The Autism Diagnosis Saved My Life by Janis Schaerlaeken

Introductory Note Trudo Lemmens

The commentary below appeared in January 2020 in one of the leading Flemish-Belgian newspapers (De Standaard) at the start of the criminal trial of 3 Belgian physicians involved in the 2010 death of 37-year Tine Nys. Her life was ended by euthanasia (the term used in Belgium and the Netherlands for what in Canada is now termed “Medical Assistance in Dying”).  Tine Nys had been diagnosed by a psychiatrist, one of the co-accused in this trial, with Asperger’s syndrome. Two months later her life was ended, on her request, by one of the physicians. Her family was deeply troubled by the approval of her euthanasia request and traumatized by the allegedly sloppy way in which the procedure was performed.

Under Belgium’s euthanasia law, people can ask a physician to terminate their life when they have an irremediable medical condition that causes unbearable suffering, which cannot be alleviated. The law requires a confirmation by a second physician and in situations of mental illness, a third evaluation by a specialist. The three physicians were involved in either providing the lethal medication or the assessment and approval of her request. Although the federal Euthanasia Review Commission concluded that all legal criteria were fulfilled in this case, a Court of Indictment (on appeal of a first rejection) found that there were sufficient grounds to launch a criminal trial, for the criminal offence of ‘poisoning’ of Tine Nys. The euthanasia law in Belgium does not contain a specific criminal penalty in case of non-compliance with the law, so the general prohibitions of the criminal law apply.

Belgium is one of only two countries (with the Netherlands) that allow and practice euthanasia for reasons of mental illness. It is only since about 2010 that the countries have seen a gradual increase in the number of euthanasia cases for mental health reasons. This also coincides with a significant increase in euthanasia procedures involving people who are not terminally ill or in the final stages of their life. More details on these developments in Belgium and the Netherlands, which reveal a normalization of the practice outside the end-of-life context, can be found here.

This commentary is of particular interest in Canada, where the government appears committed to expand by March 2020 the current Medical Assistance in Dying [MAID] law outside the context of end-of-life, in response to the Quebec trial court decision in Truchon, which the Attorneys General of Canada and Quebec failed to appeal (for a commentary on why they should have appealed, see here).

This translated commentary captures well some of the concerns and challenges that arise when “Medical Assistance in Dying” is made available in the context of mental health  or for chronic neurological conditions and disabilities. Some of those who have been arguing for broad access to MAID may suggest that the current Canadian safeguards are sufficient to protect against abuse, or may come up with some additional procedures. The commentary highlights some of the key challenges in one specific group of people, but raises broader questions around ableist presumptions about quality of life for people with disabilities, the nature and determination of unbearable suffering, and capacity assessments in this context (for several commentaries on capacity assessment in the context of MAID/euthanasia and mental health, see here under Capacity, and subsequent commentaries). We further have to ask the fundamental question whether some of the concerns raised here can be adequately addressed by technical-procedural solutions; and whether the legal promotion of the right to control the manner and timing of one’s death, particularly when outside the context of end-of-life, is not fundamentally undermining our commitment to protecting and promoting the rights and interests of those who are dealing with these challenges]

Being diagnosed with Autism saved my life

Janis Schaerlaeken, Primary Care Physician

(original article  in Dutch in De Standaard 18 January 2020  ; translation T. Lemmens)

Janis Schaerlaeken is concerned about the euthanasia trial. She knows very well how it feels to hear as adult woman that you have autism, as Tine Nys experienced. Will there be sufficient attention for context at this trial?

Tine Nys wanted peace. Unfortunately, she did not get the time to find it. I never knew Tine. But her story and pain are recognizable. As Tine, and so many women around 40, I belong to this ‘lost generation’ of autistic women. Clinicians and scientists started to realize only in the last ten years that women can also be autistic. For us, there was no timely diagnosis and therefore no proper guidance.

As a doctor, I worked for several years in psychiatry. When I look back, I realize that I also often missed diagnoses of autism among women. Those women wandered for years in psychiatric care. Usually they were incorrectly diagnosed with “borderline personality disorder”. With all its consequences, since the treatment that flows from that diagnosis is usually damaging for an autistic woman.

