Ethical Advocacy Across the Autism Spectrum: Beyond Partial Representation

Abstract

Recent debates within the autism advocacy community have raised difficult questions about who can credibly act as a representative of a particular population and what responsibilities that role entails. We attempt to answer these questions by defending a set of evaluative criteria that can be used to assess the legitimacy of advocacy organizations and other nonelectoral representatives. With these criteria in hand, we identify a form of misrepresentation common but not unique to autism advocacy, which we refer to as partial representation. Partial representation occurs when an actor claims to represent a particular group of people but appropriately engages with only a subset of that group. After highlighting symbolic and substantive harms associated with partial representation, we propose several strategies for overcoming it.     

‘An Association for All’—Notions of the Meaning of Autistic Self‐Advocacy Politics within a Parent‐Dominated Autistic Movement

In this paper, we seek to explore the tensions between advocacy and self advocacy autistic movements in a Swedish context with a special focus on the meanings that enable the production of particular understandings of autism and the autistic subject. Drawing on articles written for the Swedish advocacy magazine Empowerment written for and by people with autism, the discourse analysis explores two competing discourses: a reformist and a radical. The reformist discourse underlines a goal of (political) representation expressed in Empowerment. It may be understood as an important part of producing a legitimate autistic political subject–positioned as a full member, with a full membership–within a parent‐dominated autistic advocacy movement. The reformist discourse can be viewed as a result of a negotiation, where full membership is conditioned on the parents' terms and granted on specific terms. These include working together (neuro‐inclusively), advocacy based on interest rather than identity/position as a specific target/member group, agreement upon a definition of autism as a disability (a deficit) a person has rather than an identity. In relation to this, an alternative legitimate autistic subject is produced through invoking the counter‐hegemonic radical discourse. Such a narrative produces the ‘Asperger’ or ‘Aspie’. Here, the ‘full membership’ refers to a sense of identification with sense of belonging to and being at home with other people with autism. It contains a certain amount of autistic solidarity within the group of adults with autism. Copyright © 2014 John Wiley & Sons, Ltd.     

Adapted to explore: Reinforcement learning in Autistic Spectrum Conditions

Recent studies have recorded a tendency of individuals with Autism Spectrum Conditions (ASC) to continually change their choices in repeated choice tasks. In the current study we examine if this finding implies that ASC individuals have a cognitive style that facilitates exploration and discovery. Six decision tasks were administered to adolescents with ASC and matched controls. Significant differences in shifting between choice options appeared in the Iowa Gambling task (Bechara, Damasio, Damasio, & Anderson, 1994). A formal cognitive modeling analysis demonstrated that for about half of the ASC participants the adaptation process did not conform to the standard reinforcement learning model. These individuals were only coarsely affected by choice-outcomes, and were more influenced by the exploratory value of choices, being attracted to previously un-explored alternatives. An examination of the five simpler decision tasks where the advantageous option was easier to determine showed no evidence of this pattern, suggesting that the shifting choice pattern is not an uncontrollable tendency independent of task outcomes. These findings suggest that ASC individuals have a unique adaptive learning style, which may be beneficial is some learning environment but maladaptive in others, particularly in social contexts.     

Regression in Autistic Spectrum Disorders

A significant proportion of children diagnosed with Autistic Spectrum Disorder experience a developmental regression characterized by a loss of previously-acquired skills. This may involve a loss of speech or social responsitivity, but often entails both. This paper critically reviews the phenomena of regression in autistic spectrum disorders, highlighting the characteristics of regression, age of onset, temporal course, and long-term outcome. Important considerations for diagnosis are discussed and multiple etiological factors currently hypothesized to underlie the phenomenon are reviewed. It is argued that regressive autistic spectrum disorders can be conceptualized on a spectrum with other regressive disorders that may share common pathophysiological features. The implications of this viewpoint are discussed.     

对附加规范的批评性回应

认知责任的公平性和社会地位的多样性是扩展批评的语境经验主义规范的两种努力。但在朗基诺看来,学术权威的平等性同时适用于共识者和异议者,多样性并非来源于规范,而是来自起初致力于批评互动的认识论观点。多样性和共享标准之间的张力不需要更多的附加规范来缓和。共同体必须扩大自身的包容性,才能使批评的话语有效。此外,科学实践中的意会内容在经受住了批评性的审查之后才会转化为知识。     

New Development in Legal Advocacy

Mental health service users are voicing the need for advocacy which is responsive to the social oppression they encounter in their lives, and within services. The Kent Law Clinic provides free, independent legal representation for people with a mental illness or a learning difficulty. This article describes the development of the Clinic and some of its work.     

Storytelling in Liberal Religious Advocacy

Previous research suggests liberal religious advocates often find it necessary to use broadly accessible technical or moral language to communicate with policymakers and public audiences, yet this conformity to secular speech norms diminishes the distinctiveness of their religious voices. Communicating through storytelling offers them one way of overcoming this dilemma. This is demonstrated by examining liberal religious advocacy during recent healthcare reform debates in the United States, using data from interviews and public communications by advocates. By embedding stories within religiopolitical performances that highlight their religious identities, advocates convey policy‐relevant information without relying on explicitly religious language that may be inaccessible or unpersuasive to diverse audiences. They also deploy storytelling strategically, bearing witness to injustices experienced firsthand, secondhand, from the pews, and from the past, depending on the context. These findings have implications for ongoing debates about religious citizens’ capacity to communicate across lines of difference in the public sphere.     

