Euthanasia and Autism in Europe

In The Politics of Autism, I write about the dangers of eugenics and euthanasia.

At The Washington Post, Charles Lane writes of an autistic Dutch psychiatric patient Dutch psychiatric patient known as 2014-77.  Despite his doctor's qualms, he requested and got a fatal dose of drugs.

Thus did a man in his 30s whose only diagnosis was autism become one of 110 people to be euthanized for mental disorders in the Netherlands between 2011 and 2014. That’s the rough equivalent of 2,000 people in the United States.
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According to an analysis of 66 of the 110 cases from 2011 to 2014, by psychiatrist Scott Kim of the National Institutes of Health and two colleagues, Dutch psychiatric patients were often euthanized despite disagreement among consulting physicians as to whether they met legal criteria. In 37 cases, patients refused possibly beneficial treatment, and doctors proceeded anyway.
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Among the obvious risks, Columbia University psychiatrist Paul S. Appelbaum writes in a companion article to Kim’s, is “inducing hopelessness among other individuals with similar conditions and removing pressure for an improvement in psychiatric and social services.”

“Will psychiatrists conclude from the legalization of assisted death that it is acceptable to give up on treating some patients?” Appelbaum asks.

Some doctors already have. In 2009, a 37-year-old Belgian woman became distraught after a romantic breakup and began seeking a doctor to euthanize her, per that country’s law, which is similar to Holland’s.

The woman, Tine Nys, had a history of mental illness, including a teenage suicide attempt, but had more recently been doing well. In February 2010, however, she received a new diagnosis of autism and, two months later, a lethal injection. Her two surviving sisters have recently come forward to denounce the administering physician’s “nonchalant” attitude.

Autism and Euthanasia

In The Politics of Autism, I discuss the dangers to the lives of autistic people. Alex Schadenberg writes at LifeNews:

The British Medical Journal (BMJ) will publish a “study” on July 27, 2015 examining 100 requests for euthanasia for psychiatric reasons in Belgium. Link to the early release of the study. 

Four of the six authors of the study are connected to the euthanasia clinic in Belgium.
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The “study” examines 100 consecutive requests for euthanasia at a psychiatric out-patient clinic between October 2007 and December 2011. The analysis of the data closed in December 2012. The data states:

• 77 euthanasia requests were woman, 23 were men,
• 48 of the requests were approved and 35 died by euthanasia,
• 1 died by palliative sedation (sedation with withdrawal of water),
• the average age was 47,
• 58 were depressed, 50 had a personality disorder,
• 12 were autistic, (I have an autistic son), 13 had post traumatic stress, 11 had anxiety disorder, 10 had an eating disorder, etc

Transitions: Higher Education and Health Care

Valérie Van Hees, Tinneke Moyson, Herbert Roeyers have an article in The Journal of Autism and Developmental Disorders titled "Higher Education Experiences of Students with Autism Spectrum Disorder: Challenges, Benefits and Support Needs." Thee study took place in Flanders, Belgium, but the reactions are universal.  The abstract:

The transition into higher education constitutes a precarious life stage for students with autism spectrum disorder (ASD). Research on how students with ASD navigate college life is needed for the development of adequate support. This study investigated the challenges and support needs of 23 students with ASD in higher education through semi-structured interviews. Data were analyzed following the principles of Grounded Theory. Students faced difficulties with new situations and unexpected changes, social relationships, problems with information processing and time management and had doubts about disclosure. Facing these challenges simultaneously in the domains of education, student life and daily (independent) living, had a major impact on students’ well being. Besides these challenges, students also reported benefits that contributed to success in the three domains. They pointed out to a set of recommendations for support. These findings are linked with previous research and implications for higher education institutions are extrapolated on the basis of these findings.

This quotation from a student points out the dilemma for parents -- worldwide -- who have been scrupulous in providing structure for their ASD kids.

I think starting working later on could be a problem. I have always lived in a structure that was provided for me by others: infant school, elementary and secondary school, even in higher education. But after graduation, what will happen then? There will be no such structure. At that point everything will be new then, and open. I will have to organize my own life. That really frightens me. I could try to excel now and be a high performer at university. But once I will have finished my education, I fear that I will not know how to organize my life, and will end up with the beggars in the railway station. (David, aged 19, university)

Nancy C Cheak-Zamora and Michelle Teti have an article in Autism titled “`You Think It’s Hard Now … It Gets Much Harder For Our Children': Youth With Autism And Their Caregiver’s Perspectives Of Health Care Transition Services." The abstract:

Adolescents with Autism Spectrum Disorder diagnosis often have complex comorbid physical and mental health conditions. These youth rely heavily on their medical providers and struggle through the often rocky transition out of pediatric care into adulthood and adult-centered care. This study is among the first to qualitatively examine the health care transition experiences of youth with Autism Spectrum Disorder and their caregivers. We conducted four focus groups with youth with Autism Spectrum Disorder (n = 13) and their caregivers (n = 19) and used thematic analysis strategies to identify key themes. Parents’ discussions emphasized (a) loss of relationship with provider and lack of support transitioning from pediatric to adult care, (b) providers’ lack of knowledge about Autism Spectrum Disorder, and (c) concerns about losing guardianship. Youth emphasized their confusion and anxiety around (a) medical providers’ role, especially in the transition to adulthood; and (b) managing their medical lives independently. Our findings are important because they not only improve our understanding of health care transition needs among youth with Autism Spectrum Disorder and their caregivers but demonstrate a sound methodological procedure to facilitate input from youth with Autism Spectrum Disorder.

This quotation from a parent inspired the title:

You think it’s hard now … It gets much, much harder for our children [after they turn 18] … They won’t even give you an idea who this next doctor is because they don’t know until your child is 18 … Our child had no chance to meet this person, no chance in a safe environment with their old doctor to get comfortable with the [new] doctor. Unfortunately [healthcare] kind of really sucks for our children.