How abuse mars the lives of autistic people

https://www.spectrumnews.org/features/deep-dive/how-abuse-mars-the-lives-of-autistic-people/

Many people with autism experience a triad of trauma: neglect at home, abuse from trusted adults and bullying at school or work.

The bullying began early. When she was just 5, Kassiane Asasumasu remembers other children taking her belongings and lying about it because they knew that she was face-blind and would not be able to tell on them. At a slumber party when she was 10, girls poked her, froze her underwear and made a game of seeing how many times they could make her cry. Her post-slumber-party meltdown lasted 48 hours. The following year, classmates locked her in a locker — and then she got in trouble for kicking the door open.

“Most of my childhood memories are of other kids being mean to me,” says Asasumasu, who was diagnosed with autism when she was 3. “I cried every day of elementary school.” Some days, she cried so hard that she threw up. Even when she didn’t give in to tears, the insults gutted her.

In middle school, teachers told her mother they thought she was at risk of suicide, but beyond that, she did not feel that the adults in her life ever supported her. Her teachers encouraged her to ignore her tormentors, but she was unable to do so. At home, where she says her seven siblings often blamed her for their transgressions, her parents punished her rather than them. “You’re the one always getting in trouble,” says Asasumasu, who is now 37, “for what everybody else did.”

Experiences like Asasumasu’s are a terrible reality for many autistic people. Studies suggest that children on the spectrum are up to three times as likely as their neurotypical peers to be targets of bullying and physical or sexual abuse. Such maltreatment can cause severe stress and trauma, yet it often goes unrecognized or unreported. Therapies to help treat trauma in people with autism are mostly experimental, so these individuals are often left to fend for their own safety and health. “Children with autism who have experienced maltreatment or some form of violence are a very vulnerable population, not only because they’re more likely to experience these maltreatment experiences, but we also know very little about how to best support them,” says Christina McDonnell, assistant professor of clinical psychology at Virginia Polytechnic Institute and State University in Blacksburg.

One important way to develop better support systems, she and other experts say, is to listen to autistic people about how society harms them. “What we need to do is some of the hard work to find out what’s happening in these systems that allows this to take place,” says Catherine Corr, assistant professor of special education at the University of Illinois at Urbana-Champaign. “And I think information from folks who have lived that would be really beneficial to understanding how systems have failed them.”

Maltreatment is an umbrella term that includes neglect and emotional, physical and sexual abuse. That children with disabilities are particularly vulnerable to maltreatment has been replicated in studies going back decades. Studies specific to autistic children are much scarcer. As a graduate student studying child abuse in 2014, McDonnell observed developmental problems, including autism, in a significant proportion of children with maltreatment cases under investigation by U.S. state social-services departments. But she saw a disconnect in the scientific literature: Studies of traumatic stress in instances of maltreatment rarely considered the children’s autism diagnoses. And autism researchers had barely begun to explore the possible maltreatment of their study participants.

The few studies that had been done offered mixed results. Some suggested that children with autism are more likely than their typical peers to be neglected or abused, and more likely to be involved with child protective services, the state departments in the United States tasked with overseeing children’s well-being. Others did not show an association between autism and an elevated risk of abuse, although the studies had limitations — including being small or using outdated definitions of autism.

McDonnell and her colleagues decided to investigate the link and tapped into autism surveillance data, as well as records from the South Carolina Department of Social Services. They compared patterns of abuse and neglect for nearly 5,000 children with and without autism born from 1992 to 1998. They found that nearly one in five autistic children in the state, and one in three with both autism and intellectual disability, have been reported to be maltreated. Even after adjusting for factors such as low family income and limited parental education, children with autism remain up to three times as likely as their neurotypical peers to experience maltreatment, the team reported in 2018. “We were alarmed by those numbers and how high they were,” McDonnell says.

Neglect in particular is a problem for children with autism, as well as for those with intellectual disability. Neglect is the most common type of maltreatment documented by child protective services, says Kristen Seay, assistant professor of social work at the University of South Carolina in Columbia. Exacerbating the problem is the fact that children with autism often have needs that families with few resources may find difficult to meet.

McDonnell’s team found that autistic children are also vulnerable to physical abuse. Primary caregivers in the immediate family are the most common perpetrators of the abuse, but a broader range of offenders — including family members, babysitters and childcare providers — may be more likely to target children with autism or intellectual disability than other children.

