After three years with Autism-Europe, our Projects and Communications Officer Haydn Hammersley is moving on to start a new chapter of his work on disability rights with the European Disability Forum. Here he explains what his time at Autism-Europe has meant to him, and gives a bit more of an insight into what we in the Autism-Europe secretariat actually do on a day-to-day basis to improve the quality of autistic people and their families.
Hello. My name is Haydn Hammersley, and any of you who have been involved in Autism-Europe’s events or international meetings might know me better as the association’s Projects and Communications Officer. It was back in September 2015 that I started working at Autism-Europe’s secretariat in Brussels. After three years with the team here, I will now be moving on to a new role with the European Disability Forum.
I can confidently say that I have enjoyed every moment of my time with Autism-Europe. Now, as my time here comes to an end, I thought it would be the perfect opportunity to explain a bit more about why it has meant so much to me, and to help you get a better idea of the work Autism-Europe’s secretariat does for autistic people and their families.
Firstly, I should point out that, unlike many people working for autism organisations, it was not a family link that drew me to work on autism rights. Instead, it was my past experience working as an assistant for autistic adults, and people with other conditions during my time at university in the UK, which set me on the road to where I am now. I was supporting people with greatly varying needs and interests, each of whom had the potential to learn and progress, and to invest their energy in what they did best.
It became clear to me, during this time, that quality of life really goes hand in hand with empowering people to be as autonomous as possible, to make their own decisions, and to be the driving force in showing others what they enjoy doing, where their talents lie and how to assist in getting the best possible outcomes for them. In other words, I saw that people offering assistance should take their lead from persons with disabilities themselves, and to adapt their approach for each individual.
As well as advocating for the rights of autistic people in line with the United Nations Convention on the Rights of Persons with Disabilities, Autism-Europe also promotes this same person-centred approach to support and empowerment. It was this approach in particular that really drew me to the organisation’s work, and made me realise that Autism-Europe was the place I wanted to invest my time and energy.
What the secretariat does
So what work do we typically do here at the Autism-Europe secretariat? Well the main tasks are split up into the following six categories:
Advocacy: A large part of our work involves advocating on behalf of autistic people and their families when EU laws are being made that affect the autism community. In my time here at Autism-Europe, this has most notably involved things such as:
- The European Accessibility Act, where AE pushed for instructions on digital service machines to include easy-to-read language with pictograms, as well as adjustable interfaces for sensory issues. Furthermore, we stressed the importance of on-hand staff familiar with autism and other conditions to offer assistance when services are being provided. We also joined EDF in asking for the built environment to be included in the scope of the act, and for autism-friendly elements to be taken into consideration to support autistic people in navigating their way through public buildings and not being confronted with sensory overload.
- The Pillar of Social Rights, where AE is still working on ensuring that the creation of a more social Europe fully includes the needs of autistic people and their families in emerging legislation such as the Work-Life Balance Directive.
- The upcoming European Disability Strategy post 2020, where we have been working to mainstream autistic needs into its objectives.
- The use of EU Structural funds, and pushing to ensure that these are used to foster community living and deinstitutionalisation, and not to renovate old institutions or indeed to build new ones.
Monitoring: AE has also been working with its members to facilitate their input into monitoring the implementation of the UNCRPD in their countries, and reporting practices that are not in line with its principles.
Awareness: A great deal of the work we do goes into raising awareness of what autism is, and how society can welcome neurodiversity by understanding some of the unique needs autistic people might have. What we also try to do is to look at the potential of autistic people, and to underline the positive contribution that could be made to society if greater efforts were made to eliminate the common barriers that prevent inclusion.
Our awareness campaigns are usually focused around the 2nd of April, which is World Autism Awareness Day. The secretariat encourages its members to join Autism-Europe’s campaigns and provides an array of ready-to-use material to make it easier to do so.
Knowledge: Of course, one of the big advantages of being a member of Autism-Europe is being able to meet people from across Europe working towards a common goal, and to share good practices for improving the quality of life of autistic people and their families. The secretariat therefore regularly organises study visits and training sessions, both on offering direct services for autistic people, and on advocating to policy makers and reporting poor implementation of existing laws. We also share knowledge through our International Congresses that take place every three years.
Communication: Autism-Europe works very hard to ensure a steady flow of news to interested stakeholders via its website and social media, including in easy-to-read format. For our members and subscribers, we also produce our LINK magazine twice a year, containing the latest news on issues affecting autistic people and their families.
Projects: Finally, a big part of our work is that of participating in EU projects, funded by the European Commission. This is an important element of our activity because it allows us to help develop specific tools that can be used by those working with or supporting autistic people. We currently work on several EU projects, mostly developing training courses and materials that can be used by parents and professionals to offer better quality support.
In my time here I have been involved in the TRASE project, which developed tools and training for offering sex education classes for persons with learning disabilities. I also worked on the ASDEU programme, where AE conducted extensive research and an online survey to map what policies exist throughout Europe to support autistic people and their families. AE then issued policy recommendations to the European Commission on what form an EU Strategy on Autism would take. To see the other EU projects that AE is working on, simply click here.
Beyond these main pillars of the Secretariat’s activities, we of course do a lot more depending on what ad-hoc requests we receive in the office. For example, we often answer questions from journalists, help our members find information they are looking for, and cooperate with other EU-level organisations in Brussels to work towards common goals and monitor EU policy developments.
There’s a lot to be done by the small team at the secretariat, but the hard work and dedication of all the colleagues ensures that we produce the best results possible. What has meant the most to me over the past few years is seeing how the brilliant teamwork of the staff members here in Brussels results in us achieving outcomes one would normally associate with a far larger organisation.
Through the work of the secretariat, we have been able to achieve a number of notable and concrete outcomes for autistic people and their families, and the fact that we have been able to put our limited numbers and resources to such good use is something that fills me with a lot of pride. We know there is still a very long way to go for autistic people and their families to overcome many of the barriers they currently face, but Autism-Europe is certainly making its mark.
As of the autumn of 2018, a new staff member will join the team here to work on AE’s advocacy activities. The team looks forward to welcoming them, and we wish them the best of luck in the Autism-Europe family.