Transcriber: Theresa Ranft Reviewer: Denise RQ
Actually, the main selection criterion for a TEDx talk
is that you have to be slightly crazy.
I distinctly remember that I wanted to say something important about it,
but I'm getting a little bit confused because ...
You, sir. I saw you touching your glasses just now,
whilst at the same time,
the lady over there was distinctly scratching her nose.
I saw you!
(Laughter)
And there is something going on between the two of you, some sort of ...
(Laughter)
communication.
And I distinctly get the impression that you want to ruin my TED talk.
(Laughter)
Is that true?
So, maybe some of you start to worry a little bit about my mental health.
Maybe after my TED talk,
you want to take me to the local hospital for a psychiatric assessment.
Let's imagine, I tell the psychiatrist
that apart from these delusional thoughts, I'm also hearing voices,
and that I haven't been functioning very well for the last six months.
By telling this, I will meet likely criteria
for one of these so-called "schizo" diagnoses.
Let's say I meet criteria for schizophrenia
which is the prototypical diagnostic formulation for "madness."
Now, my family, by this time, will be notified of this diagnosis.
Since they don’t know what it is,
they will start looking on the Internet, what this condition actually is.
They'll look in the most prestigious scientific journals,
and they find that I have a devastating genetic brain disease,
or a debilitating neurological disorder.
So now they start to be really worried,
and they start looking for information about my likely prognosis.
And they find that my prognosis is bad.
I am totally disabled for the remainder of my lifetime.
Wow! That’s scary, isn’t it?
But you will note, that there is nothing in this terminology
that actually allows them to understand what is the matter with me.
The information is disconnected from anything that we can understand
as a mental function.
What is offered is a stereotype consisting of three things:
a mystifying Greek name,
an unproven hypothesis of a genetic brain disease,
and a hopeless view of outcome.
Meet my cousin, Elizabeth.
Elizabeth completed two university studies and is a witty and compassionate person;
quite unlike me.
We were always close, and we both ended up in psychiatry.
However, me, as a psychiatrist, and she, as a patient.
And over the last 15 years, she has worked very hard at her recovery,
taking her medications, accepting numeral hospital admissions,
and receiving a range of psychiatric diagnoses,
including several of the schizo diagnoses.
And then, five years ago, there was this great moment,
because she applied for a job and was accepted.
But, when her employer found out about her diagnosis,
he immediately tried to dismiss her.
And when he found out he couldn’t,
she was forced to disclose her diagnosis to the entire office.
Nobody initially wanted to work with her.
But now, five years later, she has an exemplary work record.
But because of the extremely negative expectations associated with psychosis,
diagnosed people face an uphill struggle.
A very few end up in paid employment.
So, why do I tell you this?
Well, psychosis, schizophrenia,
these are conditions that typically start in adolescence.
There is widespread consensus that in order to recover from psychosis,
you need a perspective of hope, a possibility to change.
And I think it is clear that the concept or the stereotype of psychosis
as represented,
is devoid of exactly that – of hope and change.
So, can we do better?
Well, a bunch of people got together,
and this was really a mixed group of patients, professionals, relatives,
and we asked ourselves the question: what do we really know about psychosis?
Is schizophrenia really best represented as this stereotype
of a devastating genetic brain disease?
Or is schizophrenia perhaps something
that is connected to a human mental function,
just like disorders of anxiety and depression
are connected to human emotion?
And if it is connected, can we reach young people
to give them a message of hope and change?
So, to cut a long story short, let’s have a look at what we came up with.
(Video) Psychotic experiences, everybody has them, and so do you.
Throughout the day, we are exposed to stimuli
that we hear, see, taste, feel and smell.
Our brain helps us to transform this information
into an image of the surrounding world.
In other words, we translate external sensory information from our environment
into an internal mental experience.
Sensory translations are highly personal.
For example, two people are walking through the woods at night.
One watched a violent horror film earlier that evening, whereas the other did not.
As a result, one hears and sees rather different things compared to the other.
This is because powerful negative emotions, occasioned by the film,
distort a person's interpretation of sensory perception.
One can say, therefore, that this person is experiencing a mild psychotic event.
Childhood adversities, cannabis use, and genetic factors
can trigger negative interpretations.
This can cause you to feel that the world is full of threats.
For example, you may start thinking that you are being stalked,
or that people on TV are talking about you.
