Assistance Dogs for People with Younger (Early)-Onset Dementia: The Family Carer's Experience.

There is growing evidence for trained assistance dogs promoting the health, wellbeing, and quality of life of people in a variety of circumstances, including for those with dementia. Little is known about people with younger (early)-onset dementia (YOD) and family carers. As part of a larger study involving 14 people with YOD matched with trained assistance dogs over a two-year period, we report analyses of interviews with 10 family carers conducted on multiple occasions investigating their experience with an assistance dog. Interviews were recorded, transcribed and subjected to inductive thematic analysis. They told a range of experiences; the good and the challenging. Findings fell into three areas: the human-animal bond; relationship dynamics; and responsibility for caring. Concerns were raised with respect to the resources required of carers together with the financial resources needed to support an assistance dog. The study concludes that trained assistance dogs can play an important role promoting the health and wellbeing of both people with YOD and of their family carers. However, support needs to be in place as the circumstances of the family member with YOD changes and the role of the assistance dog as part of the family also changes. Practical (financial) support of a scheme such as the Australian National Disability Insurance Scheme (NDIS) could be important to sustaining such support.

Echolalia as defined by parent communication partners.

Backgrounds and aims: Echolalia, the repetition of previous speech, is highly prevalent in Autism. Research into echolalia has historically assumed a clinical standpoint, with two opposing paradigms, behaviourism and developmentalism, offering differing support and intervention programs. These paradigms offer a multitude of clinical operationalised definitions; despite attempts, there continue to be challenges regarding how echolalia is to be defined. Stepping out of the dichotomous clinically orientated literature, we examined how parents summarise and formalise their understanding of echolalia as a communication partner. The objectives of this study were three-fold: (1) to investigate how echolalia is described and defined by parents; (2) to examine if existing clinical definitions align with those of parents; and (3) to begin to consider the implications of such findings for a collaborative approach between clinical perspectives and the parent experience. We bring to the fore the voices of parents, who have historically remained absent from echolalia literature. That is to say, we step outside of the clinical realm and listen to parents: something which has been previously unconsidered but represents a new vital addition to the echolalia literature. Methods: We employed a Grounded Theory approach to document the definitions of 133 parents. Results: We found that parents reported a multiplicity of important elements that are key to their understanding of echolalia. Conclusions and implications: Additionally, we found that clinical definitions do not resonate within the parent experience; parents experience echolalia in a different way to that of clinicians and parents can offer insight into our understanding of the phenomena. Our findings show that while some parents might align themselves with either a behavioural or developmental positionality, sometimes there is an overlap depending upon the context in which their child repeats and some parents advance interpretations that are not readily aligned with either of the traditional clinical schools of thought. We present implications for both clinicians and parents in ways that point towards a collaborative approach to support the person with echolalia.

'Let me tell you, I see echolalia as being a part of my son's identity': Exploring echolalia as an expression of neurodiversity from a parental perspective.

LAY ABSTRACT: Echolalia is a commonly found speech and language condition in autistic children. Children with echolalia repeat words and phrases they previously hear in place of proving a non-repetitive response. In research and when visiting speech and language services, one of the common goals is to modify these repetitions so that these children may, more socially, engage with their surrounding environment. In our research, we identified that not all parents want their children's echolalia to be modified. Some parents want their child to be able to enjoy echolalia and others don't want anyone to intervene because they see it as something that makes their child unique and being unique is something to be celebrated. We believe that there might be a way for speech and language services who want to modify echolalia and the parents in our study who do not want their child's echolalia to be modified, to be able to exist side-by-side.

Late effects of polio: Interviewing general practitioners and health professionals about the need for and the means of promoting continuing professional development.

