We have a chat with Katie, Peer Support Development Worker and Counsellor Coordinator here at Leeds Mind, about the upcoming Peer Support Groups for Autistic people.
Hi Katie, tell us a bit about you and your role at Leeds Mind.
Hello! I’m Katie, a trained therapist and peer support development worker at Leeds Mind. I started out as a Counsellor here (now the Counsellor Coordinator) and after I got my autism diagnosis a year ago, the job for Autistic Peer Support Development Worker came up, and I grabbed the opportunity!
The Open Minds: Autism project has funding for 12 months to deliver 8 courses and 12 workshops for autistic people with mental health difficulties in Leeds. I’ve been working on this for 6 months so far, having tweaked some of our already existing mental health groups, and developed some entirely new workshops – with a whole new Autism Course to keep in October.
Can you tell us a bit about peer support groups and how they are delivered? Why might attending a peer support course or workshop prove beneficial for an autistic person?
All Peer Support group work is experiential, which involves group members sharing their feelings and lived experiences. Facilitators are peers too and share their feelings and experience of their autism and mental health in our groups too. Most groups are delivered in person, but we have a couple of online workshops coming up soon.
The groups can help autistic people to feel validated in their experience, feeling less alone and isolated. It’s an opportunity to meet, talk and relate to peers with similar experiences, in a structured setting. We hope they help to increase pride in autistic identity, as well as build an autistic community and decrease social isolation, all of which can mitigate mental health challenges.
It’s a place where people can come to terms with a diagnosis in a safe space or gain self-awareness before looking into diagnoses. We also share what has helped each of us to manage each topic, meaning group members are going away with hopefully helpful tips or techniques to practise, to help them manage their daily lives more easily.
You have been working on these peer support courses and workshops for autistic adults. How did you decide on the different topics you wanted to cover?
The first thing we did before we started our groups was to set up focus groups with autistic people. Part of the focus groups focused on the difficulties people experience, navigating their autism in a neurotypical world, and what mental health struggles may stem from this.
These were collated and organised, and the topics that were repeatedly brought up we decided we needed support on. Then we chose which topics required more structured explorations, which could go into our new course, and which could be one-off workshops or just discussions in an Exploration Conversation.
Tell us a bit more about the courses and workshops and what someone attending a course, or a workshop should expect.
We have just booked some new workshops from October to February and some of the upcoming topics are:
- Late Diagnosis
- Struggles with Communication
- Waiting for diagnosis
- Self-esteem and Unhelpful Thinking
- Autism and ADHD
Workshops generally are 2-hour structured sessions with mixes of discussions, group activities, and individual activities.
Some of these workshops are labelled as Exploration Conversations – these are 2 hour facilitated discussions on a specific topic. This means there are no structured activities, it’s a more open space to delve deeper and explore our thoughts, feelings, and experiences, with others who may be like-minded and share in these.
Our new course starting in October will cover:
- Emotional Processing and Regulation
- Masking and the weight of it
- Burnout and Exhaustion
- Self-advocacy and Communicating.
This is a 5 week course – the first week being an Introduction to Peer Support – and we will cover one topic per week, for 2 hours with a break in the middle. There will be a mix of discussions, group activities, and individual activities, usually structured similarly to this: What our topic is about, our own experiences with it, our challenges with it, and helpful ways to manage it.
I expect that most people will be nervous to come to a group for the first time – this is the same for everyone, and I hope that knowing at least some of what to expect will help with this. Everyone in the group is autistic and understands at least some, if not most, of what you are going through or struggling with, you don’t need to be alone with it. This is what to expect most from the group – the sense of validation and community just from being in a space with other like-minded people.
Do people have to be diagnosed as autistic to attend?
No. We have people attending who are all at different places in their autism journey. Some are just discovering the potential traits they may have, some have self-identified, and some are officially diagnosed. We welcome everyone and have thought about this whilst writing our sessions, ensuring they are inclusive no matter where you are in your journey.
Why should managers and employers in the network consider signposting employees to these courses?
These groups can help autistic employees in a multitude of ways, as stated above in how they benefit members. But to put it simply, the groups can help people to be happier in stay in their job roles. Mainly because they learn about themselves and their needs and can start to put them in place to protect their mental health whilst working.
It’s been reported (National Autistic Society) that only 32% of autistic people are employed, with only 16% being in full-time employment.
This is likely due to the stresses and pressures of working the same way allistic (non-autistic) people do and not being able to do so without mental health difficulties. We collectively have many amazing skills that are being underutilised because we can’t sit in a bright, loud office and socialise for 8 hours every day. If employers want to make sure that their employees are mentally healthy whilst working, there is work to be done, and the first step is making sure the autistic employees know what they are struggling with, what their needs are, and how to communicate that. Our groups discuss these points on a variety of topics that autistic people may struggle with.
What kind of things have you taken into account to help people feel safe when attending these groups?
Since we are autistic ourselves, we have thought about what struggles we might have in attending a group like this, and tried to mitigate as much as we can. I visited many venues in Leeds and took the top 5 most “autism friendly” (see question 11) to our focus group, who chose the venues that we use.
