Motivations for Attending the Programme
Pre-programme questionnaires were used to better understand participants’ motivations for taking part in the programme. Responses were organised into three themes: (1) exploration of autism; (2) empowerment; and (3) developing practical strategies and coping mechanisms.
Reason 1: Exploration of Autism
Participants explained how they engaged with the programme to gain “a deeper understanding of autism” (Harry); generally, but also in relation to themselves: “[I hope to gain increased] self-awareness and self-knowledge” (Brooke). They noted that they wanted to consolidate existing knowledge: “I have done some reading and attended conferences, but in a piecemeal way, about different aspects of autism, and I hope the course will pull the information together” (Fiona); as well as gain a better understanding of specific aspects of autism: “[I want to] understand more about … how my anxieties led to depression and suicidal thoughts” (Kayla). For some participants, exploration was needed to investigate whether they felt that they met the criteria for an autism diagnosis and, if so, whether it would be worthwhile to proceed with a formal diagnostic assessment: “[I wanted] to investigate if self-identification would be a better option for me than trying to obtain a formal assessment/diagnosis from the NHS” (Danielle). Other participants wanted to explore disclosure of autism, to “better understand who, when and how to disclose that I’m autistic. In particular I’m interested in disclosure to family and future employers” (Grace).
Reason 2: Empowerment
A common motivating factor for participating in the programme was based upon “empowerment” (Nigel) and a desire to feel accepted: “I'm looking to meet other like-minded women with a late diagnosis who have struggled for most of their lives but without knowing why” (Emily). Participants wanted to “meet others like me” (Callum), gain “confidence” (Brooke) and “feel less isolated” (Fiona). Linked to this was a desire to “explore the positive aspects of autism” (Andrew).
Reason 3: Developing Practical Strategies and Coping Mechanisms
Participants wanted to learn from one another: “hopefully I will learn something from [the other group members]” (Danielle). Specifically, they wanted to be able to “develop strategies of how to support myself and others like me” (Callum). They also wanted the programme to help them “work through mixed emotions” (Fiona) following diagnosis, and assist them in navigating challenging experiences (e.g., transitions).
In the pre-programme questionnaire, participants were also asked whether they received enough information prior to attending the programme. Encouragingly, all said that they felt that they did receive enough information, with one commenting that this was particularly due to the helpful one-to-one meeting with the facilitator, which took place prior to the start of the programme.
Evaluation of the Exploring Being Autistic Programme
Three key themes were identified from the interview data at both time points (both immediately after the end of the programme, and again 6 months later): (1) Appreciation of the autistic-led nature of the programme; (2) Unity in diversity; and (3) Developing a positive, practical outlook on autism.
Theme 1: Appreciation of the Autistic-Led Nature of the Programme
Some participants were not aware that the programme was organised and led by an autistic person when they initially signed-up, and only in hindsight realised the benefits: “I don’t think that necessarily would have occurred to me before, but now that I’ve done the group and have been led by [the facilitator], who I know is autistic, I liked that and that worked for me” (Brooke). Others reported that they would have engaged with a group led by a neurotypical person, but expressed a preference for the group facilitator to be autistic: “it’s one of the strengths of the course in that you do have that kind of perspective from the person facilitating… it contributed to a feeling of a shared safe space, and of a lessening of judgment … I would engage [with a group led by a non-autistic person] but I would always prefer to be with a person on the spectrum” (Callum). For others, the autistic-led nature of the programme was a key reason for attending:
“I don’t think I would have been quite so keen to come and have [a non-autistic person] lecture me … [the autistic facilitator] made me feel like she was much more understanding and you could open up more, and you could be really honest…I don’t think I would have done that if it was someone who didn’t have the personal understanding and experience of being autistic themselves … to me that was really important and I probably wouldn’t have come had it not been [led by an autistic person]” (Danielle).
The autistic-led nature of this programme was reported to be a welcome contrast from less positive previous experiences with neurotypical professionals in the past:
“I was diagnosed by two professionals who weren’t autistic themselves and I felt really scrutinised, I felt so vulnerable … judged. I was being watched by two people for a couple of hours and I found that quite intimidating … I accepted it as part of the process by its nature really, you’re being diagnosed, but it didn’t feel very friendly, a bit soul destroying” (Brooke).
