A YAWNING GAP BETWEEN RHETORIC AND ACTION ON AUTISM

The pandemic has exposed the stigma that people on the autism spectrum still face; it’s time for the EU to ditch the empty words and up its game,

During the first months of Spain’s strict COVID-19 lockdown, some news shocked me. People on the autism spectrum, and those accompanying them, were being harassed whenever they left their homes, with people believing they were breaking stay-athome and mask-wearing rules. The Ministry of Health had quite rightfully and given the needs of people on the autism spectrum - allowed them to do so, but this did not stop the attacks. This situation worried me, not only because of the negative emotional impact on people on the autism spectrum but also because it showed the general population’s level of unfamiliarity with the disorder. To raise awareness of the situation, people on the autism spectrum began wearing blue T-shirts and bandanas or highvis vests. This stigmatising practice should not have been necessary, and shows again how little understanding of autism there is in our society, how important World Autism Awareness Day still is, and how vital associations and their work remain.

A survey conducted by Autism Europe in 2020 showed that 73 percent of respondents felt that the needs of autistic people and their families had not been adequately addressed in relation to the lockdown measures. Moreover, the inconsistency and lack of clarity on the rules and restrictions made it di cult for people on the autism spectrum to access information, and receive the essential support they needed, triggering fear and anxiety in many of them. Not being able to have their support person by their side when needed, not being provided with reasonable adjustments during medical treatment, and seeing their education interrupted by the restrictions, and with it, their

“To the people on the autism spectrum and the relevant associations, I pledge to continue my work in Parliament in pursuit of these goals”

much needed routines and stability were and still are, huge challenges being faced by people on the autism spectrum.

I asked the European Commission whether it intended to put forward a specific protocol that laid down measures to ease the confinement of people on the autism spectrum for health reasons. Regrettably, the answer was ‘No’. Given the implications of isolation and quarantine on civil liberty, health, and clinical practice, and the fact that some people on the autism spectrum live in settings outside the home, a Commission-issued, future-proof protocol is essential.

Such a protocol should, however, go further, tackling those structural issues that have been exacerbated by the pandemic, such as social isolation or lack of access to essential services. Ideally, the protocol should be an integral part of an UN Convention on the Rights of Persons with Disabilities-compliant and evidence-based, long-term EU care initiative. So, I am working with co-sponsors on a question to the Commission about people on the autism spectrum and inclusive employment. With this, I hope that the Commission will improve the collection of quality data on the matter, and adopt measures that address the needs of people on the autism spectrum.

However, the EU and its Member States need to do much more to up their game and ditch the empty words. We have a solid foundation on which to build an EU initiative on long-term care: the (sadly) non-binding Charter for Persons with Autism, adopted by Parliament a quarter of a century ago. There is also the UN Convention on the Rights of Persons with Disabilities (binding upon the EU, its institutions and Member States although insu ciently implemented), among others. We now need to fix an endemic problem: the lack of implementation in Member States and the yawning gap between rhetoric and action. To the people on the autism spectrum and the relevant associations, I pledge to continue my work in Parliament in pursuit of these goals.