Unexpected changes of itinerary: adaptive functioning difficulties in daily transitions for adults with autism spectrum disorder

Adaptive functioning skills, also known as adaptive behaviours, refer to a multifaceted concept defined as behaviours necessary for age-appropriate, independent functioning in social, communication, daily living, or motor areas. In light of the growing population of children with ASD who will eventually become adults, increased understanding of adaptive functioning during the transition to adulthood is of importance, but current research in this area lacks first-hand evidence presenting adaptive skills difficulties among older adolescents and adults with ASD. This article focuses on adaptive functioning skills in daily transitions for adults with Asperger's syndrome (AS) or high-functioning autism (HFA). It draws on evidence from twelve interviews with individuals on the autism spectrum age 16-43, and two focus groups with eight family members of people affected by ASD. Particular emphasis is placed on impact of adaptive functioning difficulties on wellbeing and quality of life for adults with ASD. Grounded theory approach has been used to analyse gathered data. Interviewees reflected on daily challenges associated with unexpected changes in routine, sensory difficulties and social interactions. These in turn had an impact on their adaptive functioning skills by introducing complications in the process of making transitions between different contexts and decreasing interviewees’ ability to tackle challenges of daily life. Importance placed on societal expectations towards meeting bespoken standards and conforming to norms ruling the structure and interactions of daily life were also widely discussed. Frequently such expectations did not allow for factoring in the developmental nature of ASD and related difficulties, which as a result triggered additional complexity in managing daily transitions for adults on the spectrum. Further research addressing adaptive functioning skills in daily transitions for adults with ASD is needed

Transitions to and within adulthood for young people with special educational needs

No abstract available

Risk behaviours in transition to adulthood for people with autism spectrum disorder

This article explores risk behaviour in adults with a diagnosis of Asperger's syndrome (AS) or high-functioning autism (HFA) during the transition to adulthood, drawing on interviews with twelve individuals and on two focus groups comprising members of other families affected by autism spectrum disorder (ASD). The authors examine the subtle interplay between engagement in a variety of risk behaviours and the health and wellbeing of particular individuals with ASD. Feelings of anger, hopelessness and self-harming were common responses to bullying and pervasive difficulties with social interaction. There appears to be no clear causal relationship between risk behaviours and transition, which is characterised by protracted and complex period of identity formation. The current orthodoxy of service provision emphasises the importance of integration with the local community, irrespective of the challenges this may present to people with ASD. There is scope for further elaboration of the concept of ‘emerging adulthood’ in relation to people with disabilities in general and people with ASD in particular

All-cause and cause-specific mortality in people with autism spectrum disorder:A systematic review

Background: The aim of this systematic review was to synthesise the current literature on all-cause and cause-specific mortality in individuals with autism spectrum disorders (ASD) to identify whether they experience an increased risk of mortality compared to the general population and to establish which specific causes of death are most prevalent in people with ASD. Method: Medline, Embase, CINAHL and PsycINFO databases were searched. The review was registered with PROSPERO (CRD42021219582). Results: 26 of the 8505 retrieved papers were included. 25 studies reported an increased risk of mortality for people with ASD. Out of 21 studies reporting the relevant statistics, 15 found autistic individuals to have at least a two times higher risk of dying when compared to the general population. 11 studies suggested that females with ASD were at an even greater risk of death when compared to their male counterparts. The most common causes of deaths were from external causes (particularly suicide) and neurological disorders. Conclusions: Recognising the increased mortality experienced by people with ASD is an important factor in how clinicians, support workers and healthcare systems in general should plan and approach care for this population. Although a significant portion of deaths in this group occurs due to intentional or unintentional external causes, the reviewed literature also indicates that many people with ASD die from underlying health conditions. As the increased mortality risk seems to be partially mediated by the co-occurrence of other conditions, it is of great importance to provide an increased level of support and care for this population

Umbrella systematic review of systematic reviews and meta-analyses on comorbid physical conditions in people with autism spectrum disorder

Background: Comorbid physical conditions may be more common in people with autism spectrum disorder (ASD) than other people. Aims: To identify what is and what is not known about comorbid physical conditions in people with ASD. Method: We undertook an umbrella systematic review of systematic reviews and meta-analyses on comorbid physical conditions in people with ASD. Five databases were searched. There were strict inclusion/exclusion criteria. We undertook double reviewing for eligibility, systematic data extraction and quality assessment. Prospective PROSPERO registration: CRD42015020896. Results: In total, 24 of 5552 retrieved articles were included, 15 on children, 1 on adults, and 8 both on children and adults. Although the quality of included reviews was good, most reported several limitations in the studies they included and considerable heterogeneity. Comorbid physical conditions are common, and some are more prevalent than in the general population: sleep problems, epilepsy, sensory impairments, atopy, autoimmune disorders and obesity. Asthma is not. However, there are substantial gaps in the evidence base. Fewer studies have been undertaken on other conditions and some findings are inconsistent. Conclusions: Comorbid physical conditions occur more commonly in people with ASD, but the evidence base is slim and more research is needed. Some comorbidities compound care if clinicians are unaware, for example sensory impairments, given the communication needs of people with ASD. Others, such as obesity, can lead to an array of other conditions, disadvantages and early mortality. It is essential that potentially modifiable physical conditions are identified to ensure people with ASD achieve their best outcomes. Heightening clinicians’ awareness is important to aid in assessments and differential diagnoses, and to improve healthcare

