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.

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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.

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!