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.’

 

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Inclusion: what does it mean?

For a term so frequently used, there can be a surprising lack of consensus or even thought about what ‘inclusion’ actually means in the context of autism education. Much of the debate within the UK continues to centre around the basic issue of placement: should a child be educated within a mainstream or a ‘special’ school, or in a mainstream setting with an autism ‘resource’ attached? Moreover, while in Italy, all parents have the right to request a mainstream placement for their child, the situation in Greece, rather like the UK in some respects, is rather more diffuse, where children are placed in different settings, and some experiencing a high degree of educational segregation.

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Members of the Italian, Greek and UK teams at a transnational meeting in Birmingham

 

The difficulty with such a conceptualisation of educational inclusion – one that focusses simply on what sort of school the child attends – is that the responsibility for achieving such integration remains essentially with the child, and whether or not s/he can cope with the environment, or ‘fit in’. However, on the TAE project, the teams from Greece, Italy and the UK are aiming for a more holistic and evolved understanding of inclusion. In the Schools Autism Competency Framework (which is a core document in the development of the TAE teacher training materials) created by the Autism Education Trust, for example, Christine Breakey is cited as follows:

“Any understanding of autism should not be approached from a position of ‘deficit’, but rather from a position of ‘difference’. Autistic people are not neuro-typical people with something missing or something extra added on. They are different. If we are serious about equality and inclusion within any area, then we must first of all understand that difference.” (p.8)

While the concept of ‘difference’ is in itself quite complex and multi-layered (and indeed, can be problematic), this principle makes it clear that the onus is on the school staff to understand the child in order to take that first step towards educational inclusion.

Similarly, when students at the Autism Centre for Education and Research (ACER) were asked about how to facilitate inclusion for autistic children, teaching assistant Katie Hobson referred to the importance of learning about autism as a core part of teacher training, in order to enable educators ‘to plan and implement activities based around the children’s strengths and promote difference being seen as something important, to be cherished.’ Lisa Corbett, another teaching assistant, took this idea a step further, by suggesting, for example, that ‘social skills should be taught to ALL children, not just those with ASC.’ This viewpoint reinforces the notion that the autistic child is placed on the same educational footing as all other children, and is not deemed to need any more ‘social skills’ teaching as anyone else, for example.

Professor Gary Thomas, in a recent interview on the ACER blog, defined educational inclusion as follows:

For me, inclusion is about much more than disability or special needs. It’s about a mindset of acceptance of everyone for who they are.”

These perspectives represent quite a different idea of inclusion than simply thinking about what sort of school the child attends. For the various partners of the TAE project, considering the issues around inclusion from a much broader and progressive standpoint not only adds value to the scheme itself, but permits a fruitful coalition between three countries, despite the different approaches to educational placement represented in our respective nations.

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A tri-national partnership: Dr Lila Kossyvaki, Dr Paola Molteni and Katerina Laskaridou from the UK, Italian and Greek teams.

 

Lisa Corbett is a completing a BPhil in Inclusion and Special Educational Needs

Katie Hobson is studying for an Advanced Certificate in Autism (Adults)

Gary Thomas is Professor of Inclusion and Diversity in the School of Education at the University of Birmingham.

Reference:

Breakey, Christine (2006) The Autism Spectrum: A Guide to Good Practice. London: Jessica Kingsley

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

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.