Reflections on the first #shapeARUK seminar

by Kabie Brook, co-host in Edinburgh, Autistic activist, and co-founder of Autism Rights Group Highland 

As co-host for seminar one: Autism Practice, I had the chance to help shape the series - in a small yet significant way, by assisting with the environment, Autistic access and representation. As this was the first seminar it was easier to make suggestions and steer things in a way that didn’t challenge any perceived norms of the series. As it turned out though, that wasn’t as significant as I expected. The organising team and Sue in particular seemed up for anything and (for me) it was the easiest non Autistic led (collaborative) event that I’ve ever been involved in.  Usually, in my experience trying to ensure that organisers make autism related conferences and other events accessible is a harder struggle than it should be and often even from people who purport to be ‘autism experts’ there’s a lot of resistance to actually including us or even considering access for us.

I’m hoping that the results will not only inform the rest of the seminar series but evidence the importance and value of including Autistic people in planning and that simple changes matter. The changes and considerations in question were small and benefitted everyone - not just Autistic participants; many people commented that they wished such practices as publishing menus in advance, longer breaks, clear details of what to expect and planning that centres on those attending was thought about at all events. In short, feedback suggests that we did quite a good job.

It seems so long ago now when we first started with a venue search, visiting potential venues with a long list of absolute requirements, or desires, or 'it’d be nice but not essential’… And here we are, at the stage of considering feedback from seminar delegates and reflecting on the achievements and flaws of the two days in Edinburgh.

Feedback is always exciting to read through, the good and the bad. Finding out what was done well and turning criticism or suggestions into ideas for improvements is a nice way to round off a task.  Particularly noted as positive for this seminar were:

•  The comments board: a way for people to write down a thought and add it as it came to them or to be included without having to speak out.

•  All advance information: in particular Menus in advance; menus posted to the website to allow people to see what food would be available; maps and photos of the building and its situation; detailed information about the programme available. These are ways of making the day more predictable that give a feel of familiarity to an event that if left as an unknown can make it harder to attend.

•  Small group discussions: people over and over said they found these helpful, particularly because of the mix of participants that were included who came from different perspectives that they were able to discuss the topics with. Hearing others perspectives and an exchange of ideas between people respecting and interested in everyone’s view.

•  The acknowledgement of the need and value of involving Autistic people - Autistic participants said that they felt genuinely included and listened to.

•  Informal conversations between formal sessions, the small numbers attending allowed for discussions and time to get to know each other that often isn’t practical at a larger or less structured event.

We also received Suggestions on how to do things differently to improve future events:

•  Including Autistic speakers who aren’t normally heard.  The effort taken to include Autistic people outside of the usual circle invited to events was commented on, with particular mention given to Sean’s contribution that came from the viewpoint of a younger community member. (I had the pleasure to bring along two young ARGH members, young people often not represented at events : Sean who contributed to a panel discussion and another who attended as a participant).

•  Include different ways of allowing contributions and ways of putting things over: writing, video etc. We were prompted to think about those that have a lot to contribute but are usually excluded from presenting in the traditional ways.

•  With a varied group some said it took time to acclimatise to language, different groups are normalised into their own ways of talking about the topics and although within groups this is an easy way to share ideas for those in different groups it can be harder to acclimatise to the language used.

•  Some people suggested more time or fewer topics for discussion groups, they felt that with a lot to get through sometimes there just wasn’t enough time.

•  More on how research may inform practice: the basic mechanics of what happens and what has to happen to make research of benefit in practical terms.

One of the things that emerged strongly for myself and certainly a few people that I spoke to during the seminar was just how much we are in our own bubbles. We immerse ourselves in our area of interest with others who are similar to us and we rarely get a chance to break into other bubbles that we don’t already inhabit. Beforehand I had been thinking in terms of the separation between Autistic people, parents, practitioners and families.  Sometimes though, we need to think about connection and allies outside of our bubble, because membership of the same bubble doesn’t necessarily mean that two people will share the same perspective.  This maybe highlighted that there aren’t enough chances to come together and share within community or across communities.

To move onto my more critical observations; even well done nothing can ever be perfect and there were flaws that particularly stood out for me - things that we could have tried to do better.

First, people who attended may have noticed that we were using the interaction badge system, one area that I felt that could be improved would have been to have explained these more fully. Something that I have noticed at other events is that if time isn’t taken to explain how the system works: that Green is as important to many as Red, and why, then the uptake is low. I think that they are very visible and 'different’ and thus a little scary to some.  You can read a view on interaction badges here. 

Second, the mix of attendees worked well with to me one glaring and inexcusable exception. The lack of visible Autistic researchers was a huge disappointment. In planning this was covered but sadly it didn’t materialise - not through lack of desire but still, planning on that could have been improved.

On writing that, I expect different reactions and one in particular:

Why does it matter?

Answering why it matters is a huge task. Firstly there are many Autistic researchers working in the autism field (and elsewhere), so to me not making more effort to visibly include them is a mistake. Within our own bubble we may know the range of skills and abilities within the Autistic community and the competencies that people posses, many working at the highest levels in their field or with extreme knowledge on particular subjects. They have knowledge and expertise that can be discounted by less enlightened people - people who are sometimes the ones responsible for recruitment or offering the opportunities we all need to get on in our chosen specialism.

Naturally I am extremely aware of the prejudice that Autistic people face, our lack of genuine voice when making decisions about us - from daily life to policy, to service development and most importantly in discussions around 'what’s best for us’. So to make clear the obvious is always a necessity, to promote those in our community who don’t always have the same privilege and networks of their academic peers is an obligation.

Finishing on a negative perhaps isn’t really telling it like it is, I still feel that overall we did a good job.  Certainly when talking about the event as a whole people did seem to leave satisfied and feeling as though they’d taken part in something worthwhile.  We thought very carefully about making the space as accessible and comfortable as possible and although nothing is ever perfect, I feel the work paid off.  Knowing that nothing less than perfect is ever good enough for me, perhaps means that the next time I get the chance to impact on something similar it will be even better.