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Power and Privilege: Shutting Down Dialogue in the Autism Community

It’s been a year since Kelli Stapleton tried to take her life, along with the life of her daughter. A year seems like a good, long time, yet people at TPGA that style themselves as “autism advocates” still don’t want to talk about autism and aggression. Although aggression affects many people on the spectrum, it doesn’t fit the autism profile that advocates are trying to promote, which is one that only involves positive attributes.

 

Parents want to have the conversation about severe aggression and lack of services and what that scenario does to a family. But they continue to be shut down. Parents are told that they’re “privileged” and don’t have the right to steer a conversation that includes the topics of aggression and lack of services. Yet the conversation is being controlled by people that epitomize the very privilege they strive to censor.

 

They don’t want us to talk about the appalling lack of services, yet one of them has a 1:1 aid for her son. How many of us have a 1:1 aid? They don’t want us to talk about autism and aggression, yet they both have aggressive children. They don’t want parents to be part of the conversation because they’re “privileged”. Yet one of them went to Europe for the summer and the other to Hawaii. How many of us had summer holidays abroad? How many of us didn’t even get a vacation? How many of us would sell a kidney just to get away from the house for a single day?

 

But you know what, that’s okay. Not everyone can afford a luxury vacation, and there’s nothing wrong with someone who can afford that, except when they’re silencing other people for being privileged. People that are more privileged than most of us are not allowing you and me to be part of the conversation because they say we’re privileged. Does anyone see anything wrong with that picture?

 

They don’t want to hear that severe aggression and lack of services can have any correlation to a parent spiraling into such a dark place that they would attempt to harm themselves and their child. Yet, time and again, parents have come forward to admit that they have been perilously close to that line. And while that doesn’t, in any way, justify harming a child, there is an undeniable connection between living with chronic, severe aggression and the erosion of the mental stability and coping skills of the caregiver/parent.

 

Discussing correlation does NOT equal justification for a crime, however discussing services is a conversation that needs to happen. It has to happen so another child doesn’t lose his or her life; so another parent doesn’t feel this is the only option. It has to happen with the people who are living with severely aggressive children. It does not need to happen with the very people our children are not, the very people who are trying to silence those who need to speak.

 

In case that wasn’t perfectly clear: DISCUSSING CORRELATION DOES NOT EQUAL JUSTIFICATION FOR A CRIME.

This conversation isn’t going to go away until families finally get the support they need. The conversation won’t stop because a couple of Bay Area hausfraus with a sham of an unlicensed organization and absolutely no credentials in mental health want to shout us down. In truth, they have no more legitimacy than any other autism parent, because they have no special training or credentials beyond being a parent.

 

This conversation needs to be had, time and again, until people start to listen. This conversation can’t be closed down because there are families hanging in the balance. The conversation must continue until there is real help available to those that need it. Calling 911 and having your child taken away, parental rights terminated, and your other children taken by CPS isn’t the support and help that families need.

 

Kelli Stapleton is my friend. She made a terrible, life-changing choice that will haunt her family forever. Her children will be forever damaged by what she did, especially Issy. I don’t want this tragedy to happen to another family. More than that, I don’t want the public to believe the lies being perpetuated by advocates about Kelli, because those lies have far-reaching implications.

 

The biggest lie was that they had plenty of services for Issy. The Stapleton’s had just learned that Issy would not be allowed back in her school, either because of the aggression or because the behavior plan was too intensive for them to implement. Kelli was going to have to move three hours away from her husband and other children, alone with Issy. There would be no services waiting there for them. None. Kelli would have been completely alone in supporting Issy, whose aggression resulted in prior hospitalizations for Kelli.

The other big lie was that Kelli was just a monster that only cared about herself. Following is a quote (used with permission), from the mom who blogs at Stay at Home Crazy: “Kelli saved my life, along with a couple of people I talked to here and on the Outer Facebooks. She talked me off a ledge. I wish she had let me do that for her. I don’t want anyone to have to feel that there is nowhere to go and no one who will understand. I have been quiet on most of the discussions because I have been getting anxiety attacks whenever I read or try to write about it. But I care. About you guys, about Kelli, about all the parents and all the kids struggling to make it through.”

 

The people that call themselves “advocates” have no problem having a discussion about appropriate services and training for emergency responders after an autistic person is harmed or killed by a police officer, but they won’t allow the same conversation if a parent crosses that line?

 

Don’t let people that are far more privileged than the rest of us dictate the conversation. Write. Blog. Write to your congressman. Refuse to be silenced. Refuse to be bullied.

 

Autistic people are worthy of love, respect, kindness, and empathy, no matter what their challenges may be. Asking for help, for support, doesn’t diminish their worth or value. In fact, it may be the most loving thing you ever do.

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About Flannery

Kid, husband, dogs, my mother, full-time job, maximum stress, minimal relaxation...sooner or later I had to vent. AND we moved from California to Texas. I could start a whole other blog about that.

