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Book part
Publication date: 9 November 2020

Helen Rottier and Morton Ann Gernsbacher

Purpose: Due to the developmental nature of autism, which is often diagnosed in preschool or elementary school-aged children, non-autistic parents of autistic children…

Abstract

Purpose: Due to the developmental nature of autism, which is often diagnosed in preschool or elementary school-aged children, non-autistic parents of autistic children typically play a prominent role in autism advocacy. However, as autistic children become adults and adult diagnoses of autism continue to rise, autistic adults have played a more prominent role in advocacy. The purpose of this chapter is to explore the histories of adult and non-autistic parent advocacy in the United States and to examine the points of divergence and convergence.

Approach: Because of their different perspectives and experiences, advocacy by autistic adults and non-autistic parents can have distinctive goals and conflicting priorities. Therefore, the approach we take in the current chapter is a collaboration between an autistic adult and a non-autistic parent, both of whom are research scholars.

Findings: The authors explore the divergence of goals and discourse between autistic self-advocates and non-autistic parent advocates and offer three principles for building future alliances to bridge the divide between autistic adults and non-autistic parents.

Implications: The chapter ends with optimism that US national priorities can bridge previous gulfs, creating space for autistic adult and non-autistic parent advocates to work together in establishing policies and practices that improve life for autistic people and their families and communities.

Details

Disability Alliances and Allies
Type: Book
ISBN: 978-1-83909-322-7

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Article
Publication date: 2 January 2018

Henny Kupferstein

The purpose of this paper is to examine the prevalence of posttraumatic stress symptoms (PTSS) in adults and children who were exposed to applied behavior analysis (ABA…

Abstract

Purpose

The purpose of this paper is to examine the prevalence of posttraumatic stress symptoms (PTSS) in adults and children who were exposed to applied behavior analysis (ABA) autism early childhood intervention. Using an online questionnaire to survey autistic adults and caregivers of autistic children, the author collected data from 460 respondents on demographics, intervention types, and current pathological behaviors with symptom severity scales. This study noted PTSS in nearly half of ABA-exposed participants, while non-exposed controls had a 72 percent chance of being asymptomatic. ABA satisfaction ratings for caregivers averaged neutral or mild satisfaction. In contrast, adult satisfaction with ABA was lower on average and also tended to take on either extremely low or extremely high ratings. Exposure to ABA predicted a higher rate and more severe PTSS in participants, but the duration of exposure did not affect satisfaction with the intervention in caregivers.

Design/methodology/approach

Participants were recruited for an online survey through social media networks, adult gatherings, social skills groups, and autism support groups nationwide. Adult inclusion criteria consisted of autism – diagnosed or self-diagnosed – and an age of 18 or older. A total of 460 respondents, consisting of autistic adults and caregivers of autistic children, completed an online survey. The caregiver entries (n=217) concerned 79 percent male children, 21 percent female children (male to female 3.80:1), and one MtF transgender child, ages 1-38, with an average age at diagnosis of 4.69 years. The adult entries (n=243) concerned 30 percent males, 55 percent females (male to female 0.55:1), and 14 percent other gender, ages 18-73, with an average age at diagnosis of 25.38 years.

Findings

Nearly half (46 percent) of the ABA-exposed respondents met the diagnostic threshold for PTSD, and extreme levels of severity were recorded in 47 percent of the affected subgroup. Respondents of all ages who were exposed to ABA were 86 percent more likely to meet the PTSD criteria than respondents who were not exposed to ABA. Adults and children both had increased chances (41 and 130 percent, respectively) of meeting the PTSD criteria if they were exposed to ABA. Both adults and children without ABA exposure had a 72 percent chance of reporting no PTSS (see Figure 1). At the time of the study, 41 percent of the caregivers reported using ABA-based interventions.

