So, what is a transnational meeting?

Next week marks the sixth – and final – transnational meeting of the Transform Autism Education project, hosted by the Italian team and based in Milan. But what is a transnational meeting (TM), and what does it involve?

1. More than a meeting

First of all, it is much more than ‘a meeting’, consisting instead of different activities across a number of days.

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February 2015, Birmingham. The first TM: a group exercise where team members share ideas on how to start up the project.

 

2. A time to update on progress

The TMs are often the only time team members from Greece, Italy and the UK have the opportunity to meet in person and to update each other (outside of Skype meetings and emails) on the progress of the project.

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June, 2015, Piraeus, TM2. Dr Karen Guldberg (Principal Investigator) updates the team on the progress of the project

3. An opportunity for partners to learn about each other’s work

The TAE team consists not only of representatives from three different countries, but of different partners within those countries. For example, the UK team includes researchers from the University of Birmingham, as well as members of the Autism Education Trust, the Birmingham Communication and Autism Team (CAT) and Genium. The Greek team involves the Aikaterini Laskaridis Foundation and education staff from nearby schools, while the Italian team consists of academics from the Università Cattolica del Sacro Cuore and representatives from the local branch of the Italian Ministry of Education. Therefore the TMs provide an important opportunity for the different partners to meet, share ideas, and learn about each other’s input into the project.

 

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February 2016, Italy, TM3: team members take a break after a meeting

4. A time to promote the project.

Each TM includes a ‘multiplier’ event, or a conference, to which other researchers, students and professionals are invited, in order to learn about the project and the ideas which underpin it.

 

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October 2016, Birmingham, TM4: a multiplier event including an audience of researchers, teachers, autism professionals and parents

 

5. An opportunity for training

Over the course of the different TMs, there have been many different types of training and seminars: from our partners such as the Autism Education Trust, the CAT and Genium, from academic researchers whose work interlinks with the TAE project, as well as more reflective, discussion-based formats with our autistic advisors and other autistic participants, for example.

 

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February 2017, Piraeus, TM5: Etienne and Bev Wenger-Trayner run a workshop on ‘value creation’.

And so much more…

…such as visits to local schools, planning workshops, discussions on publications, evaluation, administrative tasks and how to sustain the project in the future. Look out for posts on social media and elsewhere about TM6, especially on Thursday, 8th June 2017, for the multiplier event.

 

 

 

 

Looking back, thinking ahead

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In October 2016, the Greek, Italian and UK teams gathered in Birmingham for a week of meetings, talks and presentations. Particular thanks go to the Greek team who had several days of strikes by airport staff to contend with, but nearly all made it over for the whole week.

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Dr  Renata Cumino and Dr Roberta Sala give an update on the progress of the TAE project in Italy

An extremely important aspect of the week was to try to extend the participation and involvement of autistic people in the project, in order to try to ensure that the perspectives, views and experiences of autistic individuals are at the heart of what we do. For this reason, the majority of speakers and presenters across the week were autistic: their input was extremely valuable and greatly appreciated by the team members.

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Alex Gibbs, Gillian Loomes, Michael Barton, Felicity Sedgewick and Dr Damian Milton provided an informative & thought-provoking panel

As well as meetings and seminars, we also had a small conference – a multiplier event – where the keynote address was given by Barry Sheerman MP who outlined the important parliamentary initiatives he and other MPs are involved with in order to improve the lives of autistic people. Other speakers were Barney  Angliss, who spoke passionately about exclusionary practices and the culture of performativity, Dr Catriona Stewart enlightened the audience on how autism might be manifested in women and girls and Dr Damian Milton gave an insightful talk on issues such as stress, anxiety and exclusion, and the long term negative effects that this can have. Dr Karen Guldberg, the Principal Investigator for the project, provided information on the TAE and explained how it incorporates the programmes from the Autism Education Trust.