26 responses »

  1. Thank you for being our voice!

    Reply
  2. It’s been over three years since our autism diagnosis came through for two of our triplets. I still feel like a newbie autism mom a lot. I’ve been blogging on and off since before the diagnosis, but it’s only been in the past couple years that I started really seeing all of this controversy within the community surrounding autism. I remember wanting from the beginning to know what was the “right” way to navigate this new world. I’m still struggling to figure that out. I do find it disheartening to have so much anger and frustration out there. Mostly, I don’t know what to think or who to believe half the time. I am still heartbroken over the Issy/Kelli Stapleton situation, yet I wish I really understood how to help. Mostly I spend my days trying to get my own family to the next day unscathed and as close to thriving as I can. Beyond that, I pray and hope to God the conversations I do have out in my little world will have some impact overall. I’m not even sure this comment makes sense, sorry.

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  3. I’ve been told several things:
    -If this were a typical child we wouldn’t be having these conversations. Not true. Remember the woman who drove her kids into the lake? We always ask why. We talk about post partum depression. We talk about mental health services. The only difference here is that certain people don’t want to admit that raising an autistic child can be hard.
    -We need to decouple the conversation about services, otherwise it seems like we are justifying murder. Not true. Anytime there is a tragic event, we use the energy around that event to forward the cause. A school shooting? We talk gun control. Earthquake? We talk preparedness. Bullying? You get the idea. Otherwise, we forget and those conversations never happen. Or worse, the urgency is gone so we have conversations but change never happens.
    -just call 911. You addressed this well but I have one other thing to add. Let’s assume I had resources to send my son to a residential facility. They are very few and far between with waiting lists of a decade or more. So If I needed help. If I needed to keep myself or my daughter safe, where would I go EVEN IF I had the money? There’s no safety net. And that is what keeps me up at night. Look at that 80 year old man who killed himself and his family, including 2 disabled adult children. Do you think e would have done that if he had any other good option?

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    • Exactly. That’s why it’s critical to have these conversations. For someone to think that having these conversations is akin to condoning murder just shows their lack of critical thinking skills and their over reliance on fallacies.

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  4. Yes. Yes. Yes. The experiences of the few are NOT the experiences of the many and should not be treated as such. It’s like when people point to Magic Johnson as the shining example of HIV treatment. Yes, because he has fame and money behind him he can access treatments that others can’t. It’s just not a fair fight.

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  5. Perfectly worded! I have found myself yelling/screaming at my son during his rampages and only by the grace of God (and probably Xanax and Wellbutrin) have I been able to walk away and take 5. My son was recently hospitalized for “intermittent explosive disorder” for a week. I’ve read about other parents going through this but NEVER imagined it/he would get so violent! I am truly blessed being so close to Cincinnati Children’s, they have an entire autism building and behavioral unit that deals with this kind of autism! I was really appalled by what Kelli did (I had also followed her and was totally shocked) but after stepping out of my own life I totally got it. We all have a breaking point, unfortunately when hers came she saw no other way out. I pray for her, her family and every other mom that hits that wall.
    I hope this blog reaches far and wide and prevents another terrible tragedy!
    God bless

    Reply
  6. Reblogged this on Screaming at Trains and commented:
    This needs to be talked about, and talked about some more and yet more beyond that. No one out there, absolutely no one that has a child on the spectrum will ever say to you they have too much support. People want to see the nice, calm, quiet side of autism but there is so much more, it is called a spectrum for a reason. Families need help, children need help, caregivers need support and understanding not judgement and condemnation. Start talking!

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  7. Thank you for writing this. I have been on the edge of the chasm that Kelli fell into. I can understand the desperation that she felt, and it’s only by God’s good grace that I have been able to pull away from the edge, or had someone close by that was able to intervene and prevent a tragedy. This is the dark side of autism that no one wants to know about and in fact almost no one knows how to deal with. To propose to the public that we spend the $million$ to adequately look after the families affected by this issue would be political suicide because so many people just don’t get it. Their picture of people with autism is Asperger’s adults getting jobs at SAP, or quirky individuals that have prodigious musical or artistic talent. “Why would they need so much money?” The discussions do need to be taken up broadly so that many more people can at least see the pain and anguish even if they can’t feel it first hand.

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  8. Keep talking ! It’s the only way to shed light and get services that are drastically needed by so many. Excellent , heartfelt piece of writing.

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  9. I am the parent of a young man with autism. I have also experienced severe aggressive behavior from my son since he was a young boy. We tried many therapies with little improvement on any of the symptoms of his autism. About 4 1/2 years ago we tried medical marijuana for our son and saw instant, dramatic improvement in his aggressive behavior. This medicine, and I call it that even though I live in a state where it is still illegal, has truly saved his life, and the life of our family. I am currently working with several organizations to change the laws concerning medical marijuana in my state. I want to encourage everyone to do some research on this subject. We have found this to be extremely beneficial for our son. In fact, he no longer takes any other medication besides a small medical marijuana cookie each morning. He has improved in many areas, including language ability and social skills, but the main benefit for him has been to help him to control his aggressive outbursts. We all have an endocannabinoid system in our bodies, with receptors for the cannabis (medical marijuana). It is a natural, safe way to help his body to function better.

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  10. Thank you for addressing this. We who haven’t lived this nightmare have no right to speak on it.

