An ableist approach to disabled students?

Dr Andrea Macleod

 

AuVision Logo

Illustration by Callum Duckworth

 

 

It’s a lot of work being a disabled student. Disability legislation in the UK entitles students who have additional needs to a range of reasonable adjustments and support whilst they are studying, but they have to work for it. First, they need to provide evidence of diagnosis to support services and discuss what they might need. Relatively straightforward, and at least they are talking to a well-informed team who want to help. However, an independent assessment might be needed for verification – regardless of what paperwork they already hold –  and this might require them to travel to an assessment centre.

Hopefully this leads to a nice clear set of recommendations which the HEI can implement. However, support within higher education tends to be provided within the categories of equipment, medical help, non-medical help, study skills or most commonly, a combination of the above. In practice, this can mean that disabled students enter university for the first time and, as well as getting to know and be known by their academic team, they have to negotiate and even co-ordinate the help that they need from a team of different people, some of whom may be outside of university systems. The onus is on the student, as an adult, to take charge of this and keep relevant people informed of changes to their circumstances.

Yet we know that many of our students, disabled or not, are barely adult when they turn up to Welcome Week. For young people with additional needs, who have faced extra challenges during their school years, they may have maturity beyond their years in some aspects of their lives, but be developmentally young in other ways. In trying to do the best for our most vulnerable students, we may be finding ourselves inadvertently disadvantaging them further, by giving them extra work and extra responsibility, when their disability already means they most likely take longer to access the same information as non-disabled students.

Frustratingly, our systems are inherently ableist, requiring that students navigate innumerable forms and bureaucratic systems to access their legal entitlements, when many will struggle to do so because of the very thing that means they need to. No wonder that non-disclosure is an issue in higher education. Many students either decide not to disclose at all, or do not follow up an initial disclosure, which means that no support is put in place for them. As academics, we are all familiar with that growing realisation that one of our students has needs we were unaware of, and now we must quickly respond to a crisis situation and hope they can stay the distance while we try to get things in place. It’s a dilemma – as is the case everywhere, there is limited funding available and HEIs need to follow protocols in order to ensure the resources go to the right people. There will always be students who opt not to disclose, either because it’s too complicated or because they want to try and stay with the crowd, rather than risking immediately being ear-marked as different.

But there is a way we can make our own contribution to the levelling of the playing field. The legislation actually calls for institutions to ‘anticipate’ need:

“The duty is an anticipatory and continuing one that you owe to disabled students generally, regardless of whether you know that a particular student is disabled or whether you currently have any disabled students. You should not wait until an individual disabled student approaches you before you consider how to meet the duty. Instead, you should plan ahead and anticipate the requirements of disabled students and the adjustments that might need to be made for them. You are not expected to anticipate the needs of every prospective student, but you are required to think about and take reasonable and proportionate steps to overcome barriers that may impede people with different kinds of disabilities.” (Equality & Human Rights Commission, 2014, p.19)

Rather than assuming that no students have different learning needs until we are told otherwise, the suggestion here is that we should assume that every class contains at least one student with different learning needs. In fact, this is close to the truth. If you teach a class, you will have taught a disabled student, whether disclosed or undisclosed, visible or invisible, diagnosed or undiagnosed. This means that assuming your class to be diverse from the start is not just about upholding a legislative imperative – it makes good practical sense. If you are already taking an inclusive approach by making simple adjustments to your teaching practice, then at least some of those struggling students will struggle less, or not at all.

In many cases, this is not an onerous task, but involves simple tweaks to our teaching practice that can make all the difference to the student experience. Take the case of autistic students, a population that is growing steadily within our institution and within HEIs nationally. Autistic students may well have distinct and idiosyncratic needs, but they also share a set of common characteristics that can be anticipated. From a recognition that most autistic students will have high anxiety and some form of communication difficulty, we can know with some assurance that if we provide key information in a range of formats (written, verbal, visual), ensure that learning paths are predictable and that formative feedback is explicit, then we will help our autistic students to access and understand the information they need – and all of this also happens to be good teaching practice, so the benefit to students goes far wider than the original focus, especially in the modern HE environment which seeks to serve and support a student body that is diverse in every way. A case in point is our own AuVision project, for which we consulted autistic students at UoB about what help made the most difference to them in their studies. Often, what they described was surprisingly simple  –  small tweaks to teaching practice like those described above, that could be provided easily and could be useful for all students.

