Psychoeducation for Older Adults with Autism

The detection of autism spectrum disorder (ASD) in older adults in Dutch
(specialised) mental health care is improving, but underdiagnosis remains. This
is often the result of autism characteristics going unrecognised, doubt on how
to perform the diagnosis, and uncertainty about the next steps after diagnosis.
Meanwhile, older adults with ASD experience a low quality of life (QoL) and a
high rate of psychopathology across the life span and into old age.
Additionally, Dutch and international treatment guidelines advocate
psychoeducation (PE) as the first intervention after patients have been
diagnosed with ASD. However, as PE for older patients with ASD is hardly
available in the Netherlands, access to PE is severely limited for these older
adults. Hence, it is important to improve detection and diagnosis of ASD and
increase the availability of PE for older adults.

The hypotheses of this study are 1) that delivering an adapted and improved PE
program for older adults will result in more knowledge and recognition of ASD,
a better acceptance of the diagnosis, improved coping with ASD, improved
resilience and comorbid general psychological distress, and ultimately in
higher quality of life, compared to the situation in which patients with ASD
receive no PE and 2) that detection and diagnosis of ASD in older adults will
significantly increase following training of professionals.

The aim of this study on the one hand is to gain insight into: 1) the effects
of a PE program for older adults with ASD in terms of knowledge and recognition
of ASD and traits, a better acceptance of the diagnosis, improved coping with
ASD, improved resilience and comorbid general psychological distress - and
ultimately higher quality of live; 2) the experiences of older adults with ASD
following the PE program, and 3) the effects of providing training and
education to mental health care providers in detection and diagnosis of ASD in
older adults, with the expectation that this contributes to an increase in the
number and proportion of ASD diagnoses in older adults in the Netherlands.
Additionally, the quality of the diagnostical process is explored on the basis
of the psychodiagnostic research reports that are produced as a result of the
diagnostic research into ASD.

The effects of training and education in detection and diagnosis of ASD in
older adults, and the effects of the PE program will be evaluated in a Stepped
Wedge Trial Design (SWTD), with the intervention sequentially rolled-out in ten
(specialised) mental healthcare organisations. Furthermore, a pre-post design
will be used to compare the situation before the roll-out period with the
situation after the roll-out period in terms of diagnosis and individual
outcomes such as knowledge regarding ASD. Qualitative measures will be used to
assess the experiences of older adults with ASD who participated in the PE
program.

The psycho-education intervention consists of education in detection and
diagnosis of ASD in older adults for mental health professionals and of an
adapted PE program for older adults with a recent diagnosis of ASD. The
psycho-education program consists of eight, two hour group meetings on a weekly
basis.

The content of the adaptations to the PE course is based on the findings of our
earlier exploratory study of psychoeducation for older people with a late
diagnosis of autism (Lenders et al., in press), years of experience with the
current course at five institutions that offer this course to older people with
a recent diagnosis of autism, meetings with experience volunteers, and meetings
with the current trainers at the organizations involved.

For patients, benefits will be considerable as they will receive a PE program
that is recommended by the Dutch multidisciplinary guideline for ASD in adults,
and although being the recommended first intervention by treatment guidelines,
is not provided to them momentarily.

The benefits account for patients who provide informed consent to participate
in the research and patients who do not give their consent, since the same
treatment will be available for both. We consider the burden of participating
in the research, which consists of filling out questionnaires and inviting a
proxy of their choice to fill out two of the same questionnaires, to be
limited. Firstly, because this will be done in the context of treatment that
fits the recommended first intervention by treatment guidelines and thus does
not provide an extra mental burden. Moreover, the time needed to fill out these
questionnaires is limited: approximately 40 to 60 minutes per measurement
point, and there are no indications that risks are involved with regard to the
topics of these questionnaires; specifically in a similar study by our research
group, no adverse events or risks were observed.

Additional potential benefits exist in the form of increased detection and
diagnosis of ASD in older adults across participating organisations, while the
burden of participating in the study hardly exceeds time and effort spent in
diagnostic efforts as usual, yet lightens efforts spent on informing patients
with an ASD diagnosis as this can be done in a group format rather than on an
individual basis. The only extra effort is limited to informing patients about
the study with verbal and written information.