It was also felt that the autistic facilitator was, perhaps, more qualified than a neurotypical person to lead such a course: “if she has autism herself, then she understands about autism…[an autistic person would] know how to present it better—they understand—whilst sometimes people who don’t have autism don’t understand” (Isabelle). Related to this, the perceived qualities of an autistic facilitator were felt to lend themselves well to leading an autistic group:
“if you have a non-autistic person running the group, they are perhaps going to be less tolerant and less patient of the way that some of us can go off on a tangent, but for us the tangent is just as important as the subject matter we were originally talking about” (Kayla).
One participant commented that:
“we are reaching a stage where we need autistic-led information, groups, support groups and workshops because, particularly with adults, it just doesn’t work any other way. There’s a certain feeling of imposition if someone is not on the same wavelength as you, so I think it’s important that [autistic-led groups] happen and just keep going forward” (Jane).
Not many participants had experience of attending a support programme led by neurotypical professionals with which to compare this programme. Those who did have experience of non-autistic led groups referred to them as being too formal and structured: “we’d get into a discussion and then it’d be like ‘no, we’ve got to pull it back to tick this box’ and so on” (Jane). However, the positive aspects of previously attended non-autistic-led programmes were noted: “it was a good experience to be with other people and be able to see other people’s experience” (Jane). Many reported simply being pleased that something was available: “it was good that there was something rather than just leaving you with the diagnosis and running away” (Nigel). It was also questioned whether there needed to be a dichotomy between autistic-led and non-autistic-led programmes: “I think there should be a collaboration…I think there’s more positive outcomes from collaboration and openness, than from exclusion” (Lucy).
The fact the facilitator was autistic also conferred a benefit in the sense that the facilitator was felt to have a very positive view of what it was to be autistic: “I think she’s a very positive role model” (Fiona). This changed participants’ perceptions on what it meant to be autistic:
“it’s not this really negative, awful position being me. I’m different…I have got a lot of strengths, they’re just intrinsic as being part of me, it’s who I am and it’s partly because I am autistic, so the group made me aware more of myself in a positive way” (Brooke).
Indeed, other participants also reported important attitudinal changes in what it meant to be autistic:
“I thought [being autistic] is not going to change who I am, and I think I didn’t feel like that before I came to the programme” (Danielle).
Whilst some participants felt that the facilitator being autistic “didn’t get in the way of anything” (Harry), others noted that it did occasionally impact on the delivery of the material: “occasionally I found her delivery a bit disjointed, and she once forgot some of the teaching material” (Fiona). However, this was not perceived negatively: “neither mattered much to me and may even have added an element of 'shared vulnerability’” (Fiona). Equally, it was felt that whilst having an autistic facilitator was helpful, it was actually the mix of the facilitator’s personal and professional knowledge that was key. Whilst the facilitator “didn’t often talk about her own experience” (Fiona), it did “seem appropriate” for her not to do this and “she struck just the right balance between being professional as a group facilitator, and participating as a fellow autistic” (Fiona). Ultimately, it was the facilitator’s professional expertise that seemed to be particularly important: “her facilitation skills were lovely, and very skillful” (Grace); “she’s really good in keeping control and keeping things moving at a pace that made sure that we had time to explore ideas but we also had to come back to…a certain routine. That was really important” (Emily). It was suggested that it may be helpful, in future, to have two facilitators, due to the sometimes “emotionally draining” (Paula) content being discussed within the group. Participants questioned: “if people did ever get really upset or distressed, who would carry on with the group? Who would manage that?” (Grace). Indeed, greater screening of mood was suggested as important in future iterations of the programme.
Theme 2: Unity in Diversity
Participants commented positively on the diversity within the groups:
“the stereotype of what [autism] is, is not true, and we are actually all very different and some of us, actually, are quite extrovert and like being around people. Our jobs, our interests, and our sort of histories are very different. Some of us had children and young people, some not; some have been married; and, again, the age difference, some people in their 20s and even people in their 60s, so there was a whole range” (Grace).
“I like the fact it’s mixed, I like the fact it’s male and female, I like the fact there’s a mix of age groups because there’s some younger people and some older people—I think that’s really key…you need to see it in all areas, because that’s the nature of the whole thing itself—it doesn’t just pick. If you had ten people like me in a room, we wouldn’t learn anything…I think that was very important” (Emily).
