Introduction

Webcast archive: Suicide, euthanasia, and mortality among autistics

This week, we discuss the many reasons that autistic people - and people with disabilities in general - have shorter life expectancies. We also pay tribute to advocate Bob Liston.

Webcast archive: Suicide, euthanasia, and mortality among autistics

(Please note that here will be a delay in posting the webcast video online; the link is coming soon.)

In this episode of Euthanasia & Disability, Amy Hasbrouck, Christian Debray, and Taylor Hyatt discuss:

  • Suicide, euthanasia, and mortality among autistics
  • Remembering Bob Liston

Please note that this text is only a script and that our webcast contains additional commentary.

SUICIDE, EUTHANASIA AND MORTALITY AMONG AUTISTICS

  • Sarah Kurchak is an autistic blogger who wrote an article on February 7, 2018 about achieving the ripe old age of 36 years.  She pointed to a study that found the average life span of an autistic person was 36 years, half that of the general population.  In her post, Ms. Kurchak listed some of the risk factors faced by autistics.
  • Neurotypical people talk about autistic children “wandering” or “eloping” from a place “where they are safe.” People who are unaware of hazards around them may be in danger from crossing streets, climbing into enclosed spaces or being attracted to pools or lakes.  Autistics point out they generally leave places when there is an uncomfortable stimulus in the environment, a flickering light or a sound that grates on their senses to the point where they just have to get away from it.  About half of children on the spectrum wander, and risk death by drowning, suffocation and traffic accidents.  Autistics are forty times more likely to die of injuries; and more than a quarter of all people on the spectrum (28%) die of an injury.
  • Being autistic also correlates with a high rate of seizure disorders, estimates of the number of autistics who also have seizures range from 20 to 40%.  Seizures can cause injuries from falls, or breathing or heart problems that occur during or after the seizure.
  • People with cognitive and psychiatric disabilities and autism are subject to physical, mechanical and chemical restraint and seclusion:
    • Physical restraint is limiting a person’s ability to move their body by the action of another person
    • Mechanical restraint is when a device, such as straps, handcuffs, a rolled mat, or a straitjacket, is used to prevent the person from moving or changing position.
    • Chemical restraint is when a person is given a drug which alters their mood or suppresses their physical or psychological response.
    • Seclusion is when a person is placed alone in a room, cell or closet, and prevented from leaving.
  • Restraints are for “emergency situations,” and are used in many different institutional settings throughout the life span; such as schools, group homes, sheltered workshops, psychiatric hospitals, long-term care facilities, prisons and nursing homes. Researchers study the use of restraint and seclusion in connection with the setting where the restraint is being used, so it’s impossible to find statistics on the total number of deaths of people of all ages in restraints and seclusion.
  • The “emergency” that triggers the use of restraints is supposed to be limited to when a person is harming themselves or another person and when no other method can prevent the harm.  The person is supposed to be supervised, and the restraint removed as soon as the situation is under control.  But these guidelines are usually not observed; restraints and seclusion are often used when people are not following orders, people are left alone in restrains for long periods, and the staff rarely tries to figure out and resolve the cause of the behaviour that led to the use of restraints.
  • The use of restraint or seclusion is generally governed by provincial or state law; no federal laws exist either in Canada or the U.S. limiting the use of restraint or seclusion in schools, for example, or requiring such incidents to be reported.  In 2015-16, the U.S. Department of Education Civil Rights Data Collection reported 122,000 incidents of restraint or seclusion in public schools, but this is probably a huge under-estimate.  A 2017 article in Education Week noted that many large school systems (such as New York and Chicago) reported no disabled students were restrained or put in seclusion.  The Department of Education figures show kids with disabilities represent 12% of students in public school districts, but were 71% of students subjected to restraint, and 66% of those put in seclusion.  And though black and African-American kids make up only 15% of public school students, they represent 27% of those who are restrained, and 25% of the students put in seclusion.
  • Like other people with disabilities, Autistics are at higher risk of death at the hands of their parents or caregivers than non-disabled children.  These homicides are rarely prosecuted with the same vigour as the deaths of non-disabled children, and parents who kill autistic children often receive sympathy and support from the media and the general public.