BACKGROUND AND OBJECTIVES: Polio Australia estimates tens of thousands of polio survivors are experiencing late effects of polio (LEoP), including increased cases among young women of childbearing age in some migrant communities. Because polio has been declared eradicated in Australia, the provision and uptake of education by general practitioners (GPs) and healthcare professionals (HCPs) is minimal. We explored the awareness of LEoP among HCPs and ways to enhance knowledge dissemination to improve clinical practice. METHOD: A qualitative study was undertaken, informed by a descriptive (transcendental) phenomenological approach. Semistructured interviews were audio recorded, transcribed and analysed inductively, with a conciliation among the research team used to finalise the themes. RESULTS: HCPs expressed the importance of learning about LEoP and how this may help build supportive patient-practitioner relationships and contribute to patient outcomes. Factors influencing the uptake of professional development included motivation, possibly stemming from a lack of awareness of LEoP, together with the time and logistical limitations of practice generally. DISCUSSION: Online learning activities followed by an assessment may be attractive for some HCPs, but peer-based and multidisciplinary continuing professional development activities remain preferred.

Mapping the parent experience of echolalia in autism spectrum disorder onto a conceptual taxonomy.

PURPOSE: Echolalia, the repetition of previously heard speech, is prevalent in a variety of neurologic and psychiatric disorders. Within the context of echolalia in autism spectrum disorder (ASD), research and intervention historically assume a clinical standpoint with two opposing paradigms: behaviourism and developmentalism. The literature is largely silent on how those other than researchers and clinicians understand echolalia. This study examined how parents experience echolalia through their children with ASD. The aim of the study was to ascertain if the parental perception of echolalia in ASD aligns with, or offers alternative perspectives to, current clinically-orientated views. METHOD: We employed online semi-structured interviews to document the experiences of 126 parents, reflecting on their children with ASD aged 3 to 34 years of age, to determine if the parent experience could be mapped onto existing clinical frameworks, or if they might offer new perspectives. We used hermeneutic phenomenological data analysis in an abductive framework. RESULT: Echolalia has predominantly been represented in literature through the perspectives of behaviourism or developmentalism. We found however, that echolalia is a phenomenon that is experienced by parents in a variety of different ways to that of the current clinically-orientated understandings. Such new ways of understanding echolalia that emerged from our analysis include one understanding which is dependent upon how echolalia is heard, and one in which parents are "waiting for echolalia to evolve." CONCLUSION: The traditional dichotomous clinical positions do not resonate with all parents, and reliance on these traditional perspectives alone may impact effective engagement with parents and the success of interventions and support strategies. Our findings have implications for future research, the education of clinicians and educators, and the design of support and intervention for those who have echolalia.

Interacting with adults with congenital deafblindness: The experiences of disability support workers.

BACKGROUND: This study aimed to gain greater insight into the perspectives of staff on their interactions with adults with congenital deafblindness in light of the research literature reporting these interactions to be lacking in quality and quantity. METHOD: Data from interviews with 8 disability support workers were analysed using the approach described by Charmaz (2006). RESULTS: Three key themes emerged from the interview data, which support and elaborate on findings of previous studies. These were (1) the construction of client happiness, (2) the rationalisation of client disengagement, and (3) imperatives of the staff role. These findings elucidate the reasons for staff behaviour in their interactions with adults with congenital deafblindness. CONCLUSION: The findings suggest the need for staff policy and procedural documents to be explicit about the importance of social interaction between staff and clients.

Short report: Gendered workplace social interaction processes in autism.

BACKGROUND: Navigating workplace social interactions can be stressful for autistic people and be experienced differently by gender. A better understanding of the autistic experience of these difficulties is needed to inform effective policy, practice, and individualized support. METHOD: Fifty-five autistic individuals (n women=32; n men=22) participated in either an online survey or focus group. Data were analyzed using inductive thematic analysis. RESULTS: The data suggests that the social and interaction expectations placed upon autistic individuals differ by gender and can contribute to occupational stress. CONCLUSIONS: The data provides a basis for further investigation considering Conservation of Resources Theory and its practical application to inform reasonable adjustments in the workplace for autistic people. WHAT THIS PAPER ADDS: The gendered workplace experiences of autistic people is an emerging area of research. However, how workplace social interactions are experienced by each gender remains under-researched. An understanding of this could help decrease occupational stress, inform reasonable adjustments, and increase labor market participation in this population. This paper adds to the existing literature in showing that workplace social interactions for autistic people are experienced differently by gender. As such, the implications in the experience of occupational stress may also differ. Therefore, the importance of having reasonable adjustments in the workplace that account for gender is highlighted.

