In this article Dr Sarah Blainey, clinical psychologist at South London and Maudsley NHS Foundation Trust, and Debbie Spain, NIHR clinical doctoral research fellow at Kings College London, give an overview of a women's group recently piloted by an outpatient autism service. This was developed in response to the observation that women tend to present with slightly differing needs to men with autism. Sarah and Debbie discuss the structure and content of the group, feedback from participants and offer some ideas on the content and approach a group for autistic women may need to take.
CBT-based groups for women on the autistic spectrum
Women and girls are much less likely to be diagnosed with an Autism Spectrum Disorder (ASD) than males, with a male to female ratio of about four to one (Whitely et al, 2010). It may be that women are less likely to be diagnosed due to differing presentations of the core ASD features, for example an ability to imitate social interaction skills relatively effectively masking problems understanding and coping with social situations (Lai et al, 2011). In recent years there has been increasing interest in how women and girls with ASD may present, and what their specific needs may be, as compared with the needs of men and boys with ASD.
Within our specialist psychology service for adults with ASD, approximately one quarter of the people referred for treatment are female. They represent a significant minority of our patient group, and (anecdotally) tend to present with slightly different needs and goals for treatment.
With this in mind, and having previously run several groups (e.g. working on self-esteem, social skills, managing anxiety) which had all been targeted at males, we were interested in developing and piloting a group aimed specifically at females.
Cognitive behaviour therapy
The service primarily uses an adapted Cognitive Behaviour Therapy (CBT) approach to work with adults with ASD and co-morbid mental health problems. CBT is based on the theory that people’s thoughts, feelings and behaviours are interlinked; so modifying one’s thoughts or behaviours can make us feel differently about events or experiences, thereby reducing anxiety or ameliorating depression. Therapy involves understanding one’s thoughts, feelings and behaviours and their inter-relationships, and finding alternative coping strategies such as challenging less helpful thoughts or behaving differently. Adaptations to CBT can be required to ensure that it is be accessible and relevant to people with ASD. These can include spending more time understanding thoughts and emotions, repetition of key concepts to enable generalising, and including social skills work where appropriate.
Adults with ASD are vulnerable to co-morbid mental health conditions, in particular anxiety, depression and low self-esteem (Tantum, 2000). NICE guidance states that where adults with ASD have co-morbid mental health difficulties, they should be offered psychological interventions as appropriate for that condition, adapted for their ASD. For anxiety disorders and depression, NICE guidance recommends CBT, either individually or in groups. There is some evidence that CBT adapted for ASD is useful in treating comorbid mental health conditions (Binnie & Blainey, 2013).
Women with ASD
Women referred to the service often present with a range of different needs and difficulties. These can include problems linked to the core features of ASD, such as difficulties with social relationships, and mental health difficulties. As women (and some high functioning men) with ASD may be more likely to be diagnosed during adolescence or adulthood, having successfully ‘covered up’ their difficulties when younger, they may also present with difficulties relating to having been bullied or having problems fitting in, which can lead to low self-esteem. Women may also tend to be compliant in order to cope with their social difficulties (i.e. by not standing out or offending others), potentially putting them at risk of abuse or exploitation.
The group we developed was aimed at young women with a diagnosis of ASD who had been referred to the service. Initially we piloted the idea with a small group of 4 women aged 24 to 27, of 6 women who were offered the opportunity to attend. All of these women had been referred for CBT following a diagnosis of ASD made in adulthood and all presented with varying difficulties including social and relationship problems, anxiety disorders, including Obsessive Compulsive Disorder (OCD) and depression. All of the women involved had expressed interest in coming to a group, which was offered in addition to one-to-one therapy sessions.
Our group consisted of 10 sessions of two hours each with a 20 minute break halfway through. We offered an individual assessment session with both facilitators prior to the start of the group to assess suitability and allow participants to meet the facilitators. Midway through the group, we offered a further individual session to allow group members to feed back on their experience of the group so far and raise any concerns that they had. All group members opted to have this individual session.
The group was intended to enable exploration of the main issues that women with ASD tend to present with, and develop coping strategies for common difficulties. Within this, we hoped that participants would be able to reflect on their own experiences and learn from one another, so although the sessions were structured we left plenty of time for discussion and comments.
• understanding ASD (including sex differences in ASD) and associated strengths and difficulties,
• the CBT model,
• understanding and managing anxiety,
• coping with frustration and anger,
• coping with difficult social situations,
• managing conversations,
• managing friendships and social relationships,
• assertiveness and confidence.
In the final session we reviewed the previous weeks, sought feedback about the group process and went out for a coffee, as suggested by a group member as a way to mark the ending.
All sessions used the same structure, to reduce anxiety about what would happen. The CBT model was used to structure the problems or difficulties participants raised, and the coping strategies developed by the group were presented as ‘ways out’ of the maintenance cycle. We encouraged discussion of how strategies could be put into practice, and when and where group members might be able to try them.
We sought feedback at the end of each session and overall at the end of the group. In general the feedback we received was positive, although group members made suggestions about potentially going into more depth on subjects, or including other subjects, such as romantic relationships. Group members also commented that it might have been helpful to have a larger group to enable small and large group discussions.
The experience of running a women’s group was generally positive from our perspective as facilitators. Having experience of running men’s groups (around social skills and CBT treatment groups) in the past, there were some interesting similarities and differences. In common with men’s groups, and unsurprisingly given that social difficulties are a core feature of ASD, it seemed that group members take some time to feel comfortable in sessions, with some people only speaking in the later sessions. Group members also seemed to find the breaks difficult at points, possibly because this is unstructured time, and the group itself is anxiety provoking; to some extent we tried to facilitate conversation during breaks to ameliorate this, but were wary of intervening too much as participants also appreciated quiet time.
Some differences arose around the topic areas of interest to group members; women tended to want to talk more about more sophisticated social skills, and managing and maintaining relationships. Assertiveness and recognising exploitation also seemed more relevant within the women’s group than it has during men’s groups (in which social anxiety has tended to be more of a focus).
Overall, the experience of running this group suggests that there is utility in running single sex groups for adults with ASD. While there is overlap between women and men in their difficulties and needs, there are also some differences which may be better addressed in single sex environments, in particular around maintaining relationships and keeping safe.
Binnie, J. & Blainey, S. (2013) The use of cognitive behavioural therapy for adults with autism spectrum disorders: A review of the evidence. Mental Health Review Journal, 18, 93-104
Lai MC, Lombardo MV, Pasco G, Ruigrok AN, Wheelwright SJ, Sadek SA, Chakrabarti B, MRC AIMS Consortium, Baron-Cohen S (2011) A behavioral comparison of male and female adults with high functioning autism spectrum conditions. PLoS One, 6, e20835
NICE (2012) Autism: recognition, referral, diagnosis and management of adults on the autism spectrum. London: Department of Health.
Tantum D. (2000). Psychological disorder in adolescents and adults with Asperger syndrome. Autism. 4, 47-62.
Whiteley, P., Todd, L., Carr, K., & Shattock, P. (2010). Gender ratios in autism, Asperger syndrome and autism spectrum disorder. Autism Insights, 2, 17-24.
Author: Dr Sarah Blainey and Debbie Spain
Date added: 12 December 2014