Thursday, April 18, 2024

Response to Autistic women who plan to die by euthanasia.

By Meghan Schrader

Meghan Schrader
Meghan is an autistic person who is an instructor at E4 - University of Texas (Austin) and an EPC-USA board member.

I am commenting on the cases of the young women with autism, ADHD, depression and Borderline Personality Disorder who are planning to have their lives ended in Canada and the Netherlands from the perspective of someone who also has autism, ADHD and depression. I am not a psychologist and I’ve never met either person, but I will do my best to share insights about those situations based on my own experiences.

The cases strike me as presenting a lot of issues so this article is long. The issues that stick out to me are the devastation a person might feel when they are told that their mental health conditions can never improve, the abusiveness of that advice, the right to die movement’s flippant attitude toward death, the nature of true friendship, the autistic tendency to fixate, and the complex experience of autonomy that occurs when a autistic adult lives with their parents.

I’ll start with the 28-year-old woman in Belgium with autism, BPD and depression. Ter Beek’s situation makes me think of two issues, one being the euthanasia movement’s flippant approach to death and the potential inaccuracy or hubris of doctors who dole out mental health diagnoses. Ter Beek was told that she could never get better, which is something I’ve been told during my struggles with treatment resistant depression, at my lowest moments after multiple futile hospitalizations and medication trials. Hearing those predictions was gutting, and I understand why some people who get that kind of prognosis might feel motivated to have their lives ended.

But just giving up on a patient and suggesting that they die is abusive. It’s common for clinicians to arrogantly dole out demoralizing predictions to disabled people that would make anyone fearful of the future; and that can certainly contribute to the conclusion that one should die. I’ll never forget one counsellor at a partial hospitalization program who barely knew me, but took it upon herself to announce to me that the combination of my learning disability, autism spectrum disorder and depression was so disabling that I would never work and would have to live in a group home for the rest of my life. (That’s not true; now I live in an apartment and work at a job I love.) A medical system or physician who tells people, “you’ll never get better; maybe you should kill yourself” is doling out an even more arrogant and abusive recommendation.

It’s worth noting that dark predictions of things never getting better fit into a pattern of people with Borderline Personality Disorder struggling to access adequate care. People with BPD are more likely to have clinicians give up on them because of stereotypes about people with BPD, because people with BPD have a higher incidence of suicide, and because the symptoms of BPD sometimes make the person difficult to interact with (Link to article). But, recovery from BPD is very possible; in fact, the woman who developed Dialectical Behavior Therapy, the gold standard treatment for BPD, had the disorder herself (Link to article). I have a colleague at my job who has BPD, and she’s now living her best life, doing wonderful work with our students. There’s also evidence that the symptoms of BPD, which can be very acute in a person’s twenties, decline with age. (Link to article) So, often clinicians assume that people with BPD are bad or unfixable people, but it’s just not true. People with BPD can effectively manage their condition and lead meaningful, happy lives (Link to a book on the topic).

Another thing that stood out to me when I looked at the article about Ter Beek is the euthanasia movement’s trivialization of death. Now, a mentor who provided feedback on this article pointed out to me that people have many different ways of processing what death is. He commented: 

“Many might argue that fear is not the only appropriate or even “reasonable” response. Many religious systems perceive death as a step toward eternal life, and other think of death as ‘not being,’ that is as potentially neutral as being, perhaps within the will/power of divine order that transcends us.” 

Zoraya ter Beek
Fair enough, but I still think that the right to die movement is trivializing the harm of death. In the interview she did for the Free Press, Ter Beek says that she’s a little scared to die, but the picture of her accompanying the article has her looking sanguine in a way that reminds me of someone who is modelling clothing; she refers to the urn her ashes will be kept in as “my new house;” as though being a pile of ashes kept in a urn on someone’s desk is the equivalent of buying a condo (Link to article). This description of death indicates an unverifiable certainty that death is a doorway to something good. The right to die movement’s current activities are as though many of the proponents have inured themselves to the concept that death is the great unknown and that dead people are lowered into graves where their bodies are eaten by worms. I think that if Canadian and Netherlands culture treated death with more reticence and a less like a trip to some amazing wonderland of delight, the choice to be dead might not seem so appealing to disabled people who are signing up for euthanasia.

