Co-creating a Centre of Autistic Culture in Auckland, Aotearoa

Photo by Sulthan Auliya on Unsplash

The Autistic / ND whānau concept and Autistic / ND communities are important and essential building blocks of a new emerging reality. The social model of disability applies. We need to actively encourage environmental engineering, and we need to push back against toxic social expectations, and equip future generations of Autistic people with the tools and Autistic peer support that allow them to co-create healthy ecologies of care around them.

Just like we centre the lived experience of Autistic people in the education of healthcare professionals about Autistic ways of being and Autistic culture, centres of Autistic culture need to be designed by and with local Autistic people, taking into account specific local needs, and once implemented, they need to be operated by local Autistic people.

If you are Autistic and live in Aotearoa, and especially if you live in the Auckland region, we invite you to join us in the co-creation process, and to submit your ideas and feedback in relation to the draft scope of a local Autistic centre of culture outlined below. Even if you don’t live in Aotearoa, you can add your name in support of this initiative to underscore the relevance of the proposed concept to Autistic communities worldwide.

Please use the form below to submit ideas and feedback, to register your interest in being part of the core co-design team, and to add your name in support of this initiative and our intention to request funding for this initiative via grants for community-led development from our government.

Scope

Picture by Ulku Mazlum

What do you want funding for?

Co-design of a Centre of Autistic Culture in Auckland, by and with Autistic people for Autistic people. Our goals:

  1. To improve the lives and the overall well-being of Autistic people.
  2. To actively contribute to the evolution of openly Autistic culture and to the advancement of the neurodiversity paradigm.

What community need do you purpose to meet?

Local Autistic people in Auckland need to be given the agency to co-design a safe physical space for Autistic collaboration and for local development of Autistic culture and peer support. This will be a centre where Autistic people can be openly Autistic without stigma.

The first step is to elaborate the desgn for a local centre of Autistic culture, which will be realised, operated and used by Autistic people. Such a centre of Autistic culture can also host cultural events that invite the general public.

Further down the track we envisage this initial Centre of Autistic culture to serve as a reference design for the realisation of similar centres in our cities and towns across Aotearoa.

Initially we require funding for the design, finding a suitable location in Auckland, and for securing funding for the implementation of the design. Ultimately we will also require funding for ongoing operations.

How will you address the need?

By elaborating the requirements, architectural principles, and interior design of a dedicated safe space wholly designed by Autistic people, which allows Autistic people to express themselves without stigma and experience a sense of Autistic community.

What are the expected benefits/outcomes?

Autistic people will achieve greater satisfaction in life through active involvement in every step of creating a cultural space which suits their needs, a reduction in stigma, and higher purpose in life through creation of something that is meaningful and long-standing, and being able to express oneself and collaborate with members of the same minority group without being judged.

Ultimate purpose: Creating a safe space to drop in, rest, read, think, or interact and connect without stigma. A cultural centre which is built around the needs of Autistic people, by Autistic people for Autistic people. Furthermore, serving the general public by hosting cultural events. Thus serving the needs of Autistic people and of the wider community as well. Fostering Autistic agency and pride, better health outcomes via being engaged in the community and learning from each other.

How do you know this is needed?

At present there is no dedicated physical place where Autists can pop in to be with other Autists, away from the pressures to pretend to be neuronormative, and where collaboration can happen in the physical realm. This is very important to reduce stigma, and to improve the mental health of Autistic people.

How will you achieve it?

Phase 0

Forming a design team of about 7 local Autists living in Auckland.