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Presentation by Dr Damian Milton

There were also recordings of music from composer Anya Ustaszewski, including ‘Differences’, in which she explores how some individuals might be marked out – unhelpfully – as ‘different’. In addition, there was a slide show of an art exhibition devised, organised and curated by autistic students Robin Jackson and Vikki Taylor, with the provocative title: ‘If There Was a Pill to Cure Autism, Would You Take It?’ This had been for a student training weekend run earlier in the year by ACER, and the display consisted of brilliant art work from both autistic adults and children.

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Professor Nick Hodge spoke to the TAE team about behaviour and rights

But soon, we will be packing our suitcases again and travelling to Athens for the next transnational week. As well as meetings, visits and training sessions, this trip will involve a workshop run by Etienne and Bev Wenger-Trayner on how to devise ‘value creation stories’, which are part of the ‘value creation framework’ created by Wenger-Trayner and others in 2011. This is a mechanism by which the TAE team members can reflect on how different aspects of the project and their involvement in it have created ‘value’, which in turn will also enable us to evaluate the impact of the project itself. The development of the Value Creation Framework will mark an important development in the progress of the TAE programme as it enters the final third of its course. In addition, our specialist advisor Dr Damian Milton and Project Manager Becky Wood will run a reflective group exercise on autistic participation, in an aim to extend further the ethos and ideas explored in Birmingham in October 2016.

If you want to see more information and pictures about the Multiplier event,  a storify from Twitter can be found here.

A storify about the whole week is here.

 

Who are the autism experts?

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‘People in this country have had enough of experts‘ announced Michael Gove, MP, a central supporter of the Brexit campaign and current candidate to lead the Conservative party.* As the UK undergoes a period of political and administrative change (if not turmoil) following the vote to leave the European Union, his words resonate with many, whether they support him, or the outcome of the Brexit vote, nor not.

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In fact the notion of ‘expertise’ is one of the many areas of debate and controversy in the broader autism community. Who are the experts in autism, and what is their claim to this title? Particularly from a biomedical standpoint, where – to put it simply – autism is conceived of as a set of impairments and deficits which reside within the individual – experts are considered to be those who can both detect, describe and ultimately prescribe some sort of remedy or intervention to alleviate the condition. Even from a social model perspective – whereby the emphasis is placed more upon external barriers in the creation of disablement – specially trained individuals to explain autism and provide support are considered necessary.

expert 2The autistic community has quite rightly driven forward arguments about the lack of autistic representation amongst these colonies of experts, as well as the fact that being ‘an expert by experience’ is of central importance in this context. Parents of autistic children can also feel excluded from the gathering of knowledge around their child, and that their input is considered invalid because it is purely ‘subjective’.

On the TAE project, we cannot claim to have resolved these complex matters in a way that will satisfy all those with a stake in the processes of autism education, although both in the planning of the project and through ongoing reflection we aim to show an informed awareness of the issues. Both the Greek and Italian teams have an ‘Expert Reference Group’ (ERG) which meets to review the training materials and the progress of the project. Its purpose is to try to ensure that the work of the TAE team is of a high standard and that its impact can be sustained.

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Dr Roberta Sala and Dr Paola Molteni with the Expert Reference Group in Milan.

 

One such meeting took place at the end of May in Milan, Italy. The ERG consisted of psychologist Alessandra Ballarè, neuropsychiatrist Beatrice Brugnoli, professor Lucio Cottini from the Università di Udine, educator and trainer Arnaldo Parrino, educator and teacher Simone Knowing Simon S. and parent, activist and trainer Giada Spasiano. Their view was that the TAE training materials were both innovative and positive for schools. They also discussed the UK National Standards and Competency Framework (which are being used as a model to inform the planning of the Greek and Italian training programmes), and how they need to be adapted to the Italian context.

Comments about the Italian ERG meeting included the following:

“I usually don’t like ‘working groups’ because they are usually noisy and people don’t respect the time schedule. But the Expert Reference Group in Milan was a very good experience for me: precise, quiet and with a high level of intellectual value. When I spoke, I realized that people really considered what I said. For me it is very important to find a suitable climate to express my views, and although I do not remember the names of the people I met – except Paola and Roberta (who I already knew) – I am grateful to all the people I met in Milan, and I hope to meet them again. I really want to change things, I really want to change thoughts. Thank you to all. Simon.”

