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Dr. Phil’s Interview with Kelli Stapleton

As many in the autism community know, Dr. Phil aired part 1 of his interview with Kelli Stapleton yesterday. Part 2 will air today.

It was hard to watch for many reasons. What we’re witnessing, in all the splendor of the mid-day talk show circuit, is the complete destruction of a family. People’s lives have been left in shreds…small pieces they must gather up and try desperately to reassemble into some sort of grotesque mosaic of life that barely resembles their old lives. Three children who once had two loving parents, now only have the presence of one loving parent.

Kelli’s actions changed their lives forever. She knows that. The reasoning behind her actions clearly shows someone who was not in a mentally competent place. It’s obvious that living with the challenges of autism for many years was a contributing factor to her lack of mental stability.

But I wish Dr. Phil’s show had been edited differently. Was it necessary to see the same clip of Issy attacking Kelli, and Kelli’s piercing screams, four times? Granted, maybe they had limited access to video footage, but still…was it necessary, and was it even right to use it? How would Issy feel, having that played on national television?

As Kelli stated, Issy is a little girl who doesn’t want to hurt her family members, she just can’t seem to control herself. She’s a little girl with a disability who was exploited. She didn’t have a choice about what was shown on the show, and that’s not right. If they wanted to demonstrate the severity of aggression, they could have simply interviewed people who have worked with Issy.

In addition, I don’t feel like it was made clear to viewers that Issy is not representative of everyone’s autism. One study has suggested that as many as 58% of children on the spectrum exhibit aggression, whether that is due to autism deficits or a comorbid condition, is unclear. Despite this, it’s irresponsible to let viewers assume that Issy presents as the average autistic person. This portrayal only serves to enforce a negative stereotype about autism that is already prevalent in our culture. It should have been reinforced that the Stapletons were living under extreme conditions that don’t reflect everyone’s experience with autism.

Despite these glaring errors, there was merit in this interview if, for no other reason, than for Kelli Stapleton to let the world know that she is remorseful for what she did. I speak for no one but myself when I say that I needed to hear that from her. I needed to know that she was sorry, that she had an emotional response to what she’d attempted to do to her child.

I believe it’s an absolute truth that every single person has a breaking point. Each person’s breaking point will vary, depending upon the life experiences and personality of that person. So whatever combination of life events and personality came together, it found Kelli at a point where she no longer was able to make logical or competent decisions.

My hope is that someday there will be a set of protocols in place to address families living with chronic aggression and violence. It is simply not possible to live with chronic aggression and not be negatively affected by it. I have no idea what that would look like, whether it was mandatory, ongoing involvement of CPS with families living under these conditions, or something else in its place, but I fear that we will not see an end to tragedies unless we do something to help these families.

Kelli has been a friend to many in the community, and has helped many struggling families. I wish she could have helped herself. I wish she would have let someone else help her. I wish her family wasn’t broken and that her daughter wouldn’t always have the memory of her mother trying to end both their lives.

I wish…

I wish there were answers.

I wish there was peace for these families.

I wish there was more compassion in the world.

And I really wish there wasn’t a part 2 to this interview today.

 

But most of all, I wish for Issy to have some peace in her life. To be able to find her way, with support, and to cease being fodder for journalists and media outlets.

As for my friend Kelli, in her own words, she should “be in jail for a very long time.”

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.

The Hidden Autism Community Follow-Up

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The last post I wrote about The Hidden Autism Community really resonated with a lot of people, judging by the comments, emails, Facebook messages, and Twitterings I received. I’m glad that it helped people to feel less alone with the challenges they live with every day, and I’m very glad to have been able to steer many people toward a supportive group of parents—a lifeline for them.

I’m writing a wrap-up for the new readers to explain who I am, and to respond to some of the mutterings I’ve heard around town. There were a lot of great comments on the post, some with very strong words and feelings, others with varying advice ranging from diet to cannabis, and some were just words of understanding.

First, I want to thank the parents from the group I mentioned, who were brave enough to allow me to use their private comments for the benefit of the greater “community.” That group provides a place for people to bare all; the raw and painful emotions they’re feeling at a given moment, their greatest fears about the future, and their own private pain. Sometimes I just sit and watch the group as someone pours their soul out onto the computer screen, and others come along and lift them up with their kind words, urging them to not give up, to keep fighting for themselves and their child.

