AMASE is a representative Autistic People’s Organisation (APO), dedicated to fostering autistic community, educating wider society and advocating for autistic perspectives and rights. As I will argue, APOs are uniquely well-placed to achieve all of these goals. As representative organisations, they also have a particular role in the UN Convention on the Rights of People with Disabilities (CRPD): all state bodies should be actively involving these organisations in all relevant decision-making.
There are very good practical reasons why government bodies should be closely consulting with representative members of the populations they are making decisions about, even if Scotland wasn’t signed up to the CRPD; I will talk about the barriers currently getting in the way of this, how to overcome them and what there is to gain by doing so.
Who I am
I’m Fergus Murray, one of the founding members of AMASE, the Autistic Mutual Aid Society Edinburgh. I am also a science teacher and writer, and I consult for the University of Edinburgh on several autism-related projects.
I want to talk here about the work of AMASE, and the role of AMASE and other Autistic People’s Organisations in protecting the rights of autistic people.
AMASE exists for three things:
- Autistic Community
running autistic-led late-identification groups, Autistic Pride picnics and various social events
running workshops for Edinburgh university, COSLA, service provides L’Arche and various others
ensuring autistic perspectives are represented, and the concerns of autistic people are taken seriously – as in our mental health report ‘Too complicated to treat’, our participation in the Cross-Party Group and involvement in the Scottish Government’s working group on autism in teacher education.
How AMASE came about
We founded AMASE in 2017, after attending the Late Diagnosis Group at Number 6, which at that time was run by non-autistic staff members (which has since changed). It felt like it was a lot about what’s difficult about being autistic, which is something people tend to hear a lot about after receiving an autism diagnosis: it’s even there in the term ‘diagnosis’, and most of the literature on autism focuses overwhelmingly on supposed ‘deficits’. Nothing on the advantages of being autistic, and nothing about how many of the difficulties arise from things not being set up for people who process the world differently.
The most valuable thing about the group was the opportunity to connect with other autistic people – folks who’ve had similar life experiences, faced many of the same challenges and developed their own strategies for dealing with them. It seemed weird for the group to be facilitated by someone who had no personal experience of these things!
My partner Sonny and I attended Autscape, an annual conference and retreat run by autistic people, for autistic people, and found that meeting dozens of other autistic people, in a space designed to prioritise autistic needs, was transformative. Socialising doesn’t have to be a strain, it turns out, and meeting someone on your own wavelength doesn’t have to be a once-every-few-years event! After we came back we volunteered to run autistic-led late-identification sessions for Number 6, introducing people to the autistic community and encouraging people to share their experiences and especially their coping strategies for living in a world that so often feels like it’s not made for us.
That led to us co-founding AMASE with some of the people we met doing it, as a way to formalise what we were doing and branch out into doing training and advocacy work, partly inspired by Autistic Rights Group Highland (ARGH) which had been doing this sort of thing for years. It was clear that too much about autism was happening without autistic people, and that as a result, autistic people’s needs were not being understood, and our rights were not being respected.
Why APOs are needed
So why does the failure to include autistic people in decisions and training about autism lead to so many violations of autistic rights? There are several dimensions to this, reflected in AMASE’s threefold mission to develop autistic community; advocate for autistic perspectives; and educate wider society. The human rights of autistic people are protected by several pieces of legislation, both domestic and international, but I’m going to be drawing here mainly on the UN CRPD, to which the Scottish Government is a signatory. Not all autistic people see themselves as disabled, but the relevant legal protections should still apply to all of us.
Among the rights guaranteed by the CRPD is the right to ‘full inclusion and participation in the community’. In a world where studies have shown many people react badly to autistic people within seconds of meeting us, and where social misunderstandings are all too common and usually blamed on the autistic side, many autistic people face social isolation in adult life. Autistic-led organisations are uniquely well-placed to remedy that and ensure that autistic people get to meet peers and interact with them as equals, getting the chance to interact in ways that feel natural to us, to put our masks down and communicate with people who have a good chance of getting us intuitively.