Aside from the venues themselves, we have introduced Ready to Talk cards to relieve what can be perceived as social pressure to talk in groups. These cards are green on one side, and red on the other – members can switch to red if they don’t feel able or ready to talk, and to green if they are able to contribute.
Listening is a valid part of peer support, and we understand the anxiety of attending, never mind speaking in a group, so there is never any pressure to. We make sure we leave space for processing time, provide fidget toys (and welcome members to bring their own), as well as welcome and encourage group members to bring what helps them to feel safe, with them. For example, headphones, sunglasses, comfy clothes, and safety food.
How can employers signpost employees they think would benefit from these courses to the groups in a safe and considerate way?
All of our groups and courses are on the Leeds Mind website (under ‘Services’), and peer support groups, with one form to fill in for any groups they want to attend. I feel as though employers should consider signposting this to everyone they work with, as they may not even know who is or isn’t autistic, and then nobody is left out or called out.
If they want to signpost this directly to an employee they know is autistic and would benefit from the groups, there might be ways to do this considerately. If it were me, I wouldn’t want the conversation to be in front of other colleagues. I would also want it to be a discussion about personal development and general support, not because they felt it would “fix” anything, or only be good for the company. I also wouldn’t want to feel pressured into going, it must be a choice for the employee.
How can employers support their employees to attend these courses and workshops, a lot of which are during office hours?
Not all of our groups are during office hours, but of course a lot have to be, as they are my working hours! Since these groups would be so beneficial to employees feeling better in themselves, and therefore more able to manage their day to day, including work, these groups are beneficial to employers as well, as spoken about above.
Therefore, whatever employees can do to allow their employees to attend these groups during working hours would be beneficial. If the group is personal development for an employee, if possible, this should be part of the work day, not time they owe back.
People are also more likely to attend the groups if someone else is aware that they are attending – for example, their manager – as there is a certain level of accountability there, and it can often be much easier to do something for someone else, than for yourself.
Once employees are through the door into the group, I don’t doubt they will come back, as there unknown aspect has gone, and they will see the benefits of attending – we just need help getting people to their first session, which employers can definitely help with!
In general, is there any advice you can give employers in the network around how to help employees who are autistic to identify and communicate the reasonable adjustments that would help them in the workplace?
One thing that can be really hard for autistic people is to know what their needs are, and even more so, be able to communicate them. We do work on this in some of our groups, but employers can help by offering reasonable adjustments, without being asked for them.
Reasonable adjustments could include, having a consistent place to work (ie, not hot desking), being able to use headphones, or stimming whilst working, being flexible, if possible, with working from home, or working somewhere quiet by themselves. These things can help people not to become overstimulation and anxious on any given day and realistically it would be great if these things were offered to everyone. This would then also help people who don’t know they are autistic or find it really difficult to raise this as a need.
Also, having a planned way of how and when you will communicate with employees can help them plan and manage their expectations – for example, “We will have face-to-face meetings every 2 weeks to check in, but if I need anything in between I will send an email/message and ask if we can have a phone call”. To help autistic employees to know what is expected of them, they may need to ask more questions and have instructions repeated, or written down, since their processing time and style may differ.
Some people may not even know that these adjustments will help them, and they don’t know it is available for them. I have only learnt all of these tips because my managers at Leeds Mind offered these things naturally and continue to check in to find ways to make work life easier, so I can focus on doing the work to the best of my ability.
You’ve done a lot of work with the focus group to ensure course venues are accessible. What should people consider to ensure their venue is accessible for autistic people?
A lot of being accessible is trying to mitigate sensory overstimulation, for example: avoiding fluorescent lighting or other bright lights, having blinds or curtains to keep light out, keeping out strong smells and a lot of noise, and regulating temperatures. If these can’t be done, can you provide a breakout space where employees can go if they need to work quietly, with the lights off, or allow them to use headphones/dark glasses etc?
Other accessibility features could include: having clear signs to direct you around the office, and for rooms themselves so it is clear where to go and which room is which; having non-ticking clocks; keeping daily changes to a minimum (ie, keeping the same desk, using the same rooms, having a set routine).
At Leeds Mind, we make sure to ask if people need to be shown around if it’s their first time in the building, and I have created a visual map of how to get to our building. These are just some examples of what could be helpful but do ask people in your venue what they think would be helpful!
Finally, for our network members, can you give us an insight into the kinds of things that indicate that a workplace is mentally healthy for autistic employees?
I think the most important part of this is communicating and open-mindedness. Every autistic person is different and likely has different needs, as with any other employee. Everything I’ve written above regarding accessible venues, and reasonable adjustments can go a long way in creating a workplace that is mentally healthy for autistic employees.
But this list isn’t extensive as I’m not the expert on all autistic people. Doing your own research and asking your employees what they think would be helpful, can go further than you think in being a supportive employer. Being open to what they need, if it’s possible to provide it, even though you may not understand why it would help them.