Now I’ll move on to the the young woman in Canada with autism and ADHD, MV. The thing that sticks out to me the most is that she lives with her parents, and as someone who lived with my parents on and off in my twenties, I know that that can be a complex and potentially difficult experience for everyone involved, even when everyone is trying their best and loves each other very much. So, I’ll consider how I think that situation might be impacting MV’s “MAiD” request.

First of all, we live in a culture that highly prizes autonomy and expects adult children to move out of their parents house, and I’m wondering if that’s making the experience of living with her parents seem intolerable to MV (Link to an article). But, complete independence is not the only valuable or valid conception of autonomy to operate from. In the Latino culture (Link to article) it is common for multiple generations of a family to live in the same house far into adulthood. (Link to article).

Hence, I think it might help MV to consider that the Latino culture and disability justice culture emphasize interdependence-autonomy with help from others in the context of supportive relationships. Disability Studies professor Paul Longmore put the difference between mainstream Western conceptions of autonomy and the disability justice movement’s general approach to autonomy as follows:

“For example, some people with disabilities have been affirming the validity of values drawn from their own experience. Those values are markedly different from, and even opposed to, nondisabled majority values. They declare that they prize not self-sufficiency but self-determination, not independence but interdependence, not functional separateness but personal connection, not physical autonomy but human community. This values-formation takes disability as the starting point. It uses the disability experience as the source of values and norms. The affirmation of disabled values also leads to a broad-ranging critique of non- disabled values. American culture is in the throes of an alarming and dangerous moral and social crisis, a crisis of values. The disability movement can advance a much-needed perspective on this situation, It can offer a critique of the hyperindividualistic majority norms institutionalized in the medical model and at the heart of the contemporary American crisis.” (Link to article)
So, if I could talk to MV, I would tell her that there’s no need to be ashamed that she lives with her family just because that’s not what most adults in Canada do; plenty of competent, fulfilled adults in this world do the same thing. In a way, those of us disabled adults who live with family are rebels living in a way that is counter-cultural, and that cultural deviance really isn’t a bad thing.

However, I also know that being a disabled adult child living in your parents house can sort of feel like you are stuck in a state of perpetual adolescence, and that this can cause a person to feel repressed. When I was living with my parents I was grateful for their support, but I wasn’t able to have the level of autonomy that I think most twenty-somethings want, and we sometimes struggled to communicate effectively about what each one of us needed. There were a lot of times when I found my parents well-meaning advice intensely grating or that they found various everyday behaviors of mine disruptive. That situation led to some very demoralizing conflict; being “roomates” with your parents can make some daily interactions start to feel like fingers on a blackboard, even if those family relationships are very loving.

My choice to move to Texas in my mid-thirties was also a good one. My parents and I are still very close, but they have more space to have time together as a couple and I have more room to say, “No, I don’t want to do that,” or, “I, Meghan Schrader the independent disabled adult, want help with thing A, but not thing B.”

Given my own experiences, I’m wondering if MV’s desire to die by “MAiD” is at least partially motivated by an attempt to assert autonomy in a situation where she isn’t experiencing autonomy in other domains of her life. Is there perhaps another family member or friend who she could live with for a while, who could provide support for her disability and would provide the same level of encouragement for her to live, but with whom she might feel a greater sense of autonomy? Would that make her feel as though she has better adult choices to look forward to? One thing that I think would’ve helped me in my 20s is going to a treatment facility for people with clinical depression; is that the kind of thing that MV might be willing to do that might give her a break from her environment? Perhaps MV could go on a long retreat somewhere? If a change in MV’s living situation isn’t possible right now, are there other ways that she could have more opportunities to make choices about her daily routine, establish clearer boundaries with others and direct the course of her life? (Link to a book on this topic). 