Repeating purposefully: Empowering educators with functional communication models of echolalia in Autism.

Background and Aims: Echolalia, the repetition of speech, is highly prevalent in school aged children with Autism. Prior research has found that individuals with echolalia use their repetitions to engage in communicatively functional speech, in the absence of self-generated speech. Educators are the natural audience for a wide vary of echoed utterances across environments and in differing contexts. The objectives of this paper were three-fold: (1) to systematically investigate how researchers identify and ascribe communicative function to echoed utterances; (2) to gather and evaluate the evidence that might assist teachers to identify and better understand echoed utterances as being communicatively purposeful; and (3) to provide teachers with evidence-informed response strategies they can use to assist their students on their journey towards more self-generated speech. Main Contribution: Prior research in the field of echolalia has generally been segmented into opposing viewpoints. A paucity of work in the echolalia field has meant that there is limited work that has sought to view how a communicative function to echolalia has been ascribed from across multiple disciplines and fields. As such, there is limited literature to guide the practice of classroom educators. This review combines communicative models from across various disciplines with the view to supporting classroom educators by providing guidance on how they might assist their students with echolalia. This review represents the first contribution to the research literature in this area. Conclusions and Implications: Research into echolalia did not originally emanate from the field of education; however, anecdotes from classroom educators were cited as the primary impetus for the creation of some of the communicatively functional models. We found that although there are many techniques that researchers have used to attribute a communicative function to echolalia, some of these can be easily employed by educators in their practice. By adopting these techniques, educators are placed in a position that may assist with the identification of communicative echolalia; subsequently they are better placed to acknowledge and respond to their students.

A preliminary investigation of the utility of the "Behavior Support Plan Quality Evaluation Guide II" for use in Australia.

BACKGROUND: The quality of behaviour support plans (BSPs) can be an important influence on the quality of the support provided to people with disability who show challenging behaviours. The Behavior Support Plan Quality Evaluation Guide II (BSP-QE II) is one tool that may be useful in assessing the quality of behaviour support plans. It has previously been used to assess BSPs to support children in schools in the USA. In this preliminary study, we examined the utility of the BSP-QE II for assessing behaviour support plans designed for adults with an intellectual disability in community support services in Australia. METHOD: Experienced practitioners were surveyed concerning the relevance of BSP-QE II components to the evaluation of BSPs in Australia, and an audit was conducted of randomly selected BSPs submitted as a statutory requirement to the Office of the Senior Practitioner. RESULTS: The BSP-QE II showed evidence of acceptable construct validity and interrater reliability. There was evidence of a need for substantial improvement in the quality of BSPs, consistent with previous findings conducted using other audit tools. CONCLUSIONS: The findings support the utility of the BSP-QE II, to inform and evaluate service planning in supporting adults with intellectual disability who show challenging behaviour.

Service and support needs of Australian carers supporting a family member with disability at home.

BACKGROUND: As part of an international, multicentre project, the service and support needs of Australian family carers were investigated. METHOD: A sample of 1,390, 448 family carers completed a self-report survey, including an adaptation of the Family Needs Survey (FNS) and several open-ended questions. A mixed method design was used, employing quantitative and qualitative analyses. RESULTS: On the FNS the most frequently endorsed items were those relating to the need for information about services and, in particular, future, out-of-home accommodation. Similarly, the need for respite services was endorsed by over 80% of respondents. Comments indicated that access to and the quality of respite, day support, and therapy programs were a priority. CONCLUSIONS: Participants expressed the need for greater access to information. Access to appropriate respite options, together with quality day support and therapy services, remain a priority for family carers.

