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shapingautismresearchuk · 8 years ago

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Autistic wellbeing

Thanks to everyone who was involved in our recent seminar on Autistic Wellbeing, the fifth seminar in our ESRC Shaping Autism Research series. This particular seminar focused on working towards a shared definition of autistic wellbeing (which, as some attendees quickly pointed out, might have been overly ambitious!) and determining how best to measure autistic wellbeing in our research and embed this understanding in our practice.

Susy Ridout and Damian Milton have put together an excellent summary of the two days below.

Following on from the success of the previous seminar, seminar five was attended by around 50 individuals, and over the two days, there was a collection of presentations and workshops by autistic, neurodivergent and non-autistic speakers.

Day One: Towards a shared understanding of autistic wellbeing

The first day began with an orientation by Liz Pellicano to identify the goals of the seminar, namely:

1. to identify collectively a shared definition of autistic wellbeing; and

2. to determine how autistic wellbeing could best be measured in our research and to embed this understanding in our practice.

The two days would then lead into a set of outputs accompanied by examples of good practice.

As with previous seminars, the theme originated from key findings and recommendations emerging from A Future Made Together. These emphasised the importance of autistic involvement at all stages of the research process in order to address relevant priority areas.

The scene was then set by Damian Milton (member of the scientific and advisory committee for Research Autism, research at London Southbank University and Head of Autism Knowledge and Expertise (Adults and Community) at the NAS), with an overview of how notions of wellbeing are constructed in the accounts of autistic people. Damian referred us to his research with narratives from Asperger United, pointing to similarities and differences regarding wellbeing and life experiences. Damian highlighted issues such as social isolation and underemployment, yet also suggested how positive social relationships could aid feelings of social belonging and wellbeing.

Andy McDonnell (Clinical Psychologist and Director of Studio 3 in Warwickshire), Robert Chapman (PhD research student at University of Essex and also teaching Philosophy at Kings College London), Steven Kapp (Research Fellow in Sociology at the University of Exeter), and Sarah Cassidy (the Atypical Development research Team lead in the Centre for Research in Psychology Behaviour and Achievement at the University of Coventry) then each gave a talk leading into a panel discussion around “Quality of life and wellbeing – what do we know about autistic wellbeing?” Coming from a background looking at ‘challenging behaviour’, crisis behaviour and anger management, Andy’s work currently utilises the PERMA model of wellbeing (Seligman, 2011). This provides a focus on Positive emotions, Engagement (flow), Relationships/social connections, Meaning and purpose and Accomplishment. This shifts the focus from what is problematic to what is going well or what works and emphasises emotions, their interpretation and the contextualisation of these. In addition, Andy discussed how a perception of control or self-control leads to increased wellbeing and is a human rights issue. Robert Chapman provided a different perspective, introducing the idea of ethics and flourishing from the inside. Talking of norms and social structures he questioned the spectrum as acknowledgment of functioning or barriers and linked this to debate around intersectionality. Intersectionality relates to our different identities, particularly, though not exclusively, to those relating to matters such as gender, sexual orientation, disability, age and faith group. Steven Kapp then looked at neurodiversity and quality of life experienced by autistics in relation to a range of support, such as social support and subjective wellbeing; parental support in relation to language acquisition and autism acceptance; school support and educational and social (peer) inclusion; and finally systemic support in adulthood. Finally, Sarah Cassidy gave a thought-provoking presentation on the figures in relation to depression and suicide risk among autistics in the UK. She then highlighted a Swedish study into deaths caused by suicide and noted, in particular, the findings showing no gender difference. In addition, studies tend to be more quantitative. There is, however, a high incidence, as well as a gender difference in non-suicidal self-injury with an even greater prevalence among women. In addition, many autistics report the feeling of being a burden and there is a need for more research overall in this area as mental health and suicidality among autistics is poorly understood.

Session three was kicked off by Mark Neary (father of a young autistic adult son, advocate, counsellor and blogger) and Sara Ryan (senior researcher at Nuffield Department of Primary Care and Social Science at the University of Oxford and blogger around the death of her son, Connor Sparrowhawk, in a residential care unit). These inspirational speakers led a fascinating panel discussion speaking on their experiences of the care system and “Social support (or lack thereof) for families and autistic adults”. Mark’s never-ending struggles as a carer fighting the bureaucracy to obtain and sustain a personal budget, on one hand, found him losing out on the other. As a result, he is unwittingly forced to take on the role of administrator to process the tax returns of those that look after his son and provide him with the independent lifestyle that is his right. Consequently, he has discovered the diversity of Council policies regarding personal budgets, with threats if he fails to provide even one small receipt. The paradox is that the autistic individual receives a good service, but the parent does not. Sarah’s experience was entirely different as she talked us through her painful journey where the residential unit that was meant to care for and keep her son safe, failed to do so; leaving him to drown in a bath following a seizure. Sarah views this as her son being “treated as and killed as a disposable human being” and there is a lack of interaction between the carer and the autistic individual that society chooses not to notice. Her son’s death highlights a glaring need for training among staff and the requirement to use more respectful language in commissioning reports. Furthermore, many parents like Sarah experience being demonised due to cultural differences or the fact that they challenge poor services. As a result, Sarah recommends continued challenges to demystify language and processes.

