Europe and Autism: United in Neurodiversity?

Europe and Autism: United in Neurodiversity?

The aim of improving autism support in Europe is laudable.  However, is it informed by too negative a vision of the future for people on the spectrum? 

While the 'postcode lottery' for some UK government services is a source of frustration to many, we should spare a thought for the differences in treatment for people with autism across the EU.  For the millions of people on the autistic spectrum in Europe (estimates for the number of those affected range from 1.51 million to 3.17 million), life chances vary wildly depending on one's country of residence. 

According to Autism Europe's recent research, only 5 EU countries (Bulgaria, Denmark, France, Hungary and most UK constituent nations) have comprehensive autism plans in place.  In some countries, autism policies are devised in services where people with autism cross paths with the state.  These plans may differ from one region to another, as with the German education policies which are devolved to the Länder: the option of mainstream versus special schooling is therefore frequently determined by location rather than need.  Elsewhere, the very concept of autism awareness is a relatively new one.  The 2010 EAA2020 conference reported that families in many eastern European countries could not access autism provision due to stigma and in 2012, autism organisations were still warning of European countries without any autism support. 

Moreover, having an autism plan does not in itself guarantee optimal outcomes.  Autism Europe points out that France was one of the first countries to devise an autism strategy, but sadly this has not stopped some questionable practices.  The French government has been condemned by the European Committee of Social Rights for providing inadequate education to children with autism, and until the start of this year, autism was routinely treated by the unproven and inhumane method of wrapping people in cold wet sheets. 

In the light of this disparity in treatment for individuals with autism across Europe, it is hardly surprising that the European Parliament is seeking to adopt a Europe-wide strategy on autism.  After all, there are many parts of Europe where improvement is certainly needed.  The draft written declaration on autism has a welcome emphasis on sharing best practice and on the importance of evidence-based interventions.  The recognition that children with autism grow up to become adults with autism and will need help with life's challenges as adults is also vital.  However, one cannot help but wonder whether the declaration's negative portrayal of the autism spectrum is going to deliver the best possible autism strategy. 

The Dangers of Negativity

To begin with, the terminology used to describe autism is overwhelmingly unfavourable.  According to the declaration, autism is a 'complex brain disorder' characterised by 'mild to severe impairments' in a range of areas, and for which there is 'currently no cure', the implication being that the authors hope for one soon.  Compare that with leading autism expert Dr Simon Baron Cohen's hypothesis that the autistic spectrum should be considered a condition, not a disorder, because people on the spectrum's way of perceiving the world is not disordered, just different, and that certain autistic traits may be advantageous for scientific aptitude. 

Secondly, the declaration is too vague about the improvements member states can and should  achieve in the lives of people with autism.  Given the extreme variations as outlined above between EU countries' existing action on autism, 'significantly improving the level of independence of people with autism', though a worthwhile aim, is likely to be interpreted very differently from one country to another.  For instance, a country where most people on the spectrum had not even been taught basic self-care would have significantly improved their independence if they learnt to care for themselves.  Nonetheless, it would surely not be acceptable to let that country's leaders rest on their laurels after such a comparatively small step forward, when other EU countries are integrating many people on the spectrum into mainstream education and eventually the job market. 

Opportunities for Positive Change

The declaration would therefore benefit from a more balanced description of autism and a clearer indication of what is possible for people on the spectrum with the right support.  After all, much of the news about autism of late has been highly positive.  Microsoft is hiring more people with autism and SAP has turned to the Danish recruitment agency Specialisterne to recruit more employees with autism due to their increased perceptual capacity and pattern recognition.  Benedetto De Martino at the California Institute of Technology has highlighted the superior ability of people with autism to make rational decisions.  Dr Laurent Mottron at the University of Montreal employs several researchers with autism because some people on the spectrum have extremely high intelligence and exceptional memory.  Legendary entrepreneur Peter Thiel believes Asperger syndrome is an advantage for business leadership as it leads one to think unconventionally and thus innovate.  Not all people on the spectrum will be able to reach these dazzling achievements, but it is only right that governments should be encouraged to help those who can to achieve their full potential. 

Countries where there is presently little support for people with autism may object that it would be impossible for them to go straight from the status quo to a situation where many people with autism are living independent, economically active lives.  It may indeed take some countries longer to reach the goal, but it is still important to have such an outcome as a target.   The measures member states take to speed up diagnosis and improve education for children with autism are more likely to result in independence and economic participation when those children grow up if those in power understand that such an objective is possible and eventually to be expected. 

The benefits for member states of supporting people on the autistic spectrum into employment are another powerful reason why greater strides should be made in autism support.  A study by Prof. Martin Knapp and Krister Jarbrink suggested that the average lifetime cost to the state of supporting a person with autism is £2,940,538  for a person with autism and learning difficulties, £784,785 for a person with high-functioning autism and £525,070 for someone with Asperger syndrome.  Scotland's autism strategy posits an 'invest to save' model whereby if 4% of people with Asperger syndrome could be given support into employment, they would cease to need support and would instead be contributing to the economy.  However, in countries where the vast majority of people on the autistic spectrum are treated as though they have learning difficulties, even if a large proportion do not, the potential savings from developing the talents of people with autism could be far greater.  In difficult economic times, it would be foolish to let the abilities of those who may be uniquely qualified for the tech jobs of the future go to waste. 

Furthermore, the opportunity for people with autism to participate fully in society is not only right, it is a right.  The 2008 UN Convention on the Rights of Persons with Disabilities, to the global implementation of which the EU is officially committed, cites among its general principles full and effective participation and inclusion in society, equality of opportunity and respect for difference and acceptance of persons with disabilities as part of human diversity and humanity.  On World Autism Awareness Day this year, UN Secretary General Ban Ki-Moon made clear that “Recognizing the talents of persons on the autism spectrum, rather than focusing on their weaknesses, is essential to creating a society that is truly inclusive". 

Here in the UK, although there is always room for improvement, we are fortunate to have a highly developed autism strategy.  Hao2.eu is proud to help many talented people with autism acquire the skills they need to participate in the workforce.  We applaud efforts to increase opportunities for people on the autistic spectrum across Europe.  With that in mind, we believe that a more balanced approach, emphasising the abilities of people with autism as well as helping them deal with the issues it brings, would be more likely to achieve positive results.  After all, the first step to achieving anything is believing you can. 

Beth Charlesworth
Head of Digital Marketing and Social Media
Hao2.eu

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