哲学的挑战与对哲学的挑战

在一次关于人权的电视访谈节目中 ,采访者突然间说道 ,就他所理解 ,我正在建立哲学与酷刑之间的关联 ,并且问我这种关联是什么。我一时语塞。瞬刻间 ,我试图猜度他何以得出如此结论。我的回应是 :哲学与酷刑之间没有任何关联 ,并且 ,当你以哲学 伦理知识看待酷刑事实时 ,你可以认识到 ,正如通常接受的那样 ,酷刑既不伤害也不“侮辱”酷刑受害者的人的尊严 ,例如在构想《禁止酷刑和其他残忍、不人道或有辱人格待遇或处罚公约》这一标题时。酷刑对施以酷刑者的人的尊严造成伤害。我们保护或伤害人的尊严 ,特别是我们自己的人的尊严 ,在于我们…     

Small Wins Matter in Advocacy Movements: Giving Voice to Patients

In this article, the various players are delineated in a story of a contested illness and patient advocacy, played out within the corridors of federal power. It is suggested that the mistreatment and negative attitudes that health care providers and others have towards those with chronic fatigue syndrome (CFS) is possibly due to the social construction of this illness as being a "Yuppie flu" disease. Institutional factors are identified that created these norms and attributions, as well as the multiple stakeholders and constituent groups invested in exerting pressure on policy makers to effect systemic change. This article also provides examples of how the field of Community Psychology, which is fundamentally committed to/based on listening to and giving voice to patients, is broadly relevant to patient activism communities. This approach focused, over time, on epidemiological studies, the name, the case definition, and ultimately the change in CFS leadership at the Centers for Disease Control and Prevention. Keys to this "small wins" approach were coalition building, use of "oppositional experts" (professionals in the scientific community who support patient advocacy goals) to challenge federal research, and taking advantage of developing events/shifts in power. Ultimately, this approach can result in significant scientific and policy gains, and changes in medical and public perception of an illness.     

Factors Related to Play Therapists' Social Justice Advocacy Attitudes

The authors used a correlational research design to examine how belief in a just world, political ideology, socioeconomic status of family of origin, and percentage of racial minority clients were related to social justice advocacy attitudes among play therapists. A multiple regression was used to analyze the data. Results indicated that belief in a just world and political ideology were related to social justice advocacy. Implications for play therapy training and future directions for research are discussed. Los autores emplearon un diseño correlacional de investigación para examinar cómo la creencia en un mundo justo, la ideología política, el estatus socioeconómico de la familia de origen y el porcentaje de clientes de minorías raciales estaban relacionados con actitudes de apoyo de la justicia social entre consejeros que usan terapia de juego. Se empleó una regresión múltiple para analizar los datos. Los resultados indicaron que la creencia en un mundo justo y la ideología política estaban relacionadas con la defensa de la justicia social. Se discuten las implicaciones para formación en terapia de juego y direcciones futuras para investigación.     

Atypical Memory Performance in an Autistic Savant

This study explored the mechanisms underlying the hypermnesia of an autistic savant (NM) through three experiments. The first two served to assess whether absence of interference was responsible for NM's exceptional list memory. The third investigated the type of cues used in recall. Results indicated absence of retroactive interference but presence of slight proactive interference in list recall of proper names. Normal interference effects were found, however, in list recall of common nouns. Exceptional performance was also demonstrated in a missingname task involving spatial and verbal recall cues. The findings suggest that the outstanding episodic memory presented by some savant persons with autism might be related to an abnormally high resistance to interference.     

Autistic phenomena in The Adventures of Pinocchio

This paper seeks to demonstrate that the protagonist of Carlo Collodi's The Adventures of Pinocchio illustrates numerous autistic phenomena such as communication difficulties, sensory and perceptual distortions and mindblindness. While Pinocchio is viewed as a literary construct with contraindications of autism, it will be argued that his autistic traits are sufficient to suggest the possibility that Collodi had a partial intuition of the syndrome 60 years before it was identified by Leo Kanner. Approaching Collodi's text in this manner is taken as an opportunity to survey and reflect upon the psychoanalytic literature on autism and to position it in relation to contemporary theories from cognitive neuroscience.     

Proper Name Hypermnesia in an Autistic Subject

The case study of an autistic “savant” subject with person names hypermnesia is presented. NM's performance in memorizing person names is compared to that of normal controls, IQ-matched controls, and one overtrained control. The data show a selective hypermnesia for both the free recall of person names and the recognition of faces. Recall of common names and of biographical informations linked to faces is unremarkable. NM's hypermnesia is restricted to list learning as low performance is observed in face-name learning tasks. A comparison of the data with that of the overtrained control indicates that training is not responsible for NM's pattern of results. These findings, when combined with previous results involving proper names, demonstrate a double dissociation between proper names and other types of semantic and referential information. However, aspects of NM's performance pattern are more compatible with a network model of proper names than with a sequential model. We propose that the contextual regularity of proper names in ecological situations can be responsible for their high memorization by NM.     

Intonation and Emotion in Autistic Spectrum Disorders

The classic picture of an autistic individual includes an impoverished ability to interpret or express emotion. The prosody of spoken language in autistic children is thought to lack emotional content. In this study, the verbal intonation of children with autism was examined and compared to that of children with Asperger Syndrome (AS) and normal controls (ctrl). Utterances elicited by repetition and by spontaneous story completion were analyzed by quantifying phonetic features (pitch, amplitude, and length) and comparing them to subjective ratings of produced emotion (happy, sad or angry). Since the most consistent phonetic correlate of these emotional targets has been demonstrated to be pitch range, speakers with autistic spectrum disorders were expected to have decreased pitch range; however in the repetition task, autistic subjects actually had a larger pitch range than the other groups. Other measures of intonation including amplitude, duration, and location of pitch peak revealed defects that are more complex than predicted. In spontaneous speech, autistic subjects performed more poorly on both phonetic targets and subjective ratings than ctrls, and AS subjects fell between autistics and normals.