Autistic Mutual Aid Fund – COVID-19 Donations Please!

Donate to the AUTISTIC MUTUAL AID FUND here.

Apply to the Fund here. 

These are tough times, with most of us reeling from the impact of Coronavirus. And with businesses, schools, and universities closing their physical premises, the supermarket shelves emptying, and plans being cancelled, we’re facing a disturbing present, and an uncertain future.

And for some members of our autistic community, the future is particularly daunting.

Many autistic people work as self-employed speakers, trainers, and other forms of autistic advocate. They perform a role that benefits all of us – autistic people, parents/carers, teachers, and health and social care professionals; and all who love and care for autistic people.
But with conferences and events being cancelled, and schools and other venues closing as a result of the ongoing COVID-19 emergency, they are facing a devastating cut in their livelihoods.

And we want to do anything we can to ‘give back’ to these members of our community.

So, we’re setting up a fund – The Autistic Mutual Aid Fund – with the aim of making life just a bit easier for our autistic advocates at this challenging time [Please note that the organisers of the Fund will not be eligible to claim from it]. 

Donate to the AUTISTIC MUTUAL AID FUND here.

Apply to the Fund here. 

Here is some information about the Fund:

Who/what is the Fund for?

The Autistic Mutual Aid Fund is for autistic people who are self-employed, working in the field of autism advocacy (broadly defined), who are facing significant financial losses as a result of the COVID-19 outbreak, and its impact.

It is intended to provide a ‘Helping Hand’ – covering relatively small, discreet costs incurred by people in this position. It is NOT intended to replace all, or most of the income lost; or to cover all of the outgoings of self-employed autistic advocates – a)because this is the role of the government; and b) because the fund is likely to be quite small-scale, and capable of making only small discretionary grants.

Examples of things that may be covered by grants from the Fund include, but are not limited to:

Costs of taxi travel where travel on public transport is not possible for either autism- or virus-related reasons; costs of equipment or software etc to move business online, and advertise new services; contributions to specific household/utility bills; costs related to maintaining autistic equilibrium in challenging times (e.g. purchasing specific groceries for restrictive diet, purchasing/replacing stim toys, replacing specific toiletries, or other sensory-related products that run out during period of income-loss.

Other requests will be considered at the Organisers’ discretion.

More about the Fund:

At the current time, it is uncertain how many donations the Fund will attract, and over what period of time. If the Fund proves self-sustaining, it is possible that there will be scope to continue it beyond the period of the COVID-19 outbreak, and perhaps to broaden its scope. 

Given the level of current uncertainty, it is possible that other, larger funds may emerge, with overlapping aims to this one. In such circumstances, the organisers retain the right to close the Autistic Mutual Aid Fund, and to donate any remaining balance of donations to the similar, larger Fund. 
All applications to the Autistic Mutual Aid Fund will be considered by the Organisers (Gillian Loomes and Shona Murphy), and granted at our discretion. Nothing in this publicity, or in the application survey, constitute an offer of a grant. 

The maximum amount of any single Helping Hand grant will be £100. It is possible that this may be revised in future, depending on the status of the Fund. However, we ask applicants to bear in mind that this is likely to be a small fund, and is intended as a gesture of support and ‘good will’ to make lives just a little bit easier in challenging times. We ask you to respect this gesture, by a) being thoughtful and sensible in the requests you make of the Fund; and, b) being understanding and respectful if the Organisers need to turn down your application for any reason.

Who are we?

We are:

Gillian Loomes
Gillian Loomes is an autistic scholar-activist. She held a teaching fellowship at ACER (the Autism Centre for Education and Research), University of Birmingham for several years, and has experience as a research consultant; including for the Autism Education Trust, the International Disability Rights Monitor, and the Essl Foundation. Her recent publications address topics relating the autism as social identity, ‘autistic feminism’, and the role of research participation and collaboration within the politics of disability rights. Gillian works for Leeds Autism AIM, and is a convenor of PARC (the Participatory Autism Research Collective). She tweets regularly, and can be followed @loomesgill.

Gillian’s website is voicespaces.co.uk

Shona Murphy
Shona is an autistic autism trainer. She has an MA in Autism, where she researched autistic parenthood, and also does consultancy in autism research, supports autistic people, and does a variety of voluntary work supporting and advocating for autistic people.

Shona’s website is shonamurphy.me 

Donate to the AUTISTIC MUTUAL AID FUND here.

Apply to the Fund here. 

Support and Self-Advocacy: How to Meet a New Support Worker

I’m quite used to being supported by support workers/PAs in different capacities – having had educational and employment support in different forms for the last 20 years or so. I’ve also BEEN a support worker. However, no matter how “used to” it I get, I still find the initial meeting with a new support worker – or rather, a worker in a new role, challenging and extremely anxiety/panic-inducing.

I’m not too sure to what extent this is impacted by my autism – I suspect my autism plays at least a contributing part in my discomfort, given that what I struggle with most is interacting with a “new” person. It just generally feels like I don’t know what to expect – what the person will say, how I might respond, what comes next etc – without having “learned” how a person communicates, I find it extremely difficult to predict what they might say in any given context, meaning I can’t prepare or “rehearse”, as I would before meeting with someone I know. However, I’m fairly certain that many people (autistic or not) would find being supported for the first time, or in a new context, challenging – so I hope that this blog might help.

