Advances in Autism : 2017 – Issue 4
1. Eddie C, Jane M. Editorial. Advances in Autism ;2017 ;3(4):185-186.
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2. Giuliana GC, Federico C, Rachel L, Nora LE, Viviane S-J, Elisa R, O. BM. Residential placement and quality of life for adults with severe autism spectrum disorders and severe-to-profound intellectual disabilities. Advances in Autism ;2017 ;3(4):187-205.
Purpose The purpose of this paper is to evaluate the relationship between some main characteristics of different living arrangements and the quality of life (QoL) of their users with severe intellectual disability and low-functioning autism spectrum disorders. Design/methodology/approach Study participants were assessed for ASD severity through the Childhood Autism Rating Scale or the Vineland Adaptive Behavior Scales (VABS) : for behavioral problems with the aberrant behavior checklist (ABC) ; for perception of efficacy and satisfaction with care, through an adapted Visual Analogue Scale ; and for QoL with the QoL inventory in residential environments (validated in French as Inventaire de la Qualité de Vie en Milieu Résidentiel). Because the goal was to define a “residential profile (RP),” the authors evaluated each participating residence with the Working Methods Scale and the questionnaire on residential parameters. Findings The RP allowed for the classification of the residences into three clusters. The authors found no clear relationship between QoL and the RP clusters, but the authors found the RP clusters to be significantly correlated with ABC factors F1 (irritability, agitation, crying) and F2 (lethargy, social withdrawal), and VABS scores for living, socialization, and motor skills. Originality/value RPs were more strongly correlated with ABC items and the ability to cope with everyday life than with QoL. The authors hypothesize that RP is correlated with both aberrant behavior and the autonomy of residents and that QoL remains relatively stable. Therefore, RP is correlated with the status of the residents ; however, this appears not to be correlated with their QoL.
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3. Ashleigh H, Monica G, Kianna F. Healthcare experiences of young adults with autism spectrum disorder. Advances in Autism ;2017 ;3(4):206-219.
Purpose Characteristic challenges that define autism spectrum disorder (ASD), coupled with comorbid conditions and poor communication with providers, can lead to inadequate healthcare. The majority of previous work has focused on children. The purpose of this paper is to examine the healthcare experiences of young adults with ASD within the US healthcare system. Design/methodology/approach An online questionnaire was utilized to examine : the accessibility of healthcare for those with ASD : do they make their own appointments, fill out paperwork independently, go in the examination room on their own ; the quality of care they receive : what are their medical needs, how effectively can they communicate their needs, do providers understand their disability ; and the outcomes of care : do they understand their recommended care, can they follow healthcare instructions accurately, are they satisfied with the care received. The authors compared responses of those with ASD (n=16) with those of parents of adults with ASD (n=50), as well as a matched comparison group of young adults without ASD (n=42) for statistical differences using the Fisher Exact test. The authors also asked parents about their time costs of assisting their adult children through the healthcare process. Findings The results suggest that those with ASD overestimated their ability to manage their healthcare needs, felt more positively about the healthcare they received than was warranted, and were significantly less independent in managing their healthcare than their peers. Parents experienced losses and costs in terms of lost productivity, household work, and personal time. Originality/value This study furthers the understanding of the healthcare experiences of young adults with ASD which is crucial to dissecting problems which hamper access to quality care.
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4. Eddie C, Jane M, Andrew F. Defendants with autism spectrum disorders : what is the role of court liaison and diversion ?. Advances in Autism ;2017 ;3(4):220-228.
Purpose The purpose of this paper is to examine the role of liaison and diversion services working in the lower courts (also known as Magistrates’ courts) with regard to autism spectrum disorders (ASDs) and their assessment, in particular, the role of pre-sentence and psychiatric reports and interviews. Design/methodology/approach Current practice is described in the lower courts in the context of current legislation and procedures. Findings When writing reports, there is a need for expertise to offer an opinion on future risk, disposal and what needs to be in place to support people with ASDs. No assumptions should be made when reporting on the basis of an ASD diagnosis alone and each case must be assessed on its individual merits while ensuring that individual human rights are protected. Originality/value There is currently a sparse literature examining ASD in court settings. This paper seeks to clarify the current practice.