Of course, disabled students often have some very specific and individual needs. This is not to suggest that these should be disregarded or viewed as insignificant, but they should be recognised as only one part of the whole picture. By viewing our whole student group as diverse in every way, rather than as a homogenous group with some exceptions (an out-dated approach to say the least), we recalibrate our focus.  Recognising diversity enables us to also recognise what is shared, and thus inclusive practice becomes an achievable aim, rather than a complicated ambition.

Thanks go to Vikki Anderson and Rachel Hewett for their comments on a draft.

Dr Andrea MacLeod is Programme Director for Autism (Adults) and Webautism, and her research has focused on inclusive and participatory approaches in relation to autistic adults. She is based within ACER (Autism Centre for Education and Research).

As part of this, she led the AuVision project, which included the development of an online resource for University of Birmingham staff who teach and support students on the autism spectrum (the resource is open access so available for use by other HEIs): https://auvisionsite.wordpress.com/

Recent publication:

MacLeod, A., Allan, J., Lewis, A., & Robertson, C. (2017). ‘Here I come again’: the cost of success for higher education students diagnosed with autism. International Journal of Inclusive Education, 1-15.

http://www.tandfonline.com/eprint/A2MZnkAkAPG69uZC4jZR/full

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Autistic participation: a question of ethics

R.WoodDr Rebecca Wood is a former teacher and autism education practitioner who has recently completed her PhD on the inclusion of autistic children in the curriculum and tests in mainstream primary schools. She is currently an honorary Research Fellow at the University of Birmingham, and was the project manager on the Transform Autism Education programme, a tri-national scheme funded by the European Commission. Rebecca gives presentations at national and international conferences, as well as seminars and workshops on a visiting lecturer basis. She has had articles published in The Conversation, The Times Education Supplement and Network Autism. Her co-authored article ‘Reflections on the value of autistic participation in a tri-national teacher-training project through discourses of acceptance, othering and power’ is due to be published by the British Journal of Special Education. Rebecca has been commissioned by Jessica Kingsley to write a book based on her PhD, for which there are ten child and adult autistic contributors. This is due to be published next year.

ACERblog1We hear a lot about ‘autistic participation’ these days, and this is undoubtedly a good thing. And when I set off, a few years ago, on the long, winding and sometimes rocky road of my PhD on the educational inclusion of autistic children, I was determined that autistic people were going to be involved in some way.

There are certainly many important reasons for involving autistic people in autism research. There are legal prescriptions and precedents in the form of disability legislation, and the simple fact that researchers need to ensure they are identifying the right priorities for autistic people and their families. And in my own case, it was also a methodological issue: I felt that it was only by involving a range of perspectives – school staff, autistic children, their parents and autistic adults – that I could reach some sort of understanding about the immense difficulties experienced by many autistic children in schools. And that’s assuming they haven’t been excluded, which a worrying number have.

ACER blog2The university ethical review processes, when you want to involve disabled children in particular, are pretty complex. It’s important, of course, that before researchers are released – all keen and brandishing questionnaires and interview schedules – into ‘the field’, they have thought through, and planned for, all of the various ethical issues which might crop up. Even so, it can be difficult to accept filling out long documents detailing everything about recruitment, consent, data storage and numerous other issues, when you see TV programme-makers invading schools, with little by way of evident protections, or education staff and charities cheerfully posting photos of children on social media, for example.