Such ways of thinking are called delusions.
You may also misinterpret your inner mental processes.
For example, your thoughts can be so overpowering
that you interpret them as external voices, or visions.
As a result, you may hear voices or see things that are not really there.
These experiences are called hallucinations.
If perception of external environments or inner thoughts become psychotic,
it is possible, with help, to learn how to modify this.
It's a learning process that many people with psychotic symptoms find profitable.
PsychoseNet tries to facilitate this process.
(Video ends)
(On-stage) Jim van Os: Do you notice the difference
with the presentation of the schizophrenia stereotype?
Yet, this is what science suggests psychosis is about.
There are four important points of difference here:
What is psychosis? What is the role of the brain?
What is the role of genes? And what is the prognosis of psychosis?
Psychosis is about, what you could say, hyper meaning.
It is about that we sometimes attach too much meaning
to the external environment.
And seeing signals in random noise is actually quite human.
So, experiences of hyper meaning are quite common.
Think about being madly in love
or being madly worried that your love is unfaithful,
or seeing a face in the dark.
Actually, 30% of the general population,
when asked, will admit to having had one or more psychotic experiences.
Things like hearing voices or seeing things, mind reading,
thought broadcasting, having special powers.
Low level, mild, but still all the things that are the hallmark of psychosis.
Thirty percent!
So, I want you to look at the person on your left,
and then look at the person on your right.
And if it's not them ...
it is you!
(Laughter)
This is not to say that the brain is not important;
the brain is very important.
But it is like learning a language.
The brain provides us with the biological capacity to acquire speech.
But it is the early environment that programs this capacity
so that we speak Chinese, English, French, or Dutch.
And it's the same with psychosis.
The brain provides us with the biological capacity
to have mental experiences in the first place.
But it is the environment that can program this capacity
towards psychotic modes of thinking.
People growing up in circumstances of childhood trauma,
unsafety, or extreme exclusion,
have a higher risk of developing psychotic symptoms.
This is because these environments can program our thinking
towards the formation of psychotic symptoms.
Genes do play a role, genetic factors are important,
but their role is not nearly as dominant or as specific as is often portrayed.
And, importantly, genes may act in ways that are complementary to the environment,
by making people more or less sensitive to the environments that cause psychosis.
And, with regard to the outcome, some people with psychotic symptoms
have a very severe illness and very poor prognosis.
But, this is a minority.
There are also people with schizophrenia, who show complete recovery.
And, between those two extremes is a wide spectrum of variation.
In fact, extreme variation is the rule.
The notion of extremely uniform poor outcome is a myth.
Psychosis is something that varies from day to day,
even from moment to moment within a day.
It is capturing this dynamic variation
in response to the environment and the emotions
that is key to treatment and diagnosis.
So, if psychosis is all about hyper meaning varying during the day
in response to environment and emotions,
a remarkable opportunity presents itself.
And this is because we can now diagnose psychosis
at the level of the experience itself,
in such a way, that it becomes the first step towards treatment,
without a need to invoke the scary schizo labels.
And since young people are well versed in technology,
why not use technology to empower them
to monitor their experiences themselves,
so that they can gain an insight and get a grip?
To this end, our group developed this simple mobile app.
Its purpose is to allow people
to monitor their mental states and experiences in daily life,
feeding that information back to them, so that they can learn and cope.
So, this app actually works as follows.
At multiple random moments during the day, the app gives off a signal,
and each time there is a signal, people are asked to input information,
less than two minutes.
Information about emotions, thoughts, context, and activities.
With this information,
patterns of vulnerability and resilience can actually be made visible.
People then have access to the experiences of hyper meaning
as they evolve in the flow of daily life, in response to emotions and environments,
allowing them to actually understand what is going on,
and allowing them to develop better ways of coping.
In clinical practice, we find this works very well,
particularly with people in the early stages of psychosis.
So, where does all this leave us then?
Well, today is about reaching the impossible.
I think it is, in fact, much simpler.
I think that nothing stands in our way
to make today the first day we can all feel connected to psychosis,
because it is all a question of perception.
When we see a person with psychotic symptoms
we can with a little effort, information, and particularly education,
not see the stereotype of a devastating brain disease,
but instead see a person who's struggling with the way we attach meaning
to the internal and external environment.
And this is sometimes a difficult and painful process,
but we are all experts.
Thank you.
(Applause)