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.