Learning Disability Today
Supporting professionals working in learning disability and autism services

Research to have on your radar: October

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This article summarises some key pieces of research in the learning disability and autism field over recent weeks. This includes studies on social inclusion in communities, the need for autism-aware reproductive and sexual healthcare, a programme which is working to reduce the bullying and discrimination of children with learning disabilities at school, and the emotional wellbeing of people with profound and multiple learning disabilities. 

How can ‘local connectors’ help to enhance social inclusion in communities?

Adults with intellectual disabilities who become volunteers or join mainstream leisure clubs could have enhanced opportunities for social inclusion in their neighbourhoods, according to a new study published in the British Journal of Learning Disabilities.

The researchers chose to focus on how people with learning disabilities can become more involved and engrained in their communities because the social networks of adults with intellectual disabilities are often small, and may be limited to family, paid staff and others with disabilities.

The authors, based in Ireland, aimed to investigate how structured support from ‘local connectors’ (i.e. existing members of mainstream clubs or organisations) could help individuals with intellectual disabilities build relationships and expand their social networks within their communities.

The study involved a qualitative intervention where six individuals were paired with local connectors and supported to participate in leisure activities or volunteering. The authors analysed the experiences of the participants and their local connectors, identifying key facilitators and barriers to participation.

Previous positive experiences of leisure activities acted as a facilitator and motivator for engagement in new opportunities. However, ill health and transport issues acted as barriers, with some individuals in rural areas having no engagement in their neighbourhoods outside of their family and the new volunteer activity or club.

The study concluded that local connectors can be valuable resources in supporting social inclusion for adults with intellectual disabilities, particularly in rural areas where access to transportation and opportunities can be limited.

The authors emphasise the importance of individual goal setting and carefully designed support systems to maximise participation and highlight the potential of social roles as bridges to social inclusion. Recommendations for practitioners and policymakers included:

  • Implementing clear policies on supporting social inclusion in neighbourhoods (this was seen as pertinent to the Irish context, where two-thirds of service providers surveyed did not have a dedicated policy on social inclusion)
  • Developing procedural guidelines and rostering to ensure that individuals do not miss out on regular attendance at their new leisure or volunteer activity due to lack of transport.
  • Conducting further longitudinal studies to examine how much support from intellectual disability service providers these arrangements need beyond the initial settling-in period.

“Adults with intellectual disabilities acquiring valued social roles close to where they live creates opportunities for social inclusion in their neighbourhoods. Becoming a volunteer or joining a mainstream leisure activity creates opportunities for convivial encounters, making new acquaintances and expanding social networks. Local connectors can be sourced in rural towns and villages to provide personalised support to meet new people through a shared common interest,” the authors conclude.

sports club, football team

New research demonstrates an ‘unmet need’ for autism-aware reproductive and sexual healthcare

A new study, published in Autism, has investigated the need for autism-aware care for gynaecological, menstrual, and sexual wellbeing among autistic individuals in the UK.

The research, conducted through an online survey of 136 autistic adults, reveals that autistic individuals face significant challenges accessing and discussing reproductive and sexual healthcare. This includes issues related to the menopause, menstruation and sexual wellbeing.

The study highlights how autistic individuals often feel uncomfortable discussing their reproductive and sexual health with healthcare professionals (HCPs) and how HCPs rarely accommodate their sensory needs or communication preferences. A ‘novel finding’, according to the researchers, was that respondents did not feel that HCPs behaved in ways that indicated an awareness of how autism may affect reproductive and sexual health, with most feeling that HCPs ‘never seem to know’ how the two are linked.

While there was broad agreement that HCPs need to be more aware of the impact of autism on healthcare experiences in general (as well as the specific impacts of autism on reproductive and sexual health), there was no consensus about the communication mode that was most preferred or considered most appropriate. The communication mode was usually affected by the nature of the health concern, with some respondents preferring remote consultations for more ‘embarrassing’ issues, while others preferred in person consultations for psychological issues.

Nevertheless, the data provide a clear picture of the unmet needs of autistic people when it comes to their reproductive and sexual health, accompanied by the message that there is no one-size-fits-all approach to improving healthcare for reproductive and sexual healthcare among autistic people.