Today, I met a new PA at uni. This is a different kind of support, to add to that which I already have in place, so I was very apprehensive. What we did during the session was to put together a list of things that it’s useful to know, in order to support me effectively. This list is not exhaustive – because of the nature of support work, you often have to work with lots of people, who only get to meet you at short notice, and it’s difficult to get information to your team in advance. So it’s important that the list is something that can be given to the worker at the start of the session, and that they can look through quickly without being “over-faced”. So the list prioritises things that someone needs to know as soon as they meet me – taking into account that at this point, I’m likely to be extremely anxious, and not as competent at verbal communication as I ordinarily am. Other things I can explain as I get to know each support worker over time.

I’ve also prioritised putting in writing aspects of my preferred support that go most against how support workers are trained, and what is perceived as “good” support (for me, the clearest example of this is the fact that I prefer support workers to make suggestions about what we might do, that I’m happy to agree or disagree with, rather than them leaving this totally up to me). I’ve found in the past that people can feel very uncomfortable with (what they perceive to be) “taking control”, so putting in writing that this is what I need in order for me to make autonomous decisions from the beginning can give “permission” for them to work in a way that is truly “person-centred” for me. For this reason, it was really helpful to make this list along with one of my support workers, in order to get her input about how support workers are trained, and what is expected of them.

I’ll have copies of the list with me at the start of each support session.

I’m reproducing it here, in case it helps anyone else to communicate with new support workers, or lessens their anxiety about doing so:

Introduction for New Support Workers

I’m Gill Loomes. I’m a PhD student – I have multiple physical disabilities and autism, and I’m a wheelchair user. Here are some things that it’s helpful for you to know, in order to support me.

Meeting:

  • It’s best to meet me in Disability Services. I’ll try to wait in reception, but I might need to go to the Quiet Room. If I need to go to the Quiet Room, I’ll let whoever is at the reception desk know that this is where I’ve gone.
  • As I’m autistic, I often experience extreme sensory overload and “panic” when meeting someone for the first time. This means I might not look at you, I might flap my hands and tap, and/or I might struggle to speak, and stutter. When this happens, it helps me if you give me time and plenty of physical space. If you want to talk to me, it helps if you start with my name (I prefer “Gill” to “Gillian”) in order to get my attention. Please DON’T try to finish my sentences for me.

Being Person-Centred:

I appreciate that you will want to provide “person-centred” support for me, and to enable my autonomy. For me, person-centred support includes:

  • I find open-ended questions very overwhelming and demanding (e.g. “what shall we do today?” “where do you want to go for coffee?”). It’s better if you give me a yes/no, or either/or choice (e.g. “Are we going straight to the library, or are there other things to do first?”)
  • As a PhD student, I mostly need physical support in writing up my thesis. I can tell you exactly what to do. I just need help with skills requiring fine motor co-ordination and arm mobility (e.g. typing, using mouse etc).
  • Please can you prompt me to take short breaks? – Approx. every 20 mins

Thank you very much.

Hope you find this useful.

I’d be interested to hear how other people get on with working with new support staff – or how support workers feel about meeting new people. What have you found effective? What is best avoided?

“Reasonable Adjustments” for #AutisticsInAcademia: The Community Speaks…

I made a request on Twitter for people working or studying in academia to share what adjustments or accommodations work to make things better for them. As usual, #AutisticsInAcademia came through, and made some great suggestions. I’ve compiled them into a list below.

You can find the original thread (including some wider discussion of relevant issues) here: https://twitter.com/LoomesGill/status/1147086537210904576

You can follow me on Twitter @Loomesgill

And you can keep in touch with autistic people working/studying in academia internationally via the hashtag: #AutisticsInAcademia

Here are the things that #AutisticsInAcademia have found useful:

  • Having someone outside of the institution to provide advice and support.
  • Attending meetings and events via video-conferencing.
  • Clear expectations.
  • Captions for video/audio.
  • Option to work from home.
  • Following things up in writing, as verbal instructions/discussions can be forgotten.
  • Using (noise-cancelling) headphones in open-plan or shared offices.
  • Working part-time.
  • Using lamps instead of strip-lights.
  • Having a designated desk, rather than hot-desking.
  • Context and detail when people ask questions.
  • Having unspoken/unwritten rules written down.
  • Flexible working.
  • Having a mentor.
  • Mental health support.
  • Access to quiet space.
  • Autism training for colleagues.
  • Prior notice, and support during changes.
  • Warning about any noisy/crowded events on campus.
  • Accessible parking.
  • Support with admin and form-filling.
  • Recording meetings and classes.
  • Completing work orally, rather than in writing.
  • Access to a note-taker.
  • Access to pdf documents to read with screen-reader.

Do you have any further suggestions? Or any comments about being #AutisticsInAcademia? Feel free to respond in the Comments Section. I’ll update this article periodically to expand our discussion.