This discussion led to a workshop activity facilitated by Susy Ridout (mentor and academic support worker with autistic students in HE) and Alice Blakeley (children’s nurse currently working on a cardiac unit). The session explored “Barriers and processes impacting wellbeing”, and as a method previously introduced at Seminar 4 by Susy, was interesting in that it brought some of the same and some different people together again to explore ideas using a method that may or may not have been accessible for them. As such it was an excellent demonstration as to why communication preferences require attention when addressing wellbeing. Each group fed back about their work, explaining how the themes were linked as this was very much a work in progress. The artwork and themes raised can be seen here.

Finally, Day One ended with a keynote talk by Roy Richard Grinker. The presentation began by highlighting that in the DSM-5 distress or illness takes the form of some abnormality as reflected by the deficit model. However, autism is rarely talked about in the context of wider categories such as the DSM, and Grinker considers that understanding processes through which autism has emerged and changed over time can be argued to be fetishising. Initially, autism was presented in relation to psychiatry, and then increasingly as regards first-person accounts. He noted, however, that there were no cluster groupings in the past, such as in Ancient Greece. In addition, PTSD only occurs in relation to accounts of war, notably Vietnam and the Persian Gulf War of 1990. Autism has trodden a similar path to that of homosexuality in relation to its presence in the DSM, and Grinker talked about the latter’s recognition as a social construct. Those who identified as autistic/homosexual prior to official recognition were presumably not initially deemed to be a problem before Westernised social constructions were imposed. Grinker then led listeners down a trail where we were introduced to his research with Mandell on the puzzle piece and the notion that a narrative is only useful if it is presented with someone’s experience. As an anthropologist, Grinker questions the use of the DSM.

Day Two: Embedding autistic wellbeing into our research and practice

Damian Milton began the day with a brief summary of Day One and aims for Day Two.

In session 5, Martijn Dekker (autistic father, serving on the board of Autscape and initiator of an international support network for autistics) gave a presentation on Neurodiversity. Martijn pointed to the need for researchers and society more widely to consider the role of politics and belief regarding the facts. Using examples of his own experiences of catatonia and inertia, which result in him being able often only to work productively at the last minute, Martijn then drew us through his travels initiating and leading an autistic online community network (InLv) that was created in the 1990s; this latter provided mutual emotional and practical support to autistics. Martijn highlighted how models are used to simplify reality, for example, the social model of disability to explain catatonia. Finally, there is a need to work towards acceptance and accommodation, which vary according to our individual requirements.

A panel discussion on “How we should measure autistic wellbeing” was then led by presentations from: Helen McConachie (researcher on interventions and currently focusing on therapy approaches helping parents with young autistic children with social communication and also those experiencing high anxiety); Hilde Geurts (researcher on cognition and ADHD and autism across the lifespan, and with a special interest in autism and aging works at the Department of Psychology at the University of Amsterdam and the Dr Leo Kannerhuis clinic); and Alastair Clarkson (Researcher in Residence at Scottish Autism and a PhD candidate in education at the University of Aberdeen). Helen raised the issue as to why we should measure ‘Quality of Life’, and linked this to the development of public policy and public services. As a definition, the WHOQoL (1998) covers the areas of physical, psychological, social and environmental wellbeing. In her study around wellbeing using the Warwick Edinburgh Wellbeing Scale, Helen’s findings showed that 5% lacked the capacity to respond, and so required someone else to do so. In addition, 14% had assistance to respond. The domains covered related to and inclusion autonomy, discrimination. Hilde’s work related to subjective wellbeing; how we study it; and its relation to aging. This type of wellbeing can be both a positive and a negative aspect of life according to our interaction with the internal and external environment. In the 19-83 age range, autistics have a lower QoL than non-autistics due to a number of factors including lack of employment and social isolation. Interestingly, there was no direct link found in her work between QoL and the treatments and interventions that a person had received. Finally, in this panel, Alastair discussed the Support Experience Survey and the need to develop a meaningful survey process for autistics. In his survey, he was looking for feedback for service provision and had seven practice principles. In addition, the survey was both standardised and individualised according to communication preferences, leading to two versions of the survey where some chose to respond using pictures or visual boards to facilitate survey dialogues.