In my view, and although I grumbled a fair bit about having to do it at the time, the ‘gold standard’ of university ethical review is absolutely essential in research. It protects the researcher as well as other people involved, and serves as a constant reminder to always be careful about the role and feelings of others. It helps you to realise that ethics underpins every stage of the research process, and in the increasing drive to further ‘autistic participation’ in autism research, it’s all the more important to plan all of this ethically.

As far as methods are concerned – the ways in which you might gather data in your study – diversity and flexibility are key. Not only do you have to make sure that this is all planned for in your ethics review, but that any further changes, which might be necessary once you meet your participants, are reviewed by the ethics committee. So yes, it means getting the forms out again, filling them in, and drumming your fingers while you wait for them to be checked. But it has to be done. You won’t get very far with autistic participation if you just have a single, unbending way of involving autistic people. And that in itself has all sorts of implications for your research as well, such as the nature of your study and how more broadly applicable your findings might be.

In fact, for me, this is one of the biggest issues concerning autism research today in the context of increasing the participation of autistic people. What one autistic person expresses may well be different from the views of another, and even contradict them entirely. There’s also a huge problem with the lack of visibility of autistic people who are in care homes, for example, effectively hidden from view and, frankly, a million miles away from participating actively in autism research. This particularly applies to autistic people who might have limited communication skills, or who don’t use speech to express themselves.

There’s also a huge problem with the lack of visibility of autistic people who are in care homes, effectively hidden from view and, frankly, a million miles away from participating actively in autism research.

It’s important too to consider that autistic participation doesn’t just mean having autistic people in your study. It’s about reading accounts written by autistic people, and learning from autistic-led events and research. And, depending on the kind of research you are carrying out and what you want to achieve from it, it’s also about considering the most appropriate participatory models.  What it’s not is simply co-opting a few autistic people for your own immediate purposes and then skipping away when you no longer need them. If you have promised feedback, for example, you must give it, and in an accessible form.

summer 4As far as the ten children in my own study were concerned, there were a lot of hurdles involved before getting to the point of actually recruiting them as participants. You have to negotiate your way through a series of gatekeepers before you can include them, and must continue this mediation throughout the data collection process. This not only whittled down my sample size, but meant that participation was as much about those who made it through the various obstacles as anything else. Again, this places limitations on the ways in which you can interpret your findings.

But despite these issues, it is absolutely worth the effort to involve autistic children and adults in autism research, which of course, I am still learning about myself. When I was analysing my data, time and again, the views of school staff and parents would be completely reframed by those of the autistic adults and children. It meant that I ended up with a study which I feel was deeper and more evolved than those centred on ‘strategies for inclusion’ or ‘interventions’. I realised, for example, that educational inclusion is much more about understanding and acceptance of the learning styles of autistic children, rather than applying endless techniques or bolting on strategies. And for me, having a diversity of views, rather than a uniform, ‘autistic perspective’, was a factor which enriched my PhD, not detracted from it.

Autistic participation is also about reading accounts written by autistic people, and learning from autistic-led events and research.

Also, the time I spent with the ten autistic children, which was much longer than for the other participant groups, was really quite special. As you might expect, they were all very different to each other, but I thoroughly enjoyed their company, as they were generous with their time, tolerant about being video-recorded, and patient when I misunderstood them. Of course, I had to think carefully about my rapport with them, trying to ensure they were relaxed, but at the same time not leaving them feeling upset when I had to disappear out of their lives for good. In fact, this final point was really seized upon by the research ethics committee. What was I going to do to ensure the children would not be impacted negatively by my departure? they asked.

In the event, I hope I managed to strike the right balance by trying to enable a clear but positive farewell, and leaving the children with a sense that they had done a good thing in helping me. For example, on my last day in school, I gave each of them a book related to their interests. But in fact, because I then had to transcribe the video recordings, meaning that I sometimes played the same sections with the children repeatedly to capture them accurately, they remained very present with me long after my data collection had finished. I subsequently wrote up my findings, and so again, I had to delve into the words, actions and worlds of the autistic children in my study. And because of this, I continued to remain quite attached to them, and no doubt missed them a lot more than ever they missed me, if they missed me at all. Which, of course, is exactly as it should be.

