[Posted on 14 March, 2018 by Geir Øgrim]
I have worked as a neuropsychologist in child and adolescent psychiatry for several decades, and I have attended a conference or three. Some lectures deal with genetics in autism, ADHD, Tourette’s syndrome etc., referring for example to findings of similar genetic underpinnings of different diagnostic categories. Very interesting; but after six minutes of introduction, I’m lost. I don’t have the necessary basic knowledge in genetics, and every time I tell myself to do something about it. So, in a way I have disqualified myself from uttering anything about genes. But the logic of twin studies – reared apart or together – is easy to grasp, as is the concept of genetic vulnerability. And; to reflect on the long term societal consequences of increased genetic knowledge is something we all should do, professionals or not.
A future scenario: A pregnant woman can take a blood test telling her that the fetus with 85% probability will be a child with autism, ADHD, dyslexia or something else. The pregnant woman can decide to have an abortion, a parallel to what happens these days to the majority of fetuses with Down’s syndrome. An alternative; the woman, and her husband/partner can decide to learn more about the probable needs of the child to be. Patient organizations, professionals and quality websites can help them to a realistic optimism, which also depends on confidence in the quality of health-, school-, and social support systems.
At a deeper level this is about human dignity. A life worth living, is that restricted to human beings without disabilities or diseases? Traditionally the consensus has been that the right to life includes all human beings. This view has been challenged; primarily by the moral philosopher Peter Singer and his supporters, most of them highly educated. They even argue that a handicapped baby can be euthanised, yes; killed, within a time window of two weeks after birth if the prognoses of a meaningful life (defined by whom?) are negative. The vast majority of us strongly disagree with this, but the basic view, that only the perfect life is a meaningful life seem to influence our thinking more and more; “generation perfect”.
So what about ESSENCE, quality of life and contributions to society? First of all, in my view, human dignity and human rights should never be defined by contributions to society. And we should never stop reminding ourselves that people with severe handicaps, and their close ones, often report that their lives are meaningful although not easy. Regarding the issue of contributions to society, an important message comes from “The Autistic Pride Movement”. They define themselves as “neurodivergents”, wired a bit differently from the rest of us, called “neurotypicals”. Autistic people contribute considerably to society by diving deeply into narrow subjects gaining important insights. To speculate about people with ADHD – sometimes acting impulsively, not considering negative, even fatal consequences – might some of them have discovered America or reached the highest mountains because of their symptoms? Our societies need some people thinking and acting differently from the rest of us.
Sometimes people with ADHD or Asperger’s/autism receive public attention for their achievements in sports, art or other areas. Some of them claim that their diagnosis is an important reason for their achievements. Nice, but as a professional I sometimes ask myself if the diagnostic criterion of impaired function in everyday life is met in some of these cases. The borderline between a diagnosis and personality traits is not always easy to draw.
Is there a common thread throughout this blog? I started with a concern that future knowledge in genetics will lead to tests telling the probabilities of developmental disorders. Combined with ideological views that only so-called perfect lives are worth living, this may lead to solutions that I strongly oppose. Quality of life and contributions to society cannot be reliably predicted by genetic tests, and we all have the right to life irrespective of our contributions to society.