It’s easier for me if I break things down into categories, since there are a few things I want to talk about:

Diet

I’m not a personal believer in any autism diet. We tried GF/CF when Connor was much younger, but there was no change at all with his behavior. That said, there are many children with gluten and/or dairy sensitivity or allergies. If dietary changes work for your child, and you see positive benefits, then go for it! It’s none of my business what diet you follow in your house. DO NO HARM, that’s all I care about.

Medication

I believe that if someone’s quality of life is being affected in a negative way, and there is medication that can help improve it, then you should try. But I understand that it’s a difficult decision to make. I remember very clearly the feeling of not wanting to put all these chemicals into my little boy’s body. But we came to a point where there was no denying that his daily life, OUR daily lives, were unmanageable. Medication has improved things and made all of our lives so much better. But you have to make your own choices for your own family, and I don’t get to judge you for it. Do what’s right for you, do it by working closely with a doctor, and do no harm.

The Autism Cure

Le sigh. I am doubtful that a cure will be found. I believe that autism occurs at the genetic level. I believe in science and reason. So no, I don’t actively advocate for a cure. That being said, do I wish there was a cure in the hypothetical sense? Sure. While many thrive and celebrate their autism, there are many and more that do not. I believe that people should have choices about their life. While one person may not choose a cure, another might jump at the chance. If there was a magic cure pill, hypothetically, would I want it for my son? Yes. I would still have the same funny, quirky child, but he would (hypothetically) not suffer with anxiety. He would not be so easily confused in social situations. He would have an easier time making friends. But he would still be the same person. But this is a hypothetical, and it really doesn’t serve me to spend time considering it. If you advocate for cure, well, that’s your choice. I don’t walk in your shoes. If our autism looked like someone else’s autism, an autism with more severe challenges, I might think differently about this topic. But it doesn’t, and I don’t get to judge you when I don’t know your life. And neither should anybody else.

 

Jenny McCarthy

No. Just…no.

Language

When you say that you “hate” autism, I understand you. I have been there. Over time, I have learned that my language offends other people. Does that mean that there aren’t days when I feel like I “hate” autism – its effects on my child, the way he’s misunderstood, the pain he feels? Of course not. And I don’t believe in censoring people’s feelings and arguing over semantics. When you say you hate autism, I understand that you do NOT mean that you want to exterminate all autistic people everywhere. I understand that you don’t judge someone for being autistic and shun them. I understand that you are not saying you hate an entire group of people. I understand you to mean that you hate the struggles your child must face in their life and that, more than anything, your heart breaks for your child when they can’t communicate, or understand, or participate. You hurt for your child. I get it. I’m not going to judge you for how you express that pain. Doing so would put a wall between us, rather than drawing us together. All I ask is that you don’t say it in front of your child. Ever. Because a child might hear something different when you say you “hate” autism. They might hear that you hate them. So just be mindful. Do no harm.

Medical Marijuana

I’m very interested to see where the research and development goes in regard to medical-grade marijuana. I’ve seen some studies that show significant benefits for many health conditions. BUT, I’m not a scientist. You shouldn’t take my advice about things like this. You should talk to a doctor. Or several doctors. And since I live in Texas, and marijuana in any form is not legal here, I cannot make a statement of support for medical marijuana. Or maybe I should say “will not.” I’ve never been a fan of jumpsuits.

The “Murder Apologist” Label

First, the post I wrote on Wednesday made no mention of any murders. It wasn’t about murder. It was about families supporting each other when they’ve found no help from professionals or people in the community. No murder was mentioned, alluded to, discussed, debated, or reported. In the past, I have written about Kelli Stapleton. The reason I wrote about her is because I personally knew her. I was emotionally invested in her finding help for her daughter and family. I don’t know why her daughter was/is aggressive. Neither do you. You and I, we aren’t doctors. Being autistic is not the same as knowing what makes another person do what they do. You can speculate about it, but in the end, it’s only speculation. Because you’re not a doctor. Or a mental health professional. Or even a social worker. (If you ARE a doctor or mental health professional and you’re reading this, then I know you won’t make any speculations because you don’t know her or the family and it would be unprofessional for you to make those kinds of speculations.)