With thanks to my PhD supervisors: Dr Karen Guldberg, Professor Gary Thomas and Dr Kerstin Wittemeyer.

A recording of the event ‘Learning from Autistic Perspectives’ (2017) hosted by ACER, and featuring Sarah Hendrickx, Dr Wenn Lawson and Dr Damian Milton can be found here. See also #autisticperspectives on Twitter.

Links to the ‘Autism and Ethics’ conference (2014), an autistic-led event run by Autism Rights Group Highland (ARGH), and in which Rebecca participated, are here.

Rebecca was a panel-member at ‘Participatory Autism Research’ (2018) run by Dr Laura Crane from the Centre for Research in Autism and Education (CRAE) and hosted by King’s College, London. See #Aut2Engage on Twitter.

Online event: learning from autistic perspectives

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The ACER team warmly invite you to take part in an online event on 7th November 2017, from 7 – 9 pm. If you are an autism researcher, a practitioner in the field, a family member of an autistic person, if you are autistic, or not autistic, and simply want to discuss autism for whatever reason, then this is the event for you. ACER have lined up three experienced autistic researchers and speakers in the field– Sarah Hendrickx, Wenn Lawson and Damian Milton – to share their ideas and respond to questions and comments from anyone who wants to take part. And as it is an online event, it is completely free, open to all, without the hassle, expense and problems of accessibility that travelling to conferences might bring.

How can I take part?

There are two parts to this event: you can do both, or just one of them – it’s your choice.

  1. From 3rd November 2017, you will be able to access presentations by Sarah, Wenn and Damian. You can listen to/view these at any time after they have been uploaded onto the website.
  2. On 7th November 2017, between 7 and 9pm, the three speakers will be available as an online panel. They will respond to questions put to them in advance, as well as those submitted during the time of the panel. You will be able to access this, from 7pm on 7th November, via the same website.

How do I ask questions or make comments?

There are two ways in which you can ask questions of the speakers:

  1. In advance, by email, using the following email address:

autisticperspectives@mail.com

Questions will be grouped into themes and the speakers will consider them in this way.

2. During the online discussion on 7th November, using the chat function. (Information and links on the website).

(Please note that ACER expect this to be a very popular event, and Sarah, Wenn and Damian will endeavour to respond to as many questions as possible, but cannot guarantee that they can answer all of the questions put to them.)

What are the themes of the event?

The overall theme of the event is ‘learning from autistic perspectives’. It is based on the idea that we can only understand autism by listening to and understanding the perspectives of autistic people. Each of the presenters will cover a distinct theme in their presentations which will be uploaded before the event on 7th November.

hendrickx-sarahSarah Hendrickx will discuss the importance of building on the strengths of autistic people.

WennDr Wenn Lawson will consider issues concerning autism and gender.

Damian 1Dr Damian Milton will tackle the question of how to include autistic stakeholders.

(Bios of the speakers are also available on the website).

This event is part of the ESRC Festival of Social Science 2017. Details of other events at the University of Birmingham can be found here.

Post by Becky Wood.

On World Autism Day 2017, a dispatch from Qatar

The 2nd of April is marked around the world as an occasion to raise awareness, or promote acceptance of autism. This year, a team from ACER, led by Dr Karen Guldberg (below, in blue scarf), is conducting fieldwork in Qatar as part of one of the many international projects run by the autism research team at the University of Birmingham. Here, Dr Lila Kossyvaki (front row, centre) gives a summary of the project and the ways in which the team are helping to identify issues concerning educational inclusion in Qatar.

