|Number 6, Edinburgh's one-stop shop for adults with Asperger's and High-Functioning Autism|
I had an initial consultation which led to me attending two weekly programmes – one for adults who have been diagnosed late, after having spent a significant amount of their adult life undiagnosed and another, Living Life to the Full, providing a broad range of coping strategies. I found them both invaluable, as I simultaneously recognised what I already knew about my difficulties and found new ways of looking at and coping with them.
I can’t emphasise enough that for me and people like me, having Asperger’s doesn’t make me Mr Spock or even Moss from The IT Crowd. What makes us different is that we perceive things differently and experience a permanent state of elevated non-specific anxiety. Simple things often seem hard and worrying. The anxiety can build up and burst into debilitating low mood and depression. That’s what we have to cope with. I’m only mildly disabled by Asperger’s. My intelligence and persistence helps me function in the neurotypical world. But I’m still hampered by anxiety.
My own experiences and the knowledge that others, who are affected more profoundly than me, need help led me to try and raise £5000 for Number Six, through its parent charity funding body, Autism Initiatives. There’s a gap between those the state already provides for (autistic adults with learning difficulties) and those who don’t need support (neurotypical people) where people with autism who are intellectually high-functioning still need help.
I returned to Number 6 this year to talk to staff member Rachel McRitchie, who ran the programmes I attended four years ago. Our wide-ranging chat covered many areas, including her specific remit as Health and Wellbeing Coordinator. I asked Rachel how she enjoyed her job.
“I very much love my role. It has a natural evolution in terms of the way I work with people. With others it’s very clear what their goal is over their interaction with people. It’s a clear step-by-step process. But, for me, when it comes to how people are feeling and coping it’s a very varied thing.
“It’s interesting that a lot of what I say to people is actually echoing back what other service users have expressed to me; the way they’ve described how they’ve felt, or the way they’ve described how they’ve succeeded, and how they’ve succeeded – what helped and what didn’t. So, I can then use that and try and remember it and give people options and ideas, and they’ve actually come from each other rather than me.
“I run the Late Diagnosis Group and the Living Life to the Full programme, which is the group for people with low mood and anxiety. It’s self-help strategies aimed at building people up, so that they can try and feel supported, but also use that at times when they’re on their own at times when anxiety builds. People’s anxiety improves when they’re able to speak to somebody and work something through. The reality is that that might happen when they’re on their own at 11 o’clock at night when there isn’t anybody to access.
“I run those two groups and I do lots of one-to-ones, typically with people who’ve expressed an interest in talking to somebody about their anxiety – and it’s usually as vague as that. So, we start with an appointment where I speak to that person and ask them what their priority is and what they might like me to try and do.
“Some people feel like others have always had the answers but that they haven’t, so they sometimes think, that when it comes to feelings, that other people are managing to control those things entirely, and that therefore as a neurotypical person I might have the secret answer as to how to not be depressed or something like that. Of course, I would absolutely love if that was true, but it’s not the reality. “It’s much more likely that what we do is instead agree we can aim for some much more specific target, where we think of situational things that cause somebody stress or anxiety or low mood and we break it down into its parts and try and pick apart what’s actually going on behind that - what’s causing the stress and anxiety. There are things we could be doing to either avoid them or remove them, whatever it may be.
“The bit that people focus on is the feeling low, which is obviously something that you would do, because it overwhelms people, but that’s the symptom of something not working. A lot of people find it very difficult on their own to figure out what the bit that’s not working is. Some people have described it to me as having a sounding board, somebody to bounce their ideas off or speak to. It may be something I say sometimes makes them say “Oh! I’ve never heard it phrased that way and actually that puts all the puzzle pieces into place and I’ve suddenly realised what’s going on.” It doesn’t mean that these things get sorted easily and maybe that’s part of why I quite like my role in that it’s not quite so simple as you fix it and it’s done. It’s more a trust-building thing where people come up with ideas, go off and try them and then get back in touch when they feel that they need things.
“So, I tend to get people in dips and rises where I’ll maybe end up seeing them quite a lot for a little bit of time and then they feel like they can go off and give things a go and maybe I don’t see them for a while and often that’s because things are going fine, and then they’ll pop up again if something extra happens.
“Sometimes that anxiety and stress and even low mood is related to very practical things, like managing mail and correspondence, which is a thing that a lot of people find very tricky. So, if it is something like that there are very logical practical steps that we can take to get things dealt with relatively quickly so that at least their baseline anxiety level lowers and then we can tackle some of the other things that are causing worries.
“I’m not a trained counsellor. It’s not that same as getting an adult mental health referral, but what we try to do is go with having a good knowledge of Asperger’s and thinking about practical steps that people can take. Especially when for a lot of people like that there might be a specific thing that they’re aiming for anyway because it’s easier to know you’ve achieved it.
“I have lots of discussions with people about the concept of “feeling better”. What the heck is “better”? Better than today? Or tomorrow? Or yesterday? It’s helpful for people to define what they’re aiming for. A lot of people get tied up in thinking that “better” is excellent days when you feel euphoric, but that’s actually not what 90% of people experience on a day-to-day basis.
“We mostly have “alright” days which feel not fantastic but not rubbish and we get the tasks done that need to be done and we make some choices that feel comfortable and easy and that’s maybe about it. But if people have felt low for a really long time they’re often always striving for the really good and haven’t noticed when they’ve risen to just in the middle somewhere. So, recognition of where people have gotten to and a kind of grounding with that is important.
“That’s where the new ideas of mindfulness are really helpful, because a lot of people with Asperger’s overthink things and find it very very difficult to move forward with things. Trying to practice mindful techniques can be really helpful because it’s about being in the moment and making decisions based on current information, not past information.”
I lit up when Rachel mentioned mindfulness. It’s been a significant new way of being for me in the last few years and I’ve found the clarity and focus it brings help tremendously in coping with what Asperger’s does to me. Rachel continued.
“It’s a useful tool to support a change in the way that people think, and the way that they default to the over-analyzing and over-thinking style, which doesn’t help people, so to be able to go towards mindfulness is a really helpful thing. We’re looking to move slightly forward from the Living Life to the Full materials which are really good but were never originally designed for people with Asperger’s (they were designed for all people with low mood and anxiety) which covers people with Asperger’s within that. We like to take the best of that and ideas from mindfulness and create a new course, which is going to include a lot more of our Autism knowledge. That’s underway at the moment and hopefully we’ll get the chance to meet and learn from some people within the NHS who’ve been using mindfulness.
“It’s exciting for us to think about how we’re going to keep going and keep evolving. Autism knowledge is growing all the time, so hopefully the more we understand and the more people can learn about, the more we can offer.
“But really, our insight and expertise comes from the volume of people that we’ve met. Personally, out of our database, I’ve probably met at least six hundred of those people, not all for prolonged periods, but for at least a conversation. That volume of people is a wealth of knowledge waiting to be tapped into. That’s what’s really nice about our job – we get that opportunity to meet people and over time get to know them and share in some of their successes which is really enjoyable for me as well!”
This was but a fraction of what we covered, and I'll try and share some more, about the people who use Number 6's services and what a difference they make to them, in the next few days.
Amount raised so far: £4, 075
Amount to raise: £925