Blog post by: Heta Pukki, President of the European Council of Autistic People (EUCAP)
In the early stages of autistic people connecting with each other on the internet, forming the communities that established the foundations of the current neurodiversity movement in the 1990s, one of the small number of international mailing lists providing the platform for this process was Independent Living on the Autistic Spectrum, a.k.a. the InLv list. This was one tiny signal about how central the idea has been to our communities over the past decades.
The European Council of Autistic People (EUCAP) joined the European Network on Independent Living (ENIL) in 2022, recognising it as an organisation with goals and values that autistic people can wholeheartedly support, while we often find ourselves divided over many other topics. This reflected the continued central role of this theme in our collective advocacy.
Later that year, along with three of our member organisations and many others, EUCAP co-signed a response to a Scottish Government report which proposed solutions to issues such as autistic people enduring extensive, unfounded stays in hospitals and being forced to live far from their communities to receive services. Many problems were evident in the solutions offered to these issues, such as proposing to replace institutional services with something that essentially amounts to new kinds of institutions, “nicer” on the surface but not fundamentally different in their approach.
In EUCAP, we recognised the original problems and the shortcomings in how they were addressed as being familiar to all of us, ubiquitous across Europe. Scotland is not at all unique in terms of the level of problems – we keep seeing depressingly repetitive exposés in the media in many countries – but rather in the level of outspoken advocacy, allowing us to see the situation in greater detail than elsewhere. For example, the groundbreaking Inclusive Governance project, carried out in collaboration between Scottish Autism and autistic-led NGOs, produced recommendations on how to turn service users into directors of service provision, being taught explicitly about agency and decision-making. Such models, if adopted widely, could begin to bring us hope of finally seeing the profound change that we need, to stop the horror stories repeating endlessly.
To me, the issues of independent living are deeply personal as well as a matter of collective advocacy. I know from my own experience and from that of people close to me, from observing friends and colleagues in many countries, about the issues that never become dramatic enough to get media attention.
We tend to be excluded from personal assistance. I have lived much of my life being uncomfortably dependent on family and friends, denying myself many things that are part of basic human dignity, until I started receiving assistance at age 50. I wrote about the obstacles I faced back then, and I know they remain the same, with numerous autistic people unable to get any meaningful assessment to even begin to apply for support, or being told by various gatekeepers to services that their disability is the wrong kind. We are seen as not disabled enough, or too disabled to benefit from assistance, and proving you fit the narrow gap between these has been made nearly impossible, thus denying chances for truly independent living, as well as pursuit of employment opportunities that would match our true potential.
I have observed persistent, oppressive pushing of group home placement as supposedly the only option for a young autistic person who clearly and rationally explained their reasons for refusing that, and insisting on their right to choose where to live; I see that the right to that choice will be taken away from anyone who does not have the energy and the knowledge to fight, just because group homes are seen as the default option. I see the European Disability Card being out of reach, because of poorly considered eligibility criteria, for many who could benefit from it to support their life in the community. In general, I see autistic people being denied independence, or allowed their independence but denied much of what constitutes living.
A feminist slogan from the 1960s often comes to mind when engaging with these questions: The personal is political. I feel we need to analyse our situations in the light of how broader societal structures and practices are expressed in the micro-climates of our lives, the minute interactions and conflicts that are often considered private, embarrassing, attributed to us as individuals. For me this was perfectly exemplified just last year when a social worker sat in my living room, questioned me about my life for two hours, and then said: ‘Your personal assistance will of course be granted on the basis of visual impairment only, because autism does not make you eligible for assistance’. This could not get much more personal, impinging on the exact ways in which my assistants should interact with me in highly personal daily activities, or more political, reflecting the pressures on the social worker and me to act in certain ways to steer the use of the resources that society puts at our disposal, interpreting the rules that govern this.
Another perennial theme in autistic-led advocacy, closely interlinked with independent living, is the need for more data to serve disability rights advocacy. In this, we align with the European Disability Forum’s call for collection of disaggregated data. We have no way to monitor significant changes in autistic people’s use of the services that support independent living, with the worst situations in this respect seen in countries where even the existence of autistic adults is still widely denied, to the point where correct diagnoses can be switched to incorrect when a person turns 18. While we know the problems exist on a massive scale, we lack tools and resources to measure the effects of projects and policies.
Our own surveys suggest that autistic people want autism research to focus on services that improve our situations as the highest priority – repeating what many studies have shown before – and that many autistic people experience violence perpetrated by workers in institutional settings. Further, we know that large numbers of autistic people have strong opinions on what methods should be used in supporting us, with many speaking against behaviorist interventions and suggesting alternatives, which emphasises the need for participatory approaches in service development and research. This is where personal needs clash with political processes in a major way, as existing power structures still seem to keep steering the main part of autism research funding into other areas, not the ones that could lead towards the best chance for independent living for the majority of autistic people in Europe.