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 people who are themselves autistic. 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.

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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):

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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.

 

 

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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.

Interview with Dr Damian Milton

Damian 1Dr Damian Milton is one of the pre-eminent thinkers and presenters in the autism field in the UK and is gaining an increasing reputation internationally. He is a member of the scientific and advisory committee of Research Autism and is  Head of Autism Knowledge and Expertise at the National Autistic Society. Damian is also a researcher for London South Bank University. He has worked on a number of projects for the Autism Education Trust, as well as autistic-led ventures such as the Theorising Autism Project. Damian holds academic qualifications in Sociology, Philosophy, Psychology and Education, and has experience in both the Further Education and Higher Education sectors. His interest in autism began when his son was diagnosed as autistic at the age of two: he was also diagnosed with Asperger’s in 2009, at the age of 36. Damian’s growing publication list includes On the Ontological Status of Autism: the ‘Double Empathy Problem’ (2012) and So what exactly are autism interventions intervening with? (2014). He is currently part of a research team looking into the potential benefits of person-centred mentoring for adults on the autism spectrum, and is an advisor on the Transforming Autism Education (TAE) project.

  1. You recently gained a PhD from the University of Birmingham. Has this changed anything for you, either practically or in terms of your mind set?
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Damian conducts a pilot study as part of his PhD at the University of Birmingham, in 2014.

The main feelings I have with finishing my doctoral thesis are those of relief and a form of contentment at having completed a project of personal (and hopefully wider) significance. Practically speaking I have more time now for paid employment. Having been a self-funded student, successfully navigating through a doctoral program has been a financial challenge. In some ways though, my ‘mind set’ has remained constant throughout my adult life in regard to some of the ideals I work toward, for instance, being a guide to the learning of those who could be said to be of a divergent disposition to normative expectations. I have learnt much from the diversity of human life and so I like to support those who may have been at some previous point outcast as ‘failures’. If anything, completing my doctoral thesis helps me to pursue this end further.

  1.  In your talk, ‘Stress and Anxiety’ at the Research Autism conference 2015 you talked about ‘flow states’. What are flow states? Do you think they are only  experienced by autistic people? Is it a measurable phenomenon?

The concept of flow states originated in the field of ‘positive psychology’ and work of Mihaly Csikszentmihalyi (1990). A flow state is said to contain a number of differing aspects working together simultaneously, these being: an intense concentration on the present moment, the merging of action and awareness, losing track of one’s sense of self, a sense of personal control over a situation or task, distorted perceptions of the passing of time, and the experience of an activity being intrinsically rewarding or ‘autotelic’.

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Damian as a child, perhaps not in a ‘flow state’.

Anyone can enter into a flow state, particularly when focusing on a task with intrinsic value to the individual, and where there is a balance between the challenge perceived in an activity and the resources one has at one’s disposal to meet such a challenge. Interestingly however, Csikszentmihalyi hypothesized that one could be said to have an ‘autotelic personality’ where particular personality traits would lead to more flow state experiences. These traits include: curiosity, persistence, and a tendency toward performing activities for their own intrinsic value. As we mentioned in an article that I wrote with Andy McDonnell (McDonnell and Milton, 2014), the repetitive behaviours often described in association with autistic people can be seen through this lens. It is interesting that you should ask whether flow can be measured. Any measurement would be indicative of flow rather than fully capturing the experience, yet this is an area that I (and colleagues) would like to look at in future.

  1. You have described what you term the ‘double empathy problem’ (2012). Do you think there has been any progress in the understanding of autism over recent years with regard to the general population?

Awareness and understanding about autism within the general population is certainly increasing, yet of course there is much work to be done in this area still. Recently the National Autistic Society (NAS) launched a campaign called ‘Too Much Information’ (TMI), where in consultations and surveys in preparation for this campaign, it was found that nearly all of the general public have heard of autism, yet very few autistic people and their families feel that their needs are well understood. Although autism seems to be attracting a great deal of media attention of late, such understanding will only improve with a decrease in stigma, and a diverse range of experiential accounts being aired. Full empathy however is an impossible goal, and I would suggest that we should all try to be humble in our interpretations of others.

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At the Autism Europe conference in Budapest (2013). Damian was the lead consultant on the development of the ASK autism modules 2012 – 2014.