'Are all beliefs equal?' Investigating the nature and determinants of parental attitudinal beliefs towards educational inclusion

This study explores the nature of parental attitudinal beliefs towards educational inclusion and the factors that determine these beliefs. Participants were drawn from the Growing Up in Scotland Survey (N=2200). Results indicate that majority of parents held positive generalised belief towards including children with additional support needs (ASN) in mainstream classrooms (90%), compared with belief about the benefits of inclusion for children with ASN (72%), or benefits for typically developing children (70%). Lower parental income and higher levels of satisfaction with child’s current school were associated with positive generalised beliefs. Belief about the benefits of inclusion for children with ASN was also positively associated with lower parental income, while belief about benefits for typically developing children was determined by higher parental education and age. Our findings suggest that efforts to increase parental attitudes should target salient beliefs and take into account the determinants of each of these beliefs

Prevalence of mental health conditions, sensory impairments and physical disability in people with co-occurring intellectual disabilities and autism compared with other people: a cross-sectional total population study in Scotland

Objectives: To investigate prevalence of mental health conditions, sensory impairments and physical disability in children, adults and older adults with co-occurring intellectual disabilities and autism, given its frequent co-occurrence, compared with the general population. Design: Whole country cohort study. Setting: General community. Participants: 5709 people with co-occurring intellectual disabilities and autism, compared with 5 289 694 other people. Outcome measures: Rates and ORs with 95% CIs for mental health conditions, visual impairment, hearing impairment and physical disability in people with co-occurring intellectual disabilities and autism compared with other people, adjusted for age, sex and interaction between age and co-occurring intellectual disabilities and autism. Results: All four long-term conditions were markedly more common in children, adults and older adults with co-occurring intellectual disabilities and autism compared with other people. For mental health, OR=130.8 (95% CI 117.1 to 146.1); visual impairment OR=65.9 (95% CI 58.7 to 73.9); hearing impairment OR=22.0 (95% CI 19.2 to 25.2); and physical disability OR=157.5 (95% CI 144.6 to 171.7). These ratios are also greater than previously reported for people with either intellectual disabilities or autism rather than co-occurring intellectual disabilities and autism. Conclusions: We have quantified the more than double disadvantage for people with co-occurring intellectual disabilities and autism, in terms of additional long-term health conditions. This may well impact on quality of life. It raises challenges for staff working with these people in view of additional complexity in assessments, diagnoses and interventions of additional health conditions, as sensory impairments and mental health conditions in particular, compound with the persons pre-existing communication and cognitive problems in this context. Planning is important, with staff being trained, equipped, resourced and prepared to address the challenge of working for people with these conditions

Prevalence of mental health conditions and relationship with general health in a whole-country population of people with intellectual disabilities compared with the general population

Background: There are no previous whole-country studies on mental health and relationships with general health in intellectual disability populations; study results vary. Aims: To determine the prevalence of mental health conditions and relationships with general health in a total population with and without intellectual disabilities. Method: Ninety-four per cent completed Scotland’s Census 2011. Data on intellectual disabilities, mental health and general health were extracted, and the association between them was investigated. Results: A total of 26 349/5 295 403 (0.5%) had intellectual disabilities. In total, 12.8% children, 23.4% adults and 27.2% older adults had mental health conditions compared with 0.3, 5.3 and 4.5% of the general population. Intellectual disabilities predicted mental health conditions; odds ratio (OR)=7.1 (95% CI 6.8–7.3). General health was substantially poorer and associated with mental health conditions; fair health OR=1.8 (95% CI 1.7–1.9), bad/very bad health OR=4.2 (95% CI 3.9–4.6). Conclusions: These large-scale, whole-country study findings are important, given the previously stated lack of confidence in comparative prevalence results, and the need to plan services accordingly

The prevalence and general health status of people with intellectual disabilities and autism co-occurring together – a total population study

Background: Little is known about the population prevalence of co-occurring intellectual disabilities and autism, and its impact on general health status. This study aimed to investigate this, in comparison with the general population. Method: Whole country data from Scotland's Census, 2011 were analysed. Descriptive statistics were generated, 2 tests undertaken, and logistic regressions undertaken both with the whole general population data, adjusted for age and gender, and within the population with co-occurring intellectual disabilities and autism. Results: 5,709/5,295,403 (1.08/1,000) people had co-occurring intellectual disabilities and autism; 2.58/1,000 children/young people and 0.74/1,000 adults. The peak reported prevalence was at age 10 years (3.78/1,000). 66.0% were male. Their general health status was substantially poorer than for the rest of the population, more so for children/young people, and they had more limitations in their day-to-day activities. Co-occurring intellectual disabilities and autism had odds ratio=48.8 (45.0-53.0) in statistically predicting poor health. Conclusion: This is the first study to report the population prevalence of co-existing intellectual disabilities and autism, and the substantial influence this double-disadvantage has on general health status, apparent across the entire life-course. This highlights a group in need of wider recognition for whom resources should be focused on and planned for, informed by evidence. Staff in services for people with either of these conditions need to be trained, equipped, resourced and prepared to address the challenge of working for people with this duality. This is essential, to address these substantial health inequalities

Action on Autism Research in Scotland. Final Report

An advanced international multidisciplinary, multi-agency research seminar series held between November 2013 and November 2014