Ben Connors then gave a stimulating talk about his unexpected work as a personal assistant to an autistic young man (Gabriel). Through the building up of a relationship with him, Ben developed comics as a tool for communication and enjoyment. Ben then led a group activity in which attendees were asked to draw comic strips to illustrate what autistic wellbeing means to them and some of the barriers that autistic people face with regard to their wellbeing. Attendees were given guidance in the form of a storyboard pig, A Piggie Plot Planner. The pig had a beginning section, a middle section and an end, just as any narrative. The storyboards were then discussed and shared with the whole group. You can see the wonderful outputs here.

“How can we prioritise autistic wellbeing in our research, service delivery and policy discussions?” was the title for the final panel discussion with presentations by: Monique Craine (advocate, blogger and campaigner on Neurodivergent issues and the inspiration behind the Labour Party Autism/Neurodiversity manifesto); Ginny Russell (Senior Research Fellow at the University of Exeter Medical School); Ian Dale (NAS Head of Monitoring, Research and Evaluation); and Bob Lowndes (Director of the Autism Education Trust). Monique’s avid blogging has resulted in her working with John McDonnell MP and neurodivergent individuals to provide a working definition of autism without using medical terms, and her presentation highlighted this impact through the development of a ‘Neurodiversity Manifesto’. Ginny talked about diagnosis in the context of autism and neurodiversity. As someone working with Patient and Public Involvement (PPI) and grant opportunities, she raised the critical question as to whether ‘patients’ should assess researchers’ funding applications and examined this issue specifically within the context of the European project, EU Aims. Following this, Ian Dale challenged the nature of the Personal Independent Payment (PIP) forms, stating that we need to think beyond the individual. He argues that that the person-centered approach is a formula ‘made-up on the spot’ and that researchers need to be focusing on the potential of wellbeing as a diagnostic tool. Ian argues for change within the delivery of services and policy discussions. Bob Lowndes rounded up this session up stating that researchers need to embed autistic wellbeing into our research and practice, especially that impacting on education and social care. Raising the issue of QoL, Bob spoke of eight domains, namely emotional, interpersonal, material, personal, physical, self-determination, social inclusion and rights and where the routes to these outcomes are distinct. Ultimately, Bob suggested we should be talking about ‘support’ as opposed to ‘help’.

The final activity of the day was a whole group discussion focusing on “What have we learnt and how can we apply it to our own research and practice?” in which people emphasised strongly the importance of autistic involvement in the design and delivery of research and practice – and indeed the leading of seminars just like this one.

Overall, the talks and discussions were incredibly thought-provoking. Although we did not identify a shared definition of autistic wellbeing (which might have been too ambitious an aim!), we did … explore a wide array of topics arising under this theme, which was facilitated by the combination of visual workshops, presentations, and discussions presented by autistic, neurodivergent and non-autistic individuals. As the final part of this ESRC seminar series, the successes pointed towards a more positive future for working together to reshape autism research.

Susy Ridout and Damian Milton

#autism #autistic #wellbeing #autisticwellbeing #london #seminar #seminar5 #shapeARUK #shapingautismresearch

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amberh-wgstproject-blog · 7 years ago

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Gender and Sexuality Portfolio Post Two: Connection to Foundational Course Concepts

Amber Hanke

Gender & Sexuality

Nodulman

20 September 2018

Women in Prison Post Two

Within our class readings of Gender Stories and Threshold Concepts in Women’s Studies, we learned the important terms and concepts of the social construction of gender, agency, privilege, oppression, and intersexuality.These terms allow us to analyze and interpret various events within our everyday life throughout society. Regarding my topic, these terms help me explain why women in prison experience certain events the way they do as well as allowing me to study further in depth into my topic of the inequalities that women face being incarcerated within our society. Using these terms to explain women in prison and our prison system over all in general, has allowed me to see how much injustice there is towards people trapped in prison system and just how problematic our system is.