"I Would Love to Just Be Myself": What Autistic Women Want at Work.

Background: Autistic individuals experience barriers obtaining and sustaining employment. In the general population, gender also impacts labor market experiences. Understanding the occupational aspirations and expectations of individuals disaggregated by autism diagnosis and gender may assist the development of tailored workplace policies and support strategies. Methods: We used inductive thematic analysis to understand the employment expectations of 89 participants (34 autistic women, 32 typically developing women, and 23 autistic men) who answered open-ended items in an online survey. Participants were ages 18 to 68 years. We identified themes and compared these by autism diagnosis and gender. Results: The first major theme emerging from the data was the desire for an opportunity to have a fulfilling career (i.e., fit), with associated minor themes of job-person and person-environment fit. With no associated minor themes, the second and third major themes were desire for stable employment and low hope for finding meaningful work. Differences were apparent by autism diagnosis and not gender. Conclusions: It is pertinent that autistic women have job-person and person-environment fit to thrive at work. Workplace policies and procedures influencing attitudinal, structural, and procedural change appear warranted to facilitate inclusion of autistic women in the labor market. Lay summary: Why was this study done?: Autistic people have a lot of difficulties gaining and maintaining suitable work. Yet, no one has asked autistic women what they hope their future in the workforce could look like. Asking this question can highlight problems and possible solutions to help autistic women gain and maintain meaningful employment.What was the purpose of this study?: To help understand the aspirations of autistic women regarding their employment.What did the researchers do?: We asked autistic and nonautistic women, as well as autistic men, in Australia to answer open-ended questions in an online survey about work. One question was "what do you hope for your future in the workforce?" We organized people's responses into categories, or themes, which described different aspects of participants' answers. We then compared written responses of the autistic and nonautistic women, as well as the answers of autistic women and men.What were the results of the study?: Participants' responses can be described with three major themes: (1) an opportunity to have a fulfilling career that matches interests and skills in a suitable environment; (2) wanting stable employment; and (3) having low hope for finding meaningful work. Finding a job that suits interests, skills, and work preferences within a supportive environment was mentioned as vital for sustained participation in the labor market by autistic women. Although these things were also mentioned by nonautistic women, they were much more important for autistic women. Furthermore, autistic women's and men's aspirations are similar, and of equal importance to each of them.What do these findings add to what was already known?: Much is already known about the experiences of autistic men in the workplace. This study addresses and builds on the little research about the occupational aspirations and expectations of autistic women. The results of this study suggest that autistic women want an opportunity to find meaningful and stable work where they "fit in" with the freedom to be themselves. Because some similarities were found between what autistic and nonautistic women (as well as autistic men) need in the workplace, if changes affecting businesses are made to help autistic women, more people would benefit.What are potential weaknesses in the study?: This research is limited by the way information was obtained from participants, and sample characteristics; for example, the autistic women were diagnosed with autism at a younger age than the autistic men. It is a small, qualitative study from a single open-ended survey item. Obtaining participants using social media may mean people in metropolitan areas more likely participated. Furthermore, the sample was from Australia only, looked at people who identified as women or men, and did not address racial or ethnic diversity.How will these findings help autistic adults now or in the future?: Understanding the aspirations of autistic women can suggest interventions that help them succeed in the workforce. The strong desire for job-person-environment fit by autistic women could, for example, suggest encouraging more flexible workplace practices supportive of career development. Or, it could suggest creating a free, or subsidized, support service to help autistic people of all ages find work that matches (or can be molded) to suit their skills, abilities, work preferences, and environmental (e.g., sensory) needs.

Staff behaviour and resident engagement before and after active support training.

