Autism Policy & Practice.

Editorial

2019-09-09T18:37:58+01:00

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How Social Deficit Models Exacerbate the Medical Model

2019-09-09T18:37:59+01:00

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Guidelines for Conducting Research Studies with the Autism Community

2019-09-09T18:38:00+01:00

There has been growing awareness of the concern expressed by autism communities that the majority of research conducted reflects neither the priorities of autistic people and their families or their needs. Further, many autistic people report that they feel unable to influence research and desire greater involvement in the research process. The aim of our current work is to provide practical guidelines for researchers to consider when conducting autism research in order to increase involvement, collaboration and trust between researchers and the autism community. These guidelines are based on the output of focus groups and interview discussions with 22 autistic adults and 8 parents of autistic children, conducted during a series of workshops carried out as collaboration between the research network, Autism@Manchester and Salfordautism, an autism support group led and run by autistic professionals. The guidelines are organised into four sections: (1) Pre-study considerations (2) Recruitment of Participants (3) Study visit Considerations (4) Post-study Considerations. These sections are structured to reflect the research pathway and allow researchers to understand more easily how to incorporate the recommendations into their research. The recommendations promote effective communication and equal partnerships between the autism and research communities so that the needs of participants pre-, during and post- research are taken into account and that they are supported to become involved in research at the level they choose. It is hoped that by implementing transparent and participatory approaches to their work, researchers might be able to reduce some of the dissatisfaction that the autistic community feel towards research and lead to higher standards in autism research.

Are the “Autistic Traits” and “Broader Autism Phenotype” Concepts Real or Mythical?

2019-09-09T18:38:01+01:00

The concepts “autistic traits” and “broader autism phenotype” are not officially recognised by the diagnostic authorities. The broader phenotype of autism is regarded as a sub-clinical presentation of behaviours or traits qualitatively similar to features associated with autism and often referred to as “autistic traits”. We consider how the concept of a broader autism phenotype originated, undertake a brief review and comparison of the theoretical perspectives on autism and “autistic traits”, analyse the statement sets in four instruments used for identifying so-called “autistic traits”, and review the justifications for a broader autism phenotype. We conclude that the concept of “autistic traits” arises from a misuse of language, that the absence of autistic traits indicates that there is no such thing as a “broader autism phenotype”, and that apparent evidence for the existence of a broader phenotype is more likely evidence for the population of autistic people being larger than suspected.

Transnational Autistic Identities

2019-09-09T18:38:02+01:00

The historic lack of diversity in autism scholarship has affected the way we teach and learn about autistic identities and knowledge across disciplines and spaces. As more autistic authors fight for visibility and representation in social and academic platforms, there remains a dearth of scholarship regarding postcolonial and/or transnational autistic experiences. This is despite the rich discourse prevalent in online communities accessed by autistic users around the world. This paper explores the use of digital discourse analysis to disrupt the academic ghost authorship of autism, which often erases (or evades) intersecting issues of race, language, and nationality in the negotiation of autistic knowledge and identities. Scholars who study or collaborate with online communities can investigate the ways this knowledge is constructed across cultural and political borders, thereby holding space for underrepresented autistic perspectives.

Between a rock and a hard place: The problems and practices of professionals and care workers supporting autistic people with regards to their sexual autonomy, capacity and decision making.

2019-09-09T18:38:03+01:00

This article presents findings from a research project that examined the problems of professionals and care workers who work with autistic people in dealing with issues of sex and sexuality in their day-to-day work with service users. The research explored what professionals and support workers feel they can or should do when providing support for people whose intellectual disability or mental condition makes their sexual consent—being informed, competent and free from coercion—legally unreliable.

As desexualising prejudices about people with disabilities recede, staff and their organisations are left with no guidance as to how to support service users with regards to the realisation of their sexual desires and the expression of the sexual identities. The law is unhelpful, in that the 2003 Sexual Offences Act and the 2005 Mental Capacity Act make contradictory demands of settings in terms of the criteria for consent and its absence.

Despite contradictions in the law and the absence of national guidelines, the overarching finding from the data is that staff are sensitive to the needs and desires of their service users, and have developed an inclusive ethos and display positive attitudes in supporting the people they work with regarding to their sexuality. However, the contradictory demands of the SOA (2003) and MCA (2005) presented staff with a dilemma: On the one hand, staff and the organisations they work for have statutory duties to safeguard the people they support, but at the same time, they also work in a strengths-focused way to support individuals to live a full and fulfilled life, which includes a recognition of their sexual desires, orientations and identities. At the core of staff concerns are judgements of the competence and comprehension of the service user, complicated by the difficulty of assessing competence, and recognising that competence is neither easily measured nor consistent amongst service users.

Who benefits from autism research? And to what extent is it participatory and/or emancipatory?: A brief follow-up to Pellicano, Dinsmore and Charman (2014)

2019-09-10T07:39:35+01:00

It was pointed out in a survey of the autism community in the UK that, despite the welcome increase in the amount of research on autism, and the amount of funding provided for autism research, ‘there was a clear disparity between the United Kingdom’s pattern of funding for autism research and the priorities articulated by the majority of participants’ in the survey (PDC study; Pellicano, Dinsmore and Charman, 2014, p. 756). More recently, in an editorial in Autism, Liz Pellicano and various other colleagues, announced a new era for autism research following the recommendation of the US Government’s Interagency Autism Coordinating Committee (IACC) that ‘autism-related research funding in the United States should increase further still, doubling by 2020’. Pellicano et al. (2018) pointed out that the IACC called for more research that directly affects the lived experiences of autistic people. Although the IACC call was not for research in areas prioritised by the autism community, if the call is heard and acted upon there should be a greater focus on what is important to the community. There is no US equivalent of the PDC study, nor a UK equivalent of the US government body’s call for more research of direct benefit to autistic people.

Autism: a new introduction to psychological theory and current debate.

2019-09-09T18:37:59+01:00

Fidler & Christie Book Review Collaborative Approaches to Learning for Pupils with PDA: Strategies for Education Professionals book review.

2019-09-09T18:38:00+01:00

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The Reflective Journey: A practitioner’s guide to the low arousal approach.

2019-09-09T18:38:01+01:00