The eight-pages of psychodiagnostic evaluation paperwork which handed me my diagnosis of autism spectrum disorder (with anxiety and obsessive-compulsive features) is dated October 24, 2016—just one day before my forty-seventh birthday. Always technically autistic, this is the day on which I became an autistic.
Five years feels like something to be noted, but I haven’t been sure, really, just how to get into it. Enter a new paper in Autism titled, “‘A way to be me’: Autobiographical reflections of autistic adults diagnosed in mid-to-late adulthood”, which details a study utilizing oral history interview methods to discuss the lives of around two dozen late-diagnosed autistic adults.
Autism spectrum disorder, of course, is wildly heterogenous; not everything in this study reflects my own experience. The participants, however, are my effective autism cohort: born before 1975 and diagnosed after age 35.
Before I get into the ways in which I do or do not see myself in the participants, here’s a brief rundown on the past five years, beginning with receiving my diagnosis in the fall of 2016.
I’ve called attention to that recent history here because I want to make it clear that it’s not like all I had to do after my diagnosis was process and contextualize it. The processing and contextualizing happened during a… let’s say not-insignificant period of other accumulating stressors.
The researchers write that they limited participants to the criteria above in order to focus on people who “had spent their childhood and a significant portion of their adulthood living without an autism diagnosis”, seeking to learn how “receiving a late diagnosis in adulthood impacted their experiences and sense of self”.
(I should say one thing up front: the studied group, while in broad strokes my autism cohort, is unreflective of my own experience in one crucial aspect: out of 26 participants, only one had only a high school diploma; only seven were unemployed (and one of those was retired). The vast majority of participants have some type of college degree and are employed. I’ve discussed in the past my feelings of being a “mediocre” autistic, in that I am neither high support needs nor a savant polymath. My inability to maintain employment atop a basic foundation of living independently remains a source my feeling as if I am somewhat unseen in discussions of autistic adults.)
Researchers established from their interviews four overarching themes: being different, exploring identity, the suffering self, and being autistic.
Interviewees offered a range of rich reflections on their changing sense of self over time. In general, they emphasised that developing a sense of self was a complex and sometimes painful process. They attributed these difficulties to a mix of factors, including enacted stigma, discrimination, the internalisation of ableist norms and depressive mood states. For most, identifying as autistic as well as receiving a formal diagnosis had positive impacts on their sense of self, leading to a feeling of connection with a community of like-minded others and a greater focus on positive self-attributes.
There wasn’t much with which I identified in the theme of being different. Growing up, friends might have come and gone (and it’s true in retrospect that the latter perhaps might have been due to difference), but I did have them during most periods of my life. I’ve talked before about being happenstantially insulated from some of the stigma that might have arisen from being even unknowingly autistic by the not-so-simple fact that I did tend to have friends with the same interests as me—with the possible exception of high school, where social conformity grouped me with people who might mildly have been outsiders but were not exactly—or, really, at all—atypical.
Some interviewees, in contrast, mentioned that during childhood they had ‘no memory or perception of being different’ (Simon). As Annette said: ‘nobody thought of there being anything wrong or different about me other than I was quite gifted at school’. Greg conveyed a strong sense of a normative childhood – ‘we got on and we made friends and we did stuff and it was a childhood’.
I didn’t identify much with the aspects of the theme exploring identitythat researchers expressed as playing a role, or, at least not overtly. As I said above, there was a degree of role playing in high school but it mostly was of the unconscious sort, because in high school you can be pretty severely judged if you color too far outside the lines. (Full disclosure here: I at least had the social advantage of being straight, white, and male.) Yes, I briefly ran an underground newspaper; yes, I refused to stand for or recite the Pledge of Allegiance; and yes, in protest of being forced to take an additional semester of Spanish I spent the class in sunglasses and reading Weekly World News. When it comes to my social environment, though, it’s not like I was hanging out, say, with pop culture nerds or theater geeks.
What did strike me as familiar in exploring identity was the idea that you were supposed to be ticking some boxes.
Some interviewees felt they had not achieved as much in their lives as they had hoped. Simon described himself as living ‘an underachiever’s life’. He measured himself against a series of normative life goals – ‘You better start ticking some boxes, meet a girl, settle down, whatever’ – and said he felt ‘frustrated’, ‘alone’, ‘isolated’ and ‘disillusioned’ because he could not meet these expectations.
