We want to be on the same page because we don’t want your children to be another statistic.
By Jocelyn Eastman
Part 2 in a 3-Part Series
Part 1 – I am standing right here – Don’ Speak for Me
Part 3 – I am standing right here – when Ego and Power trump #Autistic voices
TW/CW: Violence and abuse in multiple forms, murder of disabled and autistic persons, upsetting dialogue, discussion of problematic topics. This post has links to stories that contain disturbing, detailed and mature content. Please advise.
“Why are autistic people swearing at me?”
“Why are autistic people telling me I can’t/shouldn’t (insert action here)?”
“Why are autistic people comparing me to murderers?!?!?!?”
“WHY WOULD I EVER WANT MY CHILD TO GROW UP TO BE LIKE YOU?!?!?!?!?!”
The questions go on and on, needling autistic advocates as to why many have such strong reactions, but I often wonder if those asking questions are really actively engaged in the individual answers of autistic people. Aside from the sheer frustration that being nice just does not work (and it doesn’t), the callousness that is often thrown at autistic people from all different directions, the constant co-opting of our lives to raise money for organizations that do not help us OR our families, the media frenzies that love to use our bodies for medical, philosophical or movie productions or just general dismissal of issues that are important to those of us who need the most support…the answer to all of the questions that parents have about visceral reactions to them and others who are SUPPOSED to protect us comes down to one thing.
*Drum roll please*
People are not safe for us.
Let me repeat that.
People are not safe for us.
To elaborate: People are not safe for us. The people who are supposed to protect us are often those who are the most unsafe.
This is not a statement of paranoia. This is not an encouragement to, “be afraid of EVERYONE!!” This is a statement of fact, based on statistics. Do not mistake this as an indictment of all parents. It is not. This statement includes teachers, friends, doctors, psychologists, psychiatrists, police and parents. The support systems that are supposed to protect us often fail.
Maybe this is unbelievable to those reading this. Since years of advocacy has taught me that comparison of individual stories has the potential to lead to the old, “My life is soooo much worse than yours,” competition, I am going to stick to what my autistic brain does best.
The facts. Just the facts, folks.
***
Issy returns home from a long stay in a residential facility due to challenging behaviors, which include physical outbursts. Issy has made remarkable progress during her residential stay. Her mother, Kelli Stapleton, welcomes her home by taking Issy on a drive to a rural area in their family van. She then proceeds to ignite two charcoal grills in the back of the vehicle closing all of the windows and doors leaving her fourteen-year old daughter gasping for air.
Later, Kelli reenters the van knowing the carbon dioxide levels are lethal. Police show up before the murder – suicide is brought to fruition … but the damage has been done. Later in the hospital, Issy is left to fight for her life. Her mother is thrust into the national spotlight.
Abuse is a topic that everyone and no one is talking about at the same time. It seems we can read about it or talk about it in the abstract, but no one wants to fully bring it into the limelight. The statistics overall are troubling. The CDC Childhood Adverse Experiences (ACES) used a battery of different childhood maltreatment experiences to determine long term health outcomes to determine that 24.5% of women and 27.9% of men experienced one adverse experience during childhood. Not all experience includes abuse.
10.6% of respondents in the study experienced emotional abuse, 28.3% of respondents experienced physical abuse. The Disability and Abuse Project conducted a survey in 2012 among over 7,000 participants, which included the disabled, caregivers, teachers, family members and social workers. A series of questions were asked to participants, and statistics were divided up by disability type (please note that participant or respondent may be represented by someone caring for them).
It was found that:
While more than 70% of disabled people report being abused, autistic individuals are abused at an incidence of 66.5%, while those with mental health conditions have an abuse incidence rate of close to 75%.
Victimization of autistic victims happen 10 or more times for 44.3% of autistic persons and for 59.4% of those with mental health conditions. The frequency of abuse for 47% of the disabled in the study is so often that they have lost track or have stopped bothering to count the number of abusive incidents.
Bullying has been on the forefront of the news with the wave of suicides after relentless harassment and the revelation that 55.2% of LGBT students are cyberbullied. The CDC study that identified LGBT students as a targeted group also found that 28% of all students grades 6-12 are bullied. Unfortunately, the CDC study didn’t identify any other specific groups for study.
Maybe it should have.
Bullying is reported on the survey as happening for a whopping 77% of autistic respondents and 74.8% of respondents with mental health conditions. While the schoolyard is the number one culprit, as the location of 72% of bullying experienced, the neighborhood and inside the home follow at 42.4%. Telling autistic children that everything gets better when we are adults might be a pipe dream too, since another 36.8% of bullying happens in the workplace for disabled adults.
All forms of abuse are experienced by autistic people, but perhaps the least talked about is sexual abuse. It is absolutely a reality, and it is not just among adults. The CDC Childhood Adverse Experiences study concluded that almost 21% of children experience sexual abuse at least once across all genders.
According to the survey, 24.9% of autistic respondents had been abused sexually, with mental health respondents reporting a 47.9% incidence. Even more troubling, in a 2014 pamphlet targeted for use by domestic violence and sexual abuse counselors, the Autism Society of America reported that while 18.5% of autistic children had been physically abused, 16.6% had been sexually abused. According to the pamphlet, abuse, especially sexual abuse involving boys and men, is underreported and little to no studies exist on its incidence. The pamphlet asserts that autistic people are four to ten times more likely to be victims of abuse.
We simply do not know much actual number of autistic sexual abuse victims other than that the statistics are way off.