 

  1. In your article ‘So what exactly are autism interventions intervening with?’ (2014), you state that ‘…care must be taken that structures are put in place that promote the autonomy of the learner and reduce their stress…’ (p. 12). Do you think that ‘interventions’ as we currently understand them can ever have a role to play in the context of autism?

The term intervention is a problematic one in itself. Although at its most simple, it describes doing something and then measuring the consequences of that action, the term is often used within a medical context. Therefore, as a term it lends itself to the discourse that autism is a medical disorder in need of normative ‘intervention’ – i.e. a deficit / remedial model. As I suggest in this article, most autism interventions have originated in behaviourist or cognitivist-functionalist paradigms of learning and psychology and are usually remedial and normative in outlook.

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At the Autism Show in 2012

In my PhD, I found that there was a tendency amongst non-autistic parents toward a preference for individualised and somewhat remedial interventions. However, the outlook of autistic people was quite different, with a strong cohort of the sample expressing views more akin to a radical / critical pedagogy and a social model of disability. It is often said to me, ‘but isn’t this what all parents do’ with regard to particular interventions – my response to that as a parent, is that I would try to utilise an eclectic array of strategies to try and help my child and any decisions would also be dependent on context. Given the tensions between views in the field, I personally see such a reflective and eclectic approach as the only sensible way forward.

 

5. You speak at many conferences and in so doing, often advocate strongly for the rights of autistic individuals. But what do you say to people who assert that, as an articulate, confident person, with high level qualifications and professional experience, you can only represent a certain subset of autistic people?

I would say that it is not me who is misrepresenting the views of others. To explain, I represent my own views, as an autistic person, a father, an academic, and a member of autistic communities and culture. I am not a politician and do not claim to represent others. As an academic I will study and represent the views of others as best I can in their own words and then will give my own interpretations and critique. As an activist, I will argue in favour or not of certain theoretical frameworks or practices in solidarity with others who may do so.

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At the AutismCon 2016. Damian was part of a panel considering ‘Awareness Versus Acceptance’.

My experiences do not represent those of my son (as an example), but nor do anyone else’s. I would say though that in my own journey as an autistic parent I have often found the insights of other autistic people invaluable, whilst this has been a less frequent experience for me in relation to those who claim expertise in the field, but who lack such a personal connection.

 

6. I know that you often use humour to reinforce the points you are making in your academic presentations. Do you have a favourite joke you would like to share with us?

The joke that springs to my mind is one from Monty Python’s Life of Brian:

Brian: Look, you’ve got it all wrong, you don’t need to follow me. You don’t need to follow anybody. You’ve got to think for yourselves. You’re all individuals.

Crowd: Yes, we’re all individuals.

Brian: You’re all different.

Crowd: Yes, we’re all different.

Voice from the crowd: I’m not.

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Damian with his son.

 

More information on Damian’s publications can be found here:

http://damianmiltonsociol.wix.com/dmilton-autism#!publications/cduw

Other references:

Csikszentmihalyi, M. (1990) Flow: The Psychology of Optimal Experience. New York: Harper and Row.

McDonnell, A. and Milton, D. (2014) Going with the flow: reconsidering ‘repetitive behaviour’ through the concept of ‘flow states’. In G. Jones and E. Hurley (Eds): Good Autism Practice: Autism, Happiness and Wellbeing, pp. 38 – 47.

Milton, D. (2014) So what exactly are autism interventions intervening with? Good Autism Practice, Vol. 15(2): 6 – 14.

Damian is on twitter: @milton_damian

Interview by Becky Wood.

Autism and Educational Inclusion in Palestine

Elaine (1)After conducting a fascinating research study on education and the inclusion of autistic children in Palestine, Elaine Ashbee has recently been awarded a PhD at the University of Birmingham. Elaine previously worked as an advisory teacher to support the educational inclusion of autistic children, and embarked on her research following her long-standing relationship with Qattan Centre for Educational Research and Development (QCERD), a progressive Palestinian charity. Here she describes how she tackled her project, the difficulties faced by autistic children on the West Bank, and offers signs of hope that their lives and those of their families are improving.