The reason I have written about Kelli is because I know through my own work in social services, as well as my own research as a member of the autism community, that there are many families struggling with aggression. For varying reasons. But having an aggressive child isn’t a reason to commit filicide. There are a lot of families that live with aggression that don’t commit filicide. An interesting study would be one that specifically examined cases in the autism community to determine whether the emotional and physical effects of aggression and sleep deprivation exacerbate an underlying mental health issue, causing someone to make that horrible, fatal choice. If a study was done and it showed a correlation between aggression in the family and a deteriorated mental state, then it would allow people to develop a screening tool to help identify the most at-risk families.

 

It would also be interesting to study whether the rates of filicide are higher in the autism community than other disability communities. I don’t hear about this in the Down Syndrome community. Nor do I hear about it in the ADHD community. It’s also not common in the CP community or in the Spina Bifida community (I’m sick to death of the word “community”). If it is happening more frequently within the autism community, then what can we do to change things?”

I think it’s more than a little odd that someone would refer to analysis and critical thinking aimed at preventing more tragedy as being a murder apologist. What would motivate someone to cast parents as murder apologists, just because they want to understand what’s happening to drive people to commit unspeakable acts? I suppose if they admitted that we were vested in preventing these terrible tragedies, then there wouldn’t be anyone to blame? Maybe? There wouldn’t be anyone to rail against? Maybe it’s a case of needing to create an oppressor in order to maintain a position of being oppressed?

If so, it’s a shame. There are real oppressors out there: politicians, school boards, lawmakers, insurance companies.

But for clarity, let me state: you should not murder your child. You should not kill yourself. You should not kill anybody. It’s wrong. It’s bad. It’s not up to you to choose if someone else lives or dies. Don’t do it. It’s better to have your child taken away and placed in a horrible group home than it is to kill them.

But really what I want to say is, please reach out to someone you can talk to if you’re drowning. We don’t want you, or your child, to go under.

 

 

And lastly…

 

This is my blog page. It is a free page hosted by wordpress.com. I don’t pay for a domain name or host. There is no advertising anywhere on this page. I write this blog because I like to write. Sometimes I write for fun, because there are a lot of funny and weird things in my head. Other times I write because I have to. There may be something bothering me, something I see in the community…like families being marginalized because the autism living in their homes is unimaginable. Either way, I don’t get paid to write this. It would be awesome if I did because then I wouldn’t need to go to a full-time job every day. But I don’t. I don’t make a dime off of this blog. In the four years I’ve been writing, I’ve received two free books (to review) and one free iPad case (to review). That’s it.

 

So if you ever find yourself not liking something I write, or maybe you didn’t like my cake story or the way I wrote about poor, dear Gwyneth, remember: you can go start your OWN site! It’s not hard. If you need help, you can email me and I will even help you do it. Otherwise, if you see something you don’t like, do me a favor…just say to yourself, self, she is a giant poopy-face and I don’t like her…so I will just click this little button over here and MOVE ON TO ANOTHER SITE.

 

This internet, it’s really a magical little box of glittery goodness!

 

The Hidden Autism Community

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The Hidden Autism Community

There’s a group within the greater autism community that most people don’t see. They hide away, in closed Facebook groups, alienated from the one community where they should be able to find support and commonality.

 

They have been ostracized, ridiculed, and accused of being terrible parents. If they try and tell their stories, they are ganged up on by scores of hostile people that call themselves advocates.

 

Some might say they are silenced because to acknowledge their family’s “brand” of autism would undermine advocacy efforts aimed at presuming competence. I’ve not said that, but I know others who have.

 

This is a group that lives with “severe” or “extreme” challenges; aggression, self-injurious behavior, intensive behavioral challenges. Their lives are almost unmanageable. Their children (including adult children) require so much care, that these families struggle to make it through each day. I happened upon their group, which consists of almost 400 people. That may not seem like a huge number, but keep in mind that is just one group. There are likely many more out there.

 

They have been kind enough to give me permission to write about them; to use their words (anonymously), to allow people to understand their frustration and fear, to hear their pleas for help. They have also encouraged me to allow all comments through, to allow (respectful) dialogue. (And unlike some pages, I will be moderating for respectfulness.)

 

I’ve spent some time culling comments from group dialogues. They are as follows:

 

“I know this kills you inside…ripping your heart. It does for me with Holly. I feel so useless because I don’t know what’s wrong and I want/need to help her but I can’t. It kills me to know our children are in pain and suffering and there’s not a damn thing we can do! Xoxo.”

