Lorcan Kenny

Which terms should be used to describe autism? Perspectives from the UK autism community

Recent public discussions suggest that there is much disagreement about the way autism is and should be described. This study sought to elicit the views and preferences of UK autism community members – autistic people, parents and their broader support network – about the terms they use to describe autism. In all, 3470 UK residents responded to an online survey on their preferred ways of describing autism and their rationale for such preferences. The results clearly show that people use many terms to describe autism. The most highly endorsed terms were ‘autism’ and ‘on the autism spectrum’, and to a lesser extent, ‘autism spectrum disorder’, for which there was consensus across community groups. The groups disagreed, however, on the use of several terms. The term ‘autistic’ was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; ‘person with autism’ was endorsed by almost half of professionals but by fewer autistic adults and parents. Qualitative analysis of an open-ended question revealed the reasons underlying respondents’ preferences. These findings demonstrate that there is no single way of describing autism that is universally accepted and preferred by the UK’s autism community and that some disagreements appear deeply entrenched.

The Relationship between Social and Motor Cognition in Primary School Age-Children

There is increased interest in the relationship between motor skills and social skills in child development, with evidence that the mechanisms underlying these behaviors may be linked. We took a cognitive approach to this problem, and examined the relationship between four specific cognitive domains: theory of mind, motor skill, action understanding, and imitation. Neuroimaging and adult research suggest that action understanding and imitation are closely linked, but are somewhat independent of theory of mind and low-level motor control. Here, we test if a similar pattern is shown in child development. A sample of 101 primary school aged children with a wide ability range completed tests of IQ (Raven’s matrices), theory of mind, motor skill, action understanding, and imitation. Parents reported on their children’s social, motor and attention performance as well as developmental concerns. The results showed that action understanding and imitation correlate, with the latter having a weak link to motor control. Theory of mind was independent of the other tasks. These results imply that independent cognitive processes for social interaction (theory of mind) and for motor control can be identified in primary school age children, and challenge approaches that link all these domains together.

‘The dots just don’t join up’: Understanding the support needs of families of children on the autism spectrum:

Much research has documented the elevated levels of stress experienced by families of autistic children. Yet remarkably little research has examined the types of support that these families perceive to be beneficial to their lives. This study, co-produced by researchers and school-based professionals, sought to establish these families’ support needs from their own perspectives. In total, 139 parents of autistic children with additional intellectual disabilities and limited spoken communication, all attending an inner-city London school, participated in an initial survey examining parental wellbeing, self-efficacy and the extent to which they felt supported. Semi-structured interviews were conducted with a subgroup of parents (n = 17), some of whom reported in the survey that they felt unsupported, in order to gain their in-depth perspectives. The results from both the survey and the interviews suggested that existing support (particularly from formal support services) was not meeting parents’ needs, which ultimately made them feel isolated and alienated. Parents who were interviewed called for service provision that adopted a relational, family-centred approach – one that understands the specific needs of the whole family, builds a close working relationship with them and ensures that they are supported at times when the parents and families feel they need it most.

Supporting children with severe-to-profound learning difficulties and complex communication needs to make their views known: Observation tools and methods

All children have the right to shape decisions that influence their lives. Yet, children with severe-to-profound intellectual disabilities and complex communication needs are often marginalized from this process. Here, we examined the utility of a set of tools incorporating ethnographic and structured observational methods with three such children. We specifically examined the communicative behavior that these children used to share their views and the ways in which adults recognized and responded to them. The three case studies illustrate (1) that these children have ways to make their intentions known, even though they may use idiosyncratic ways of doing so; (2) that adults play important roles in supporting their communicative bids; and (3) that this set of tools was sufficiently sensitive to subtle and fine-grained nonverbal cues that might otherwise be overlooked.

Excluded from school: Autistic students’ experiences of school exclusion and subsequent re-integration into school:

Background and aims All children have the right to receive an education and to be included in school. Yet young people on the autism spectrum, who are already vulnerable to poor health and social outcomes, are at increased risk of school exclusion. The current study sought to understand the key factors surrounding the school exclusion experiences of a group of autistic students with particularly complex needs, and their subsequent re-integration into education. Method We interviewed nine intellectually able students (eight male, one female; M age = 13.3 years), all with a diagnosis of autism and the majority with a history of demand avoidant behaviour. We also interviewed their parents and teaching staff about the students’ past and current school experiences. All students were currently being educated within an ‘Inclusive Learning Hub’, specially designed to re-integrate excluded, autistic students back into school, which was situated within a larger autism special school. Results Young people and their parents gave overwhelmingly negative accounts of the students’ previous school experiences. Children’s perceived unmet needs, as well as inappropriate approaches by previous school staff in dealing with children’s difficulties, were felt to cause decline in children’s mental health and behaviour and, ultimately, led to their exclusion from school. Four key factors for successful reintegration into school were identified, including (i) making substantial adjustments to the physical environment, (ii) promoting strong staff–student relationships, (iii) understanding students’ specific needs, and (iv) targeted efforts towards improving students’ wellbeing. Conclusion The culmination – and escalation – of challenges students experienced in the students’ previous placements could suggest that the educational journey to exclusion from school is an inevitable consequence for at least some autistic children, including those with particularly complex behaviour, as sampled here. Yet, our study encouragingly showed that this was not necessarily the case. All the young people we spoke to reported being happy, safe and secure in their current placement, and re-engaged with school life. Outstanding issues remain, however, with regard to children’s reportedly slow academic progress and difficulties generalising the positive behaviour shown in school across home and community contexts. Implications More remains to be done to ensure that autistic children and young people’s progress at school is also mirrored in other settings. Future research also needs to develop more preventative approaches to avoid exclusion from school, including efforts towards improving education professionals’ knowledge and awareness of autism, and effective ways of responding to these students’ needs.

Drawing Firmer Conclusions: Autistic Children Show No Evidence of a Local Processing Bias in a Controlled Copying Task

Drawing tasks are frequently used to test competing theories of visuospatial skills in autism. Yet, methodological differences between studies have led to inconsistent findings. To distinguish between accounts based on local bias or global deficit, we present a simple task that has previously revealed dissociable local/global impairments in neuropsychological patients. Autistic and typical children copied corner elements, arranged in a square configuration. Grouping cues were manipulated to test whether global properties affected the accuracy of reproduction. All children were similarly affected by these manipulations. There was no group difference in the reproduction of local elements, although global accuracy was negatively related to better local processing for autistic children. These data speak against influential theories of visuospatial differences in autism.