Managing Editor's Note: Below is a research paper written by our Contributing Editor Natalie Palumbo, who is a freshman at Ringling College of Art and Design in Florida, and sister to an older brother with autism.
By Natalie Palumbo
The Safety of Low and Non-Verbal People in the Autism Community
The definition of Autism has evolved since the early 1990s. Symptoms and severity vary, so Autism is referred to as a 'spectrum' disorder (ASD). For many families, the diagnosis raises many fears as well as questions. Keeping their children with autism safe is the concern most agonizing.
The specific needs of people with low-verbal and non-verbal autism can be extremely challenging to manage in a public setting. Professionals in public service need to be educated on autism so they understand these challenges, and decrease the likelihood of misunderstandings that can lead to tragedy.
There is an ongoing issue of safety among those with low-verbal and non-verbal autism. Many parents share similar concerns about proper care, and high instances of reported abuse makes parents more apprehensive to trust. After conducting an informal survey, most parents reported being fearful of wandering, and drowning, which are common occurrences in the autism community. People with autism tend to wander impulsively when not restricted by walls or barriers. Adding to that fear is the common tendency for ASD children to be fascinated by water.
Unless the child with autism can swim, the results can be fatal.
Pamela Mikes, whose youngest child has autism, stated that, “The multiple children found dead in, or by, new water sources just this summer, it almost seemed like weekly! This is the biggest fear ever being the parent of a child with autism by far.” Many in the autism community are also prominent advocates, and took the time to share their perspectives. Mark Blaxill is a Harvard educated business consultant, published author, autism advocate, and Editor at the daily Web magazine ‘Age of Autism’. According to Blaxill, a significant safety issue for people with autism is abuse from caregivers, and neglect in medical facilities.
Surveillance videos of children with autism being abused in school settings can be easily accessed by web news and social media. David Baier, teacher at the Alternative Education Foundation in Fort Lauderdale, Florida was convicted of physically abusing a twelve-year-old student with autism, which was captured by surveillance video recorded in July 2012. According to the police report, this child was misbehaving on a school field trip, and Baier was put in charge of managing the student. The child was taken to Baier’s classroom, and instructed to stand for five minutes. The child crouched down, and Baier scolded him to stand back up, then grabbed the child by the hair to force him to stand. The child was then told to sit so Baier could address his behavior. Baier threatened to throw the boy to the ground, then pulled the student from his chair, threw him to the floor, and pinned him down. According to police, the child did not seem physical or violent (WLPG Local 10 Miami News).
Jennifer Larson, who has a son with autism, says she is fearful for the future when she is, “not there to protect [her son] from abuse”. Many autism parents fear for the safety of their children when they can no longer care for them. Baier was charged with two counts of child abuse. In April 2013, Baier was arrested again following additional accusations of abuse by other parents (WLPG Local 10 Miami News). Parents hope abuses never happen to their children, especially if they are vulnerable with a disability. Pam Preschlack has a fourteen year old son with autism. Preschlack is very concerned about, “cruel people who could take advantage of [her son] Will”. Preschlack tries not to let her, “mind wander there”, which is a sentiment shared by many autism parents.
Some children with autism have sensory issues, but are verbal. These children are able to share their concerns, but can be dismissed by support staff. Nancy Hokkanen has a fifteen year old son with autism. Hokkanen described an incident that occurred at her son’s elementary school during gym class. The students were expected to climb a high wooden apparatus. Nancy’s son is verbal, and wanted to avoid the activity because he was afraid. The gym teacher made no accommodations for her son’s autism. As a result, Nancy’s son fell while climbing, and got a large bruise on his thigh. Hokkanen promptly emailed the school with a photograph of the bruise, and subsequently placed her son at another school with a more appropriate program. For some children, the problem is a lack of appropriate support staff. Gabriella True has a son with autism. While True’s son was traveling on the bus, he somehow got out of his car seat. However, his foot got caught in the strap, and he was hanging by his ankle, and his head was repeatedly hitting the floor. Witnesses told True that there was no aide attending to the riders, and the bus driver wasn’t paying attention.