I am concerned about the criminal trial against the three doctors who performed euthanasia on Tine Nys. How will autism and capacity for decision-making be connected? Will adult autistic women be heard, be invited to testify about their supposedly “hopeless medical condition”? Will they be able to tell about the alternatives they found, which reveal that living with autism does not need to be hopeless?

Tine Nys had only just found out that she was autistic – a few weeks or months are too short to mourn your old life, your old self, and to reinvent yourself.

As many autistic adults say: “autism is not only an impairment, it is also a disability which can become a handicap”: you become ‘dis-abled’, also through a context, a society that surrounds you. In the case of Tine Nys, that elimination took place literally. Els Van Veen, a Dutch family physician with autism, once put it this way: “Do I suffer from my autism, or do I suffer because I cannot live up to the expectations of the world around me?” The societal context determines in part the extent to which someone experiences autism as a limitation or disability.

This trial is not in the first place about euthanasia, or about an ideological struggle. It is about the allegedly “hopeless” psychological suffering of Tine Nys. It is about her alleged capacity for decision-making: to what extent is someone with autism capable of decision-making when they are seriously overwhelmed – that was very likely the case, as a result of her recent diagnosis, a relationship breakdown, a difficult childhood, unresolved traumas, and more generally a life that was not yet adjusted to her specific sensitivity?

Perhaps you have already been extensively informed about the experience of adult, intelligent autistic women. To make sure you are, I want to share with you some of my concerns and insights.

Dramatic event

I am not in principle against euthanasia, but it should not be used as a solution for suffering that is connected to, or the direct result of, societal failures

For some years, I have been following this case through the media and I am very indignant. It troubles me deeply that a young woman of 38 years, who knew only since a few weeks that she was autistic, didn’t get the chance to integrate this challenging event in her life..

For many with autism, getting a diagnosis feels like a breakthrough; in my case, it saved my life. Finally you get the tools to learn how to regulate yourself and to influence the environment, so that you stimulation level is adapted to the specific sensitivity (sensory, emotional) that characterizes autism. The diagnosis can offer a new and hopeful perspective. But you must receive the time and space to work yourself through all the emotions of a grieving process: anger, indignation … Intense emotions can temporarily put your cognitive ability under pressure. That has an influence on your capacity. You also need understanding and respect from social workers, physician-advisors of health insurance organizations, family members, friends and partner.

A few weeks or months are too short to mourn your old life, your old me, and reinvent yourself. The environment, a potential partner, family members, must also be given the time to start relating to you in a different way. Such a process usually takes two to five years- I rely for this on the many stories I came across via online self-help groups, of women who received a late diagnosis of autism; and on my own experience.

Most autistic women are not diagnosed with ASD, or receive that diagnosis too late. They frequently also suffer from post-traumatic stress disorder (PTSD). In relations, they are more often victim of border-transgressing behaviour than non-autistic women. Admissions in psychiatry, whether voluntary or by force, are extra damaging. The PTSD diagnosis is often missed because in autism, the appearance of the disorder is different and results from other causes, such as conflicts, harassment, and loss of control.

When a woman with autism is in her mid-thirties, the chances of psychological decompensation augment: the inability to continue functioning normally and healthy, because psychological capacities are failing. Relationships and marriages are under great pressure. Difficulties with finding a job and in keeping it leads to increasing uncertainty, undermines one’s self-image further and leads to financial troubles and challenging living conditions.

To be able to live an adjusted life in which your exposure to stimuli is limited and to pay appropriate professional support, you need money. Relational and professional suffering piles up, and when this is combined with a deep feeling of powerlessness and trauma, you have a deadly cocktail.

Society Fails

It is easy to imagine how death is seen as a way out in those circumstances. People with autism have a great need for predictability- to help them control the stimuli. Moreover, they often respond to overstimulation and perceived loss of control with extreme emotions. Those emotions can feel black and white, due to their rigid thought patterns.

According to the Belgian federal euthanasia commission, five people with autism died with euthanasia in 2017 and 2015. What worries me, is that these take place in a Flemish context in which outpatient mental health care is not well developed, not accessible enough, and unaffordable for many people. The options for psychotherapy for adults with autism is limited. People who are also traumatized fall completely out of the boat, despite the real need for treatment in cases of late diagnosis. In fact, society is profoundly failing in its care for and inclusion of people with autism.