Finding my Voice

Welcome to this, my first post.

It’s always a challenge to battle the fear of the blank page, but I’m going to do that here by sharing some thoughts about one of the ways in which I have found, maintained, and developed my “voice” throughout my life. 

I am autistic. And as is commonly accepted, being autistic implies a difference in communication and social interaction – and difficulties in communicating in an unsupportive social environment. This means that we sometimes find our own creative, diverse ways of expressing ourselves.

For me, this has always been music.

There are several ways in which I could tell this story – several scripts that I could articulate. I could take the ‘autism script’ wherein everything I say relates to my experiences of autism. But this is problematic, because a significant part of the story is about how one expresses an identity that is not part of the mainstream, and is often thought of as ‘deficit’ or ‘deviant’. How one speaks without having access to the words to explain this identity. Or, I could tell the ‘music story’ – about the wonderful properties of music to help someone with a disability to express themselves. But that’s not right either, because music is not the right thing for all disabled people. For some, it would be absolutely impossible or intolerable. So the script that I’m speaking from is the one that helps me to explain a way in which an autistic woman developed her “voice” and began to tell her own story.

I will pick up the story in junior school, where music lessons and instrument loan were available without cost to a given number of pupils. I don’t remember the process that led to me being one of those pupils, but I do remember being given a choice as to which instrument I would want to learn. I chose the trumpet. I am very clear about my reason for choosing this – it was very deliberate. I chose it because ‘girls don’t play the trumpet’ – the other girls played flutes, clarinets and violins. I wanted to play the trumpet. I didn’t understand the other girls, I didn’t feel any affinity or connection with them and I felt I was failing miserably at being one of them. That isn’t to say that I felt any more in common with the boys, but then there was no expectation that I would. So I chose to play the trumpet as a way of setting myself apart from something that I couldn’t do, and couldn’t be – and finding a different sound, a different “voice” – a “voice” that I felt wasn’t expected of me. No expectations meant no pressure. I could express myself as I wanted.

When I was eleven, I began playing the piano. To be more accurate, I fell absolutely head over heels in love with playing the piano.  I had formal lessons and passed all the exams, but mostly I played, and played, and played. In particular, I used to play during lunch times at school. The school had a large hall, which was otherwise empty of people, but where I was allowed to play the grand piano. I used to go there on most lunch times to escape what felt like the pain and hostility of unstructured social time with peers – and was undisturbed except for the occasional person, usually members of staff, who would pass through the hall and, if they talked to me, would talk about the music. So I found a “voice” that could resonate with those around me, and this opened up the possibility of more than just self-expression. It brought with it an aspect of interaction that I could understand, and undertake with a degree of competence that was often absent in other forms of interaction that were expected of me.

So, clearly for me, music was about rejecting scripts that felt painful and uncomfortable (‘you do “being a girl” this way’), writing my own scripts and finding a “voice” that was achievable for me. However, music is in itself a script – and accessing this script is a way of connecting with the world. In this sense, it matters that it was the folk and traditional music around me that stood out to me as most meaningful and most appealing. And it matters that it is this script as opposed to others (other musical genres – classical, jazz etc) that has given me a “voice” in the social world around me.

The thing about singing traditional/folk songs is that they are social scripts. They are ways of telling what it is to be human in the social world – and they belong to everyone, and they belong to no one. This means that when I sing them, my voice is joining in with an ongoing act of carrying and shaping social scripts. I sing songs that touch on the whole range of human emotions – love, sex, anger, hurt, jealousy… I can express these emotions to the world, without needing to disclose how they relate to me. This is a big deal for someone who grew up without access to the words to explain myself. When I sing, the script is already written for me, I just have to claim it. Likewise, I can sing protest songs that bring into the foreground power and marginalization; that tell stories of those to whom society has denied a “voice”– I can connect with that, without needing to put ‘autism’ and all the assumptions that go along with that word up front as the explicit reason why I connect. I focus on the experience, and on shared experiences and common ground with others. I sing in folk clubs and festivals, where those around me know the script – where it’s their script too, and they join in, and we share. I also sing in other spaces, where these scripts are unfamiliar – in pubs and other social environments where my voice performs an act of bearing witness, and a way of enabling others to connect with the complexities of the human condition.

It would be wrong to assume though, that in order to access the scripts that form social identity one needs words. For me, dancing is a way of connecting and self-expression too. When I clog dance using steps collected and passed on from others, I’m aligning myself with the scripts of those who have gone before me – the (mainly) women and girls who danced in mills in the valley where I live, the music hall ‘stars’ who sought to bring pleasure to others and to achieve acclaim themselves – and those dancers before me who have recognized that those steps were something worthy of doing, and of saving.

And when I freestyle, barefoot at home, in a pub or at a festival –to music in my head, on a CD or with people playing music just for me, I don’t need a script to find my “voice”. My body just feels the music. It’s a purely sensory delight, a moment of absolute liberation – and we all need those.

So throughout my life, music has enabled me to find my “voice” – to express myself, to interact with those around me, and to connect with the “voices”of generations that have gone before me.

With, or without a script – with, or without words

Music is a powerful “voice”.