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Tag Archives: autism and lack of supports for families

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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