Educational programs should be staffed with people who understand autism. In order to have proper care, sufficient funds are needed to support these services. However, without people in legislation who understand the needs of the autism community, the likelihood for reform is very slim. This problem is not limited to the United States. In the United Kingdom, there is a program called the Aiming High for Disabled Children Programme, which provides support for children with autism to improve their skills and social development. According to NPC reports, it is uncertain whether this and other programs will continue to be funded. Campaigners lobbied for the landmark Autism Act in 2009, which required the UK Government to, “develop a strategy to ensure that adults with autism have access to services and support.” However, budget cuts threaten the survival of these programs. Without proper funding, services will be eliminated, and people with autism will be at risk. (Salman, The Guardian)
In addition to being at risk, most people with autism lack the ability to report abuse. Abuse in the classroom is not always documented by surveillance footage. Some educators abuse their authority in front of a third party. At Stone Mountain Middle School in Stone Mountain, Georgia, a fourteen year old boy with autism named Wesley Malone was being abused by the classroom’s paraprofessional. Wesley’s family observed behavioral changes, and noticed bumps and scratches on his face and head. According to the specialist in the classroom, the paraprofessional demanded that Wesley give her the broomstick, started slapping it on the table, and then started poking him with it in order to scare him. According to the specialist’s report, the paraprofessional’s attitude was, “This is what we have to do. We have to instill fear in him.” Wesley’s father, John Malone, was horrified that such abuse was demonstrated toward his son, and worse yet in front of a witness. John said, “If they had the audacity to use a broom handle in front of a third party, what are they doing when someone isn’t there?” (WSB-TV Atlanta)
When students are mistreated in school settings, it could prompt behaviors the child wouldn’t normally exhibit, especially when they are unable to report. According to Rebecca Pfeffer of Northeastern University, this kind of maltreatment in school settings can result in the victim expressing significant changes in behavior, such as, “aggressive and self-injurious behavior, mood swings and temper tantrums, resistance going to school, soiling, diminished verbal language, and changes to sleeping and eating patterns.”
Appropriate services for children with disabilities depends on adequate funding. Congress passed the Individuals with Disabilities Education Act in 1975 which promised federal funding that would cover 40 percent of the cost of educating students with disabilities. However according to Nancy Anderson, an attorney with Alabama Disabilities Advocacy Program, “The most it's been 17 percent. It's up to local school districts and states to pick up the slack. That can create an atmosphere in which schools have an incentive not to test students for disabilities, or provide the care those students need.” Federal Legislators put in automatic cuts, known as sequestration, to reduce the government's deficits. According to the National Education Association, sequestration will cut $949 million nationally from special education funding over the next 10 years. Anderson worries, “The combination of less oversight and fewer funds threatens the most vulnerable of public school students.” (Burkhalter, Tribune Business News). IDEA was implemented in 1991 guaranteeing access to 'appropriate' education. IDEA was reauthorized in 2004 with amendments (IDEIA) to 'Improve' quality of education. These amendments allowed individual goals and evaluations under IDEA, as opposed to standardized student assessments under the "No Child Left Behind Act" of 2001 (NCLB). According to Shima Kalaei of the Thomas Jefferson Law Review, “The alignment of these Acts, however, proves to be an insufficient solution in educating students with autism.” (Kalaei, Thomas Jefferson Law Review). Focusing purely on academic skills does not teach children with autism the functional skills necessary for an independent life. The inability to communicate effectively hinders the possibility for people with autism to be self sufficient, or gain independence.
Vulnerability is a major concern for autism parents. One of the most stressful vulnerable traits is ‘wandering’ behavior. Wandering can best be described as impulsively running or walking away to aimlessly explore, which is complicated by the communicative challenges of autism. Becky Estepp had a frightening experience when her son with autism was just two years old. They were in an airport together when her son suddenly ran away from her. For Estepp, his autism made this event even more terrifying. Luckily, an unarmed policeman found her son in the international terminal.
What makes wandering even more stressful for parents is when law enforcement must be educated about autism on the spot before they can find the lost child. It is difficult, or sometimes impossible, for autism parents to explain dangers to their low-verbal and non-verbal children. Parent Gabriella True had a frightening experience with her son that could have ended tragically. True lived on the second floor of an apartment complex, and always had safety netting on the railing. One day, maintenance workers came by to paint the railing, and forgot to re-attach the netting. Her son’s ABA therapist (Applied Behavior Analysis) was discussing his progress. In a split second, True saw her son on the outside of the railing on the back deck. Immediately, while trying to keep her composure, True and the ABA specialist pulled him back inside. According to True, her son, “does not know anything about danger. It took me months and months to not have nightmares after it happened.”
Wandering can lead many ASD children into dangerous situations. Unless Law Enforcement is trained to identify autism, tragic misunderstandings can occur. In Ashland, Oregon, an eleven year old girl with autism was found at four o’clock in the morning walking alongside I-5 without any clothes on. Adam Bednar, the man that found her, told police he thought she was, “on bath-salts, too much meth, something” and kept driving next to the girl until police arrived. The trooper called for the eleven year old to stop, and threatened to use his tazer. When the young girl didn’t respond, the trooper followed through with the tazing. According to Bednar, she, “fell face first on the ground” (Bourke, ABC News Watch 12).
