I first self-assessed as having an Aspergers neurological profile in early 2018, using an online tool. I was just turning 53, and in the midst of a prolonged period of crisis involving, among other things, upheavals in the custody of my kids from a previous relationship, with the strain affecting every aspect of my life.
My partner Heidi had suggested that I investigate whether I fit the Aspergers profile, as she thought it might shed light on some odd patterns of conflict in our relationship. We had weathered many storms together and felt our relationship to be uncommonly strong, but there were recurring points of conflict that didn’t make sense to us, and seemed to be more to do with some kind of disjunct in our communication styles. In my years as an arts educator I had increasingly worked with children on the spectrum, and recognised many of their experiences in myself, so I had an empathic understanding of autism but my knowledge was limited.
I have a natural temperament towards self-examination and self-awareness, and for many decades have explored various ‘maps of self’ via experiential psychology, neuroscience, existential philosophies and certain mystic traditions. I am drawn to deeper questions about the mystery of existence. I form patterns of reference to try to make sense of my experience of ‘self’ in the universe.
Following my self-assessment, I channeled my natural curiosity into some deep research in order to learn more. I spent that first year immersing myself in countless books, research papers, articles, blogs etc, initially in the particular context of Aspergers and relationship / marriage.
Immediately I was confronted with a cluster of Aspergers stereotypes, and like all stereotypes, these were inadequate, insensitive and limiting in scope. These stereotypes were variously presented as clinically diagnostic authority in research articles (written by non-autistic clinicians); as ignorant over-generalised pop psychology in mainstream media (written by all kinds of non-autistics claiming to understand autistic experience); and as angry distortions in a number of Asperger “hate” sites and forums online (generally propagated by non-autistic women against their male Aspergers partners/husbands/ex-partners).
Outmoded narratives
I began with a series of books focusing on Aspergers marriages. These were either ‘help’ manuals and/or autobiographical accounts written by the ‘NT’ partner. The manuals were almost exclusively directed toward helping the ‘NT’ partner to ‘cope’, and reinforcing the Aspergers partner as the ‘problem’. The autobiographies also reinforced the Aspergers husband as the ‘problem’, while referring to him, in a weirdly affectionate-but-patronising way, as ‘my Aspie’, as if the husband were an exotic pet.
One refreshing exception, which I still revisit, was ‘An Asperger Marriage’, co-written by Gisela and Christopher Slater-Walker in 2002. Both partners share their perspectives in a frank and authentic tone, avoiding the populist jargon and stereotypes of the time, concentrating instead on the complexities of their own experiences in relationship. Their account is clearly a mutual effort towards understanding, with intelligent insight and both taking responsibility for their own behaviours.
Many of the strategies offered in the manuals didn’t apply to myself or our relationship, but there were many useful reminders on practicing effective (mutual) communication. Even so, and Heidi agreed, these were communication strategies that ought to apply to any human interaction, and any relationship wherein two people are committed to being intelligently compassionate with one another. These strategies included: active listening, asking clarifying questions, not making assumptions, not creating unrealistic demands or expectations, among others.
As I scanned these materials, I noticed several patterns.
This was in the years before the current fashionable realisation that women can be autistic too (who would have thought? Just like the delayed realisation, by several decades, that autistic children actually become autistic adults), so I saw patterns of gender bias that were often loaded with political agendas (ranging from the reactionary Aspergers ‘hate’ sites, to female psychologists with an obviously feminist subtext – both framing the female as victims of male abuse). Rarely in these biased accounts was the pre-existing psychological or neurological profile of the female partner assessed or even considered, unless it was to emphasise their trauma in coping with the horrors of an ‘Aspie’ male; there seemed instead to be a gross assumption that ‘being NT’ automatically implied a ‘normal’ psychology, apparently immune to any distortions or abberations of its own. More recent studies have observed Aspergers males can also be more vulnerable to abuse and manipulation, in relationships where the female has Narcissistic Personality Disorder or similar conditions that require a co-dependent or controlling dynamic.
Deeper questions
I also noticed patterns (slowly changing now but still insidiously present) of non-autistic bias – ie apart from the autistic autobiographies, every other resource (including those by professional ‘experts in the field’) appeared to be written from a deeply-embedded matrix of non-autistic assumptions. In recent years I have participated in several autism research surveys, and have been very vocal in pointing out these assumptions when they appear in the question design, as they force answers that are misleading or inaccurate. Even the most universally-accepted assessment tools for autism contain outmoded assumptions and perceptions that have been clearly shown to be incorrect, both clinically and anecdotally.
The more I delved, the more I saw how complex and immeasurably diverse the autistic experience is. So many traits / perceptions / experiences described in these resources had no resonance for me whatsoever, while others articulated my experience specifically in ways I had never found words for, and still other descriptions only partially pointed to my own experience.