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5. Nicola M, Maclean MDE, Tara S, Gemma D, Simon B-C, Richard M. Does “mentoring” offer effective support to autistic adults ? A mixed-methods pilot study. Advances in Autism ;2017 ;3(4):229-239.
Purpose The Research Autism Cygnet Mentoring project was a two-year pilot study, completed in 2016, which aimed to develop, trial and evaluate a mentoring scheme designed with input from autistic people, their families and supporters. The paper aims to discuss these issues. Design/methodology/approach The mentoring scheme involved 12 matched pairs (mentor/mentee) meeting once per week for one hour, over a six-month period. All mentors attended a training day, led by the principles of personal construct theory and an emancipatory research ethos. The project and training involved significant involvement of autistic people in both its design and delivery. Findings Participants on the autism spectrum found their mentoring experience very helpful in enabling them to progress towards self-identified goals, and mentees felt empowered by the person-centred ethos and the methods employed on the project. However, a number of aspects of the mentoring project have been identified that require further investigation, including : caution over offering mentoring without formal structures, boundary setting, supervision, flexibility and the matching of mentees with mentors. Originality/value The project has highlighted the potential benefits of time-limited goal-orientated mentoring and the negligible evidence base underpinning current mentoring practice with adults on the autism spectrum. In order for the project to realise its emancipatory aim, there is a need for a large-scale quantitative study and a health-economics analysis to provide the necessary evidence base for mentoring to be recommended as a cost-effective intervention with clear benefits for individual wellbeing.
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6. Sarah A, J. TR. Autism awareness training for youth offending team staff members. Advances in Autism ;2017 ;3(4):240-249.
Purpose Many in contact with the criminal justice system (CJS) have complex needs, including autism. The purpose of this paper is to present the development, design and evaluation of a training package designed to increase awareness that Youth Offending Team (YOT) staff members in the UK have of autism in the CJS (Talbot, 2010). Training quality and effectiveness was assessed. This paper aims to highlight the need for organisations/individuals providing training services relating to autism to be transparent, evidence based and open to sharing best practice. By evaluating practice, disseminating findings and hopefully providing mutual support, trainers can create networks to enhance the value of training provision, ultimately increasing the quality of support offered to individuals with autism. Design/methodology/approach A training package relating to autism in forensic systems was developed and delivered to staff working within a UK YOT. Levels of self-reported knowledge and confidence in working with individuals with autism are measured by evaluation questionnaires completed pre- and post-training. Findings Results demonstrate a significant increase in self-reported knowledge and confidence in working with individuals with autism within the CJS following training. Originality/value This highlights the potential for evidence-based staff training to enhance individuals’ practice working with individuals with autism within the CJS.
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7. Sarah T, Kanmani B, Jane SA. What is the association between ADI-R scores and final diagnosis of autism in an all IQ adult autism diagnostic service ?. Advances in Autism ;2017 ;3(4):250-262.
Purpose The diagnosis of autism in adults often involves the use of tools recommended by NICE guidance but which are validated in children. The purpose of the paper is to establish the strength of the association between the Autism Diagnostic Interview-Revised (ADI-R) scores and the final clinical outcome in an all intellectual quotients adult autism diagnostic service and to establish if this in any way relates with gender and intellectual ability. Design/methodology/approach The sample includes referrals to Leeds Autism Diagnostic Service in 2015 that received a clinical outcome. Sensitivity, specificity and positive and negative predictive values were calculated to evaluate ADI-R and final clinical outcomes. Logistic regression model was used to predict the effect of the scores in all the domains of ADI-R and the two-way interactions with gender and intellectual ability. Findings ADI-R has a high sensitivity and low specificity and is useful to rule out the presence of autism, but if used alone, it can over diagnose. Restricted stereotyped behaviours are the strongest predictor for autism and suggests that the threshold should be increased to enhance its specificity. Research limitations/implications This is a single site study with small effect size, so results may not be replicable. It supports the combined use of ADI-R and Autism Diagnostic Observation Schedule and suggests increasing ADI-R cut-offs to increase the specificity. Practical implications The clinical team may consider piloting a modified ADI-R as suggested by the results. Originality/value To the authors’ knowledge this is the only study of ADI-R in an adult population of all intellectual abilities.