Wise1“ACER has been commissioned by the World Innovation Summit for Education (WISE), an initiative of the Qatar Foundation, to examine current access to and quality of education provided to individuals with autism in Qatar. Dr Karen Guldberg (Principal Investigator), Dr Lila Kossyvaki (Co-investigator), Dr Elaine Ashbee and Abdullah Basulayyim have been visiting Qatar between 28th March and 4th April to conduct interviews and focus groups with a sample of key stakeholders such as professionals (teachers and therapists), parents, spiritual leaders and people working for the Ministry of Education. The visits have included, amongst others, the Renad Academy, Sidra Medical & Research Centre, the Child Developmental Centre, the Mind Institute, Qatar Assistive Technology Centre (MADA) and Awsaj Academy. A number of fascinating themes have emerged so far and the team will be moving forward with analysis of the data in the next few weeks. Wise2

Following our visit, we plan to administer a questionnaire to schools in Qatar to get a broader view of the knowledge and understanding of school professionals in relation to the needs of pupils with autism. The work will result in a report that will be presented at the WISE Biennial Summit. This will be held between 14th and 16th November 2017 in Doha. This study builds on the work ACER has led with the Transform Autism Education project and broadens our understanding of provision and practice for pupils with autism internationally.”

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Dr Elaine Ashbee (left) and Dr Lila Kossyvaki with a research participant.

Edited by Becky Wood.

Interview with Professor Liz Pellicano

lp2Professor Liz Pellicano is a developmental cognitive scientist in the Department of Psychology and Human Development at University College London and Director of the Centre for Research in Autism Education (CRAE) at UCL Institute of Education. She is committed to understanding the distinctive opportunities and challenges faced by autistic children, young people and adults and tracing their impact on everyday life: at home, at school and out-and-about in the community. Liz is also dedicated both to ensuring that the outcomes of her research are as influential as possible in education policy-making and to enhancing public understanding of autism. Her research projects include ‘Seeing the World Differently, supported by the Medical Research Council, and ‘A Future Made Together, funded by Research Autism. One of her more recent publications is ‘Sensory symptoms in autism: A blooming, buzzing confusion?’ (2013). In recognition of her outstanding work in the field of autism, Liz was awarded one of the prestigious Philip Leverhulme Prizes in 2015.  

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Members of CRAE ran a ‘Makes Sense’ stall at the Green Man festival in the Brecon Beacons in August, 2016.

  1. What led you to specialise in the field of autism?

Before I started my PhD in Perth, Western Australia, I began working with a little boy, a 4-year-old, who had only recently received a diagnosis of autism and he had very little language at the time. I only saw him once a week for one hour at a time, but during those sessions, we worked on speech and language activities to try to improve his comprehension and expression. Over those first few months, he and his family just inspired me more and more. The family had some really trying times, but seeing the love and support they gave him – and he gave back to them – was just wonderful. So that’s how I became interested in understanding more about autism. I wanted to know more about the opportunities and challenges of being autistic and the most effective ways of supporting them. At the same time as doing my PhD, I was also training to be an educational psychologist so my focus was both on theory and practice. And it all went on from there.

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A boy at one of the Brain Detectives workshops run by CRAE

2. What in your view have been the main changes and developments which have taken place in the context of autism research over the course of your career so far?

I’d like to say that we know much more about autistic perception and cognition … but I’m not entirely sure we do! When I was doing my PhD, just like many people, I was excited by Uta Frith’s notion of weak central coherence, particularly because it tried to explain some of the strengths and apparent weaknesses in autism. Even though I’ve spent a great deal of time thinking about these issues, we still don’t know for sure how autistic people perceive and interpret the world around them.

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Liz gave one of the plenary presentations at the Autism Europe Congress 2016

So I would have to say that the biggest (and best) development that I have seen is the way that many (though by no means all) people think about autism. When I started my PhD, researchers and practitioners spoke of deficits, dysfunctions, disorder, even disease. Now, people are at least a little more attuned to the fact that we are talking about people – real people – for whom the use of such terms is disparaging at worst and thoughtless at best. We have also seen a gradual shift towards greater involvement of autistic people in the decisions that affect them – whether that be in research or in the kind of education or support they receive. There is still a long way to go in this regard but it is encouraging to see that we are at the beginning of what I think of as a new era of thinking about autism.