Phase 1

The team will jointly elaborate the design principles in considering the following scope:

Users:

  1. Autistic adults (accessibility needs of intersectionally marginalised people are relevant, including easy accessibility from public transport, and also considering the safety of women and queer folks in moving between the space and public transport links)
  2. Companion/child accompanying an Autistic adult
  3. The general public (access is limited to scheduled cultural events)

Draft use cases:

  1. A café and eating space that is safe for Autistic people
  2. Some quiet desk work spaces with the possibility for small group work
  3. Quiet room
  4. Library
  5. Workshop for arts and engineering projects. A secondary use case of the workshop is to serve as a space for scheduled cultural events open to the general public

Draft interior design considerations to reduce sensory overload etc. :

  1. Acoustics
  2. Lighting (multiple options, none of them fluorescent)
  3. Colours
  4. As non-clinical as possible, and not like something that was designed by a city council

Additionally submitted ideas and suggestions:

  1. Provide secure small storage spaces, such as lockers, for people to store their independent project materials in – so they do not have to worry about transporting them each time (unless desired) and to aid in their project materials to be protected and stored safely without concern of interference of others and to prevent items getting misplaced.
  2. Consider in your designing and supply ordering that frequent attendees may get attached to certain items – such as one particular chair or a certain cup, and should someone else be using it or attached to it also, it might create conflicts.
  3. Will Braille books be made available in the library for those who may also have visual impairments?
  4. Lots of power points to plug in and recharge devices.
  5. How will temperature control work?
  6. If certain resources are limited, such as computers or project space, consider a large, clear, visual timetable that an individual can sign up to a spot for a certain amount of time. This could also be made available online and frequent users could sign up their slots in advance if it is important to them to have certain times or days.
  7. Recessed and otherwise indirect lighting: Enough dividing surfaces between those using screens and others not using screens (maybe some roll-down blinds and other movable or temporary screening surfaces, and some built in where people can have their own mini light environment which others don’t need to see), to allow everyone to not have a screen in their line of sight if they aren’t actively using it/sharing its use.
  8. Easily accessible information & signage.
  9. Textured interiors.
  10. Sensory rooms.
  11. Tactile breakout areas – perhaps a sandbox.
  12. I’m a holistic counsellor so sensory spaces and room for movement meditation would be fantastic.

Phase 2

The team will find a suitable location in Auckland, request quotes for implementation based on the design specification, and subsequently look for funding for the implementation phase.

Phase 3

Implementation: building or adapting a space to fit the design

Phase 4

Operations

How do you know the community supports your project?

This project has emerged out of many conversations between Autistic people in Auckland and beyond.

The form below is intended for gathering further input and feedback, and to formally document the level of community support, in preparation for conversations with candidate funders.

What community participation/collaboration will be involved?

Nothing about us without us. This project is a collaboration between Autistic people at every step of the project.

How does your request align with the purpose or priorities of community development grants?

This will provide meaningful work for Autistic people, by Autists for Autists, thereby strengthening connections and access to valuable life skills, reducing stigma and strengthening the mana (pride) and mauri (life force) of Autistic people. When the Centre will be operational, it will become a reference site for other locations and for the general community to learn from.

Where will your activities or project provide the most benefit?

Primary location: Auckland
Primary ethnic group/community: Autistic adults and their families, and intersectionally marginalised neurodivergent people

Autistic community feedback

I felt so excited reading this proposal. I am trained as a Registered Nurse who has been working in the community for 10+ years. I have two boys – one who is Autistic. My husband is neurodivergent and I suspect Autistic too. I developed a side project from 2020 to help me process the trauma around the lockdowns and sudden changes in life. My biggest vision was to create a wellbeing centre just like the way you have described in the text. (Aotearoa)

I am in Ōtautahi and would love to be involved when the time comes to expand to other centres. (Aotearoa)

I love this idea, and if it goes forward, hope to see it implemented in other cities around Aotearoa!