Originality/value

The majority of adult respondents were female, raising questions about the population of online autistic survey respondents. Further, the high numbers of reported gender other than male or female in the adult respondents, as well as at least on MtF child from the caregiver respondents indicates that future studies should consider these intersections. These accompanied significant discrepancies in reporting bias between caregivers and ABA-exposed individuals, which highlight the need for the inclusion of the adult autistic voice in future intervention design. Based on the findings, the author predicts that nearly half of ABA-exposed autistic children will be expected to meet the PTSD criteria four weeks after commencing the intervention; if ABA intervention persists, there will tend to be an increase in parent satisfaction despite no decrease in PTSS severity.

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Article
Publication date: 11 February 2021

Carl Cameron and Abbey Townend

To determine the most appropriate and effective support to enable autistic people to gain and maintain employment in their chosen field. This paper aims to determine this…

Abstract

Purpose

To determine the most appropriate and effective support to enable autistic people to gain and maintain employment in their chosen field. This paper aims to determine this and by which methods are most suitable for this kind of support, with a focus on mentoring.

Design/methodology/approach

Mentoring is an intervention that has shown promise in assisting people who encounter barriers in finding work (for example, Roycroft, 2014). This research was conducted to determine whether the mentoring of autistic adults is effective in helping them to gain and maintain employment. The study examined the mentoring records of 90 autistic adults who were in receipt of funded mentoring with 18 separate organisations across England.

Findings

The authors found that the nationally recognised statistic of autistic people in full-time employment as 16% (National Autistic Society, 2016) was ambitious and subject to regional variation. Based on the results of a programme providing employment and mentoring support that is available and accessible to autistic people, however, outcomes improve and employment is more likely to be achieved and maintained – including in areas of, especially low employment. It was found that 48% of autistic job seekers who were supported by specialist mentors found paid employment (full-time or part-time), demonstrating a 16% increase in paid employment between those who received mentoring support and those who did not.

Research limitations/implications

A wider study across the UK would first determine if the nationally recognised figure is incorrect and also highlight those areas of the country which perform particularly well or badly.

Originality/value

This paper believes that this is the only research of it is kind in the UK and that it is a springboard for others who have greater resources available to them. This study is two very early-career academics on the autism spectrum with limited resources available to us.

Details

Advances in Autism, vol. 7 no. 1
Type: Research Article
ISSN: 2056-3868

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Article
Publication date: 2 October 2017

Georgina Watts

The need for advocacy for autistic adults is emphasised in many government policy and good practice guidelines. The purpose of this paper is to investigate legislation and…

Abstract

Purpose

The need for advocacy for autistic adults is emphasised in many government policy and good practice guidelines. The purpose of this paper is to investigate legislation and policy relevant to advocacy for autistic adults in England and explore whether this translates into practice. It also seeks to clarify which policies can be enforced under current legislation and highlight the gaps in legislative power to ensure implementation of good practice.

Design/methodology/approach

This paper aims to define what is meant by autism advocacy. Relevant legislation, including human rights, disability and autism-specific guidelines, are discussed in respect to autistic adults in England.

Findings

Implementation of autism advocacy policy appears to vary greatly according to local and individual resources.

Originality/value

Autistic adults, and services that support them, may be unaware of the policies and guidelines relevant to advocacy, they may also be confused by the plethora of different guidelines or unsure how to implement these. Further research is needed to review obstacles to the practical application of autism advocacy policy.

Details

Tizard Learning Disability Review, vol. 22 no. 4
Type: Research Article
ISSN: 1359-5474

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Article
Publication date: 23 October 2020

Owen McGill and Anna Robinson

This paper aims to investigate the long-term impacts autistic adults experienced from childhood participation in the applied behavioural analysis (ABA).

Abstract

Purpose

This paper aims to investigate the long-term impacts autistic adults experienced from childhood participation in the applied behavioural analysis (ABA).

Design/methodology/approach

Possible participants were recruited through advertisements on social media and autism and ABA organisations. Possible participants were given the choice between an online or face-to-face interview or an anonymised online questionnaire.