When I first got online in the fall of 1993 as a college dropout, I chose my first-ever internet handle because, as I said often at the time, I felt “like my life was five-plus years behind where it was supposed to be”. It wasn’t that I necessarily had a conception of just what “supposed to be” consisted. Rather, it was just more of that ever-present sense of social conformity dictating my sense of self-worth. At least, I guess I figured, I was expressing this lack before anyone else could do so.
Also within exploring identity is the idea of reinventing myself, and I admit I’m a bit fascinated in how this was connected by participants to things such as “geographic mobility [and] relationship changes”, at least in the sense that from the time I graduated high school in 1987 until I moved to Portland in 1997, I was never in one place for very many years—even if it was just a matter of going from Albany to Chicago to Albany to Brooklyn to Yonkers to Albany to San Francisco. I can’t remember exactly how I phrased it when I’ve discussed this before, but I do not have an especially consistent sense of self over the course of my about-to-be 52 years—something I assume is related to severely-deficient autobiographical memory. While I’ve memories from every past of my life (although the degree to which this is true varies significantly), I often cannot quite recognize the person who experienced this or that time. It’s unclear to what degree, then, that this was “reinventing myself” so much as some combination of flailing about due to undiagnosed autism and simply not having vivid memories of one period to the next with which to draw out and define a stable identity.
When it comes to the theme of the suffering self, I do, of course, recognize and identify. I’ve said over and over again that pre-diagnosis my life was one of being little more than a failure and a fuck-up by nearly every standard by which normative and typical society judges. In the words of participants, being “too shy, too anxious, not clever enough” or “so lacking as a person” or “being so sure that everything is wrong with you”.
There’s some discussion within this theme of ‘trying to survive’ trauma, and one of the things I’ve talked a lot about in the past year or so is that being autistic in many ways is inherently traumatic, for values of traumatic pulled from both the medical and social models of disability—even in the absence of memory. This is especially true, I think, for the undiagnosed because while there is still a disconnect and some overt stigma when you are a known autistic, having that disconnect without having a single, solitary indication that there’s an explanation other than personal failing is something else altogether.
Much of what I found familiar in this study were participants’ expressions of being autistic once they’d received a diagnosis. This is something I’ve talked about almost from the start, because having the label meant my life of mind no longer had just an undifferentiated mass of issues, it now had discrete boxes with labels on them. Things could now be sorted one from another, and having been sorted then be considered.
For study participants diagnosis meant “a huge relief” and “everything just clicked into place” and “an incredible feeling to finally know why”. Part of being autistic, the participants indicated, was illuminating the past. Diagnosis became “a lightbulb moment” allowing one to “reconstruct my perspective of who I am”.
For many of these late-diagnosed adults, autism provided a unifying explanation for aspects of their past and a retrospective understanding of their preferences, capacities and difficulties. […] Subsequent to diagnosis, he has a better understanding of his own behaviour – ‘I look back now and I know what was happening . . . I’d reached my saturation point in terms of stimulation’.
I’ve described this in the past by explaining that diagnosis is a a kind of retcon which study participants say “puts everything in your life in a different light” under which you come to realize that “actually I’m not a bad person, I’m not faulty” and that “there might be a reason for all of this, this essentially failed life”. A retcon which brings a kind of “relief, and awesome to finally know I wasn’t a broken person, or a bad person, or dumb, or stupid, or all the other things I’d beaten myself up about for so many decades”.
(Interestingly, some study participants said that their diagnosis led them to reframe “some of their mental health issues as ‘autistic burnout’ rather than depression”. This should be a subject of some concern and discussion, because with autistic burnout indeed seeming to be its own thing, treatments for depression might or might not be relevant.)
Also within being autistic, researchers found an aspect described as being kind to myself, wherein diagnosis leads to self-forgiveness—or what I’ve described as what for me has been a kind of unmindful self-compassion.
Simon commented that his diagnosis ‘opened up the opportunity for growth’, explaining that he can ‘still obsess and still collect . . . but not beat myself up’. Some explicitly linked autism diagnosis to better self-care: ‘I’ve got more of a handle to understand my own reactions and how maybe to look after myself a bit better’ (Veronica). Kristen believed she had become more adept at balancing her strengths and her support needs since receiving her diagnosis […].