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Qalandia checkpoint between Ramallah and Jerusalem

Life in the West Bank is tough. Even though autism is an emerging field of interest in Palestine, there is a lack of opportunity to learn about it and share practice. Diagnosis is unreliable and it is likely that most autistic children are unidentified. Indeed until recently, autism was  often understood only in terms of deficits, and the diversity of the autistic population was not well understood. Autistic children and their families were vulnerable to stigma and social isolation: autism was sometimes seen as a ‘punishment from god’. While education is highly valued in Palestine and school attendance is high, my study found that very few children with autism actually went to school. Further, even though there are dedicated centres of ‘special needs’ provision within communities, these depend on insecure charitable funding.

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Teachers at the ‘Friends School’, Ramallah

However, despite numerous challenges, I came across many teachers who are resourceful, resilient, creative, deeply caring and open to new ideas. Like Hanan Al-Hroub, the Palestinan teacher who recently won the global best teacher award. There were also examples of successfully developing practice, notably in the two schools involved in the study. Moreover, despite the fact that there was no consensus about what inclusion is or how it might be accomplished, the concept of inclusion was given widespread support.

As April is the month when World Autism Awareness is marked, it is important to think about different perspectives and ideas about autism across the world. My research in the West Bank of Palestine, in a culture not my own, brought into focus the crucial nature – and even dangers – of international viewpoints in thinking about the education of autistic children. While we can reflect on and develop our practice and understandings by broadening horizons and sharing ideas between cultures, there is nevertheless a danger in thinking that practices in one part of the world can be transferred wholesale to other cultures. I believe that a diversity of perspectives can enrich thinking and as my study developed I focussed on the process of sharing knowledge and understanding between people with different perspectives. The notion of ‘interstanding’, gleaned from Julie Allan (2008), offered a dialectic process of shared understanding that goes to the heart of my study, to try to bridge the gap between autistic and non-autistic people, between educators, other professionals and families, between cultures, languages, researchers and research participants.

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From left: Rana Mustaklem (teacher); Elaine Ashbee; Salma Khalidi (teacher) and Rasha Mesleh (translator).

 

My research grew out of my relationship with QCERD and built on friendships and a sense of solidarity with Palestinian teachers and families struggling to live meaningful lives, despite the injustices of colonisation. In 2010, with new media awareness of autism in Palestine, I was asked to help develop educational approaches for autistic children. I approached ACER for backup and Dr Karen Guldberg supported me in the design and conduct of my research project. The purpose of my research was very practical: having been told that not much was known about autism in Palestine, I wanted to offer something useful for teachers and families. QCERD gave financial support for my visits to Palestine, valuable advice and employed a young woman, Rasha Mesleh, as my translator / assistant. Without this support the research would not have been possible.

 My research question seemed simple: what opportunities are there to develop inclusive educational practice and provision for autistic children in Palestine? My reading had alerted me to the importance of local responses to local needs and the dangers of imposing inappropriate ‘off the shelf’ approaches from the West. I adopted a research approach that would help me to understand Palestinian perspectives and experiences at the same time as reflecting on my own understandings, as well as sharing some of my own knowledge, I was able to learn from them. I saw myself as an ally, not a ‘foreign expert’.

 There were two strands to my research. The first was a case study with a strong dimension of action research in which I worked with teachers and practitioners in two very different educational settings, one in Ramallah and one in Jerusalem. Both were working to include autistic children and we collaborated to develop practice and knowledge by focussing on the needs of the existing pupils. The second strand of the research looked at the wider context in Palestine through a series of visits and semi-structured interviews with parents, professionals, community organisations, universities and the Ministry of Education. I also gained valuable insights by working with a large group of Inclusive Education Counsellors, sharing my own understandings of autism but hearing their perspectives.

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On the Israeli-built separation wall, Banksy captures the spirit of Palestinian resistance

My study concluded with a set of 21 recommendations. I proposed that knowledge and practice could be developed through collaborative partnerships, using a Communities of Practice approach, borrowing from lessons learnt in the development of materials and strategy for the Autism Education Trust in the UK and empowering those involved in the process. I made recommendations for improved identification of autism, for building educational capacity and for the reconceptualisation of inclusion, an issue that I discussed at length in my thesis. I proposed Palestinians as creators of knowledge, not mere recipients, for a follow-on project to build on my research using the methodology and approach that ACER developed for the Transform Autism Education international project. This, I proposed, should involve autistic people and their families and focus on areas to benefit their lives.

Reference

Allan, J., 2008. Rethinking Inclusive Education: the philosophers of difference in practice. The Netherlands: Springer.

Written by Dr Elaine Ashbee and edited by Becky Wood.