There are various social constructions that we have read and discussed in class. One construct that society has created within our society is gender. Gender Stories by Sonja K. Foss, Mary E. Domencio, and Karen A. Foss, describes how sex is biological while gender is your personal traits and behaviors that develop and change throughout various social interaction. Along with gender comes the gender binary creation within our social order, the gender binary being man and woman. The construction of gender and gender binary by society leads to many problematic issues such as stereotypes, roles, and certain norms that society believes someone should do. Within the prison system we can see that people are separated based on their sex. In regards to someone who is transgender, this can be really damaging and problematic for them.

For example, if someone was transgender and they went to prison, they would be put based on what sex they were assigned at birth. This is very problematic and damaging to a person when they are not housed by gender identity. It is problematic due to the fact that their identity is being ignored and they are being forced to go to an area that they do not identify with. A repercussion that can arise upon a transgender individual due to being in an area where they do not identify with is harassment from other inmates. According to Lambda Legal, a legal organization specializing in LGBTQ+ rights, “This policy makes transgender people more vulnerable to harassment or attack by staff or fellow incarcerated people: A California study found that transgender people were 13 times more likely to be sexually assaulted than non-transgender people in prison” (“Transgender Incarcerated People in Crisis”, 2018). In addition to being more likely to be assaulted, prison system officials will frequently block an incarcerated transgender person to their transition-related health care. They may block hormones or various treatment, even if it is prescribed by a doctor (“Transgender Incarcerated People in Crisis”, 2018). This example of what transgender individuals go through within our current prison structure shows how problematic it is, especially when people are being rejected the health care that they deserve and need. People are being dehumanized and put under extremely control by cruel individuals. They cannot control their life or make any decisions that they would like to make in their own life. All of these are being denied to them.

Agency are our own choices that we make throughout our life every single day. Gender Stories describes agency as the actions you take throughout your life and these decisions can impact your whole world whether it little or big or whether it would impact just you or others. However, some may have an easier time making decisions than others. Women in prison have limited amount of agency and do not have as much agency as women who are not incarcerated would have. There are barriers that keep incarcerated women from making decisions whether is be the rules in the current facility that they are in or the rules that the officers enforce. Women not being able to make certain decisions is hurtful and leaving them with little power in situations. Women need to be able to have more agency when it comes to their life in prison, luckily at least one prison, Bedford Hills, is allowing women to have more agency in their lives regarding their newly born children.

In the documentary, Babies Behind Bars, describes one prison that has opened up a separate wing that is specifically for mothers and their newborn baby. Usually what happens when a pregnant inmate gives birth, the baby is taken away “…48 to 72 is taken away and either given to a family member or sent to foster care” (Chuck, 2018). The ripping away of the child from the mother can potentially be very traumatic to the mother. In order to fight this traumatic experience, Bedford Hills prison has created a separate wing for mothers to keep and stay with their child ranging from 12 months to 18 months. The women within this program are using agency to decide what they do with their baby on a daily basis whether is be time to feed them, go to the play room, going to night classes, etc. These women are bettering themselves throughout the program and improving the future of their life when they get released. Another way that the women in the program use agency is exchanging parenting tips with other mothers in the program. Agency was also described within Gender Stories as influencing other peers around you, therefore the women are using agency when they are exchanging parenting tips such as how to help babies get to sleep at night. Programs such as these that allow pregnant women to keep their child with them, are extremely beneficial to the mother. This helps improve the mother physically, mentally, and emotionally. As well as cause her to continue to push herself to improve her life for the better until they get released.

Within class we have discussed various types of privilege like heterosexual privilege, white privilege, male privilege, cisgender privilege, etc. Privileges are automatically given to some people in our society just because of how someone may look or how they are. Our society upholds privileges towards certain people and oppresses others. Threshold Concepts in Women’s and Gender Studies gives us an example of the mythical norm that contains all the privileges within our society which happens to be a “…white, straight, thin, young, Christian, financially stable, male” (Launius and Hassel, 2015). It is important to recognize privileges so that we may use that privilege to help people who do not have the same privileges as us, which can help fight towards equality. Especially fight towards equality for women who are incarcerated.

Some males in prison have more privileges than females do in prison. Within the article, “Nothing Less Than the Dignity of Man”: Women Prisoners, Reproductive Health, and Unequal Access to Justice Under the Eighth Amendment, describes the story of how a female inmate named Michelle Lea Martinez was denied medical care even though she was vaginally bleeding. In order to get seen by the doctor, she had to slam her thumb in the door. She had to do this because “…Martinez knew instinctively what was required to receive adequate healthcare as a female prisoner—an injury that looked like one a man could sustain” (Marquis 2018). The article later goes on to discuss than men’s health care in the prison system has overshadowed women’s health care within the system. Leaving women’s health care to be extremely lacking. This example shows male privilege within our society. Women’s health care is very lacking compared to men, especially when it comes to prison. The fact that a women had to go through and give her self an injury that a man would be able to get, shows how much male privilege there is. We need to acknowledge the fact that women’s health care is extremely lacking and needs to be improved drastically. Everyone needs to be able to get the health care they deserve.