Researchers also found that being my ‘true self’ was part of being autistic post-diagnosis thanks to knowing you “don’t need to try and fit into these norms”. Life pre-diagnosis was “was bits and pieces of disconnected things” and being “a failure”, whereas life through the reframing that comes with diagnosis lets you find more of “a centre”.
Some, however, suggested they had mixed feelings about autism diagnosis. For example, David said, ‘The journey’s a bit of a blessing and a curse . . . I still don’t know what the journey has for me. I don’t have the answers’. Lisa felt disappointed that ‘so many things still stay the same’, adding: ‘I don’t know if I expected to wake up and go, “hey I’m autistic”, to everyone and then the world was going to change. And it hasn’t’.
For me, my only mixed feelings about my diagnosis come from the inescapable thoughts of what might have been lost due to living for 46 years without one. Diagnosis has defined for me the ways in which I need to insist that the world around me accommodate itself to my needs. That doesn’t, of course, always yield success, and it does often result in frustration. At least, though, you know what fight you are fighting after a lifetime of sitting on one’s own sidelines.
One of the most important summaries of what it feels like to be a late-diagnosed autistic comes in the researchers’ conclusions.
However, some of our interviewees emphasised their deep disappointment in not meeting perceived standards of achievement, noting a discrepancy in their desired versus actual outcomes, especially in terms of career progression. Solomon (2013) has discussed narrative frames of autistic achievement as ‘characterised by ambivalence and contradictions’ (p. 125). Others have questioned the reliance on normative assumptions and markers of success, arguing that autistic people may have different aspirations and values than those underpinned by models prioritising autonomy and independence (Kapp et al., 2013; Lawson, 2008 see Parsons, 2015). The disappointment expressed by some of our interviewees suggests that the internalisation of normative expectations, also known as internalised oppression (Goodley, 2016; Milton & Moon, 2012), has a negative impact on self-worth as well as raising issues of discrimination and the (in)adequacy of supports and accommodations to assist people to realise their aspirations.
That disappointment stemming from our own internalized abelism is tough to shake off. We’ve lived a lifetime within those “normative assumptions and markers of success” and those “normative expectations” and as much as the reframing and retcon of diagnosis can come as a relief, you still has to live in a world that seems stubbornly designed to refute that reframing.
Our third theme, ‘the suffering self’, related to negative self-conceptions, the impact of trauma and experiences of inner turmoil. Negative self-conceptions, resulting from the internalisation of stigmatising attitudes, have been noted in the literature on autistic adults (e.g. Bachmann et al., 2019; Botha et al., 2020; Schneid & Raz, 2020). In terms of late diagnosed adults, Leedham and colleagues (2020) reported that prior to diagnosis some autistic women had a devalued sense of self, including beliefs that they are ‘broken’, ‘wrong’ or ‘mental’. Hens and Langenberg (2018) also described their interviewees’ perspectives on suffering and their ‘long-lasting insecurities concerning their person, and how to participate in life’ (p. 52).
In the end, what’s difficult about a late (in my case, midlife) diagnosis is that hanging overhead is whether or not there’s even enough time both to make your own adjustments and to make the world adjust to you. Decades have in some sense been wasted. This is especially true if you are undereducated and unemployable—entirely capable at this point of living independently but nonetheless also incapable of financially supporting yourself. I’m not sure I’m even aware of the degree to which these facts interrelate to all of the “internalized oppression”.
That said, I’ll just give the researchers the final word here, as they offer a fairly succinct summation of encountering an autism diagnosis late in life.
Our final theme, ‘being Autistic’, centred on interviewees’ transformed sense of self-following autism diagnosis. Overall, autism diagnosis late in life had an overwhelmingly positive impact, providing a unifying explanation for aspects of the past including insight into challenges, increased self-forgiveness and an overcoming of internalised stigma in relation to autistic traits and preferences that contributed to a greater sense of self-authenticity. Interviewees described diagnosis as a form of illumination.
Five years on, I remain increasingly illuminated but still struggling with the world around me so much continuing to live in the dark.