Only autistic-led groups can do this without being put in the position of a service user relying on charity, which can be quite disempowering; and I’d suggest that many autistic people have a better handle on what autistic people need than all but a tiny fraction of neurotypicals. In much of Scotland, there is nothing in place to put autistic adults in contact with each other at all, and very little to make sure autistic kids understand how many others are out there having similar experiences. Various studies demonstrate the importance of these connections, including recent findings by Catherine Crompton et al at Edinburgh University, which ‘highlight the need for autistic-led social opportunities and indicate benefits of informal peer support for autistic adults’, something that anyone involved in the autistic community already knew. APOs could do a huge amount to meet autistic people’s right to full inclusion and participation in the community, with relatively little by way of resources: a meeting space or two, and perhaps some help with admin.
It might take more resources to ensure that autistic people’s human rights are met in the fields of education, healthcare and policing, but these are of course all critically important, and autistic-led organisations also have a central role to play in improving outcomes here.
That’s because training is the best tool available to achieve that goal, and autism training should always be designed and delivered mainly by autistic people. We have the ability to speak from personal experience; we have insight into what we most need professionals to know; we are more likely to identify and correct misconceptions and outdated ideas. Training delivered by autistic professionals also gives people a chance to meet us as equals, which many will never have in day-to-day life, and crucially, to ask us questions. In our experience such training is consistently well-received.
Another right enshrined in the CRPD is the right for disabled people to be ‘consulted with and actively involved’ in ‘decision-making processes concerning issues relating to persons with disabilities’, through our representative organizations. The UN Committee overseeing the CRPD is very clear that this means disabled-led organisations. This makes a lot of sense; organisations that are run by people who are not autistic themselves, like the big autism charities in Scotland, might do a lot of good work, but it’s hard to see how they could ever claim to represent us. Autistic people spot problems and see things from perspectives that non-autistic people usually miss. There is of course a place for parents and interested professionals to have their voices heard as well, but they should not dominate the conversation if they have no experience of being autistic themselves – especially when there are plenty of autistic parents and professionals out there too!
Still, it is big charities, which mainly started as organisations for parents, that government bodies tend to turn to for advice. To be fair, they are the ones that always have the resources to give it, but that’s not really an excuse; autistic people, and our representative organisations, should be actively involved in all decision-making about autism, for good practical reasons as well as for reasons of international law. That means budgeting for our time and talking to autistic people right from the start, to help set priorities and flag up any problems before committing to a course of action. It also means ensuring that you’ve done everything you can to make procedures, committees, conferences and so on accessible to autistic people. Ensure clear and detailed information is available well ahead of time, avoid bright lights, talk to some autistic people about what else you need to do.
If you only involve a small number of autistic individuals, chosen by non-autistic people, or ‘consult’ them after major decisions have been made, any involvement is likely to feel tokenistic. At its worst, this can be even worse than not involving autistic people at all – giving a veneer of authenticity, without the benefits that come from empowering autistic people in these processes, while exhausting those taking part.
The Scottish Government has repeatedly affirmed its commitment to its obligations under the UN CRPD, which hopefully means that whatever replaces the Scottish Strategy for Autism next year will actively involve autistic people, and particularly our representative organisations, at every stage: from setting priorities to delivering necessary training to overseeing its implementation.
For that to be practical, these organisations are likely to need resources that we don’t currently have, as well as a shift in priorities from government bodies tasked with developing and implementing policies. Non-autistic people are at a natural disadvantage when it comes to understanding autistic experiences, and allowing them to dominate conversations about autism has not worked out great so far – as you can see from the statistics on autistic unemployment, suicide, school exclusions and access to physical and mental healthcare.
Scotland can do much better than this, and we must. With autistic people empowered to share our insights and have real influence over decisions being made about us, we will.
National Autistic Taskforce
An autistic-led independent guide to quality care for autistic people