A similar story emerged in Tennessee. Researchers there analyzed data from an autism monitoring site run by the U.S. Centers for Disease Control and Prevention, and found that having autism more than doubles a child’s chances of referral to child protective services. The study included more than 24,000 children born in 2006 and found that 17 percent of the 387 autistic children had been the subject of calls to the state’s child abuse hotline, compared with 7 percent of the others. Despite the higher number of reports, however, child protection professionals investigated the caregivers of only 62 percent of the autistic children, compared with 92 percent of typical children. “We really need to have a heightened awareness that this represents a tremendously vulnerable population,” says lead researcher Zachary Warren, a clinical psychologist at Vanderbilt University in Nashville.

When Nancy Nestor’s son P. was 3, a year before he was diagnosed with autism, he came home from preschool, went to his room and, as he played, muttered to himself, “Stupid P. Stupid P.,” over and over. (We are using P.’s first initial only, to protect his privacy.) At the time, P. did not know what ‘stupid’ meant, but Nestor was heartbroken. She spoke with his teacher, who was shocked. The teacher had not heard students using that word and promised to listen for it — and put an end to the problem. But Nestor continued to worry: Her son did not talk much, so he could not tell her if the bullying continued. “Nobody wants to hear someone refer to their child as stupid, especially a child that can’t talk,” she says.

In the years that followed, P. occasionally encountered bullies, including a group of boys in high school who threw their balled-up paper lunch bags at him and told him to throw them away. But he also received compassion and support from classmates, teammates (he was on the track team) and coaches. Now 22, P. attends community college and lives at home. Nestor still listens to him talk to himself to find out what is happening in his life.

Physical attacks by peers may leave autistic children with wounds on their faces, shoulder displacements and large scratches on their body, says Daniel Hoover, a child and adolescent psychologist at the Kennedy Krieger Institute in Baltimore, Maryland. In a 2018 review of studies, Hoover and a colleague found that children with autism are bullied three to four times as often as those without disabilities, including their own siblings: 40 to 90 percent of children with autism are bullied, compared with 10 to 40 percent of typical children, according to various studies.

Parents sometimes notice instances of bullying that their autistic children might not. When P. was in elementary school, for example, his peers made him the designated prisoner in a game of ‘cops and robbers.’ A middle-school yearbook years later included a picture of him in a stockade during a field trip to Colonial Williamsburg, a museum in Williamsburg, Virginia. The selection stung Nestor because multiple adults must have had to approve that picture, which she felt preserved P. as the “weird kid” for posterity. “It’s not bullying, but it sure is on that slippery slope,” Nestor says. “He didn’t understand. He was just happy to be included.”

The opposite can also happen: Some research suggests that children with autism tend to consider a broader range of behaviors offensive than their parents do. About two years ago, Hoover worked with an autistic teenager who was devastated because a boy at school had made fun of the New England Patriots, his favorite professional football team. All the peer had to do to set him off was say, “Deflategate,” referring to the allegation that the team’s quarterback, Tom Brady, had ordered the deflation of footballs used in a playoff game in 2014. The boy “couldn’t even function; he could not get over it,” Hoover says. To an outsider, trash-talking a football team might seem more like banter than bullying. But for this boy, it was extremely upsetting.

Some people with autism find even everyday experiences stressful because they see the world literally and may not pick up on the nuances of what people say or do, causing them to lose their ability to trust when people say one thing but do something else. “There’s a kind of chronic potential trauma of being in a world where you understand 50 percent of what’s going on most of the time because you’re missing all these social cues, so you’re feeling constantly out of the loop and having chronic stress around that,” says Connor Kerns, a psychologist who runs the Anxiety Stress and Autism program at the University of British Columbia in Vancouver, Canada.

Studies show that children who are introverted or anxious are even more likely to experience trauma from maltreatment than are those who are more socially active and outgoing. Lacking a social network may exacerbate the problem. Autistic children without intellectual disability may be particularly vulnerable, experts say, because they are more aware of and socially sensitive to interpersonal nuances than those who have intellectual disability. On top of it all, many autistic children are quick to react strongly when treated poorly. “They blow up, they freak out, they run, they yell, they get angry,” Hoover says. “And that might set them up as targets some more because they get a huge reaction out of the kids.”

Abusers have their own reasons for choosing autistic children as targets. Chief among them is that children on the spectrum often lack the communication skills to report abuse — or to be believed if they do. Seay remembers one young girl with a developmental disability who told her family that she was being sexually abused at school. The girl’s parents told the school administrators, but both parties doubted her story until a typically developing sibling reported that the same thing had also been happening to her. A physical exam of the sibling corroborated her account. “Individuals who exploit and abuse children know which children are more likely to be a good victim — to not say anything, to have difficulty communicating what is going on, and then even if they do, it’s going to be said that the child has lied before,” Seay says. Compounding the problem is the fact that autistic children are exposed through service systems to many different adults, raising the chances of encountering someone who will mistreat them.

