Who are the autism experts?

expertise

‘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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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