It's appropriate and relevant that a part of these sessions we are having today
at World Mental Health Day is a brief presentation about autism. One in a
hundred adults will have a diagnosis of autism and actually among the student
population we think that figure is likely to be higher but perhaps more critically
this is a population that are at a very high risk of developing mental health
difficulties. 80% of adults with autism will be diagnosed with a mental health
problem. That compares to 25% in the general population.
In terms of the issues they've experienced, issues around anxiety and
depression are the most, most pertinent but also much higher rates of suicide; so in
terms of how the research and clinical community have responded to that:
there has been work developing interventions to try and treat mental health difficulties
in this particular population and also work to look at what's it like to be
a service user with autism in mental health services. The project I want to tell
you about today offers a different and a new perspective on this issue because
what we were interested in was what happens before these people even reach
the services that might be able to help them, how do they make sense and
understand their emotional worlds, is it different from non-autistic people.
How does a diagnosis of autism affect what they do and how they make sense of their
situation. We chose to do this piece of work specifically with a group
of young adults with Asperger syndrome and they were a group who were very
carefully selected to represent a range of mental health experiences and issues
and just to acknowledge we're doing this work in partnership with the Institute of
Psychiatry in London and it's part of a wider programme of work we're doing with them on
mental health in autism which is funded by the National Institute for Health Research.
So it was an in-depth qualitative study
interviewing these young adults with Asperger syndrome
generating a very rich dataset and I'm going to just give you some very
headline findings. So how did the young adults we interviewed how are they
making sense of their negative emotions and milder
mental health experiences; now two very key themes that came out of our
discussions with them: firstly their understandings of their emotions, their
mental health experiences were grounded in inaccurate understandings of autism
and this played out in two quite different ways: firstly there was a key
theme that they understood or their understanding of anxiety was it was an
inherent part of autism - it was like a diagnostic feature of autism and
secondly and differently they believed that mental health problems were an
inevitable consequence of having autism and that was very much located around
their social impairment and the consequences that had had in terms of
quite traumatic social experiences such as bullying but also the emotional
demands of managing social situations on a day-to-day play basis which they believed
inevitably took a toll on their mental health. So their understandings of their mental health
have very much been located in their understandings of their diagnosis. The second
theme was how they were making sense of their mental health and then emotional
experience; this was a very private process, there was very little reference to
others in order to gauge their wellness and there was very little attempt to
talk to others about how they were feeling and making sense of that.
So what are going to be the consequences of the way they've made sense of their
situation in terms of how they respond and how and whether they seek help.
So because they believed that many of these mental symptoms were an inevitable
part or inherent in the diagnosis with autism the notion of seeking
professional help and support was regarded as simply not an option not
even a possibility not worth trying and this position for some but not all was
influenced by earlier experiences in childhood of ineffective interventions.
So because that wasn't seen as a route to go the result was that they self-managed
and they spoke very eloquently about how the in a sense were self-prescribing
strategies and techniques to manage their mental distress and to avoid
situations that were causing that distress and typically that involved
removing themselves into private space. So their whole dealing with their mental
health was a private and hidden struggle and then this sort of
lead onto that and the subsequent consequence was from the sample we
interviewed was that the difficulties only became apparent when they were
really in crisis or their physical health had got to such a poor state that
people were noticing and felt they had to do something and importantly here
even at that time it took another person to facilitate them into a service and
that was typically their parents. So one of the questions we had was we need to
locate this in our wide understanding of how young people and young adults understand
their mental health and how they go about seeking support and we know
generally that young people, young adults try to normalize their symptoms and
they're self-managed and we saw all that going on in our sample but importantly
there were differences why that was going on. So we had our young adults
definitely normalising their symptoms but they were normalising in terms of
their diagnosis of autism. They were certainly seeking to self-manage but not
because they wanted to avoid the stigma of seeking help from a mental
health service but because they saw those services as having nothing to
offer them and a further thing they mentioned was that the way people
interpret their behaviours and their symptoms are different to how they might
be interpreted in others so where a social withdrawal that might be a cause of
concern for a typically developing young an adult, that is seen by others as
normal and how you've always been. So next steps for the project:
I feel there's important useful evidence here and it's certainly in line with
other research that mental health supports provision for people with
autism needs to be autism specific at least for some people but also what we
think this project is adding is that there is a need to include strategies and
interventions to improve young adults and their families' understandings of
autism and mental health and the interplay between the two. So our
contribution to this and the final stage of this project is we are co-producing
a film with some of our interviewees where they will talk about their
experiences and their feelings and that will be interweaved
with educational input of resources and signposting and then a final stage of the
project will be some guidance for professionals both working in children's
and adult services and that element of the work we're doing in partnership with the
National Autistic Society. If any of that has been any interest please do get in touch.