The officer’s lack of ability to identify autism led to unnecessary injury of this child. Rebecca D. Pfeffer of Northeastern University conducted a study on the Public and Personal Safety of Children with Autism Spectrum Disorder (ASD). According to Pfeffer, “Those that have cognitive disabilities experienced victimization at a rate of 34.3 per 1,000 respondents, nearly double the victimization rates for other categories of disability, which ranged from 9.7 to 18.2 per 1,000 respondents.” Another problem, according to Pfeffer, is their inability to report. “Maltreatment places them at risk for persistent victimization, as perpetrators come to understand them as easy prey”, noted Pfeffer. According to Autism Advocate Teresa Conrick, what needs to be done to address these issues is, “national to local education of first responders, and [education] to the public via public service announcements, and training for law enforcement.”
A lost child is a terrifying thought, especially when they are unable to speak and understand. Wandering fearlessly can result in severe injury or death. Sylvia Pimentel, California Chapter President of the National Autism Association, had a terrifying experience when her son was just four years old. Pimentel lived in a mountainous region, and her son with autism was a runner. One evening around dusk, Nicholas took off running from the house. To make matters worse, there were mountain lions where they lived, and large ponds nearby. Pimentel and her husband went in separate directions searching everywhere for Nicholas. They were both extremely conscious of the many dangers present. Pimentel’s husband found Nicholas 20 minutes later walking on the road wearing only a t-shirt and pull-up, and completely unharmed. This was such a frightening experience that they moved out of the mountains back into a suburban neighborhood.
Sadly, these kind of stories are very common, and parents have to go to drastic measures in order to keep their children safe. Sherry Young has a niece on the spectrum named Katy. Young has had custody of Katy since she was 5 months old because her parents could not care for her. Because Katy is a wanderer, Young has to secure her in her room every night with chain lock, which can quickly be removed in emergencies. Other parents have criticized Young claiming this is abuse in some way. Young reassures that, “Safety is our priority, and she is in no way abused.”
Perhaps the biggest concern to families of children with autism, is safety within medical facilities. On March 11, 2013, Lisa Goes, Contributing Editor at the Daily Web Magazine ‘Age of Autism’, learned that Dorothy Spourdalakis had been waiting for nineteen days for her son Alex, with non-verbal autism and cognitive impairment, to receive a proper medical examination while hospitalized for his gastrointestinal issues. On February 16, 2013, Dorothy took Alex to Gottlieb Hospital in Melrose Park with the help of paramedics and police. Alex showed symptoms of severe gastrointestinal distress, which caused severe behavioral issues. Due to his aggressive behavior, Alex was placed in restraints. For the next several days, Alex was restrained to a bed wearing no clothes while suffering with bouts of vomiting and severe constipation.
Alex was given Colace for his constipation, and it would take security staff more than fifteen minutes to arrive to unlock the restraints so Alex could use the bathroom. Alex would scream when he knew he was going to vomit. However, security took several minutes to respond and unlock Alex, so he would lay naked in his own vomit. Alex would be wiped down, and then returned to the restraints. Neither Dorothy nor Alex bathed for thirteen days while administrators attempted to devise a care plan for Alex. According to Goes, Alex was never officially assigned to a room at Gottlieb as a patient. Alex was then transferred to Loyola University Medical Center on February 28, 2013.
The doctors at Loyola determined Alex would need the care of a pediatric gastroenterologist, neurologist, and anesthesiologist. On March 1, 2013, a gastrointestinal consult was ordered, however the gastroenterologist did not visit Alex and Dorothy until March 5, 2013, which was four days after their admission. A physician informed Dorothy that Alex was ‘pushed back’ because of the anesthesiologist’s ‘complicated’ schedule. On day seventeen, the gastroenterologist visited for 15 minutes, and said he did not feel the need to give Alex a physical exam.
On March 6, 2013, Dorothy met with another gastroenterologist who observed that Alex was in pain. For the first time in eighteen days, an appropriate medical exam was ordered. A Certified Nurse Executive (CNE), spoke with Dorothy stating that the Joint Commission on Accreditation of Healthcare (JACHO) needed assessments by a physician every four hours to validate the need for a child to remain locked in restraints. According to the CNE, due to the lack of information provided by Gottlieb, this requirement had not been met. The CNE promised Dorothy that a security officer would be assigned to Alex’s room. The CNE later reneged on that promise stating that it was ‘against hospital policy’.
In spite of the inconsistencies, according to U.S. News & World Report, Loyola ranked in the top 25% of hospitals nationally in 10 different specialties including Gastroenterology and GI Surgery. Gottlieb Hospital also received a high performance rating (top 25% nationally) in, “Neurology, Neurosurgery, and Orthopaedics.”