“It was very interesting to participate to this meeting: the work the TAE team has done is impressive and very innovative from my point of view. Training and quality standards are key points to support schools in implementing their work with students with autism. ” Alessandra Ballarè.

On the TAE project, we hope that by consulting widely, engaging with different partners and promoting an inclusive agenda, the programme will ultimately enable mainstream primary school practitioners to be better informed and skilled in their work with autistic children. Making  a positive impact on the inclusion of those children in mainstream environments will be the ultimate test of our collective ‘expertise’.

*The comments on Michael Gove, MP are included as a topical reference and do not indicate any political affiliations of the TAE or its individual members.

Interview with Katerina Mpakopoulou

KaitiKaterina Mpakopoulou, specialist advisor for the Greek TAE team, is 21 years old and has a degree in pre-school education. However, she would like to become a writer so she can express herself through writing about her experience with autism, provide information and feel she is valuable to other people. Katerina also wants to write because it is a solitary job that will help her avoid having to talk to or interact with people. She does not consider herself an adult yet: this has been hard for her as her peers think her immature.

  1. How did you come to be involved with the TAE project, and what does your role involve?

My psychologist who is part of the Greek team suggested it to me and I believe that my role is to help people in Greece understand autism better.

  1. What is your impression of the TAE training materials that you have seen? How can they be improved?

I believe they have made a big effort to show more acceptance of autism as a difference, not a disability, and this is evident in the materials, but I have suggested how they could still be improved, in order to have a better outcome.

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Piloting of Level 1 materials with over 150 teachers in Greece. Katerina’s input has been invaluable in helping to shape the teacher training materials.

3. In the UK, there is a lot of discussion about autism and women – that they are being either not diagnosed or mis-diagnosed. Is it the same in Greece?

They are not easily diagnosed in our country, because autism is different in women. Not that I know 100% what the differences are, but I guess that women are different and receive other diagnoses, because it is considered that mainly men are autistic, and because in men the characteristics are more obvious.

4. It is difficult to generalise, but how would you describe the attitude in Greece towards autistic children in school?

I believe that teachers consider autistic children «non-normal» and they prefer to refer them to a special education class or special school because they do not know how to deal with them.

They believe that autism is a disorder and they consider that only children who are loners, have stereotypical movements, or children who may not have speech or eye contact, can be autistic. They also believe that a child with autism has learning disabilities by definition. This is how they would expect an autistic child to be, a «disabled» child who can only live with the support of his/her family.

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Artwork from one of the primary schools in Greece involved in the TAE project. Katerina feels she is able to relate well to this age-group.

I believe that none of my teachers considered me autistic because I do not look like I am disabled: I can take care of myself and can live independently (while their opinion is that autism is a disorder and that an autistic person cannot be independent). They probably thought that I was shy, I have always – ever since I was a child – been considered shy.

You may consider that I am a high functioning autistic person – as someone in my university had told me – but that is not true. There is no such thing as high or low functioning: it is a myth.

Why do we think that a person who has no speech is incapable of communication, or cannot be independent, or advocate for his/her own needs? It all depends on how he/she will be supported (by his/her family) to develop and if the parents accept autism or not. I believe that if parents consider their child disabled, then the child will also believe that of him/herself.

Imagine that when you were young, your parents considered you abnormal and cried because you were the way you were and looked sad whenever others spoke about you?

Or they also believed that you would never be able to live independently and that you would always need someone to take care of you? Would you have been persuaded that you were abnormal? Or wouldn’t you feel angry with your parents and would you reject them?

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Playground at one of the participating schools: the squares were introduced following the TAE training in order to provide a more visually-structured playtime.

