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

Research to have on your radar: May

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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 autistic masking, informed consent, barriers to cancer screening for people with learning disabilities and friendships among autistic people.

Camouflaging ‘not unique’ to autistic adults, study suggests

Camouflaging or ‘masking’ is defined as hiding or disguising parts of your identity in order to better fit in with those around you. For autistic people, this often involves supressing certain behaviours (such as stimming or intense interests) or mimicking behaviour.

While autistic masking is a fairly well-known concept, it is unclear whether people with other neurodevelopmental or mental health conditions also use similar camouflaging strategies. Researchers therefore set out to investigate whether people with attention-deficit/hyperactivity-disorder (ADHD) also camouflage.

In total, 477 adults with autism and/or ADHD and 105 neurotypical adults (matched by age and sex) were included in the study published in Autism Research. The participants were asked to fill out the Dutch Camouflaging Autistic Traits Questionnaire (CAT-Q-NL), the ADHD Self-Report (ADHD-SR) and the Autism Spectrum Quotient (AQ). The differences in camouflaging between adults with ADHD, autism, and the comparison group were then investigated.

The researchers found that adults with ADHD scored higher on total camouflaging and assimilation (strategies with a goal to fit in with others in social situations) than the neurotypical group, however, they scored lower on total camouflaging than autistic adults.

Autism traits, but not ADHD traits, were also found to be a significant predictor of camouflaging, independent of diagnosis.

The researchers therefore conclude that while camouflaging is not unique to autistic adults, it is more pronounced in autistic adults compared to those with ADHD. They therefore call for more general measures of camouflaging behaviour, independent of diagnosis, to be able to compare camouflaging across different groups.

In addition, they say more research is needed to discover to what extent camouflaging may be a source for mental health difficulties and late diagnoses in people with ADHD.

“It is important for clinicians and researchers to be aware of the potential impact of camouflaging in people with ADHD, so that appropriate mental health care can be provided earlier and better. Our study helps us one step in that direction,” they conclude.

Martina Gomez

Study identifies barriers to informed consent in healthcare settings for people with learning disabilities

Everyone should have agency to make decisions about their own health and care. However, research shows people with a learning disability are often not provided with reasonable adjustments that would enable them to give informed consent for medical procedures or interventions.

A new study, published in BMJ Quality & Safety, has therefore set out to identify barriers and enablers of informed consent for people with a learning disability, and to understand how this can be made equitable and accessible.

Researchers conducted a systematic literature review to identify articles about intellectual disability, consent and healthcare interventions. In total, 23 studies were included (predominantly UK studies) with a mix of qualitative, quantitative and mixed methods studies.

Participants included people with a learning disability, healthcare professionals, carers and others involved in their care. The studies’ findings were analysed and six key themes were identified:

  • health professionals’ attitudes and lack of education
  • inadequate accessible health information
  • involvement of support people
  • systemic constraints
  • person-centred informed consent
  • effective communication between health professionals and patients.

Implementing reasonable adjustments for verbal and written information, including simplifying language, was an important factor to aid decision making. The use of non-verbal communication, such as body language, was noted as under utilised and people with intellectual disability supported the use of hearing loops, braille and sign language.

They authors say healthcare professionals can help ensure the consent process for their patients with intellectual disability is both valid and truly informed by recognising the barriers and enablers identified in this review.

They recommend various ways to improve the consent process, primarily through additional education and training for healthcare professionals in the areas of informed consent, reasonable adjustments and effective communication with people with a learning disability.

Doctor with a stethoscope in the hands on hospital background

Researchers identify strategies to boost breast cancer screening uptake among people with learning disabilities

Research shows that people with a learning disability are less likely to participate in breast screening than the general population. While it is well known that people with learning disabilities experience a range of barriers to accessing breast screening, there is no consensus on strategies to overcome these barriers.

Researchers at the University of New South Wales therefore set out to reach a consensus on the strategies required for accessible breast screening for people with learning disabilities.

The study, published in the Journal of Primary Care & Community Health, used the Delphi method (which included mixed methods) to identify and reach consensus on the strategy, and Levesque’s model of person-centred healthcare access as the theoretical framework to help participants to identify factors that may influence access to breast screening services.

Findings from a literature review on breast screening for people with a learning disability were used to inform potential strategies to improve screening. Participants were then asked to fill out an online questionnaire to reach a consensus on the strategies.

The participants reached a consensus on 52 strategies for accessible breast screening for people with a learning disability. These strategies relate to the approachability, acceptability, availability and accommodation, affordability, and appropriateness of breast screening services. The authors say the strategies can be used to inform quality improvement practices to ensure the accessibility of breast screening services for people with intellectual disability.

The authors say the study highlights the need for diverse strategies to ensure accessibility of breast screening including decision making and consent, accessible information, engagement of peer mentors and self-advocates, service navigators, and equipping key stakeholders.

“The findings are the first to our knowledge to articulate the overarching strategies required to enable accessible breast screening services for people with intellectual disability. The strategies have international utility to inform service development and practice,” the authors conclude.

Scoping review highlights need to provide support to help autistic people develop and maintain authentic friendships

A new scoping review published in Review Journal of Autism and Developmental Disorders has explored autistic individuals’ experiences of friendship in a bid to understand their perspectives of friendship.

A meta-ethnographic method was used to synthesise the results from individual qualitative studies to form an understanding of the subjective experience of friendship among autistic individuals.

Five electronic databases were searched for studies, with 22 found to meet the inclusion criteria. The majority of studies originated from the UK (n = 13), followed by the USA (n = 6), Australia (n = 2) and Japan (n = 1).

A total of 252 participants were included in the studies, among whom 108 were males, 142 were females and two were gender non-binary. All participants had a formal autism diagnosis, with one participant reported to have a co-occurring learning disability.

The key concepts were then identified into two themes: the autistic meaning of friendship and the autistic experience of friendship. The first was divided into five sub themes: They would always look after me”, (2) “They actually understand”, (3) “Grow to become friendly”, (4) “Like the things I like” and (5) “people like me”.

The latter comprised of nine sub themes, including: (1) “They make your life happy”, (2) “I don’t know if I have friends”, (3) “A small group of friends”, (4) “Some people are lonely and need friends”, (5) “Social disorientation”, (6) “I work hard to pass as normal”, (7) “They will get sick of me”, (8) “I can count lists of people who were my friends” and (9) “It makes me tired”.

The review concluded that while experiences of friendship varied, friendship was important to autistic individuals across the lifespan, with a strong desire to develop friendships built on shared interests, reciprocity, respect, trust and loyalty.

The authors say the findings of this review directly counter historical theories that autistic people are fundamentally less socially motivated.

They conclude: “Despite the motivations to have friends, autistic individuals could experience great challenges in making and keeping friends. To cope with the challenges and fit into the non-autistic world, many individuals engage in adaptive morphing or persistently learn and practice social skills in their everyday lives. These constant efforts often led to feelings of increased anxiety and emotional fatigue, further contributing to mental health problems.

“Findings of this review highlight the critical need to provide supports to help autistic individuals develop and maintain authentic friendships in which they are comfortable to be their true selves. Creating inclusive environments that foster an increased awareness of autism, respecting and sharing interests and reducing anxiety may help to improve friendship outcomes for autistic individuals.”

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