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.’

 

Visiting schools

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Visiting local schools in the host country has formed an important part of the transnational meetings which take place every six months on the Transforming Autism Education (TAE) project. Most of the partners involved with the TAE have direct experience working with autistic children, and  so going to  different educational environments and talking to staff can provide valuable insights and ideas which feed into the planning of the teacher training materials.

This week, the UK is marking Schools Awareness Week. This consciousness-raising campaign is run by the National Autistic Society and hopes to promote better understanding in mainstream schools of how to support and engage with autistic pupils. This worthy scheme mirrors some of the key ambitions of the TAE project which aims, amongst other things, to foster greater acceptance of autistic children as individuals with their own particular qualities and strengths, as well as needs.

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The teacher training materials being developed by the teams in Greece and Italy are based on those provided by our partners, the Autism Education Trust (AET). In the AET National Standards (a resource developed in collaboration with the Autism Centre for Education and Research at the University of Birmingham) for example, autism is conceived of as ‘four areas of difference’, rather than a set of impairments. In the TAE, we hope that by engaging directly with school staff, learning from them and exchanging ideas, we can promote greater understanding and inclusion of autistic children in mainstream schools.

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Addio Milano

Last week the Italian team hosted the tri-national set of meetings, visits and discussions which take place on the TAE project approximately every six months. Based in Monza, near Milan, and spread over five days, this event provides an important opportunity for team members and associated professionals to discuss progress and plan the next phases of the scheme.

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Dr Karen Guldberg in discussion with Dr Damian Milton in Monza, Italy.

 As you can imagine, with groups from Greece, Italy and the UK, there were many interesting issues aired in relation to autism education, with cultural and socio-linguistic differences at times providing key talking points. Naturally, our Greek and Italian partners were much more proficient in English than most members of the UK team in either of their languages (Dr Lila Kossyvaki from the UK team is, fortunately, a native Greek speaker). What is clear, however, is that all three teams are moving ahead constructively with the development of the teacher training programmes and that working in such a European partnership is very fruitful.

Next stop: Birmingham in October 2016!

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At the ‘multiplier event’ in Italy, where there was at times three-way translation from Greek, to English, to Italian.

Moving forward apace

There have been exciting developments for both the Greek and Italian teams over recent weeks. The Greek team, led by Katerina Laskaridou, has been in talks with the new director of Special Educational Needs (SEN) at the Ministry of Education in Greece, with a view to potentially rolling out the autism staff training programme across the whole of the country. This is very early days, of course, but extremely encouraging for the Piraeus-based team as well as the broader TAE project members.

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Dr Paola Molteni (Italian team), Dr Lila Kossyvaki (UK team) & Katerina Laskaridou (Greek team Lead) in Birmingham in 2015.

The Italian team, meanwhile, are moving on swiftly with the piloting of Level 2 of the training materials with teachers from a number of local primary schools. They are also finalising plans for the next transnational meeting in Italy which is only a few weeks away. As well as discussions, presentations and the all-important ‘multiplier’ event (which involves many international participants), plans include visits to local schools and meetings with the whole team and sub-teams. We are all looking forward to it!