The 14th Autism-Europe International Congress brought nearly 2,000 delegates to Dublin last weekend. Autistic people, researchers, advocates, practitioners and family members from all over the world convened at the Royal Dublin Society to learn from and about each other. Speakers addressed the scourges of misinformation and intolerance, but also celebrated successes and shared practices highly useful to the community.
Ireland’s autism charity, AsIAm, a member of Autism-Europe, co-organized the congress together with AE. At the end of the three days, AsIAm’s founder and CEO, Adam Harris, said that “the energy and hope that fill(ed) these halls” was remarkable. He also said that the congress was more than a conference, more than a simple meeting of experts. “It is a symbol of progress, inclusion and hope,” he said.
We spoke to Adam about working with AE on hosting such a large event, important developments for the autism community in Ireland and beyond, and what lessons advocates can take away from the Congress. (By the way, anyone will be able to benefit from the knowledge shared at the event: recordings of many of the presentations and workshops will be made available online soon.)
The following comments were slightly edited for length only.
It takes a lot of effort to co-organise a large international event like this. What’s the benefit for AsIAm and the Irish autism community?
I think a key benefit is that it provides a spotlight for what we’re trying to build here in Ireland: to bring about a society in which every autistic person is accepted as they are.
The congress has provided a really powerful vehicle for us to engage with government, with parliamentarians, with key corporate supporters, with civil society and the wider Irish public around our priorities and our vision.
We’re also very proud to be the first autistic-led organisation to host the congress. I think that provides an important opportunity for further discussion around key research priorities for the autistic community and to demonstrate accessibility at scale at an event of this size and importance.
Also important to note is that we’re coming together at a time in which we’ve seen an incredible growth in misinformation around autism, where we’ve seen governments around the world coarsen their attitudes towards autistic people and at times proactively spread dangerous misinformation around autism. So, I would hope that the Autism-Europe International Congress will be beneficial to AsIAm, but indeed to all member organisations in terms of creating a platform and a space in which we can counteract that message.
The Congress occurs every three years. What significant developments for autistic people in Ireland, and more generally in Europe, have you seen since the last one (2022, Cracow)?
I think it’s a very mixed picture. I think here in Ireland we’ve seen some positive developments. So, since the last congress, we saw the establishment of a joint Oireachtas [Ireland’s parliament] committee on autism for the first time, which produced a major report on autism policy here in Ireland. That in turn led to the publication of Ireland’s first autism innovation strategy, so the first time a whole government policy has been in place in terms of autism here in Ireland.
But despite those developments, in day-to-day life, autistic people in Ireland continue to face major barriers to accessing the most basic supports, and I know that continues to be the case right across Europe. So, while we are seeing a momentum, while we are seeing new thinking, I think there’s still huge challenges in terms of implementation and delivery. And as the theme of this congress is quality of life, I think systems and effective public systems is something that we’ll need to explore across the three days and indeed that we will explore on the agenda.
I think internationally it’s a much more challenging picture. Autistic people in Ukraine continue to face horrific experiences as a result of the illegal invasion of their country.
And, as I’ve already mentioned, we have seen a growth in very negative misinformation around autism since we last met. So, I think up until maybe a year ago we would have been talking about how we can push forward. How do we push new boundaries for the community? It feels like now we’re in a space where we’re trying to defend the progress that’s already been achieved, and I think it just shows us that forward progress isn’t always inevitable.
What changes do you hope will have taken place by the next Congress (2028, Bilbao/Spain)?
I think there are positive signs coming from the European Parliament at the start of this new mandate. We’re seeing proposals for the need for a European autism strategy. We’ve seen autism featured in President von der Leyen’s priorities for the terms and in her mission messages to various commissioners. So, I think all of that is really positive and I would hope by the time we’re coming to Bilbao, where we’re coming very much towards the end of this mandate for the European Parliament, we’ll have begun to see the fruits and the benefits of some of those changes.
The European Union has just been reviewed by the UN Committee on the Convention of the Rights of Persons with Disabilities. Very significant recommendations made in that committee report in terms of autism specifically, and I would hope we would see the European Union act and deliver on those recommendations by the time we gather in Bilbao.
One of AsIAm’s initiatives is to make Dublin an ‘autism-friendly city’. What does that mean, exactly?
Since our inception 11 years ago, we’ve had programs in schools and workplaces and businesses that are aimed at making the environment, the experience, more accessible for autistic people. In 2018, we were challenged to develop a framework for a whole community to become accessible, and we implemented that in Clonakilty, a small town in West Cork, in 2018. And that was a very successful project. It’s been featured on French television, it’s featured on the World Economic Forum, for example.
It’s about co-creation between autistic people in the locality and the wider community. It’s about the recruitment of autism-friendly champions, organisations that take training and make changes to how things work to improve accessibility and the development of a town plan so that there’s this ongoing process of change and improvement over a three-year period. So, since that framework has been developed, we’ve had 40 communities across Ireland go out on the journey. Five have now achieved the standard, including the City of Waterford, which became Ireland’s first city to become autism friendly.
And now the big task of Dublin, a city of over a million people, our capital city, undertaking this framework is really exciting. Dublin City Council, who are also one of the sponsors for the congress, are working in partnership with us on this through the mayor’s office, and we have a full-time employee in place just focused on supporting communities across Dublin in the suburbs and also in the central business district in implementing this framework, which we hope to achieve over the coming two years.
What changes do you think organisations could push for in their communities to direct more attention toward the needs of autistic people?
Hopefully, the delegates [from other countries] will have had an opportunity over the course of the three days to meet our team, to learn more about our projects and to see some of our projects in action across Dublin City. We’re so committed to collaboration. For example, our service delivery work for the community, so much of that has been informed by the fantastic work of our colleagues in Scottish Autism, another Autism Europe member. So, I think the flow of ideas is extremely important. There’s no one country that’s got this cracked. There’s no one country that excels in each of these areas.
If there’s one thing I am very proud of, it’s that AsIAm is Ireland’s main autism charity, a disabled-persons organisation, autistic-led, but also with a very strong participation by family and parents. So, I think we have developed a partnership model that works, and all our work is about working in partnership both internally within the autistic community and indeed within broader society, with relevant thought leaders and sectors.