Readers will note that I include the statistics of those who are not autistic but are otherwise neurodivergent. Aside from the manifestations of issues like anxiety or PTSD that can develop for autistic individuals by simply existing in a world not made for them, statistics show that 80% of 21 year-olds who experienced abuse as children experience the criteria necessary for a mental health condition.
We know abuse goes unreported. The Disability and Abuse Project survey reports that only 37% of victims reported the abuse.
Why?!?!
The survey kindly answers the question for us. Nearly 40% of respondents were threatened and 33% did not know how to report.
Overwhelmingly, nearly 60% of respondents believed nothing would be done. The voices of the victims would not truly be heard even if they did report.
Overwhelmingly, the respondents were correct. No action was taken in 52.9% of cases and only 9.8% of alleged perpetrators were ever arrested. Only 7.8% of alleged perpetrators are arrested in cases where persons other than the disabled individual reports.
Are my shoes uncomfortable yet? What does it take for you to walk in my shoes?
***
“But Jocelyn!!!! That’s not me!!!!”
It may not be you. Personally, I do not assume it is, but in the interest of my own safety how do I know? I have received threats. I have been told that people like me should not exist. I have been abused. I have a propensity to take what I see at face value, and believing, “That’s not me!!,” because I believe that people are honest like I am has not worked out well for me in the past.
The more I’m told my voice doesn’t matter or that my viewpoint is invalid, the harder it is for me to feel that people, in general, are safe. For me, this means zero trust and hard passing with a wall. For others, this means anger. Sooner or later, grouping happens, especially when we make references to real things happening that effect your children, only for us to be dismissed. The science groups us in the studies above because there is a pattern, not because it is all of us.
For our own emotional, physical and spiritual survival, we have to look at things in the same way. It does not mean we really think every single solitary person who is not autistic is abusive. It means we are going to hold people to an immediate expectation to do better, and if that person can’t even respect our personhood, that person is ingrained in a pattern that perpetuates abuse.
If your first response to this article is that I have no empathy, for example, then you are part of why this happens.
It also means you aren’t safe for me … because if my being abused means absolutely nothing to you then who is really lacking empathy?
Maybe the numbers are not enough to understand the anger, but the information is out there, and there is even more here. We do keep stats and we remember the names and the stories.
Be prepared for awful stories and sarcasm. None of the people who did these awful things are considered wonderful in light of their actions.
We don’t feel safe around teachers who are supposed to protect us. We especially don’t feel safe with this one who uses hot sauce for discipline (DJ’s mom, Cindy, wrote this book), this trashy educator who decided to use the trash, this “wonderful peach” of a teacher striking children and all of these “amazing individuals building our future” reported in a Federal report about abuse in schools. Let’s not forget the complete and total administrative failures surrounding the death of Avonte Oquendo.
We do not feel safe around law enforcement who are supposed to protect us. We especially don’t feel safe with a cop who should have tried another non-tasing approach, arrests you at the library after agitating you which leads to hell on earth, cops who team up with teachers for a series of inappropriate treatment and cops who fight with civilians over a woman. While not autistic, let’s not forget police completely mishandling cases like Ethan Saylor, Jonathan Meister and Dontre Hamilton.
Last, but not least and the center of this discussion …
The most visible of these systems for autistic people? The most vocal? The group that will have the most media exposure after doing harm to autistic children? The ones autistic people are constantly being chided by to “walk in their shoes?”
Why, parents, of course.
I am very empathetic, but I don’t feel safe, WE do not feel safe, AT ALL, around parents who ask us to walk in the shoes of Kelli Stapleton, Dorothy Spourdalakis, Jillian McCabe or Kimberly and Jarrod Tutko Jr. The most recent family related murder that I am aware of is that of Dustin Hicks, killed by his mother on November 11th, 2015, in Georgia, USA. These are the most egregious of cases, and are certainly not all of them – not even close. We can’t even keep track of them all. Then there are cases that make the news like keeping autistic children in cages, using industrial bleach enemas as autism cures or even killing a baby because it “might” be autistic.
Those are some of the ones we know about, and the ones we know about will never add up to the true amount of cases that exist. The overwhelming majority of us are victims of abuse and we are being asked to empathize with people who are like our abusers. Many of us are lucky to be here by virtue of the circumstances that we grew up in, some of us are just lucky to be alive.
I can’t justify or rationalize the actions of people who are abusive and believe me, I have tried really hard. I have mulled it around and racked my brain to figure out a way to walk in that person’s shoes, but at the end of the day, abuse is about power and control. About someone stealing MY SHOES.
Well, autistic adults have retrieved all their shoes back from their abusers, and they are inviting you to walk in them for the sake of a better world than they grew up in. Will you take the opportunity or will you turn them away?
If you are still here, I want you to know that there are many autistic adults who want to be here for your children.
We want to be on the same page because we do not want your children to be yet one more statistic. Please let us help you. Part 3 of this series will be how to be the public and private advocate your child needs.
***
Jocelyn Eastman was born October 21st 1983 with twin sister Jessica. Jessica was diagnosed as autistic at a young age, whereas Jocelyn was not diagnosed until 2015. She is currently known for authoring There Will Always Be Love, a children’s book about a sister who asks a lot of questions about autism and for being in the documentary The Sandwich Kids. She is also a contributing author to Easy to Love But Hard to Raise: Real Parents, Challenging Kids, True Stories, Autism World Magazine, and former radio show host for Innersight Freedom Foundation and ANCA. She has traveled around the country with her family speaking about autism and will be in the upcoming documentary Normal People Scare Me Too .