This diversity was perceived as particularly positive for those who previously had limited experience of meeting other autistic people: “[each group member] seemed to be the kind of person you’d meet any day and not realise they were on the spectrum, so that was a surprise” (Andrew); “meeting the group was massively relevant for me, because it’s one thing reading about it on the Internet but when you’re sitting in a room…that’s an epiphany” (Emily).
In addition to the mixed demographics, participants were at very different stages in their diagnostic journeys—some had received their autism diagnosis some time ago, others had received their diagnosis quite recently, whilst others self-identified as autistic (often debating whether to pursue a formal diagnosis): “I think it was really good that we had people at different stages” (Danielle); “we’re all at different stages…two [participants in the group] were very recently diagnosed [and] were quite different in some ways from the other members of the group” (Grace).
Despite the diversity of the group, participants overwhelmingly reported a sense of belonging: “just talking to each other about our experiences was to me the strong point…you gain from that, you feel legitimised by other people having the same experiences, so it means you’re not just one weird outpost” (Callum). Participants reported feeling comfortable and connected with one another:
“the level of being comfortable with everybody was quite high, so that was nice. It didn’t feel like you couldn’t say something out loud, which was helpful cause I do a lot of self-editing—if I don’t feel confident that there’s not going to be gasps of horror or strange looks, then I just won’t say anything—so that was particularly helpful” (Jane).
Participants reported that they did not always feel this sense of belonging in non-autistic groups: “finding people that have been through similar experiences to myself…my friends and family could never understand why I had so much difficulty, whereas the people in the group completely understood” (Kayla); “it was like being in a nursery with no fighting for the first time. It was like finding the classroom where you could actually be normal and make friends and I don’t think any of us have experienced that” (Paula). However, participants also reported that they had not felt this with some autistic groups, especially when previous groups (unlike the current group) represented what was perceived to be a very wide range of autistic individuals:
“if the way that your iteration of the spectrum manifests itself is not as extreme as other people, it can be difficult to share experiences and similarities, it can be difficult to note your place there and where you fit in and that can be isolating too…you go somewhere like [an autistic event] and it’s nice to have a space and it’s refreshing but the feeling that you can get if you don’t meet people that seem to be similar to you is a second, not rejection, but distance” (Callum).
This sense of belonging was felt to be especially important given that the participants were “somewhat socially isolated” (Nigel) and/or had difficulties with friends and family not really understanding them or their difficulties:
“my friends and family could never understand, why I had so much difficulty, whereas the people in the group completely understood. I think not only does the content of the actual course itself [confer a benefit in terms of] the understanding that came with that, but also knowing that other people were going on that journey with me. It made it a lot easier and I’ve come out from it feeling so much lighter than I’d been since my early teens. It’s been- sorry, I’m going to get emotional now—[pauses to cry]—it’s been absolutely life-changing” (Kayla).
The programme was also reported to “open up a whole new social world, which has been fantastic” (Kayla); and enabled participants to “develop a new community around autism being a common feature” (Olivia). Participants who reported that they had struggled or experienced a lot of challenges in their everyday lives enjoyed the opportunities to interact with other autistic people who were perceived as being successful:
“it’s inspirational when you meet autistic people who are higher functioning than you…one of the other members in the group has got quite a good job in finance and she holds down that job and I’m unemployed at the moment and I found that inspirational—if she can do that, then I can do that” (Nigel).
This sense of belonging appeared to be linked to the process of sharing personal experiences, which had a number of benefits to the group, particularly in relation to self-awareness: “I had so many lightbulb moments, I thought oh my god, I did that, oh my god! It was just so uncanny. It was really, really amazing to become aware of those things” (Brooke). This was also reported to enable participants to frame difficulties in a more positive way: “[I had] a couple of lightbulb moments about things I’ve suffered from for years and then realising it’s just a symptom of a neurological condition and not something that is innately wrong with your character, that makes it a lot easier” (Nigel). This sharing of personal experiences was, in some ways, felt to be even more important than the structured autism knowledge they were receiving:
“peer to peer, and people are talking to each other about their experiences, I think that’s really helpful … you need a facilitator but I really like it when there was more just people talking together amongst themselves and I know that [the facilitator] did try to do that as much as possible, I think that’s very much a feeling that she wanted from the group … she obviously wanted to communicate a situation but she also wanted people to interact with each other and that, for me, was a really strong part” (Callum).
