the obvious response is to judge the mother and to feel horrified about what she did. However, the school personnel clearly did not try to ease this mother’s burden and try to honor her wishes for her daughter.
Parents are dealing with serious concerns and medical conditions. Schools need to be careful and gentle with parents and offer families support.
We are living in a culture that believes autism is a terrible sentence handed down to parents who have no choice but to struggle to survive. They must cope and the emphasis is on the struggles, the pain, the horror of it all and it’s almost always from the parent’s point of view. Almost all the literature available talks about autism and those who are Autistic through the lens of the parent. A parent struggles, a parent is devastated, a parent is depressed, a parent is doing their best to cope and we list all the people and things that are standing in the parent’s way of being (presumably) not depressed, not struggling, but ultimately we live in a culture that is blaming the Autistic person. Were it not for this person who has dragged everyone else down all would be well, these things wouldn’t happen, no one would murder or try to murder their child, society would be so much better if autism didn’t exist and yet it does exist, here it is in my home, in your home, in many many homes, there is someone who is Autistic. Does this view help any of us? No. It does not. It harms and contributes to the suffering, in my case it was the REASON for the suffering. My daughter does NOT make me suffer. My daughter is wonderful and a joy to be around and talented and smart and funny and I am devastated that others do not find her as joyful and wonderful as my husband and I do, but that does not mean there is something wrong with HER, it means there is something wrong with society.
When I try to make her behave and be more like her non autistic peers I am setting my entire family up for disaster, discontent, upset, comparing and despairing, but mostly I am hurting HER. It is her self confidence and self esteem that are being eradicated, not her autism. Yet when I presume her competent, when I open my eyes to who she is and greet her with awe and wonder I am filled with joy, happiness and gratitude. This is not something any school, insurance company, legislation, medical facility can provide (which isn’t to say we should not be fighting for better and more comprehensive services and help) but it does mean we have to rethink how we as a society are viewing autism, Autistic people and our children.
I feel weird about some of the comments here as they too contain dehumanizing words and phrases and thoughts and rationalizations for the attempted murder of a child.
“ease this mothers burden”
“I hope there are severe consequences for the school personnel that resulted in this mother feeling so alone and desparate.”
If I were the parent of an autistic child I would feel even more upset by these quite typical thoughts and sentiments. I know quite a few people with autistic children and every single one of them as far as I know would not want to be treated very delicately in case suddenly they snapped and killed their child. I know for a fact every single one of them is capable of accepting responsibility for their own behaviour so no the school district and personnel etc… do not share in the blame here.
We absolutely need to have zero tolerance for anything that so much as suggests there is any justification for this. You can do that while still advocating for change of legislation, change in school districts and better supports but what caused this was a decision of a mother to do this and not to drive herself and child to the police or a hospital.
When I saw those comments I felt like Ariane’s blog had not been read nor had the previous comments. They were the same kind of comments I have been hiding out from.
I am not saying for a second here that things like schooling and healthcare shouldn’t be made easier. Since people are from all over access to things like respite varies too and all of that no doubt helps bed but never, ever for a second must we attempt to shift blame in a case like this as that has created the culture we have now where the murder of disabled children and adults has become so commonplace we can barely keep one name in mind before they are displaced by the next one. When you call a child a burden you contribute to that culture.
I have no illusions about the ease of my own care even at the age I am. I actually made the mistake of pretty well apologizing for being a source of stress to a family member the other day and they quickly set me straight with everything else I was a source of.
In any individual case whatever has happened, whatever services have not happened it is a person we are talking about. Not a burden, not a tragedy, and so on. Jennifer please read all the way back in this blog. You will see a journey where much was learned and much will still be learned and it is told by someone honest enough to admit the view points she once held. It will take millions of people being very firm that there is no excuse for murder. Being very firm that the target was a child not a shapeless, formless source of trouble and worry. You can google her name and see many images of her being just that – a child. There were other options here and Issy’s mother did not choose them. When words are used like in these comments where the victim is dehumanized and the mother elevated well yes you dehumanize me by extension but you also don’t make me want to be human in a way.
I was upset recently by scoring horrifically in some scales of adaptive functioning and daily living but if the cost of scoring higher is to ever call a child who was the target of a murderous mother a burden I think I will hang out here with all the people who annoy the system by not fitting at all. I have felt sad and miserable due to a depression brought on by a change of circumstance almost 18 months ago now but while I sometimes feel my autism causes me problems I presumably wouldn’t have without it it also makes me the person I am. I hate my autism at times. Just as I hate my arthritis at times. Then you come to terms with whatever has pushed you over the edge from acceptance to anger and move on.
Gareeth – Thanks so much for this comment. So many, many thanks to you.
This is the first I had heard of this. (I live in France, and the story didn’t make it across the Atlantic). It is truly sickening.
I have no idea how things work in the US, so forgive my European ignorance, but aren’t there social services in the US? Aren’t there social workers whose job it is to flag up parents who may put their child at risk? Shouldn’t they have stepped in at some point? What happens (or, what SHOULD happen) when a parent – whatever the reason – is unable to adequately care for his or her child? And didn’t this woman have friends and/or neighbours? Where were they when this child was at risk?
Please don’t misunderstand me, I am absolutely not trying to remove responsibility from the mother here, but it seems to me that there were failures on more than one leve in this casel. It takes a village to raise a child, and if a child suffers, then the whole village is responsible, directly or indirectly.
Oops, sorry for the typo – “on more than one LEVEL in this CASE”.
This is such a sad story I wish the mother got some help before this happened.
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That is sick. I mean, I can understand how the mother must have felt, but killing someone because they have a difficult life and/or make your life difficult- especially if its a mostly-defenseless child, and even more especially if its your own child, to whom you have a responsibility for protection and care- is not excusable. You hear stories like this involving mentally handicapped children or those with painful incurable diseases, but what if the daughter was. say, born with no limbs except half an arm or something? Surely it would be difficult to live with and care for her, and she would have serious problems that most people don’t experience, but her mother wouldn’t poison her (though I’m sure people who are physically rather than mentally handicapped are also treated in dehumanizing ways sometimes). She’s still a thinking, feeling person with a right to life, right?
“I am less than an animal. I am a tool, a thing, an it. I am the property of my Normal betters, who regard me as evil incarnate. This is true, because they said so. They are perfect, Godlike in their Normality…”
I struggle with this message every day. It stares at me from every wall, every face with its multilayered social mask – every deception, every word that has multiple meanings… Every time something happens, I wonder: what is the motive here? To not believe anything you see or hear – to wonder if you can ever believe?
This what happens when when people hate you – when they believe you chose to be what and who you are – when they believe that the only reason you don’t bow down and (literally) worship them is because of your willful stupidity.
I was in my late forties when I was formally diagnosed as being autistic. I was labeled an It the day I was born – the doctor hid me from my mother, because I was deformed.
I’ll always be an ‘it’, because I’m not, and cannot ever be Normal. I wait for the day when I will be killed, for then the Normals will rejoice in a perfected world.
The scapegoat is dead, then. How long will it be before they begin looking for another ‘less than an animal’ thing to sacrifice? Who else will need to be cursed at length, and then destroyed?
It’s exhausting. I don’t want to rail and rage against the entire world, and yet there are days I feel as though I have no choice.
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