3. In the report ‘A Future Made Together: Shaping autism research in the UK’ (2013), there is a recognition of the need to involve more autistic people in research and ‘the broader autism community’ (p. 5). How would you define the broader autism community and do you see any problems with this classification?

People will have different opinions on this issue. My own view and the one that we take in the report is that the ‘broader autism community’ should reflect all of those people who are touched by autism in some way – autistic people, their family members and friends, and those who support them. Within this broader group, there will no doubt be diverging perspectives of what it means to be autistic and how we should help autistic children, young people and adults to live fulfilling lives, and those differences will be difficult to resolve. But we refer to a ‘broader’ autism community because I feel that non-autistic people need to do what we can to stand together and support autistic people. By doing so, I really think we can transform the future of autism research and practice and ultimately the future lives of autistic people.

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4. One of the findings from A Future Made Together was that interventions were a low priority for autistic people, but of much greater importance for family members, practitioners and researchers (p. 30). What do you think the reasons are for this divergence in views?

In this study, we asked people to rate the relative importance of thirteen ‘priorities’ for research. The one that you refer to was “What are the best ways to treat the core symptoms of autism?” The wording here was quite deliberate, because that is what many current interventions aim to do, they seek to improve an individual’s ability to relate to, and communicate with, other people – in effect, they try to make people less autistic. It is not surprising, then, that autistic adults rated this issue as less of a priority compared to other issues.

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Liz talking to autism consultant, Robyn Steward

5. In the report ‘My Life at School: Understanding the experiences of children and young people with special educational needs in residential special schools’ (2014), Maggie Atkinson, then the Children’s Commissioner, stated that where ‘children cannot articulate their concerns easily, this places an even greater responsibility on adults to work hard to understand what children’s wishes and interests are.’ (p. 4). Later in the report, there is reference to ‘false types of participation’ (p. 44). What did you mean by this and how did your team deal with the issue of understanding the views of children with limited spoken communication, for example?

False types of participation largely refers to participation that is tokenistic in nature, that often is the result of tick-box exercises in which the child, young person or adult’s participation has little – or no – impact on the issue at hand. Gaining the views of children and young people with limited spoken communication is notoriously difficult. They can’t tell you what they think or feel in the usual ways. So, in this study, we used methods that would allow us to get a sense of their everyday experiences and therefore the degree of involvement in their learning.

“Gaining the views of children and young people with limited spoken communication is notoriously difficult. They can’t tell you what they think or feel in the usual ways.”

lp3For a small number of young people, we shadowed them from the moment they woke up to the time they went to bed. We carefully observed their interactions with staff and measured the extent to which they made bids for interaction and whether these bids were reciprocated by the people working with them, and whether their learning tended to be directed more by the young person or by their teacher. These methods were, of course, indirect but they did give us some clues as to the degree to which young people had some ‘say’ over everyday decisions at school and at the ‘home’ part of school.

6. The report also highlighted some complex issues in terms of the relationships children form with staff (e.g. pp. 71 – 73). What, in your view, would be an ‘ideal’ staff-child rapport in a residential special school?

A significant portion of children and young people with special educational needs living in residential special schools rarely get to see their families. For some of these children, who are ‘looked after’, the school community is their family. Young people in these schools told us how much they valued the relationships with the staff that supported them.

“These children and young people deserve to be loved and cared for and to experience stable, nurturing relationships, just like any other child. Withholding these relationships only places these children and young people at even greater risk of social and emotional problems in the future.”

But there were some carers and support workers who were anxious about these relationships. They didn’t want to give the wrong impression, that they were there “not as a friend” but to support the young people. I understand where these anxieties stem from but I feel that distancing themselves in this way is potentially very damaging to the child or young person. These children and young people deserve to be loved and cared for and to experience stable, nurturing relationships, just like any other child. Withholding these relationships only places these children and young people at even greater risk of social and emotional problems in the future.

7. Finally, how do you like to spend time away from your research?

I’m not very good at spending time away from my research! Although my little girl has taken care of that. She’s at an age where she’s into absolutely everything – it’s all new to her, and that’s just lovely to watch.lp1Interview by Becky Wood.