Findings

Reflections from 10 participants were indicative of a predominantly detrimental impact of ABA. Reflections gave rise to a core theme “recalling hidden harms of childhood experiences of ABA”. Outcomes are discussed in relation to the impact on autistic identity, current research and progressing understanding of the impacts of early intervention from the autistic perspective.

Research limitations/implications

The practical implications of ABA are discussed alongside recommendations for future practice and research with the involvement of autistic individuals within interventive processes.

Originality/value

This is the first paper to take an in-depth, qualitative approach to autistic experiences of ABA. The findings themselves are driven to conceptualise and give voice to the core impacts which carried through participants’ exploration and understanding of self.

Details

Advances in Autism, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 2056-3868

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Article
Publication date: 28 February 2019

Dori Zener

The purpose of this paper is to review the barriers that girls and women face in receiving an accurate and timely autism diagnosis. The journey to late-in-life diagnosis…

Abstract

Purpose

The purpose of this paper is to review the barriers that girls and women face in receiving an accurate and timely autism diagnosis. The journey to late-in-life diagnosis will be explored with a focus on mental health and well-being. The aim is to improve the awareness of the female autism phenotype to provide access to early identification and appropriate supports and services.

Design/methodology/approach

The author’s clinical experience as an individual, couple and family therapist specializing in girls and women with autism informs the paper. Research on co-occurring mental health experience and diagnoses are reviewed and combined with case examples to outline the themes leading to and obscuring autism diagnosis.

Findings

Females with autism are less likely to be diagnosed or are identified much later than their male counterparts. Living with unidentified autism places significant mental strain on adults, particularly females. Achieving a late-in-life diagnosis is very valuable for adults and can improve self-awareness and access to limited support.

Practical implications

Mental health professionals will develop a better understanding of the overlap between autism and psychiatric conditions and should consider autism in females who are seeking intervention.

Originality/value

This paper provides a clinical approach to working with autistic girls and women. This knowledge can complement the existing research literature and help build the foundation for a greater understanding of the female autism phenotype.

Details

Advances in Autism, vol. 5 no. 1
Type: Research Article
ISSN: 2056-3868

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Book part
Publication date: 9 November 2020

Kristen Gillespie-Lynch, Patrick Dwyer, Christopher Constantino, Steven K. Kapp, Emily Hotez, Ariana Riccio, Danielle DeNigris, Bella Kofner and Eric Endlich

Purpose: We critically examine the idea of neurodiversity, or the uniqueness of all brains, as the foundation for the neurodiversity movement, which began as an autism…

Abstract

Purpose: We critically examine the idea of neurodiversity, or the uniqueness of all brains, as the foundation for the neurodiversity movement, which began as an autism rights movement. We explore the neurodiversity movement's potential to support cross-disability alliances that can transform cultures.

Methods/Approach: A neurodiverse team reviewed literature about the history of the neurodiversity movement and associated participatory research methodologies and drew from our experiences guiding programs led, to varying degrees, by neurodivergent people. We highlight two programs for autistic university students, one started by and for autistics and one developed in collaboration with autistic and nonautistic students. These programs are contrasted with a national self-help group started by and for stutterers that is inclusive of “neurotypicals.”

Findings: Neurodiversity-aligned practices have emerged in diverse communities. Similar benefits and challenges of alliance building within versus across neurotypes were apparent in communities that had not been in close contact. Neurodiversity provides a framework that people with diverse conditions can use to identify and work together to challenge shared forms of oppression. However, people interpret the neurodiversity movement in diverse ways. By honing in on core aspects of the neurodiversity paradigm, we can foster alliances across diverse perspectives.

Implications/ Values: Becoming aware of power imbalances and working to rectify them is essential for building effective alliances across neurotypes. Sufficient space and time are needed to create healthy alliances. Participatory approaches, and approaches solely led by neurodivergent people, can begin to address concerns about power and representation within the neurodiversity movement while shifting public understanding.