The authors say the findings underscore the urgent need for enhanced HCP training and resources to improve healthcare experiences for autistic individuals in the realm of reproductive and sexual health.

Cervical cancer screening

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Can Talk-LD lessons challenge discrimination and promote inclusion in schools?

Young people with intellectual disabilities are significantly more vulnerable to bullying and victimisation than their peers. To counteract this stigma and discrimination, a series of five lessons, ‘Talk about Learning Disability’ (Talk-LD), were developed for the Scottish secondary school curriculum to promote young people’s understanding and acceptance of people with intellectual disabilities.

New research, published in the Journal of Policy and Practice in Intellectual Disabilities, set out to analyse how effective the delivery of the lessons alone is compared to the lessons alongside an attempt to promote positive contact between participating students and people with intellectual disabilities.

In total, 12 schools were recruited and randomised with lessons delivered to 23 classes across the schools. Students were asked to fill out the Attitudes Towards Intellectual Disability (ATTID) questionnaire both before the lesson and afterwards to understand if and how perceptions had changes.

Baseline data were obtained for 480 participants. However, school closures due to Covid-19 meant that follow-up data were only obtained from 220 students (six schools) prior to school closures, and no schools were able to follow through on their plans for contact between students with and without a learning disability. However, three schools had plans for joint activities, representing a willingness to positively engage with the process of promoting positive contact with young people with an intellectual disability.

The available data indicated that students found the lessons useful and they increased their understanding of intellectual disability, while teachers regarded Talk-LD as a high-quality teaching resource, reporting no issues in delivering the lessons and saying they would use it as part of the PSE curriculum.

Interestingly, none of the students in the focus groups spoke of how Talk-LD had challenged or changed their own attitudes towards people with intellectual disabilities, but many spoke of how they thought Talk-LD would help challenge other young people’s attitudes.

The researchers say the findings are encouraging in relation to future research on the Talk-LD lessons, and they suggest that a larger-scale randomised control trial could be feasible, but future research will need to consider the logistical challenges of organising positive contact activities between students and individuals with intellectual disabilities.

Pupil in classroom with raised hand

New research on the emotional wellbeing of people with profound and multiple learning disabilities and the staff who support them

Until now, there has been little research on the emotional wellbeing of people with profound and multiple intellectual disabilities (PMLD). A new study, published in Disability & Society, has therefore aimed to fill this gap by examining the emotional wellbeing of students with PMLD and the staff who work with them in special schools.

To do this, the researchers draw on both existing literature and their own experiences, presenting a reflexive analysis of the emotional wellbeing among students with PMLD and the staff who support them.

The authors argue that the emotional wellbeing of both students and staff is interconnected, highlighting the often-overlooked ‘double empathy problem’ in these settings. Damian Milton initially used the double empathy problem to explain the communication challenges between autistic and non-autistic people, but the authors say this concept can also help us understand the emotional labour and challenges experienced by staff and students with PMLD in special school environments.

This is because students with profound intellectual disabilities and staff may have significantly different ways of understanding and expressing themselves. These differences create a gap in mutual understanding, and the effort required to bridge this gap can be emotionally taxing both for the staff and students themselves. They say this creates a ‘triple empathy problem’ when combined with the dynamics present in school settings.

Indeed, the authors argue that special school classrooms can be unaccommodating environments for both students and staff and that this can negatively impact their wellbeing. They suggest spaces which allow students and teachers to simply ‘be together’, without the pressure of achieving learning outcomes, has positive impacts on the wellbeing of both staff and students.

Ultimately, the authors advocate for a relational view of empathy that emphasises the importance of perceiving another person’s emotional state through their movements and gestures rather than relying solely on the spoken word. This perceptual empathy can be particularly important in interactions with people with PMLD who may communicate in non-verbal ways.

Importantly however, the authors say they want to kickstart a conversation about “universal human vulnerability and the roles schools can and could play in supporting emotional wellbeing.”

author avatar
Lauren Nicolle
Lauren is a qualified journalist who writes primarily across the health and social care sectors. She is passionate about exposing the injustices faced by people with a learning disability, with a particular focus on equal access to healthcare.

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