This final issue for 2019 elaborates existing ideas, introduces a discipline that is relatively new to intellectual disability, and interrogates existing approaches and beliefs to check whether they are still appropriate, relevant, or accurate. We start with supports for self-determination. Van Dijk and Gage’s meta-analysis found Visual Activity Schedules are likely to increase independence skills across a range of age groups and settings. Bigby et al. studied the difficulties families experience in juggling rights and risks as they support their son’s or daughter’s decision-making. Their findings illustrate the importance of avoiding premature foreclosure, knowing the person well, and understanding how to translate abstract concepts meaningfully. However, strategies to support decision-making are also needed that help people mediate and resolve conflicting positions within circles of support. Chinn examined Easy Read translations, which governments and research committees continue to require despite limited evidence of impact. Findings include there being little consensus about how to produce these materials; that people with ID rarely contribute to their production because of time-pressures and text complexity; and that translations rarely promote informed decision-making in the light of the risks as well as benefits. Organisations operating in neoliberal environments on precarious funding need the business, and so seek to distinguish themselves from their competitors rather than to develop and adhere to standardised practices.
In an environment where researchers and practitioners rarely look back further than the last decade, two papers demonstrate the importance of the longer view. Henderson and Bigby’s life-histories reveal not only how individuals make sense of their lives but how this process illuminates broader socio-historical trends. Some tales of abuse revealed familiar structural patterns: how poverty, class, endemic abuse, and neglect shape the experiences and forge the identities of people with IDs. Quieter voices told another tale, of the security and comfort that institutional life could bring. Such research complicates the master narrative, suggesting that little is gained from condemning institutions outright for their imperfect responses to difficult social situations. A four-decade medical case-history by Wark and Kingstone reviews the complicated and often contradictory treatment a man with severe intellectual disability received. Strikingly different diagnoses did not address pain management: its inadequacy was a matter of grave concern. Inconsistent diagnoses were attributable to pressure from government funding bodies and parents for a formal diagnosis, and to the absence of comprehensive case histories that stop each new doctor from effectively starting again. These are time-consuming to prepare, but required.
Two papers refresh educational practice. From Italy, a country where even the verb-forms promote interconnection, Nota et al.’s intervention to support the inclusion of elementary pupils with ID promoted both attitude and behaviour change in TD peers. Carter et al. found that the current deployment of teaching assistants was problematic. They should neither plan instruction nor provide ad hoc individual assistance: instead, they should give general classroom support and deliver specific programs under teacher direction.
Blickwedel et al.’s negative finding refreshes challenging behaviour practice by confronting a widely held belief. While challenging behaviour and epilepsy may coexist, epilepsy is not a risk factor for severity of challenging behaviour. Lapshina and Stewart add to the growing evidence base in favour of trauma-informed care, with their finding that children using out-patient mental health services experienced higher family dysfunction and higher cumulative trauma. Dean et al.’s RCT trial of N-acetylcysteine (NAC) to treat behavioural symptoms in 98 young children diagnosed with ASD found the NAC group showed improved calmness, decreased aggression and agitation, and better verbal communication. Muller et al.’s latest report from their ongoing longitudinal study of the effect of parenting on children with FXS records multiple challenging behaviours. Half of these pre-adolescents were already hitting, slapping, and punching their mothers: sometimes refusing to move, at other times running off. Finally, we continue to examine electronic resources with Marleau et al.’s pilot study of an interactive web-training package that helped parents to identify behavioural functions and select interventions.