Anyone who does not fit society’s mythical norm experiences oppression in some shape or form. Oppression leads to some many inequalities and people who are oppressed experience various inequalities on a daily basis whether it be through an individual or through a whole entire institution within society. Threshold Concepts in Women and Gender Studies describes how oppression is directed at specific groups of people through the use of ideologies and social institutions. It is important to see oppression within our society so that we may help try and change it so that people will no longer be oppressed. In this project’s case, we can see how black women are heavily oppressed in our society and within our prison and “justice” system.

According to the NAACP, “African Americans are incarcerated at more than 5 times the rate of whites…The imprisonment rate for African American women is twice that of white women” (Criminal Justice Fact Sheet, 2015). This statistics show how our society targets African Americans are targeted by our society. They are being oppressed from society and being targeted more often. Prisons more so serve as a controlling people and the practices that it enforces onto its people currently in it is really damaging mentally, emotionally, and physically. A black women is pretty much the opposite of the mythical norm and facing a lot of oppression from others and society’s institutions, especially from prisons. The documentary 13th, shows how our prison systems came to be in our country. It shows how our country targets African Americans and how prisoners are exploited and used for work and to do various jobs that they make to do. These jobs can be damaging towards the person, but some people do not care about them as much because they are prisoners. Which is extremely wrong. They should care about every person and focus on improving their life and not making it worse or forcing them to do hard labored work that exploits them.

Intersectionality is all about how multiple factors play into effect when it comes to a person’s life. Threshold Concepts in Women’s and Gender Studies explains intersectionality as how various forms of oppression and identity intermix with each other determining someone’s personal experience within society and their access to institutions and power. Using intersectional feminism is very important regarding this, due to the fact that two women of different races are not going to experience the same thing. Women with different identities will experience different things. Therefore showing how it is important to be using an intersectional feminist view.

Thinking back to two previous examples, transgender women and women of color, we can see how important a intersectional feminist view is. A transgender women of color will experience different events than other women. For one, transgender women are not able to get the proper treatment that they require. They are sometimes blocked from getting their hormones. In addition to this, as stated previously, they are also most likely to be assigned to the group to which they were assigned at birth. An intersectional view is important in this situation because it shows the various over lapping of different oppression and identities at work here regarding gender, race, etc. As well as showing how everyone has their own unique experiences.

The terms that we have discussed in class: social construction of gender, agency, privilege, oppression, and intersexuality all are very important to understand so that we may evaluate our daily lives and society. These words all lead us to see how people, more specifically women in prison, are affected due to various oppressions and inequalities within our society. It is important to understand that each women’s experience is different and that they all deserve the health care that they need. Transgender women should not be stopped from treatments and they should be assigned to the women section of the prison. They should not get assigned to the men’s section. Being in the wrong section is really harmfully to the person. It is ignoring their identity and who they are as a person. It is also important to see the various privileges and oppressions. So, we may keep fighting towards better prison systems and equality.

Work Cited (Was APA but formatting got messed up in pasting)

DuVernay, A. (Director). (2016, October 7). 13th [Video file].

Richardson, A. (Director). (2011, February 24). Babies Behind Bars [Video file].

Chuck, E. (2018, August 4). Prison nurseries give incarcerated mothers a chance to raise their babies - behind bars. Retrieved from https://www.nbcnews.com/news/us-news/prison-nurseries-give-incarcerated-mothers-chance-raise-their-babies-behind-n894171

N. (n.d.). Criminal Justice Fact Sheet. Retrieved from https://www.naacp.org/criminal-justice-fact-sheet/

Foss, S. K., Foss, K. A., & Domenico, M. E. (2013). Gender stories: Negotiating Identity in a binary world. Long Grove, IL: Waveland Press.

Launius, C., & Hassel, H. (2015). Threshold concepts in womens and gender studies: Ways of seeing, thinking, and knowing. New York, NY: Routledge.

Marquis, E. (2018). “Nothing Less Than the Dignity of Man”: Women Prisoners, Reproductive Health, and Unequal Access to Justice Under the Eighth Amendment. 203-230. Retrieved September 5, 2018.

Transgender Incarcerated People in Crisis. (n.d.). Retrieved from https://www.lambdalegal.org/know-your-rights/article/trans-incarcerated-people

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