Abuse of autistic children may also persist either because educators are not trained to recognize its signs in these children or because they are afraid of making things worse for the children if they say something, Corr says. “Often times, there is this fear that by reporting a child to the child-welfare system, a child with a disability will actually be worse off,” she says. “If folks in child welfare aren’t necessarily trained to think about kids with disabilities, what will happen to that kiddo once they enter that system?”

In one of Asasumasu’s earliest and most painful memories, she is a 3-year-old facing a teacher who wraps her legs around the preschooler’s chair to prevent her from going anywhere. The teacher gives instructions: “Sit. Stand. Look at me.” If Asasumasu follows the instructions, she earns a fraction of an M&M. If not, the teacher pulls her body into position or forces her eyes open.

The technique, part of a standard type of autism therapy, has become contentious. Critics have compared it to gaslighting in abusive relationships because it teaches children to comply and perform specific behaviors for rewards instead of speaking out when they feel uncomfortable. Many adults have been vocal about their traumatic memories of undergoing this type of treatment as children. “My earliest memories are of adults prying my eyes open and making me look at them,” Asasumasu says. “To this day, if somebody says, ‘Look at me,’ it’s like, ‘I’m never looking at you again.’”

Maltreatment can cause lasting damage, leading to severe stress, depression, anxiety and post-traumatic stress disorder (PTSD). Most studies have not shown an increased incidence of PTSD among autistic people. That may be because the PTSD criteria were not written for people with autism or because trauma in this group is more likely to lead to anxiety, depression and other mental health issues than to PTSD, Kerns says. What’s more, there are no reliable tools for screening autistic children for trauma, which is defined as an event or events that affect a person negatively, sometimes in an ongoing way.

Meanwhile, researchers are crafting therapies. Hoover, for example, is adapting a technique called trauma-focused cognitive behavioral therapy. The 12-week program aims to get children talking about what happened to them and to teach them how to manage their fears around those experiences. Because many children with autism may not understand verbal instructions or remember what they are supposed to practice outside of therapy, Hoover created visual schedules for them to keep at home and ramped up involvement by caregivers. The modified program also enlists children’s special interests — say, Spider-Man or Harry Potter — to help them tell their stories.

The modified method appears to help — at least anecdotally, Hoover says. Parents are reporting positive results, and autistic children who undergo the therapy are showing improved scores on the UCLA Child/Adolescent PTSD Reaction Index, a self-report questionnaire that screens for PTSD in children and teenagers. Hoover is writing a manual for the technique and says he gets multiple inquiries each week from centers around the world that want training. He and his colleagues have been collecting data on the therapy from several dozen children for the past year, and they have plans for a controlled trial.

McDonnell, meanwhile, is preparing to measure the potential benefits of the standard trauma technique on children with autism. Other teams are trying community and grassroots programs that aim to teach people about abuse, sexuality and other topics to help them stay safe.

Many autistic people come up with their own strategies. Adrienne Lawrence, a 36-year-old attorney and author in Los Angeles, California, learned she has autism about a year ago. But she has long known that she operates on logic rather than nuance to decipher her world. If, for example, a man trying to date her tells her his mother died, she assumes that simply means his mother died, and she misses that he is trying to sleep with her by playing on her sympathy. If he apologizes and says he will not lie again, she assumes he means it. The reason autistic people face so much abuse, Lawrence says, is that so many non-autistic people lie, not that autistic people miss those lies.

Lawrence has always created rules to help her navigate the world and has adopted new ones since learning she is on the spectrum. For example, she has developed specific guidelines to help her spot and avoid sexual harassment, which she has experienced at work, including specifying which types of behavior are appropriate in different situations. “Previously, I would use my 10 years of criminology study to do a statistical and logical analysis in my head as to whether it was safe to enter a man’s home, considering the facts particular to the specific situation. Now I do not rely so heavily on stats and logic but simply ensure meetings are in public places.”

For Asasumasu, life started to get better in high school, when she learned to fight back. She also befriended students she calls “weird” and “scary,” which kept bullies away. She now studies aikido, a defensive martial art that helps her wait to assess a situation before judging whether it is a threat, though she has continued to experience abusive relationships into adulthood.

Like Lawrence, she relies on pattern recognition to predict and avoid abuse. “Somebody who is rude to waiters and mean to pets is definitely going to try to hit you at some point,” she says.

Ultimately, Asasumasu says, it is society, not autistic people, that must change. “We should be able to deal with the fact that there’s more than one way of being,” she says. “For all the kinds of civility you hear in the general world, you never hear, ‘Hey, maybe don’t be a jerk to people who are different from you.’”