Perhaps this is how our society sees autism and an autistic child without speech would not be accepted, but then, this is society’s problem: it’s nothing to do with autism per se. That is why parents have to try hard and inform the world  about autism as something that has to do with difference, not disorder or disability.

I do not mean that parents do not love their children: they do love them, but it is wrong to get upset about what will happen to their children once they die, while they do not get upset with the wrong perceptions of our society that considers autism a problem.

5. What do you hope will be the eventual outcome of the TAE project, and of your involvement in it?

I hope it will accurately and correctly inform people about autism and it will help towards a better understanding of autism.

Many thanks for agreeing to do this interview, Kaiti.

Thanks also to Katerina Laskaridou, the Greek team lead, for her help with preparing this interview.

After the interview, Kaiti added the following comment:

‘Katerina Mpakopoulou has been helped in viewing autism as a difference and not a disability by Perla Messina, autistic herself and founder of the Greek Association of autistic Adults. The Association itself no longer functions, but Perla, who was the first autistic adult to inform the public about autism, still continues her work with parents and teachers till this day.’

 

Simone Knowing Simon S.

SimoneSimone Knowing Simon S. is the Specialist Adviser for the Italian team of the TAE project. He describes himself as “a 34 year old citizen of the world” and has been working in schools for 17 years, specialising in education and training, communication and learning methods. Simon holds two degrees in the Sciences and Technologies of Information and Communication from the University of Milan and he is studying for his third degree in Human and Social Sciences (Psychology). Simon is very involved in autism research and is always seeking new solutions on how to learn, understand and communicate about it.

 

  1. Tell us a little more about your work.

Principally, I’m a teacher and an educator: I work with some children with specific learning disabilities, especially dyslexia, and autism. I try to find good practice and ideas to develop teaching solutions suitable for all children who are entrusted to me. I’m also a consultant for some companies in problem solving, automatic communication, communication design and musical production in which my sensitive hearing is much appreciated.

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On World Autism Acceptance Day 2016, Simon gave a presentation called ‘Not Once-A-Year People’. To his right are seated TAE Italian team members Dr Paola Molteni and Dr Roberta Sala.

 

  1. What are your memories of school when you were between the ages of five and ten?

I have a really powerful long-term memory, so I remember a lot of things from my childhood. From primary school, I remember everything about the places, colours, smells and events. I recollect very little instead of the children who were with me, and even then only for some unpleasant episodes or details. For example, I remember the 27 Gig Tiger Electronic Games of A., the glitter pencils of M., the collapsible plastic lenses of P., or the label with my name on all common items such as bath soap or toothpaste, and things like that. In my mind, I can go back in time whenever I want and hear the sounds, the smells, the sensations of each event that I remember. This includes recreation, holidays, classroom laboratories and all the end of year school performances, which I recall with great precision: I remember all the music, lights, colours and the materials and positions on stage of the scenery etc.

‘I have a really powerful long-term memory (…). From primary school, I remember everything about the places, colours, smells and events.’

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‘Supermarket’ by Simon, reflects the sensory onslaught that can be experienced by autistic individuals.

 

3. What, in your opinion, do young children need if they are to thrive in mainstream schools?

Children need three things to thrive in mainstream schools: kindness, respect (from other children but principally from adults) and teachers who are not afraid to learn new things. Above all, perhaps the most important things is that teachers are not frightened when they hear the word “autism.” They must not be afraid of this word.

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Simon’s book ‘Paolo’ is written from the point of view of a 6 year-old autistic boy.

4. What do you hope to bring to the TAE project?

I’m very honoured to take part in the TAE project, and I wish to bring my perspective in the hope that this will add to the understanding of the Autism spectrum. I have dedicated my entire life to education and teaching, and I have seen and I have experienced many situations of being on the outside. Very often, I couldn’t do anything (or very little): when you’re a Mac in a Windows’ world, you end up alone, because between you and other people, it creates a wall of incomprehension that, combined with rigidity of thought, does not allow you to communicate your thoughts functionally. But this can’t be an excuse: any person can improve him or herself (perhaps not necessarily with the same tools as everyone else), and the purpose of people is to improve the future for those who come after them (as Darwin says…). I have tried to improve myself and I want to change things and bring my small contribution to building new pieces of society.