“This makes me want to cry…I almost killed myself and my son, then one day I got the call that he was going to a treatment facility in (anonymous city, state). That call saved my life! I fought for over a year…it wasn’t until a catastrophe happened that CMH finally opened their eyes to our situation. One of my BFFs did try to kill herself and her daughter. Please, anyone else reading this who is overwhelmed…keep fighting for help!! It is possible to get it, just not easy!”

 

“As if things around here wasn’t (sic) stressful enough with Stacey beating herself and pulling herself bald this week, we got a visit from CPS today. 1 of the neighbors accused us of abuse because of all the screaming she is doing. Of course CPS went to the school and looked at her talked to all the teachers and aides and no charges will be filed based on no findings. I told them come by any day of the week, she will still be Autism (sic) and I still won’t have beat her but can’t speak for her beating us. Done venting.”

 

 

“So strange…I just went into my not feeling mode. I care deeply, but my body feels like it does during Jeff’s rages. Just resigned and dissociated. I hate that we all go thru this. I hate that our kids must be suffering so deeply to respond this way. What did they ever do to deserve this? They are kids! It’s so unfair to all of us. Thank you for sharing. People just can’t imagine.”

 

“I am so sorry, I’ve been exactly there – with Jacob Prozac worked better than Zoloft and his aggressions and hyper-OCD have mitigated somewhat. I called my husband home many days & called 911 two or three times, only to hear them tell me there was nothing they can do…realizing there really is no help is so frightening. Having to hide from your child is a certain kind of horror most humans will never know or understand. Love to you.”

 

“We took Mike for a drive this evening, which is usually his favorite thing to do…30 minutes in he had a massive meltdown…head banging the car window and hitting us. I had to get in the backseat with him to keep him from breaking the window. Got home about 30 minutes and the headbanging continued…walls, cabinets…gave him his nighttime meds and he just finally calmed down. Too tired for words.”

 

“Why me? Why my daughter? I’m so tired. 😦  “

 

“Feeling guilty that I can’t give all that my other kids need from me. 😦  “

 

“I am sinking. I’m sinking and drowning in autism and I can’t breathe. I cannot shake this feeling of hopelessness. I pray constantly for a miracle, for Matthew to get better, for us to be able to be a normal family, as much as possible. And the darkness just envelopes me again. There has to be hope. Please let there be hope.”

 

And this last comment, by Adrienne Jones, who blogs at No Points for Style, is a response to what some advocates in the community have said about simply calling 911 if you think you are in danger:

 

“When they shout about JUST CALL 911 or GO TO THE ER, I know they have a fundamental misunderstanding about how those things work (and assume the caregivers didn’t do that, when in fact, usually they’ve done it multiple times.) Usually you’re back home with minimal (or no) follow-up somewhere between 4 hours and 3 days. No help, new bills, and less hope than ever. You call the cops, maybe they traumatized or (in Albuquerque) kill your kid. You put your kid in RTC, maybe they treat your kid badly, or even hurt them. I’m pretty active politically, working to get more services in NM, better training for cops, more programs in schools, and it’s like dragging a truck with your teeth. Nobody gives a shit. Our governor is caregiver of a disabled sister, and she still doesn’t get it. She has the money to pay for full-time care, so what the hell does she know about life in the trenches? She’s just trashing services in the name of fiscal responsibility and letting people die. It puts me in a blind rage.”

 

This post isn’t about blame. It’s not about shaming autistic people. It’s about being honest about how big this spectrum really is, and how severely affected some individuals and families are by autism. This is reality for these families. This is their daily struggle. If we keep ignoring them because we don’t like the words they use, or because we don’t want to think of autism as anything other than shiny and happy, then we are leaving these people to fall.

 

You would never ignore your child’s needs because you didn’t like they way they asked for something. Why would you ignore a huge group in the community that is screaming loud and clear about there not being appropriate short-term and long-term emergency services available to families?

 

These families, every one of them, have the same value, worth, and dignity as every autistic person. If the family is drowning, then so is their child. We need a community that welcomes these families, and reaches out to them.

 

But just like appropriate services, we don’t have that.

 

But their voices will still be heard. There will always be someone out there willing to amplify them in the hope that it will bring about change. Why not you?

 

 

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