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.