‘…when you’re a Mac in a Windows’ world, you end up alone, because between you and other people, it creates a wall of incomprehension…’

When some people are excluded, they are very aware of it, and that feeling is, I think, one of the worst feelings that you can experience. I want to grow old and to think that in my life I had been useful for someone: Today’s children? My future children? The future children of other people? It makes no difference.

 Thank you for the interview Simon and we look forward to your work with the TAE team in the future.

It will be a great honour. Thank you too. Best regards from Italy, and smiles. Simon.

Simon’s book ‘Paolo’ is also available in French.

European Connections

As World Autism Acceptance Month draws to an end, it can be useful to think about what we might have learned – if anything – from the whole exercise. This year, the media attention paid to WAAD (World Autism Acceptance/Awareness Day) seemed greater than ever, but it can be difficult to measure what difference this might have made to the lives of autistic individuals and their families. Not only this, but the actual nature of what we are increasing awareness of, or asking others to accept, is not always clear, a point explored in this piece in Perspectives magazine, by the TAE Project Manager, Becky Wood.

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Dr Paola Molteni talks about the TAE on WAAD, in Milan, Italy

An important aspect of WAAD which is often lost is that autism is not limited by national boundaries, and that to understand autistic people, we need to think beyond the cultural references of our own countries. In a small, but we hope significant way, we hope that by working across three countries of Greece, Italy and the UK, we can learn from each other in order to improve the practice of teachers in schools, and so further the inclusion of autistic children of primary school age.

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Ryan Bradley

 

Ryan Bradley, who works on the TAE and is leading the development of the project website (which will be the source of teacher resources), expressed the issue in the following way:

‘The project has developed a methodology for collaborative working that is significant in attempting to establish a unified language and understanding of autism and inclusion across three European countries.’

As the project moves forward and the training materials are further developed and refined for Greece and Italy, we know that they can only be enriched by collaboration across borders. While it can be difficult to quantify the impact and achievements of WAAD, we hope that by informing and empowering teachers, autistic school children will have better educational experiences and outcomes.

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Katerina Laskaridou, pictured here with Dr Damian Milton, talks about the TAE during a WAAD event which included many autistic adolescents and their families

World Autism Acceptance Day 2016

World Autism Acceptance Day (WAAD), also known as World Autism Awareness Day, can provide not only a useful mechanism through which to reconsider our priorities in the field of autism education, but motivate us to highlight aspects of our work which we hope are helping to improve the educational opportunities and longer term outcomes for autistic children.

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A primary school classroom in Greece

 

In Italy, members of the TAE team are participating in a two-day event on the 2nd and 3rd of April entitled ‘Autism: Strategies for Well-Being’. Consisting of talks, workshops and culminating in an autism-friendly film-screening, team members will also emphasise the ways in which the TAE project has sharpened the understanding and skills of different practitioners. One of the speakers at the event is ‘Simone Knowing Simon S.’, a well-known autistic advocate, trainer and consultant who is also a specialist advisor to the Italian TAE team. He will talk about how teachers can facilitate the inclusion of autistic children in the classroom.

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Participants at the Italian piloting sessions of the TAE training materials

 

In Greece, some of the TAE team are marking WAAD a little later in the month on 10th April at the Café Myrtillo, the first café in Greece to employ only autistic adults and those with other special educational needs and disabilities. The main speaker at this event will be Dr Damian Milton, who plays an important advisory role on the TAE project. His talk is entitled: ‘Creating autism-friendly societies’ and will be followed by a presentation on the TAE project itself by the Greek team lead, Katerina Laskaridou, leading to an open discussion. The event organisers have made this event open to the public, but have purposefully invited autistic adults and teenagers in order to emphasise the vital nature of their participation and input.

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Poster advertising the event at the café Myrtillo