  • Another threat to the lives of Autistics is the way the condition is viewed by many parents, professionals, and researchers. Groups like Autism Speaks portray autism as a sort of monster that attacks children and takes them away from their families. Parents are encouraged to wage war on Autism, to save their child from the condition.  This may include inflicting painful and dangerous treatments on their children in order to “cure” them, even at the risk of their lives.
  • Many of the autism “cures” are based on the false belief that vaccines against childhood diseases somehow cause autism. This claim has been debunked by many studies over the years, yet celebrities, pseudo-scientists and parents continue to link vaccines with autism.  This has inspired a movement of parents who refuse to vaccinate their children, which has led to outbreaks and deaths from illnesses which had been all but eliminated in the developed world, like mumps, measles, whooping cough and chicken pox.
  • Among the lethal Autism “cures” are:
    • Miracle Mineral Solution (MMS) which is essentially industrial bleach, given as a drink, an enema, and rubbed on the person’s skin;
    • Lupron therapy, better known as chemical castration, which disrupts the person’s hormones by dramatically reducing the level of testosterone in the child’s system;
    • Chelation therapy, where “bad” minerals (like mercury) are supposedly removed from a person’s body by taking a drug that binds to the metal in the bloodstream, and carries it out through the kidneys and urinary system. The problem is that chelation also removes nutrients like calcium, copper, and zinc that are essential to good health;
    • Hyperbaric oxygen therapy exposes a person’s body to a high-pressure, pure oxygen environment, but it can cause seizures, lung collapse and damage hearing and vision;
    • stem-cell therapy (though it’s not clear exactly what the stem cells are supposed to do) and exorcisms.
  • The view of Autism as an invader or enemy to be fought against has other negative consequences;
    • Parents subject their children to harmful, painful and dangerous therapies in an attempt to eliminate behaviours that fall outside the norm. Besides restraint and seclusion, schools like the Judge Rotenberg Center use “aversive” (unpleasant) sensations, such as electric shocks, vinegar sprays, loud noises and food deprivation to “punish” unwanted behaviours, while compliant behaviours are rewarded with food and other privileges.
    • Though most Applied Behavioral Analysis practitioners don’t use aversive techniques, many Autistics find the long hours, constant badgering and intrusive techniques required by ABA to be insensitive, unhelpful, and even traumatizing.
    • While claiming to love their children, parents who say they hate the child’s autism are, in fact, rejecting a most basic part of who their child is.  This makes it impossible for the autistic person to have a healthy self-esteem.
  • Though estimates vary, many researchers have found that autistics are at high risk for suicide; up to ten times more likely than the general population.  A 2018 study found that 72% of autistics without an intellectual disability scored above the recommended cut-off on a suicide risk questionnaire.  Autistics also report problems getting appropriate psychological supports, which add to depression, hopelessness and suicide.
  • In Belgium and the Netherlands, where euthanasia is allowed for psychological reasons only, autistics are over-represented among the people who die by euthanasia for those reasons.  In a 2015 study of 100 people who asked for euthanasia for psychological reasons, researcher and psychiatrist Lieve Thienpont found 19 people on the autism spectrum; seven who had been diagnosed before making the request, and 12 whom she diagnosed in testing done as part of her study.  The study does not say how many of the 48 people who were determined eligible for euthanasia were Autistic. Another study of 66 people euthanized in the Netherlands for psychiatric reasons showed that two had an autism diagnosis. This study emphasized the inconsistency in clinicians judgments as to the person’s capacity and the voluntariness of the euthanasia request.
  • Anyone who spends time around people with physical disabilities knows that we have a shorter life span.  Our bodies wear out faster, our conditions sometimes lead to life-threatening illness, and our use of medical services subjects us to dangerous hospital-born infections and medical error.  It’s unfair and unacceptable that misunderstandings and prejudice should play such an important role in the deaths of people on the Autism spectrum.

REMEMBERING BOB LISTON

  • Bob Liston was an original member of Not Dead Yet in the 1990s, and participated in multiple actions in Michigan against Jack Kevorkian and the Hemlock Society.  Bob died at his Montana home on May 7, 2019.
  • Bob, along with his wife Marsha Katz, supported Not Dead Yet actions in Michigan to “Jail Jack” until Kevorkian was finally convicted and imprisoned for the lethal injection euthanasia of Thomas Youk. Along with Not Dead Yet he also confronted a bioethics conference held in Lansing, and a pro-assisted suicide conference held in Ann Arbor by the Hemlock Society, which later helped fund Kevorkian’s legal defense (and eventually morphed into “Compassion and Choices”). Bob and Marsha also helped defeat assisted suicide in the Michigan legislature.
  • Bob was a fierce advocate with a gentle and ever present sense of humour.  Follow the links to Not Dead Yet’s tribute to Bob and his obituary.