Uncovering the hidden histories of late-diagnosed autistics

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Executive Summary
A growing number of people have been receiving a diagnosis of autism during their adulthood, previously having either been misdiagnosed in childhood or missed out on a diagnosis altogether. While emerging work has started to demonstrate the perceived benefits and pitfalls of gaining an autism diagnosis late in life, there is little research on what late-diagnosed adults’ lives were like before they received an autism diagnosis and especially how they survived, thrived and/or experienced distress as the result of not having a diagnosis.

This study sought to change that. To do so, we put together a team of autistic and non-autistic researchers to co-design and co-produce a study that would be thorough, respectful and supportive of our autistic participants. Our autistic partners, including members of our Advisory Group, actively contributed their experience and expertise throughout the study.

We then deployed oral history methods to investigate the life stories of 28 autistic people, aged between 45 and 72 years from diverse parts of Australia, all of whom had been diagnosed after the age of 35. In oral history, an interviewer elicits the memories of people’s unique life experiences and records them in order to preserve their voices and stories. These methods have often been used to uncover overlooked and marginalised voices and, critically, allow people’s views and experiences to be understood within a particular time and place in history.

Our study used these approaches to:
1. understand better the consequences of living without an autism diagnosis,
2. elucidate what instigates an autism diagnosis in mid-to-late adulthood and
3. identify the perceived impact of receiving that diagnosis.

Participants took part in four sessions, including the main oral history interview, through a range of possible formats to facilitate inclusion, all conducted by one of two autistic researchers. The interview data are being analysed using reflexive thematic analysis.

The main interviews produced an enormously rich set of life histories. Participants shared detailed stories of their lives, highlighting a number of overlapping interests. Even more strikingly, they also reported feeling empowered by being able to tell their stories in their own way and reported being more forthcoming because they were able to engage in a project that was co-produced between a team of non-autistic and autistic researchers and where the main interviews were conducted by autistic researchers.

There are four key recommendations from this research, including that sustained efforts be made to:
1. Create greater institutional and structural supports to ensure that autistic researchers are able to play a crucial role in enhancing autism research.
2. Build a larger collection of autistic oral histories, to extend beyond the late-diagnosed adults included here, in other countries across the world.
3. Foster networks of support between autistic people to enable them to tell their stories more frequently in more informal settings as well as in the formal research environments.
4. Protect, enhance, and increase existing diagnostic services for adults.

Researching Potentially Sensitive Topics
While people often feel a great deal of satisfaction from telling their life history (Manning, 2009; Thompson, 2017), we were aware that this process may be challenging for our autistic participants, despite being willing interviewees. This is partly because autistic adults frequently experience additional mental health issues, including suicidal ideation (Cassidy et al., 2018) and trauma (Fuld, 2018). We therefore implemented a series of procedures to mitigate this potential risk, including: inviting the participant to nominate a service provider (e.g., a local doctor) or trusted person who might be available to support them through the process; providing participants with a list of local psychological services and anonymized helplines; and creating a distress protocol (step-by-step procedure; Draucker et al., 2009) that interviewers needed to follow in order to manage any instances in which the participant showed distress during the interview (see Pellicano et al., 2020, for further detail).

We were also aware of the need, potentially, to support our autistic researchers, who also received late diagnoses, and might find it triggering to hear about the often-difficult experiences of others. They were therefore asked to consider specific ways of looking after themselves both before and after each interview; check-in with senior researchers (WL and LP); and seek external help and advice, when necessary.


Participants
The inclusion criteria for this study were derived in collaboration with our autistic co-researchers. To be eligible for our study, participants had to: (i) be born before 1975, that is, before autism appeared in the DSM-III (APA, 1980) and before the beginning of the surge of autism diagnoses in the 1980s; (ii) have received a clinical diagnosis of an autism spectrum condition after the age of 35; (iii) be English-speaking; (iv) have spent most of their childhood and adulthood living in Australia to allow their stories to be contextualized within the particular history of autism in Australia; and (v) provide written informed consent. It was felt that these criteria ensured that we included the life histories of those in mid-to-late adulthood, a particularly under-served group in autism research and practice (e.g., Happé & Charlton, 2012). It also sought to ensure that participants had spent their childhood and a significant portion of their adulthood living without an autism diagnosis and perhaps not knowing they were autistic and had grown up at a time when autism was unknown to clinicians, educators and the broader public.