Sadly, Alex Spourdalakis did not live to enjoy recovery. He was killed in June 2013 by his mother in what was meant to be a murder-suicide. However, Dorothy Spourdalakis survived and is facing murder charges. Medical Insurance had denied any further treatment for Alex, and his mother sought to end their collective suffering (Wakefield, Who Killed Alex Spourdalakis? Promo).
This tragic story has divided the autism community. Some focus on the family’s struggle leading up to the murder, while others focus on the harsh details of the murder. The National Council on Disability (NCD) is critical of those viewing the Alex Spourdalakis murder case as a ‘tragedy’. NCD Chairperson Jeff Rosen issued a statement saying that Dorothy Spourdalakis rejected services, “offered to her by the Illinois Department of Children and Family Services” and believes that the death of Alex Spourdalakis should be defined as a hate crime. Rosen cites that Alex’s murder, “was planned at least a week in advance. And it was motivated by Alex's disability. Because Alex Spourdalakis was autistic”. In Rosen’s mind, “The issues should not be confused. Alex Spourdalakis did not die because of lack of services, or because living with or raising a child with a disability is difficult.” Rosen implies that sympathizing with Dorothy’s situation is unacceptable repeating that ‘murder is wrong, and Dorothy is wrong for doing it’. (Targeted News Service, Washington D.C.) Even with the community divided, most agree that Alex suffered needlessly in life, and in death, and this must be prevented in the future.
Because of what happened to Alex, many autism parents are extremely cautious when choosing a medical facility for their children. Autism advocate Amy Rosenquist is a mother of two children on the spectrum, Annelise, age twelve, and Noah, age fifteen. For Rosenquist, the Spourdalakis story, “points out the real potential for autistic people demonstrating medical conditions to be misinterpreted and maltreated to a horrifying extent.” For Rosenquist, Alex’s story highlights why she refused to rely on medical providers, “who didn't understand autism medically, or know how to approach my son.” Some Autism parents feel doctors ignore the symptoms of chronic illness. They believe their children could have medical issues causing them pain and influencing behavior. Nancy Hokkanen, an autism parent, writer, and advocate, stated that too many caregivers, “don’t realize that many children and adults with autism may be acting out because they are feeling physical pain, particularly from undiagnosed gastrointestinal disease.”
Proper education is needed to properly attend to a person that has autism. Some groups at the local level, such as Montgomery County Police in Washington D.C., have begun to consider the needs of people with autism. Sixty public safety officers participated in an autism training program. The officers were taught how to handle individuals with autism in life threatening situations such as automobile accidents, fires, and other public emergencies. The officers were shown film clips of people with various levels of severity so they could better understand the spectrum of autism. Some of the officers found this education vitally important because they have children on the autism spectrum.
Assistant Chief Scott Graham said it was necessary to determine the difference between an, “incapacitated person from a person with autism,” and that this is critical to their safety. Captain Bill Cannata understands that there are people with autism that cannot tolerate physical contact. Cannata has a son on the spectrum, and is familiar with the broad range of communicative styles of people with autism. The instructional program is managed by Cannata, and it is being funded by a grant from the Department of Homeland Security. This allows Cannata to provide free education to public safety officers. This autism training is imperative to the safety of everyone on the spectrum, and should be emulated on a national level (Zott, The Examiner).
For anyone working with people with autism, proper training should be mandatory. Nancy Hokkanen feels that many safety risks for people on the spectrum, “arise from their caregivers -- those who lack training and support, become overstressed, display apathy or neglect, or have been caught abusing their charges.” Therefore, this kind of progressive education can only be beneficial, and needs to expand. However, in some cases, autism training is available, but not mandatory. Margaret Spoelstra is the Executive Director of Autism in Ontario, Canada. Her organization has offered autism training to Toronto police, but they have failed to take advantage of it. That failure became the focus of debate when Toronto police had to defend their decision to handcuff an out-of-control 9 year old child that was upset by bullying. Parents say this event has left the child fearful of police. To the parents, “handcuffing the child shows all too clearly why they need training about autism and helping an autistic person in distress”, implied Spoelstra (Chew, Care2). In order to properly handle situations where a person with autism is involved, education must be mandatory.
People with cognitive impairment and autism are twice as likely to be abused over individuals with other disabilities. Low-verbal and non-verbal people with autism are especially at risk given their inability to report abuse. Proper education into the broad spectrum of autism is needed for law enforcement, medical personnel, and school facilities to avoid frustration, neglect, and abuse. Only with proper knowledge can misinterpretations be avoided. Karen Fuller, an autism parent, stated that, “All stories highlight our fears. Fears for my son’s future. Fears for the world’s children.” All parents should feel confident that services meant to assist can be safely relied upon. For those among us most vulnerable, and with the autism numbers growing, there needs to be reform.
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