AuVision: led by and for autistic students

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Securing a place on a university course is a significant achievement for any student, and navigating the education system in order to reach that point is not easy. However, many students find that once they arrive at university, dealing with the complexities of student life, the level of self-organisation and discipline this requires, coping with deadlines and tackling finances present a level of difficulty they had not anticipated. These issues can not only detract from students’ enjoyment of the experience, but create anxieties and complications that might put their entire studies at risk. And what are the additional difficulties that autistic students might face?

AuVision – Enhancing the Outcomes for Autistic Students – is a project initiated by academic staff and an independent mentor from Student Support Services from the University of Birmingham. Its purpose is to find out about the experiences of autistic students at the university and to devise specific recommendations and programmes in order to ensure they are better supported, to improve the quality of their university experience and facilitate better overall outcomes for them. Importantly, the scheme is entirely led by current autistic students, employed to consult with their peers and alumni from the University of Birmingham to gain the information needed.

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The fact of being run by autistic students is central to the overall shape and format of AuVision. This not only meant that the Project Team were able to devise approaches which worked best for the various autistic participants, but they could also glean vital insights into how to develop a participatory model which can be adapted for replication with other user groups across the university. For example, the simple adjustment of providing participants with interview questions in advance was of great benefit to many. Similarly, holding a focus group online was found to be not only easier to manage from the point of view of the Project Team members, but for participants too.

AuVision is a project which is still ongoing, but initial findings suggest that while autistic students enjoy the content of lectures, the extra-curricular activities associated with university life and their increased independence – managing their workload, switching off from their studies and a lack of clarity about course requirements can be a struggle. Difficulties with self-organisation, and the stress that can result from this, can also be an issue for some. Suggestions so far about how these problems can be tackled include better staff awareness and help finding information, including knowing who to ask. The possibility of autism-only accommodation has also been discussed, although the Project Team are particularly interested in adaptations which would benefit all students, not just those who are autistic.

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Project Assistant Marianthi Kourti (above right) made the following comments:

As an autistic researcher and University of Birmingham alumna, many of the experiences described by the students felt very relatable. I interviewed two students directly and I felt I had to keep myself from interrupting excitingly to state that I have been through the same and offer solutions. After one interview we stayed on the phone with the participant sharing our experiences and stayed in touch after the interview process.

The project’s main challenge was managing everyone’s different schedules, given that all of the project assistants as well as participants were University students with many other obligations related to their course. It was also challenging to make interviews that satisfied the participants’ needs in terms of both the content, but especially the format of interviewing. It was expected that many participants would opt for interview over Skype (text), but instead many preferred to have face to face interviews, so it was necessary, as a result, to arrange for transcriptions.

Dr. Ken Searle, another Project Assistant, stated the following:

ken searleThrough being on the autistic spectrum, we found that undertaking the interviews and focus groups was challenging work, but advantageous in that the researchers could empathise with several of the concerns raised by respondents. Equally, through working together as a team, we were able to demonstrate a high level of organisation. Despite being autistic students, we were nonetheless able to pragmatically plan for varying scenarios, also accounting for students with different backgrounds and different ways to access the University of Birmingham: either as distance learners, students living at home or students currently in halls.

So, what next for AuVision? The plan is not only to develop a multi-media resource for use by staff and students alike, but to explore further applications for the wealth of data collected, such as contributing to the European project ‘autism&uni’, which aims to increase the numbers of autistic students with access to Higher Education. It is certainly hoped that the peer-to-peer model which AuVision so successfully represents can be replicated, for the benefit of many other university students.

This post was compiled by Becky Wood, using information provided by Marianthi Kourti, Dr Ken Searle and Dr Liz Ellis during the Research in Practice Seminar (RIPS) of 29th June, 2016, and from a written account provided by Dr Andrea MacLeod, Marianthi, Ken and the rest of the AuVision Project Team.