We used convenience sampling (snowballing) methods to recruit participants. A social media campaign with a video and flyer were initially circulated via the Autism CRC’s social media, which then generated additional participants through Australian self-advocacy groups, clinician and researcher networks and, especially, social media (Twitter, Facebook) and online forums. Within two weeks, we had received expressions of interest from 37 people – a number which far exceeded our target number (n=24) and which we believe is testament to the participatory approach adopted for this project.

Twenty-eight people met all five inclusion criteria for this project (see Appendix). They ranged in age from 45 to 72 years (M=53.5 years, SD=7.6). Fifteen people identified as female, 11 as male and one as non-binary (one preferred not to say). All had received an independent clinical diagnosis according to DSM-IV (APA, 2000) or DSM-5 (APA, 2013) late in life – at, on average, the age of 50 years. They had received this diagnosis, on average, three years prior to participation in this study, although the duration between diagnosis and participation varied widely, from three months to 10 years.

Our participants came from diverse parts of Australia, including nine people from Victoria, six from New South Wales, six from Queensland, three from Western Australia, two from South Australia, one from the Northern Territory and one from Tasmania. Most (72%) were from cities and 28% from inner and outer regional communities. All were born in Australia except for one, who was born in the United Kingdom. All reported to be of White European ethnic background and one person identified as Aboriginal. Furthermore, all spoke English at home, with the exception of one participant who spoke Spanish.

Most of our participants were highly educated. Of the 28 participants, 22 (78%) reported having at least gained an undergraduate degree. Twenty-two (78%) of our participants were also currently employed in a range of occupations (see Appendix), while five (18%) were studying at the time of participation.

Most of our participants (n=24; 86%) reported co-occurring mental or physical health conditions (see Appendix), with half reporting having received at some point in their lives a diagnosis of anxiety disorder. Five participants (18%) reported being in receipt of a plan through the National Disability Insurance Scheme (NDIS), which gave them access to funding for supports and service.

Findings
Preliminary analysis of the transcripts has revealed an extraordinarily rich and subtle series of reflections from our participants, all of whom have been immensely generous with their time and candid in their accounts. Working with the Autism CRC, these oral histories will be made available through a digital platform at a major university library. The transcripts and analysis will also be written-up in academic form jointly with a historian of public health (MY), who has extensive experience with oral histories.

Our headline findings from the project flow both from the methodological approaches that were adopted and from the substance of the stories shared.

The key methodological finding emerged from the experience that participants had of engaging in a project that was co-produced between a team of non-autistic and autistic researchers and where the main interviews were conducted by autistic researchers, both of which remain very rare in the field of autism research. When participants were asked how they felt as a result of engaging in this kind of research process – from responding to the call for participants, to completing the paperwork, to being given various ways to join the project, to having their needs met (breaks, interview times) throughout the project and so on – they responded overwhelmingly positively. While recounting their life history was often reported to be “exhausting” and “draining”, participants also reported feeling “supported all the way” and agreed that “it was made easier because I had an autistic researcher interviewing me”. They reported feeling a total lack of judgement, that they were fully understood and their needs were met: “I don’t think I’d ever been asked to explain myself and to actually be heard”. One participant went so far as to say that they “probably would have dropped out [of the project] if it was run by people who weren’t autistic”. Only one person said the ‘status’ of the researcher, autistic or not, made no difference to them. Such was the level of connection between the researchers and the participant that one individual even said their needs were over- catered for. Although, this person also added that they understood the protocol required checking in, and that other autistics might not be able to notice or access their own needs in the way that she was able to.

In terms of the substance of the stories that were shared, what emerged, overwhelmingly, from the life histories was the sense of individuals recalling feeling “out of step” with their peers and their broader communities at various points of their lives: “I didn’t have it easy growing up”. Many participants recounted making substantial and highly intentional efforts to craft a life for themselves that reflected their own passions and interests while also attending to the sometimes- uncomfortable expectations and social requirements of others.