Please document EVERYTHING so that we can gain motivation, strength and proof of success from your fabulous venture. Hopefully, to replicate it around the region. Thank you for doing this. (Australia)

Must have a section where the history of autistic accomplishment is displayed, catalogued, shared and celebrated. We have always been here and been achieving under the guise of being eccentric. Time to tell the real history of autistic culture and attribute advances in humanity, arts and science to the right cohort. (Australia)

This is great! First of all I support this. Secondly, this is really weird but today I had the last straw and decided I have to organise something here, and we came up with “Autistic cooperative trust”.
I’ve made a Meetup group with that name, then I saw this article😅. Do you mind, or should we rethink? Good luck!!
(Australia)

Thank you for sharing. I was thinking of doing something similar in the NY area. One thing that motivated my thinking was that there is so much underutilized talent and super-intelligence in this community, yet most of us are marginalized, and many others struggling to get stable work. So I thought that maybe there was a way to build something where we can help autistic individuals find meaningful professions to survive. If you know anyone who might be interested in this concept close to where I live, please be in touch as I cannot do it alone. I would love to collaborate with what you are doing as well. Maybe we can build these centers where they are needed – everywhere! (US)

This is an exciting idea, particularly the Autistic co-creation as so often spaces are designed for Autistic people as part of a larger set of people with disabilities and have not included Autistic people as part of the design or operations team. The possibility of this project is limitless, with application across the globe. It is hard to imagine what such a space might feel like as I’ve only experienced neuronormative spaces. (US)

I love this! I’m curious whether there will be provisions for autistic people to immigrate to Auckland in future. (US)

Full support for this and would like to roll this out in the UK. (UK)

Sign

I support the initiative of the Autistic Collaboration Trust to co-design, implement, and operate a Centre of Autistic Culture in Auckland, Aotearoa.

Relevant historic context

The need for Centres of Autistic Culture is real and acute. Safe spaces for Autistic people should be recognised as important ingredients of any healthy community, similar to the role that Mechanics’ institutes used to play in Aotearoa and Australia.

From Wikipedia:

Mechanics’ institutes, also known as mechanics’ institutions, sometimes simply known as institutes, and also called schools of arts (especially in the Australian colonies), were educational establishments originally formed to provide adult education, particularly in technical subjects, to working men in Victorian-era Britain and its colonies. They were often funded by local industrialists on the grounds that they would ultimately benefit from having more knowledgeable and skilled employees. The mechanics’ institutes often included libraries for the adult working class, and were said to provide them with an alternative pastime to gambling and drinking in pubs.

Many of the original institutes included lending libraries, and the buildings of some continue to be used as libraries. Others have evolved into parts of universities, adult education facilities, theatres, cinemas, museums, recreational facilities, or community halls. Few are still referred to as mechanics’ institutes, but some retain the name and focus as centre of intellectual and cultural advancement. A 21st-century movement, originating in Victoria, Australia, has organised a series of conferences known as Mechanics’ Institutes Worldwide Conferences, at which information and ideas for the future of mechanics’ institutes are discussed.

In fact, some Mechanics’ institutes continue to be used by small teams of Autistic people, such as the Dandenong Mechanics’ Institute in Victoria, Australia. Sadly, in many cases the institutes have been absorbed into public libraries, with no considerations of the needs of those who greatly benefited from institutes that encouraged autodidactic and self-paced learning across a broad range of domains, and not limited to academic knowledge.

Nevertheless, public libraries are relatively safe public spaces that are regularly frequented by many Autistic adults. However, many improvements can be made, and dedicated Autistic spaces operated by Autistic people, with a much more comprehensive set of services and supports specifically for Autistic community members need to be (re)established. Public libraries are a good place for catalysing support for the co-creation of permanent local Centres of Autistic Culture.

The timeline below documents the dark history of increasing levels of discrimination against Autistic and otherwise neurodivergent people that can be traced back to the early stages of industrialisation, as well as the rise of the Autistic rights counter movement in the 1990s and the wider neurodiversity movement in the 2000s.

Now is the time for the governments all around the world to act and to look into the harmful effects of all forms of “conversion therapy”, and to start undoing some of the damage by actively supporting and appreciating the cultural value of Autistic and otherwise neurodivergent ways of being.

The time for change is now.

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