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  11. Thank you so much for saying something, for always saying something. While its nice that there are people identifying as autistic who advocate for individuals like themselves, let me be clear when I say THOSE SELF ADVOCATES ARE NOT LIKE MY CHILD AND THEY DO NOT HAVE THE SAME KIND OF AUTISM. They especially do not have the same kind of Autism that most of us are facing. The very fact that they are capable of communication and expressing themselves proves they are living in a different reality than those of us struggling, begging for help and services for our children, so many of whom are not yet capable of any self-care. It’s apples and oranges. So guess what? THEY’RE the privileged ones able to clean themselves in a bathroom, dress themselves, wipe their own drool and snot, get their needs met by communicating effectively. They are so so so privileged.

    It is my opinion that TPGA and their cronies are bullies, bullying an already tired, weak, and very vulnerable population, disguising themselves as advocates. TPGA: you do NOT speak for me or my child. I never, ever, ever want my child to become a part of that bullying community. I actually look forward to a day the DSM has a new label to separate my baby girl from that.

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  12. Let me start by saying while I have an autistic child, I am one of the fortunate ones who do not have to deal with aggression. However I have known many families that do and this is a topic we can not let be silenced. One thing I wanted to bring up is parental martyrdom. Often times as parents we focus so much on what our children struggle with and need in way of services, that we ignore our own (and the rest of the families) needs. I didn’t know Kelli, but I did hear one interview with her where she talked about her boat being fine and Issy being in a buoy that needed help. We need to realize as a society that autism isn’t in a vacuum only effecting the child. It effects the whole family and we all need help in dealing with it. It looks differently in every family, and sometimes it means that the parents and children need services learning to put their mental well-being 1st. That may sound horrible, but just think about it. If the parent is depressed, highly agitated and unable to cope, they will not be able to be the rock that their child needs them to be to have a happy health life. Unfortunately our society perpetuates this myth of the special needs parent being super human, with patience of a saint and stamina of a god. We are not, we are just human and we need help too. I think often we are ashamed to say we need help personally, when we look at all our children struggle with. We have to realize that to help them, first we have to be in a place mentally where we can help them. We always talk about autism and the puzzle piece, I think parental mental health is that missing piece that we need to being focusing on. We need to dispel this superhuman myth.

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    • I absolutely agree with you. Parents don’t take care if themselves, and that’s partly due to guilt and partly due to having the resources and ability to do so. And that’s my point, we have to keep this conversation going. Whenever there is a family dealing with aggression, we have to advocate for support for the whole family.

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    • Agree wholeheartedly!

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  13. Brava! Thoughtful and beautifully articulated as (almost) always! 😉

    How can anyone disagree? If they do, let’s talk…not point fingers.

    Nobody wins.

    Reply
  14. Pingback: Why Thinking People Want to Talk About Services in the Wake of Tragedy « ProfMomEsq

  15. Thank you for this. I wrote last year and reposted the story this year when Kelli pleaded guilty. While I do not know her, I know how you can go to that dark place where you think you are making the right choice. My heart breaks for this family. No one who writes in support is saying they condone what Kelli did, we are saying we understand. How dare anyone who does not have my child say they know what I am going through and a choice I am making (or not) is wrong. For the Kelli’s of the world, we need to keep shouting we are here, that they are not alone and they are not to be ashamed for not be able to see that there is help. After all, they’ve been denied so many times why would they believe us?

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  16. You are a breath of fresh air!

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  17. Thank you for keeping the conversation going and helping people understand that this is not a black and white issue, and to truly stop it from happening again, we must clearly understand what happened.

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  18. i know that place. ive even acted on it once. why am i not locked away? why were there no charges? because i was still pregnant. because no damage came of it. what was going through my mind? the fact that 15yo undiagnosed me was having a baby, and i would never be able to look after it properly. the fact that the world is too messed up to be able to give another me a decent quality of life. the fact that his father wouldnt be able to care for it, that my mother wouldnt be able to care for it. the fact that it would wind up damaged from unintentional neglect and abuse from me because i cant function. i was going to prevent the greater tragedy of hurting another being, by killing us both, before it was born.

    im now 21. i have only just recently received a diagnosis. i have ASD (on the aspie side of things) and cluster C personality traits. i have a 5yo son (our birthdays are really close), who is happy and healthy. but showing symptoms, and im struggling to get a diagnosis (yay for living in the country in australia – theres barely any support services for -anything-). i live independently with him in 100% my care with quite a bit of help from the few services available. i am dysfunctionally functional.

    some days im back there on that ledge, asking myself if i did the right thing, if i did the wrong thing. sometimes i think it wouldnt be too hard to try again, to save him from the hurt, the damage, the suffering that ive had to live through. but i cant. and i never will. i cant explain how i know this, i just do. we’re going along one foot after another. i dont know where we’re going. and its really bloody scary. its really scary knowing that even though i know what to look for, i may not be able to build a system in time to prevent damage. its scary that its my job to protect him, to keep him safe.. to stop him becoming damaged, and that i dont know if im capable of doing that. but by god im trying my hardest.
    i just hope that my hardest, my best, my everything.. is going to be good enough to keep him safe.

    Reply

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