 Did you know?

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In 2011, the Autism Education Trust published a ground-breaking report – Outcomes – which focussed on educational provision and longer term outcomes for autistic individuals, and was led by Dr Kerstin Wittemeyer of ACER. It was one of the first major studies of its kind to place the perspective of autistic individuals at the centre of discussions about longer term outcomes, as well as that of education staff and parents. One of its findings, for example was that ‘a “good adult outcome” should always be considered within the context of individual needs and aspirations’ and that ‘it should not be assumed that that which is a good outcome for someone without autism is necessarily the same for someone with autism.’ Both the executive summary and the full report can be found here.

If there was a pill to cure autism…

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…would you take it?

This was the challenging and thought-provoking title of the art exhibition run by students Vicki Taylor and Robin Jackson to coincide with the recent Autism Residential Weekend (a bi-annual event for students on the non-campus based courses at the Autism Centre for Education and Research at the University of Birmingham). Based on the question – If you could take a pill to cure autism, would you take it? – autistic participants were invited to present artwork addressing this very issue in a variety of media. There were several submissions from autistic pupils at special schools or mainstream schools with an autism resource. All students attending the Residential Weekend were also given the opportunity to provide written answers to the question.

Here are just some of the many examples submitted (please note that artwork is not to scale):

Vicki 1

Vicki 2Vicki 3

 

‘Has anyone invented a pill to cure Neurotypicality?’

 ‘I would not want there to be a pill to cure autism. The world would be a bland and derelict place without neurodiversity. We are all expressions of humanity – all beautiful.

(Participants at Residential Weekend)

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By Jack, a pupil at a north London school.

 

 

Blog 2

Author, artist and autism consultant, Donna Williams

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Blog 1

Callum Duckworth

‘On really hard days I’d be tempted. But I don’t know who I’d end up as which would be scary. I don’t know if I would be taking it just for me or to make other people’s lives easier.’

‘A pill to allow others to understand autism would be better.’

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By Jacob, a pupil at a north London school

louis morel

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John

By John, a pupil in a north London school.

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Autism speaker and advocate, Zaffy Simone

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‘Two Faces’ by Jordan, GCSE Photography student in Somerset.

‘No thank you. My son is perfect the way he is. If our society had evidence enough this question would not be asked.’

‘No pill. A person with autism is still that person because they have autism. Why would you want to cure individuality?’

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Psychologist, researcher, speaker, writer and poet, Wenn Lawson

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Dan is a GCSE Photography student at a school in Somerset

Robin Jackson and Vicki Taylor, the exhibition organisers, answered some questions about the event:

  1. Why did you decide on this question about the pill?

RJ: I am tired of having to wear a happy face and having to be positive about having Asperger syndrome regardless of how I really feel. I’m tired of hearing ‘who’d want to be normal? Look at the amazing things you can do.’ I am more than an autism diagnosis, that goes for the positive things about me as well as the negative. I wanted to give people the chance to say how they really felt. I wanted people to have the chance to say ‘yes’ without it being some kind of taboo.

VT: The pill question was actually Robin’s idea but I agreed to it because it is a controversial idea which could initiate conversations about autism.

  1. Did anyone take offence at the question?

RJ: Not that I saw, although I think a few people were a little uncomfortable with it.

VT: Not that I know of. In fact, it was received really well and was talked about in great optimism at the workshop led by Zaffy Simone.

  1. Do you think it would have been the same if a non-autistic person had put this question to autistic individuals?

RJ: Yes. Non-autistic people do put this question to autistic individuals! The difference is, when a non-autistic person says it, the only acceptable answer is ‘no’. Coming from non-autistic people, the question is meant to make you look at all the positives of being on the spectrum.

VT: I think that it might not have had the same response if it came from a non-autistic person because the concept may have felt like there is a right and wrong answer. Coming from an autistic student meant that there was an option to be open within the answers.

Well done to Vicki and Robin for organising such an interesting and successful event.

Post compiled by Becky Wood.