For 40 years, I felt bad and different but not able to put that into words.

Particular emphasis emerged in these accounts of key moments of “transition” in life. These were sometimes moments where established neurotypical conventions seemed ill-suited to the wellbeing of our participants, including the move from one school to another or the end of school and the beginning of working life: “the struggles that we went through in school, and the struggles we go through with relationships, and the struggles we go through with work”. At other times, the key moments of personal challenge were those that are also often challenging for neurotypical individuals seeking to make sense of their own place in the world, including the loss of parents and the resulting personal grief, the making and breaking of personal friendships and the pursuit of intimate and loving relationships:

The fact that going through our life history and stuff like that, looking at especially the bits where it was quite apparent that we were different in some way, shape or form, whether that be social interactions as kids or teenage years and trying to have relationships, or even post teenage years. That constant realisation is that we’re not the same as everybody else.

Emphasis emerged in these accounts of key moments of “transition” in life. These were sometimes moments where established neurotypical conventions seemed ill-suited to the wellbeing of our participants, including the move from one school to another or the end of school and the beginning of working life: “the struggles that we went through in school, and the struggles we go through with relationships, and the struggles we go through with work”. At other times, the key moments of personal challenge were those that are also often challenging for neurotypical individuals seeking to make sense of their own place in the world, including the loss of parents and the resulting personal grief, the making and breaking of personal friendships and the pursuit of intimate and loving relationships:

The fact that going through our life history and stuff like that, looking at especially the bits where it was quite apparent that we were different in some way, shape or form, whether that be social interactions as kids or teenage years and trying to have relationships, or even post teenage years. That constant realisation is that we’re not the same as everybody else.

Participants recalled in significant detail how they had to draw on their own personal resources in order to plot a path through these challenges, often feeling unable to rely on the support of others or to fall back on the established social conventions that can reassure neurotypical people at these moments of difficulty.

This absence of a sense of support at key moments also reinforced the relief that some participants reported when they were given an autism diagnosis in the later part of their lives. As one participant explained:

I had a context in which to view my life. My life had been all these different bits and pieces which seem to be chaotic, or, failure, or god knows what, particularly in a social situation. But with the diagnosis, it turned, it gave me a centre, a core, from which, that unified all of these things that I had considered or related to separately. But they weren’t separate. They were all part and parcel of this one thing, autism.

Some spoke of taking considerable efforts to pursue such a diagnosis and even of being rebuffed by clinicians and other professionals at earlier points: “and every now and again, I’d go off and see a psychologist, and try and get an understanding of how I was not fitting in the same way that I could see that other people were... why I was just crashing and burning all the time”. Many spoke of being able to reinterpret earlier memories when equipped with a diagnosis, often finding emotional reassurance in being able to do so, although they also described frequently feeling as if they had “missed opportunities”: “well, there was relief when I was diagnosed in that it wasn’t my fault but, yes, sadness in the fact that there was so much more that I could have done in my life”. Participants also discussed at length the ability to discover community with other autistic people – to “find my tribe” – once they had a diagnosis.

With the autistic community it’s not just the connection of things you do together... but it’s a connection of the way we think.

Limitations
This study is not without its limitations. First, our participants were predominantly of white ethnic background, were more likely to identify as female, and more than three quarters of the sample

With the autistic community it’s not just the connection were currently employed. It is therefore possible that a selection bias may have existed, particularly toward those who are willing to consent and able to convey their life history orally.

This in itself is not wholly surprising. Oral history projects are rarely fully representative as the method makes substantial demands on participants that not everyone is able or willing to meet. This is no doubt exacerbated in this case by the fact that qualitative, interview-based studies with autistic participants also have a tendency to over-represent those who are comfortable in extended conversation with researchers, whether those researchers are autistic themselves or not.

Moreover, given that the oral histories collected here specifically reflect the experiences of specific late-diagnosed autistic adults, they may not be straightforwardly generalizable to other autistic adults in Australia, other countries or cultural groups. The protocol itself, however, is designed to be used to gather comparative information about the experiences of late-diagnosed autistic adults in other countries and cultural groups and we look forward to seeing future oral history analyses that may collectively cast more light on the issues raised by this initial project.