Details

Disability Alliances and Allies
Type: Book
ISBN: 978-1-83909-322-7

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Article
Publication date: 6 June 2020

Felicity Sedgewick, Jenni Leppanen and Kate Tchanturia

Mental health conditions are known to be more common amongst autistic than non-autistic people. To date, there is little work exploring gender differences in mental health…

Abstract

Purpose

Mental health conditions are known to be more common amongst autistic than non-autistic people. To date, there is little work exploring gender differences in mental health amongst autistic people and no work including non-binary/trans people. This paper aims to address this gap.

Design/methodology/approach

This was a large-scale online study, with 948 participants between 18 and 81 years old. Participants self-reported autism, anxiety, depression and eating disorder status. Analyses were run examining gender differences in the rates of these conditions in each group.

Findings

Autistic people are more likely to have anxiety and depression than non-autistic people of all genders. Autistic women and non-binary people experienced mental health issues at higher rates than men and at similar rates to each other. Autistic people were twice as likely as non-autistic people to have all eating disorders. Further, gendered patterns of eating disorders seen in the non-autistic population are also present in the autistic population.

Research limitations/implications

There are inherent issues with self-report of diagnoses online, but this study showed that using screening questionnaires is effective.

Originality/value

This is the first paper to look at gender differences in common mental health issues amongst autistic and non-autistic adults. It highlights that there are significant gendered patterns in the prevalence of mental health issues in both the autistic and non-autistic population and that these have an impact for how treatment should be approached to be effective.

Details

Advances in Autism, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 2056-3868

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Article
Publication date: 1 March 2010

Magda Mostafa

Autistic Spectrum Disorder is a developmental disorder estimated to inflict 1 in every 150 children, regardless of socio-cultural aspects, with a four to one prevalence in…

Abstract

Autistic Spectrum Disorder is a developmental disorder estimated to inflict 1 in every 150 children, regardless of socio-cultural aspects, with a four to one prevalence in males over females, (ADDM, 2007). It involves a complex sensory perceptual model, variant from that of the typical individual. It manifests itself in the form of repetitive behaviour, lack of social skills and communication delays and challenges. Being a life-long infliction, individuals with autism require a comprehensive range of specialized support services, including residential, from childhood to adulthood.

Housing services for special needs, in general, conventionally deal with issues of physical access. The provisions required for developmentally challenged individuals, such as those with autism are rarely considered.

This paper aims to provide a precedent to help guide the adaptation process in the case of group residential accommodation for autistic adults in mass housing projects. After a brief examination of the available literature in the field, a case study will be presented, illustrating design criteria developed for adapting housing for autistic use.

Details

Open House International, vol. 35 no. 1
Type: Research Article
ISSN: 0168-2601

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Article
Publication date: 4 January 2016

Sebastian Dern and Tanja Sappok

Adults on the autism spectrum experience difficulties in receiving health care, and health care providers face difficulties in offering health care to adults on the autism…

Abstract

Purpose

Adults on the autism spectrum experience difficulties in receiving health care, and health care providers face difficulties in offering health care to adults on the autism spectrum. The purpose of this paper is first, to assess the various difficulties and second, to provide strategies to overcome them.

Design/methodology/approach

In this qualitative research project, current barriers and facilitators to health care services were sampled from a collaboration of autistic self-advocates and autism professionals in Berlin, Germany. The findings were complemented by a review of practical guidelines and research about the service accessibility of patients on the autism spectrum.

Findings

A comprehensive list of barriers to health care was compiled and structured according to various aspects, such as “making appointments”, “waiting area”, “communication”, and “examination”. Strategies considering the perceptual and communicative peculiarities of autism were found to improve access to health care for autistic adults.

Practical implications

Providing access to the health care system may improve the diagnosis and treatment of mental and somatic illnesses, and thereby, the health status and quality of life for people on the autism spectrum. This recognition of the needs of adults on the autism spectrum may serve as a model for other areas in society, such as education and employment.

Originality/value

Data acquisition in this project is of special value because it resulted from collaboration between an autistic self-advocacy organization and professionals working in the field of intellectual developmental disabilities considering the experiences of autistic adults in the entire range of intellectual functioning.

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