Concern was, however, raised about who should be eligible to complete the course; more for future iterations than in relation to the current cohorts:
“from my experience, maybe even if you’re within a year, or yeah 6 months of your child being diagnosed perhaps, you know, perhaps it’s not the best time of doing it, because you’re trying to process that and then your own stuff” (Danielle).
Theme 3: Developing a Positive and Practical Outlook on Autism
Participants reported that the programme improved their outlook on autism, and this made a real difference in their day-to-day life: “since I’ve been coming to the group there’s been a marked difference in how I am and how I see the world” (Kayla). This newfound outlook was reflected in a number of areas of their lives, and was also related to the educational aspect of the programme: “[It’s helped me to] understand some of the challenges that I face and why I do, um, face those challenges” (Danielle). This knowledge enabled participants to speak about autism with others: “I could then start to talk about what is autism, what are autistic people like, what are their strengths, … facets of the autistic community and also what are the challenges people have” (Olivia). Increased understanding about autism also gave participants “a much broader interest [in autism]” (Andrew), and encouraged some to develop their knowledge further: “I have also gone onto reading a couple of books that I found very good” (Lucy).
The course content was felt to be important for participants struggling with their diagnosis of autism:
“Becoming aware that I had Asperger’s, it kind of made me focus on my weaknesses … [the facilitator] presented a very full view of being on the spectrum, which included a lot of really positive stuff as well and strengths … [this] gave me a more rounded picture of being on the spectrum and made me feel that actually, there were a lot of positive things that I had that I could focus on” (Brooke).
The comprehensive and positive representation of autism that the programme promoted empowered people to “accept that I was a part of this” (Isabelle). Acceptance was often coupled with increased self-awareness: “It really made me aware of things about myself that I hadn’t even been aware of before… it’s only through that group talking that you can really see things and accept it and laugh about it” (Emily);
“It was a case of self-discovery, to be honest … to actually go through the programme and go, oh my god, this is why that’s happened and this is why I’m like this, it has just changed my whole outlook on life and to the point where I can make sense of things now.” (Kayla).
Being more self-aware meant participants were able to realise their own behaviours as they were happening, draw on their improved knowledge to explain why they might be doing or feeling something, and then search for informed solutions to problematic situations:
“I’m in a situation and something arises that I catch myself and go, oh yeah, this is the bit that I understand now,… Whereas before I wouldn’t understand it and I might… [have] got really angry or depressed or really anxious… [now] I can sort of see what’s happening and find a way out of it.” (Emily).
There was also felt to be an extended impact beyond those that attended the programme. For example, one participant reported that: “[the programme] gave me a different way of thinking about autism both for myself and also for my children” (Danielle).
Learning and talking about autism in a positive way led to participants gaining a positive, practical outlook on autism. This ranged from general attitude changes to applying more specific strategies to tackle challenges encountered in day-to-day life. One example of a broad attitude change was related to increased self-awareness:
“I used to… put so many demands on myself to be at a really high level about everything but now I kind of get that I’m not going to be able to do that because I haven’t got the capacity to do that.” (Emily).
Another participant changed her approach to how she presented herself following discussions around social camouflaging:
“there’s one particular thing that stuck in my mind that we discussed about being authentic… just because you might come across as a bit weird, it doesn’t mean people… won’t like you… people can tell if you’re being sort of fake… so I’ve kind of done less masking.” (Grace).
Other participants were satisfied that they could deal with their diagnosis more practically: “this programme had really prepared me and I really dealt with some of those kind of issues about thinking about who I was going to tell, who I wasn’t going to tell” (Danielle).
Many of the more specific practical solutions were reported to be associated with combating mental health problems, particularly anxiety:
“One week where I was feeling ‘off’, I remember going home and thought about [the session] and did something constructive about it for once, rather than spend my time worrying, and it was really useful…we were changing rooms at home and I was feeling completely wrong…I realised that it was probably this change…and I managed to do something to remove some of the stress that was going on” (Jane).