Autism is a challenge for our society. In a book I read the following wise statement of an adult man with Asperger syndrome: “Autism is being awake in a world that is still in a coma.” How does society cope with this gift? Now that I already live with my diagnosis for some years, I have come to think that a form of pain of living is indeed part of a life with autism, because we see things as they are, and that is not always very comforting. Also, people don’t always want to know what you are seeing.

Not without hope

Autism is in and of itself not a hopeless medical condition. I am convinced of that. In the well-developed international community of people with autism, there is some form of consensus that autism is not necessarily a “disorder”. The fact that autism is included in the psychiatric Diagnostic and Statistical Manual of Mental Disorders (DSM) is hotly contested. There are quite some arguments to classify autism as a neurological disorder. There are also more and more voices within the neurodiversity movement that state that autism represents a valuable genetic variant of the human species and that the many problems seen with autism are related to other disorders and result of a mismatch between the person and the context.

What people with autism have to offer is sometimes in conflict with what is expected from them, expectations that they cannot meet. Autism becomes a disability in a society that does not adapt to neurodiversity in all relevant areas such as work, living, community organization and sports clubs, education, school and professional training.

Let us not forget that suffering never occurs in a social vacuum. I am not in principle against euthanasia, in particular in situations of extreme suffering for which there are no medical, social or psychological solutions. But euthanasia should not be offered as a solution for suffering that is related to, or a consequence of, societal failings: dehumanization of care as a result of extreme fiscal austerity, the loss of social cohesion, lack of tolerance for human diversity.

Why would we not propose an alternative trajectory, from a life perspective, as Raf De Rycke, the chairman of the Brothers of Charity [note translator: BofC is one of the major providers of mental health care in Belgium], proposed on these pages (DS January 15)? The pain, the longing for death or the longing for an end to one’s suffering, loneliness, social isolation: they want to be heard. Therapies focusing on meaning and dignity- existential or spiritual guidance – in a place where you can share and be heard safely, without fear of a collocation: for me it was an essential part in my recovery.

The real expert

To what extent will the medical experts called in the course of this criminal trial be up to date with the most recent scientific and clinical knowledge about autism? Do they have knowledge of the wider existential and societal context? Do they have verifiable experience with the guidance and treatment of adult autistic women? The appearance of autism in women is different from that in men, and the treatment must also be gender-specific. I know from experience, as physician and as patient, that knowledge among most doctors and psychologists is limited, one-sided and stereotypical. Clinicians who have experience treating autistic adults and are at the same time closely following contemporary neuroscience research on autism: they are a rare breed. In Flanders, I don’t know any. I wonder if autistic adults themselves, the other true autism experts, will also receive a platform to testify about all aspects of autism.

To what extent did the defendant physicians have sound clinical knowledge about autism from a perspective that offers hope? Did they know how to communicate well with an autistic person and how to assess their capacity and mental status? That is not something obvious. Misunderstandings arise quickly and often fail to come to light immediately. Twists and turns in the conversation are often understood differently by the autistic person. Several reasons account for this: they fail to understand the (social) context, have linguistic problems or a poor theory of mind (understanding that others have different beliefs, desires, intentions and perspectives than yourself). For the people with autism, it is also difficult to express their needs: as a result of alexithymia (inability to recognize and express one’s own feelings), delays in the processing of information, fear, limitations with facial expressions and restrained gestures.

Physicians also tend to have difficulties empathizing with the inner world of the autistic person and to appreciate their specific needs: research has shown that emphatic processes between non-autistic and autistic people are disturbed, but work well within both groups. It is not inconceivable that the defendant doctors were not sufficiently trained to realize that their assessment and decisions failed to take into account the specific disability from which Tine Nys suffered – a social and communicative limitation, which made her extra vulnerable to medical errors. I can bear testimony to this: I barely escaped death when I had blood in my lungs. The physician had picked up insufficient signals that the situation was life threatening. He prescribed a tranquilizer.

I hope this piece can contribute to a warmer welcome in our society for adults with autism, based on respect and equality.

SHE WANTED A GOOD DEATH, EVEN PRIOR TO CHRISTMAS by Rianne Oosterom (Trouw, 29 May 2018)

[Note; this is my translation (TL) of an article in Dutch in Trouw. the original Dutch version of this article can be found here]

Euthanasia for severe psychiatric suffering can be provided under strict conditions, but what does that do to other patients? Psychiatrists are worried.

