Catatonia and autism: an interview with Dr Amitta Shah

Can you tell us how you first became interested in autism?

So I first became interested a long time ago, when I was an undergraduate at UCL, doing my degree
in psychology, and it was in the final year, and we only had one lecture on autism, and it was given
by none other than Professor Uta Frith, and I think the way her enthusiasm sparked off something in
me and I became interested in autism as I'd never been on any other subject on the course. So I
remember very distinctly that after the lecture, I ran up to her and I said, "Could I follow up on this? I
want more references," and she invited me to her office in the afternoon, and I haven't looked back
since, really.

So that was my first, you know, sort of interest in autism, and then I did my research in autism under
Uta Frith, and of course I did all my other research and clinical work under the guidance of Dr Lorna
Wing, so I really had two of the best people in the world as my mentors!

Can you tell us about your current work?

AS: Currently, I work as an independent consultant psychologist and I have always been interested in
the secondary difficulties of autism, so I've done a lot of work in initial diagnosis; I used to work at
the Lorna Wing Centre using the DISCO but my work has been with more complex difficulties, so I've
worked with challenging behaviour, with people with autism who have a breakdown, either in
behaviour or in mental health, and that's what really got me interested in catatonia. So a lot of my
work at the moment is raising awareness of catatonia, doing a lot of training so that people become
aware and pick it up early and know what to do when somebody develops catatonia, because it can
be such a devastating condition.

And I'm now, as we speak, I am actually looking to see how, where we can link in with the NHS,
because it's still not, because the professionals are still not picking it up; in fact, to the point of
where families are going with, because they've heard about it or they've seen a review or
something, and they're saying, you know, "Is this catatonia?" A lot of psychiatrists, psychologists,
neurologists who get to see these things, they haven't heard about it or seen how it is manifested in
people with autism. So my work at the moment has all become focused on catatonia.

What is catatonia and how is it linked to autism?

Catatonia is a very complex disorder, and basically it affects a person's ability to carry out voluntary
actions; it affects speech, movements, volition, you know... it's not volition as in the will to do
something; they want to do something, but they can't actually execute that. So at the extreme end,
it's very easy to recognise, so the person is actually quite immobile, quite mute, they're not moving,
they're not speaking, they're not doing anything, and they're motionless, and that's quite easy to
recognise, and that's what a lot of catatonia literature has looked at; the very severe end.
But actually, catatonia, it's a very complex phenomenon and it can occur at very different levels; you
can have it very mildly, and then it can increase to being moderate and to the severe levels, so it's a
progressive condition, if it's not managed well.

Can you tell us what the early indicators of catatonia are in autistic people?

So, in people with autism, catatonia is a very interesting phenomenon in the sense that a lot of
features of catatonia actually are features of autism as well. So there is an overlap between the two
conditions. But that's not the catatonia type deterioration and that's not what needs the
management, it's when these features become exacerbated and when the catatonia actually
increases.

So the first, what you may see, the early signs are that the person becomes, the person with autism
will become slow, slow in their movements, they might start hesitating, they might start speaking
much slowly, they might not, and gradually, they will not be able to get out of bed, they may not,
they may want to but they're not able to actually complete movements, and sometimes if they start
a movement, they're not able to stop a movement.

So, the early signs are if you find that somebody's actually showing any deterioration or if they start
losing interest in the things that they've been doing before, if they start losing skills, or if they're not
able to, if they start losing their independence, particularly, because they become very prompt-
dependent, so they can't carry out actions and activities unless somebody gives them a prompt, and
this can be a verbal prompt or sometimes a physical prompt, and then they can't carry out the
activities and actions and so on.

How does catatonia differ in autistic people - if at all?

It's a very interesting question because you know historically, catatonia has been associated with
schizophrenia, quite wrongly. So it was only, so if anybody showed any catatonia, they would also be
given a label of a type of schizophrenia. We started, in people with autism, we don't often see the
extreme form of catatonia. So what you actually see is this pattern of deterioration and it can be
quite subtle initially as well. So, you know, there may just be an increase in their repetitive
movements, they may start showing a lot of complex rituals, those which they hadn't shown before,
or an increase in the ones that they had been showing, and then gradually it affects more and more
of their movements, and their behaviour.

I think the other thing is that, you know, a lot of people with autism are not able to talk about what
is happening to them, so that in itself complicates things, because we relate it to underlying stress,
trauma, anxiety, so it's... people are not able to communicate and they'll slowly start shutting down,
so there's various... in autism, we see various forms of catatonia, so either you see the catatonic
features, which are sometimes part of the autistic features or they’re an exacerbation, or you see a
shutdown which can be either a temporary shutdown in some situations, which is very anxiety-
provoking, or they get shut down for longer and longer periods. Or they may have just transient
difficulties on some days, they're not able to function very well, they're not able to do the things
without having prompts. And in autism particularly our studies showed that it's related to, it's most
frequently seen in people with autism who show a passive, who are more passive anyway. So the
people who are passive are actually less active, they're less spontaneous, they have difficulty
initiating interaction and communication and so on, and these people seem to be more at risk of
developing catatonia.

Are there any treatments for catatonia in autistic people, and are they effective?

In terms of treatment, you know, whenever there is a condition, there's people always trying the
medical treatments, and in the past, catatonia, it has been, people have followed the medical model
and they have tried, and it's a trial and error, there isn't any tried and tested medication, there are
case reports of particular medications that people have tried, but it's usually in, when the catatonia
is very severe, because it can become life-threatening at that stage as well and you have to try
anything, and the other thing that has been tried is ECT, but we would only recommend medication
and ECT as very last resort treatments, but what Dr Lorna Wing and I developed what we call the
Shah and Wing approach, which is a very, it's a non-medical approach to looking at catatonia and
understanding it. So it's a very individual approach, it's holistic, it's not any particular treatment, but
it's actually, it's about becoming aware of catatonia early on, you know, in its early stages, and
getting carers, staff, and other people to actually recognise it and do something about it at very early
stages.

So we have, so there's various stages, so one of the things is how do you support somebody who has
catatonia, so that's part of treatment, you know, because often staff think that they're being lazy,
they're not cooperative, they're being wilful and so on, so they don't provide the amount of support
that they need, so you know, how do you respond to somebody with catatonia, and then following
on from that is we were looking at the cause of catatonia, you know, in a particular individual, cause
if you look, a lot of our studies showed that there were particular stresses which people, trauma
which people had gone through, which were often responsible for triggering off the catatonia, and
this stress can be very different for different individuals, so you need a detailed assessment, and
look at that, and then try and look at their environment, their program, their lifestyle to see how you
can cut down on the stress and how you can also raise their threshold for tolerating stress and
anxiety, cause there is always going to be something that triggers off stress and anxiety.

So we work, we look at working at, and this isn't about a particular psychological treatment, it's not
that "OK, so we have somebody and we're going to give them six sessions of CBT", it's actually
looking at what the person needs and sometimes and, you know, sometimes they may need input
from the speech and language therapist, the OTs can devise programs which will be beneficial for
them, physiotherapists can help with the movement side of things, and psychologists particularly
can look at the, can do a good assessment as to the type of autism, the level of autism, how the
autism affects them and what are the likely stresses for this person, and then they will devise an
individual plan of management, so that's what, you know, we recommend, this approach, to treat
and manage catatonia.