Of course, as I’ve said, I am not a member of this family and I don’t know what’s going on in their everyday lives; MV struggling to assert herself in a situation where she isn’t getting other opportunities to assert autonomy is just the kind of thing that I think might be going on based on my own experience.

However, although giving MV more autonomy in general strikes me as potentially helping to alleviate her desire to die, MV’s Dad’s statement that MV is “obsessed” with MAiD and that the obsession is related to her autism and ADHD strikes me as providing important insight into how she is experiencing the conclusion that she should die by “MAiD,” and that these dynamics complicate her experience of autonomy. An article on the situation reads:

“The wrinkle, and perhaps the tragedy, in this case is that the woman, identified only as MV, has autism and ADHD, lives with her parents and has never had an independent life. Her father, identified as WV, argued that her condition is mental, not physical, so she doesn’t qualify for MAID under current law. Her condition, he said, led to her being “obsessed” with MAID.” (Link to article).
I think some people might read that statement as a parent erroneously and paternalistically painting an adult autistic child as lacking agency, but I can say from experience that the autistic tendency to fixate is a real thing. This hyper focus is even more intense in those of us who also have ADHD, and that hyper-focus can sometimes make it difficult to break out of irrational or destructive thinking patterns (Link to article). In that case the person is not “incompetent,” but the fixation distorts the person’s ability to think through all the facts about whatever they are fixated on, sort of like if the person were mildly intoxicated (Link to image). A family member’s efforts to prevent a loved one from making a choice based on those thinking patterns are not “paternalistic,” it’s the family member being loving and responsible. Or, that’s been my experience.

For instance, MV’s intent to die by “MAiD” reminds me a little bit of some of the decisions I’ve made in the context of symptoms of body dysmorphic disorder. I’m going to withhold the details, but a couple of times I’ve made choices related to perceptual distortions from that disorder that my parents strongly urged me not to make, and I could have saved us all a lot of suffering if I had listened to them, even though I’m an independent adult who can make her own choices. I also made some important vocational decisions in my late teens and early twenties that my parents strongly advised against, and in my thirties I came to deeply regret not following their advice.

But, at least I lived to regret those mistakes and move on with my life. This young woman is presumably fixated on the idea that killing herself isn’t really so bad. Unfortunately, the fact that she’s reached that conclusion is sort of understandable in the same way that some of the ways I’ve handled body dysmorphic disorder are understandable. Western culture inundates us with ideas about what is attractive in a similar way that Canadian & Netherlands culture romanticize “MAiD.” So, “MAiD” has been presented as just another choice, and that’s a sad combination with the fixation that is more typical for those of us on the spectrum.

I think I remember reading somewhere that someone urged MV to die by “MAiD,” and that makes me very sad. It reminds me of a terrible experience I had in my early 20s when a close friend of 20 years suddenly started treating me horribly because that’s what her new boyfriend urged her to do. It was deeply wounding to have one of my best childhood friends, with whom I had shared some of the happiest times of my life, turn on me in that way, and the eventual dissolution of that friendship caused desperate loneliness. The friend who is urging MV to kill herself is abusing MV in a similar way. Urging someone to end their life is not the mark of a true and caring friend, this is a mark of someone living out their appetite for destruction by pushing someone else toward destruction. In fact, a young woman in Massachusetts served time in jail for encouraging her boyfriend to end his life. (Link to article).

