Waiting for Autism. A guest post by Paul Lodge

I have written in a couple of places over the last two years in tentative ways about ‘what it is like’ to live as someone with a bipolar disorder diagnosis (see here and here). I continue to be happy with the idea of representing myself to others as falling under this category in writing, and do so in day to day conversations with people in my more immediate vicinity. But there is always a serious concern in the back of my mind about the crudeness of the criteria that are used to lump people together under this heading. It is manifest in the fact that one of the ways of breaking the ice in those conversations is to allow a slightly uncomfortable joking about some of the more traditional conceptions of manic behaviour: “No, you don’t need to worry about whether I will take my clothes off and dance on the table in the middle of the next faculty meeting – however preferable that might be to the in which such meetings usually unfold.”

I found a way to conceptualise another of the background concerns in the wake of reading a series of papers by Louis Sass and Elizabeth Pienkos, in which they discuss differences between what it is like to be bipolar and schizophrenic. The issue here was that my status as bipolar left me falling into the schizophrenic camp far more often than Sass’ and Pienkos’ analyses should have allowed.

Interesting as the bipolar vs schizophrenia issue is in itself, I want to focus here on something else, though the relationship to this realization should be readily apparent. A couple of weeks ago, I discovered that a person working in another faculty has taken on a central role in the University’s strategy for equality and diversity issues. I’ve worked with this person from time to time over the last fifteen years or so and always found them sympathetic. I put this mainly down to the fact that they speak with a strong northern regional accent (as I did before my years living in the US), and have been involved in the efforts to increase the representation of students from state-funded schools in Oxford (something which has been central to the identity of the college in Oxford of which I am a member). However, it is also because they say what they think without seeming to care too much about the ramifications.

Too cut a potentially long digression short, we agreed to meet up to talk about the ways in which ‘mental disability’ might be more of a focus as the strategy moves forward. Not unsurprisingly to me, it was a really enjoyable, long, and lively conversation, of the kind I find relatively easy with one, but no more than one, other person. It was perhaps easier than usual, given that we both disclosed our diagnoses very early on, and it is here that we get to the focus of this post. They told me that they had received an autistic-spectrum diagnosis very recently. And, as we talked about how that related to the struggles they have navigated, and performed into the shadows, on their journey to becoming a Full Professor, I heard many things that resonated. We discussed various social difficulties that I had thought were best bundled under the bipolar label, or treated as a function of poor socialization, egotism, or simply a result of growing up in Yorkshire.

The meeting was enough to get me thinking. But it was followed the very next day by attending the first event organized by Neurodiversity at Oxford which is aimed at anyone, students or staff, who are looking for community. The event was centred around readings by writer poet and Joanne Limburg, another person who received an autism diagnosis later in life. As she read a selection from her beautiful writings and talked about her experiences growing up as a child and fashioning a life as an academically high achieving individual, I found myself very emotional (as I do even now while reflecting on it) holding back the floods of tears that wanted to emerge. It was like watching Elsa singing ‘Let It Go’ for the first time all over again. I was also very moved to hear of how Joanne’s life has been transformed by finding spaces in which she can meet with others who have the same diagnosis, where she can be herself without feeling social anxiety and the constant fear of performing the ‘wrong’ version of what it is to be a person. And I was also intrigued by her discussion of the way in which she has reconstructed her sense of self in the wake of the diagnosis.

Afterward the event I talked to another of the late autism academics who was there, and asked in more detail about how the diagnosis had changed her life and how she got the diagnosis in the first place. The next day I called my local doctors’ surgery and passed the initial screening required for a referral, doubtless aided by the fact that they already have me down as someone with a mental health problem. All this will happen on the NHS, and it seems the wait will be around 6 months.

So now I am waiting. I’m not quite sure for what. The colleague I mentioned first (I think I really can, and should, say ‘friend’ at this point) warned me that she initially ‘failed’ at the first step of the diagnostic testing – which is a very long questionnaire – because she showed up as too empathetic. It seems it was only her capacity to articulate the reasons for this that got her through to the next stage. I’m not sure whether I will fall at that hurdle too, or others. I’m also not sure how it will feel if I don’t come out with a diagnosis, though I know part of me would like to have the chance to find out what it is spend time with people who find community with those who are autistic. And, as a someone who has spent so much time in academic philosophy, I’m already thinking in that kind of way about what it might be to be in a position to use lots of new concepts to understand my past, present and future self and its actions and relations with other selves. It’s exciting and daunting. But mainly it’s just a messy thing waiting to fall out one way or another.

Joanne Limburg is a very impressive person and a wonderful writer. No doubt aware of the fact that she was talking to a room of people self-identifying as neurodivergent in various ways, she pulled away on occasion from her own identity as autistic. At those times she spoke to something else, her sense of the way in which being autistic allowed her a kind of freedom that went beyond the freedom engendered by her new-found sense of explicit solidarity, a freedom to feel more comfortable with her sense of being ‘weird’. Even if I don’t end up being autistic, I’m grateful to her and to my new friend for already feeling more comfortable with some of the bits of my weirdness that I could never squeeze into my bipolar diagnosis. And, of course, that is really a matter of already feeling just a little bit less weird and less alone in that weirdness after so many years.

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