The positive practical outlook was also demonstrated by participants feeling better equipped to address anxiety “I’m living by the moment now… the anxiety hasn’t disappeared, it’s still there but I understand the reasoning behind it, so I feel it makes me better able to cope with the day-to-day things that used to cause me problems” (Olivia). Changes in outlook were also reported to have an impact on what participants were able to do:
“going places when I haven’t been there before, I used to be a bundle of nerves and to the point where sometimes I’d actually not go so it would actually stop me from doing things, whereas now I feel like I’ve got it under control… I understand the reasoning for the anxiety, which means I’m braver than I used to be and I’m more likely to try things because actually I know the anxiety is to do with my autism and not actually because it’s anything to worry about.” (Olivia).
Additional practical solutions were related to addressing sensory issues in the workplace:
“[I got given] some tools where I can go into work and say ‘you have your music really loud, it makes it really hard to work in an open plan office’. I’m not going to say [it’s] because I’m autistic, but [the facilitator has helped me] word it in a way that gives myself a little bit of power to say ‘I’m gonna need this or that or whatever’, so practical strategies are really helpful” (Emily).
Additionally, participants reported an improved confidence with social issues such as eye-contact:
“although I’m quite comfortable with eye contact with people that I know, before when I was out and about, I tended to look at the pavement, look at the floor and not particularly look at people, whereas now where I’ve changed… I’m more confident, happy… I walk with my head up, I look at people.” (Olivia).
Practical solutions were deemed so helpful that participants reflected that they would like to do a follow-on course that provided even more practical information:
“it would be great if you, again, in 6 months’ time, had level two and then people who had done this course could go on to level two and it could be more about living with the diagnosis, giving maybe support, but practical stuff about how to cope with people in your life” (Emily).
There was a longing for some form of “continuation space” (Callum), as participants valued “having a space to allow the information to sink in” (Emily). Indeed, some participants noted anxiety over the programme and its associated support ending: “it’s a really supportive, kind, non-judgmental, environment… you’ve just built that up and then it’s cut off” (Grace). The same participant went on to describe that after a support group “there’s no one really, there’s nothing really there. It’s just, you’re just on your own really” (Grace). Some did note that there were, however, some options available to them:
“now the course has ended, I feel quite upset about losing the support I was getting through attending the group…I also know that [the facilitator] runs once a month groups that I can attend, so it’s not as if I’m being cast adrift…that is a positive thing” (Brooke).
Many questions were raised about how further support options could be organised. For example, it was noted that it was difficult to decide when to raise the possibility of some form of continuation space: “I think it would be good to mention it at the beginning but I think people won’t know at that time whether they want to continue” (Callum). The facilitator had suggested an online forum, but although participants were receptive to the idea of maintaining contact with the group, there was discussion about the appropriability of maintaining contact online: “there was an Internet forum, that [the facilitator] was talking about setting up, and that’s great. I think that would be nice for the group themselves” (Callum); “it needs to be fairly restricted in numbers otherwise there’s going to be lots of different conversations going on at once” (Andrew); “[there is a] question of confidentiality and anonymity” (Andrew). Another noted that “the Internet forum is a happy medium but it would be good if people continued meeting up but there are financial restrictions” (Callum).
Follow up interviews 6 months later revealed that the programme did present participants with an opportunity to meet peers with whom they could keep in touch with, and some did organise and initiate such meet-ups: “it’s nice to not just go to a group and find out about stuff but to be able to build up more support structures” (Olivia). This opportunity also extended to other autistic peers that did not attend the programme:
“it was a shame it was coming to an end and I was thinking, well, why don’t we start meeting up more and getting other people on the spectrum in the local area who feel they don’t have the support they need at the moment to join in as well” (Olivia).
This group was warmly received by those who did attend: “It’s nice to have that group because, because we’re all very familiar, we all understand each other… it’s good to have that network post-group, which has been fantastic.” (Kayla). Other participants confirmed that they did keep in touch online: “I know quite a few of us use [social media], which is actually how I’ve really stayed in touch with one of the group members.” (Danielle). Selecting an appropriate online platform to facilitate keeping in touch seemed to be key:
“I can’t say I found [the online group] that useful, to be honest, just because I think a lot of people weren’t using it and because… of the format… I don’t think a lot of people use [the platform] in their everyday life… [so] I don’t think people really, really did it.” (Grace).
Participants expressed a wish for other autistic adults to benefit from the programme in the same way that they did: “it would be great if this expanded and more people had options to do it in more places” (Callum); “It has been amazing and I think there were a lot of people who would really benefit from coming on it and I think it would be a real shame if we couldn’t carry on with them” (Danielle).