My hope for MV is that she is eventually able to find better friends who will truly love and support her, like a close mentor of mine who lives near my current apartment and generously serves as a listening ear, a lunch partner and problem-solver for me. I also found it helpful to get involved with the local chapter of the Autistic Self Advocacy Network; is there a Canadian chapter of ASAN or a similar group that MV could get involved with where she could experience comaraderie with other people who have disabilities, such as one of the groups that signed this letter opposing the extension of assisted suicide to people with disabilities in 2021? (Link to article)

The last thing MV’s situation causes me to reflect on is the euthanasia movement’s privileging of personal choice above all else. In respect to MV’s intent to die, the original trial judge wrote that: 

this choice “goes to the core of her being. An injunction would deny MV the right to choose between living and dying with dignity.” 

The judge’s logic shows just how cold the euthanasia agenda is; he was denying the woman’s father the opportunity to intervene to save their daughter because the impending suicide was a choice. Canada’s “MAiD” program’s operation from that logic shows that the right to die movement treats choice as something that can never be questioned, no matter the consequences: MV’s decision to kill herself with “MAiD” is a choice, so that choice must be carried out and MV’s parents should just stand there while someone injects poison into her arm.

A culture that privileges a “choice” facilitated by state-employed doctors over instincts of family and the efforts of parents to prevent their children from being killed is an empty one. Unfortunately, the politically powerful euthanasia movement values the right to be made dead more than the deepest bonds of love and care. My hope is that MV and Ter Beek will find the love and care that they need to move beyond the desire to die and achieve something much better for themselves.


Chris said...

Excellent article, thank you! Hope this article will bring some sense to those who mistakenly think death is the answer to their problems.

Gilles Paquin said...

Wow, Meghan, a brilliant exposé to help us understand why autism is not a disability, but more like a super power! (though i recognize that this could be an oversimplification...).
A very clear, intelligent, well put argument against the route to insanity that our culture seems to be engaged on, thank you.

Anonymous said...

A very beautiful well thought out response.

Voice of Gone Ballistic said...

The problem that the health authorities have is that after a person makes a decision, that person cannot change his mind although it is written on walls throughout a hospital. I was banned from seeing my husband because the health authority decided that I should not communicate with him as my husband cannot change his mind each time he talked to me. If a man changes his mind then the death card should be taken off the table. The health authority in Alberta will do everything possible to insulate the woman from any influence.

Anonymous said...

Voice of Gone Ballistic is right. If a friend, family member or loved one were to interject themselves to practice suicide prevention, the healthcare professionals would see it as a external, coercive pressure in violation of their patient’s sacred (but delusional) autonomy. It’s so sick! It’s upside down thinking that somehow reminds me of Kremlin propaganda. Thank you, Meghan Schrader for this deeply thoughtful and insightful article. - Thomas Lester


Both of these women would benefit from a careful application of several safeguard-procedures that can help families decide when to allow death as the solution and when death is NOT the best solution. Here is a fictional person---Mr. Jones---who wants to die because of his mental and emotional suffering. See how the best safeguards might apply to such a situation. WHEN IS MENTAL SUFFERING ENOUGH?

Sixteen safeguard-procedures have been suggested
for helping to decide Merciful Death
for people whose suffering is mainly mental.

Here we will show how these safeguards might apply
to a made-up person---Mr. Jones.

His daily life is miserable
because of what is happening inside his head.

Psychological treatments have all failed.

And now his proxies are applying for Merciful Death.


Read how each of 16 recommended safeguards
would apply to this imagined case:


Meghan said...

Leonard, I also went through a period in my life in which I was in agony after multiple treatments at failed. When I relapsed into depression between 2015 and 2016, I tried about 17 different medications with no relief. I tried Transcranial Magnetic Stimulation, which uses magnets to reorganize brain function in people with depression. The procedure made my depression much worse and caused severe cognitive deficits, to the point where I didn’t know who the president was or what day it was. It was Hell. I’m not sure that I woukd have agreed to assisted suicide, given that I had advocated against it for years at that point, but then again, I never thought that I would be wandering around my house, screaming uncontrollably as a voice taunted me for my sins. Your “safeguards” are crap.