It is late at night when Cornelia (28) receives an invitation by telephone. Not for a birthday party, but for the ‘good death’ of her friend Désirée. That is how Désirée calls the euthanasia granted to her by the End of Life Clinic. She wants to go before Christmas, she tells Cornelia, when the tree has not yet been decorated. So in two weeks.

Désirée says it was difficult to make the phone call. That she postponed it, precisely because she knows that Cornelia is struggling with the same things as her. The friends know each other from the clinic where they ended up because they both no longer wanted to live. They felt understood by each other during group therapy sessions.

When Cornelia hangs up the phone, she feels light-headed. That night, she sleeps two hours and decides to write a letter to herself. More letters will be written in the weeks before the euthanasia of Désirée, and in the months after. Cornelia describes in her letters what the euthanasia of one psychiatric patient does to another patient.

It is as if it is my death on Wednesday and not hers. Part of me is going to die with her, part of her is still alive with me. Why do I suffer so much from losing her? Maybe I have to realize that she was more important than I thought. I sometimes thought about her as an aunt. She was some kind of family, a family I selected freely myself, and therefore even dearer to me. Our connection has become very strong because of our common experiences

Incited by death

Cornelia has a reason to make these excerpts public now: more and more psychiatric patients are getting euthanasia and that frightens her. She reads about it. Watches documentaries. Because she still wants to die, even though she is doing PhD research and she has a house for herself and lovely people around her. The depressive symptoms continue to come.

She feels that perspective is lacking in the stories about euthanasia in psychiatric patients. The perspective of the environment around the patient who opts for euthanasia, an environment that often includes other patients who can be incited by death.

A number of prominent psychiatrists are concerned about this, according to an inquiry by Trouw. Their expectation is that the risk of suicide among other patients increases when more psychiatric patients receive euthanasia, That Cornelia is still alive is actually a miracle. She became suicidal after the euthanasia of her friend; so this had already happened once before, but now she really has gone downhill.

No research has been carried out on the effects of euthanasia on other psychiatric patients and that must be done, according to Jim van Os, professor of psychiatry at UMC Utrecht. “This is a completely new topic,” he says. “We know that in a network of patients, traumatic events can be a trigger for suicide. If there is suddenly an empty chair in group therapy, where people are trying to support each other, it has an enormous impact on the group. When someone disappears, it can destabilize another person.”

Psychiatrist Esther van Fenema has the same concern: “I think that after a euthanasia, you have to count on the same effect as with a suicide.” Her cautious hypothesis: “Patients can ‘ignite’ each other with suicide. Whether that works the same way with euthanasia has never been demonstrated, but indeed, it sounds logical.”

The end-of-life clinic is not so sure about that. “We have not done any research on this, but emotionally I would rather think that euthanasia in the environment leads to less instead of more suicides”, a spokesman responds. “It shows that there is a more humane way to die than the way of the violent, lonely suicide.”

The Recorder

Désirée said herself that she found it now going a bit fast. Me too. Way too fast. What else had she still wanted to do? 

What were her dreams? What would she want to do if this wasn’t it, if she was healthy, healthier?

There they stand, in Désirée’s living room, the husband and some friends, drinking wine while crying.  Désirée loves her wine. The doctors initially had trouble finding a vein to insert the infusion. Cornelia picks up her recorder and plays ‘Nun komm, der Heiden Heiland’ [now come, Gentile Saviour] , a song of salvation.

Because, she says later, “Désirée did not want to die, she wanted to get rid of her suffering.” When her friend has taken her last breath, Cornelia’s friend comes to pick her up. She feels sad, but also relieved, because she is still alive. She had this delusional thought that she would also be put on the drip.

I would have preferred to tear the mourning card into pieces. It reflected so much misunderstanding. Should I ever succumb to my death wish (which is rather unwavering, but fortunately not the only thing I have), then I hope that my mourning card will say: “We never supported you in your choice, you are too valuable for that.”

After her friend is deceased, Cornelia feels worthless. “That she got euthanasia, reflected for me a judgment. I suffer from life in the same way as she does, so am I still allowed to live? Am I not too much a burden on society? Is there a place for people like me? “By writing everything down, it became clear to me: the real problem with this is hope; and that hope was taken away from me by her death.”