BACKGROUND: Identifying the factors associated with greater increases in resident engagement has the potential to enhance the effectiveness of active support (AS). METHOD: Observational data from Stancliffe, Harman, Toogood, and McVilly's (2007) study of AS were analysed to evaluate amount of staff help, effectiveness of staff help, and staff use of praise. RESULTS: Lag analyses showed that antecedent staff help was consistently followed by resident engagement at pre-test. This strong association did not increase significantly at post-test. Resident engagement was more likely to follow staff help than the other way around. There was an increase from pre-test to post-test in help and praise by staff. The higher absolute amount of praise was largely the result of the increase in staff help. CONCLUSIONS: The amount of staff help, its effectiveness, and use of praise by staff may each be important in increasing engagement. These factors should continue to be the focus of research attention and applied efforts to help ensure active support is consistently effective.

Challenges for females with high functioning autism in the workplace: a systematic review.

PURPOSE: Individuals with High Functioning Autism (HFA) experience high levels of underemployment and unemployment, resulting in negative economic, social, and health outcomes. Given what is known about labor market participation difficulties experienced by women generally, and the paucity of research concerning women with HFA, this systematic review synthesized what is known about the labor market experiences of women with HFA. METHOD: A systematic review of the literature concerning adult females with HFA in relation to the workplace yielded 1947 results; 11 met inclusion criteria being based on original data, but not necessarily focusing solely on women. RESULTS: The total number participants with HFA across all studies was 731 (M = 66.45, SD = 95.44, Mdn = 18.00) aged between 18 and 70 years (M = 34.38, SD = 7.71); females represented 38% (n = 279) of those sampled. The principal challenges reported for individuals with HFA at work were communication, social interaction, and stress, together with negative mental and physical health. CONCLUSION: These results should be interpreted with caution. Of the studies found, 73% were qualitative and based on small samples. Only one paper differentiated female data in analyses. These factors combined suggest large-scale mixed method research focused on females with HFA is required to gain an accurate insight into the challenges faced in the workplace, to in turn inform intervention and support. However, implications for rehabilitation based on what is known are discussed. Implication for Rehabilitation Unemployment and underemployment of persons with High Functioning Autism (HFA) poses social, health and economic issues for both individuals and the wider community. Those with HFA have the intellectual capacity to make a substantial contribution to the workplace. Based on what is known, some of the challenges for females with HFA might be similar to those experienced by men with HFA, however it is possible that there are gender-based differences (in both type and severity of challenges) that require attention.

Initiatives to reduce the use of seclusion and restraints on people with developmental disabilities: a systematic review and quantitative synthesis.

Contrary to the expectations articulated in public policy, restrictive interventions are commonly used in support services for people with developmental disabilities. This systematic review and quantitative synthesis was undertaken to investigate whether the use of seclusion and restraints on people with developmental disabilities can be reduced. Searches of the Academic Search Complete, CINAHL, MEDLINE, and PsycINFO electronic databases returned 7226 records, of which 11 met the inclusion criteria for this review. A further 3 papers were obtained through scanning the reference lists of those articles included from the initial literature search. All 14 studies were single-subject designs focusing on initiatives to reduce physical or mechanical restraint. Between the baseline and intervention phases, there were mean reductions in the frequency and duration of restraint use of 79% (SD=21%, n=13 subjects from 7 studies) and 45% (SD=58%, n=10 subjects from 6 studies), respectively. For studies in which restraint use to manage agitation and aggression was targeted, there was a 79% (SD=21%, n=13 subjects from 7 studies) decrease in the frequency and a 28% (SD=67%, n=6 subjects from 3 studies) reduction in the duration of restraint. With respect to studies in which restraint use to prevent self-harm was targeted, there was a 71% (SD=34%, n=4 subjects from 3 studies) reduction in restraint use. Effect sizes were calculable, using non-overlap approaches, for 9 of the 14 studies. The magnitudes of the effect sizes suggest that, on average, the interventions were effective in reducing the use of restraints. The effects generated in studies where restraint use for self-harm was targeted were typically more pronounced than those in which restraint use for agitation and aggression was addressed. There were broad variations, however, in the percentage reductions in restraint use and in the magnitudes of the effect sizes. Although the findings of this review are encouraging, more research is needed, in which greater attention must be paid to rigorous research design, application, and analysis.