I noticed patterns of cultural assumption – the same platform of cultural assumption that I have always had difficulty with. That is, all the literature seemed to assume an essentially white middle-class framework, which further assumes a lifestyle & set of values dominated by mainstream media, western consumerism and stereotypical social conventions of family / relationships / work / religion / politics / sport / academia etc. I was raised in the midst of a peaking 1970s counterculture, so I have never fitted within a cultural ‘mainstream’, regardless of my ‘autism’. Most autistic resources written from within these mainstream assumptions fail to address my particular context, leaving me more acutely aware of my isolation. Striking boldly out at those cultural assumptions are the books by the late Donna Williams, autistic author and advocate, who describes profound personal insight through sheer tenacity, surviving traumatic extremes of poverty, abuse, and social exclusion that mainstream culture perpetuates by its own denial of it.
And in scanning the autistic landscape, I saw how sadly susceptible the ‘autism narrative’ is to all the same human distortions that emerge whenever we try to identify, describe and define any particular aspect of the human experience. In the space of four years since I self-assessed, I have noticed the narrative become increasingly politicised and even deliberately divisive.
The term ‘neurodiversity’, intended as a simple statement of biological fact that includes every human brain, was railroaded into becoming a ‘movement’, saddled with an agenda that seemed to ignore the original inclusive intelligence of the word. Now ‘neurodivergent’ has come to symbolise a minority identity, unavoidably seperating itself from the whole, partitioning itself off as somehow unique, and encumbered with its own cliches and prop mantras, intolerance and chauvinisms, not to mention its muddy adherence to gender politics.
Of course, this populist ‘movement’ has encouraged a broader conversation, but whenever humans, even autistic ones, form collective identity around a set of ideas (however worthwhile), a constricted reality bias and ossification of thought are inevitable because the identity depends on it. And whenever any set of ideas are co-opted & diluted by culture (‘fashionably PC’ etc), that’s when I tend to head in the opposite direction – the collective identity becomes too rigid to accommodate any dissonant voice, critique or (ironically, in this case) divergence.
The ‘Now What?’
In the four years since my self-assessment, reassessing my life through the filter of Aspergers, I have found no particular advantage in my autistic diagnosis other than some personal insights, which in most cases have been more confirmation than revelation. The social supports so readily suggested simply do not exist for someone at my age, in my circumstance. The very systems one would expect to provide support (health care, education, law) are still appallingly ignorant of autism’s complexity and operating from outmoded stereotypes and biases. I can’t afford private health care or autism-specific mental health care, I’m not eligible for any kind of government assistance despite being long-term unemployed, and the deeply-entrenched societal attitudes that make life so difficult for many autistic people seem only to be worsening as social systems hit overload. One need only to look at the continued global prevalence of other unhelpful societal attitudes: racism, greed, violence etc.
As a Map of Self, the autistic filter is the most accurate, the most encompassing of how I understand myself, that I have found yet. It doesn’t solve my problems, it doesn’t offer relief, it doesn’t automatically provide me a sense of ‘community’ or make me feel any less isolated. In fact, in many ways my difficulties have been exacerbated or made more acute by this new knowledge, particularly where it further highlights the failings of society.
At the same time, my deep exploration into Aspergers experience has provided a rich new context for my creative and existential processes. It has given me a more complete recognition of the many methods I employ instinctively, that feel most natural for me when I create; in viewing these methods via an autistic understanding, I can utilise them more deliberately in my creative process.
Ultimately, life is all process. Ultimately, autism by no means describes all of what ‘I’ ‘am’. Existentially, my being leans increasingly toward the Zen and Tao experience, within which Everything is so inter-relational that definitions or descriptions cannot exist (although of course, paradoxically, they continue to exist as an expression of, and embedded in, the same inter-relationship of Everything with itself). In this context, I don’t claim autism as an Identity, but as a container for information, a lens through which to perceive experience, an effective reference system for exploring consciousness. Also, having had my sense of identity dismantled many times in life, I understand Identity’s mechanisms and limitations, and its particularly tenuous relationship with ‘reality’.
So after saturating myself with all things Asperger, I’ve come to a point lately of stepping back and positioning autism within a much larger context of how I exist as a conscious biological unit. Over the years I arrived at a similar understanding of depression, in that I don’t define myself by it, I experience it, and it offers a lens to its own insights. I prefer to engage with information that has some practical application or usefulness in my life, and if I can’t make use of it I will tend to assimilate and move my focus to whatever comes next. The insights I’ve gained via the Aspergers ‘map’ have certainly provided a new context for my creativity. It has influenced all the music I’ve recorded since 2018’s Asp Burger album, inspired me to find a voice in writing, and motivated me to completely reinvent my long-abandoned website into its current form as an autistically-creative archive.
Now that I have this awareness of myself, there’s no turning it off, but I find it useful to also be able to say to myself “Ok, you’re autistic – so what?”. This is simply acknowledging that the Aspergers map of Self is one of many doors to my own perceptions.