Psychiatrist Van Fenema can very well imagine this. Together with Bram Bakker she organized a petition against euthanasia in psychiatry. “I recently received an email from a patient who wrote: “Please, if I am gloomy and go to the End-of-Life clinic, protect me against euthanasia. ”

Prior to that, Van Fenema had never thought about it, she says, that the threat emanating from euthanasia can be very real for patients. That they want to fight for their lives, but cannot stand up for themselves. That they feel less valuable because patients to whom they relate get euthanasia.

This does not happen just like that. In 2017 psychological problems were the reason for euthanasia 83 times, in 2016 it was 60 times. Physicians can only grant euthanasia to psychiatric patients if they can see no new treatment options. There are strict rules for that.

“We do see that the demand of one patient in a department sometimes also encourages other patients to talk about euthanasia and possibly also to formulate a request with the End-of-Life Clinic, where every request is checked to see if it meets the legal criteria,” says the spokesman for the End of Life Clinic. “Only about 10 percent of the requests are honoured.”

“Still, it remains a subjective judgment,” Van Fenema says. “It is very different than when someone has a metastatic form of lung cancer, and patients may wonder: why one person and not the other? This can cause uncertainty and anxiety.” But discussing a death wish can also yield something, says the spokesman for the End of Life Clinic. Because some people precisely abandon the idea of euthanasia after conversations, grateful for the intensive and open conversation.

Why do I continue to stick to life like that? “Life may not be worth it, but I think that it demands perseverance”, I said to Désirée a few months ago. Why am I so restless about your early death? After all, you became twenty years older than I am now. You fought twenty years more than I. Perhaps I will be as tired as you when I reach your age. Maybe I will understand you then. But perhaps I already understand you better than I want.

In the News

The suicide prevention platform 113 receives concrete signals that euthanasia in psychiatry has an effect on other patients, says director Jan Mokkenstorm. When the subject is in the news, the helpline receives many phone calls from people with suicidal thoughts who refer to it.

The suicide prevention platform 113 receives concrete signals that euthanasia in psychiatry has an effect on other patients

He finds it worrisome. “I have said this from the very beginning when the end-of-life issues were on the political agenda. Also during a roundtable discussion about the end of life of psychiatric patients. In my opinion, we have to discuss this cautiously. And I also said that you have to know what you’re doing when you have this conversation publicly or through the media.”

According to Mokkenstorm, not only the euthanasia of fellow patients can lead to suicide, but the media attention to “completed life”, powders, and pills also plays a role. “Psychiatrists have known about this effect for a long time. I hope we do not have to wait five years for the definitive research on this, in order to find out that we have to deal with it more prudently.”

Mokkenstorm often receives compliments from psychiatrists abroad, because of the good work that 113 is doing in reducing suicide. “But they also say: it’s a shame that you work in a country where they have thrown death into advertising.”

It is promising that, in contrast with the trend toward end-of-life in psychiatry, the so-called recovery idea is also gaining in popularity, says Professor Van Os. “If the symptoms of a mental illness do not completely disappear, that does not have to mean the end. You can also make a mental effort and say: I am going to try to find a way to find meaning despite the voices, depressions, or fears. ”

Is there enough attention to this in current psychiatry? “It is difficult to introduce that philosophy in a mental health care system that is increasingly embracing a market model. That model focuses on removing symptoms, not the recovery of perspective despite symptoms. If you don’t help patients to find perspective, they are going to experience hopelessness. In this situation, the idea of ​​euthanasia finds a fertile ground.”

If you don’t help patients to find perspective, they are going to experience hopelessness. In this situation, the idea of ​​euthanasia finds a fertile ground.

Things are not going so well with Cornelia now. She keeps writing letters about euthanasia and still has the desire to disappear. She is treated by a fine psychiatrist, but she distrusts him. “Is it for real, what is happening in the consulting room, or is there really no hope left for me and are they just ticking off all therapies until I finished them all?”

I understand why Désirée was tired of this struggle. I am tired of it too. The difference between us may be that I try to live with this inner world. That I choose to make a small peep hole in the soot that blackens the windows.

(Cornelia is only mentioned with her first name because of her privacy. Her entire name is known to the editors.)

Talking about suicide is possible through emergency and prevention phone lines. Website with contact information for crisis centres with helplines in all Canadian provinces: https://suicideprevention.ca/need-help/

Ontario Mental Health Helpline
1-866-531-2600