Updated: Jan 27, 2022
Note: This post was written a couple of months ago, but I couldn't bring myself to publish. At the time I couldn't see the creeping burnout looming but have since given myself my own space to reset. And pause. And value my own self-care. Now I am ready to share.
Not so long ago, I offered a ‘space’ (meeting space) for Neurodivergent student social workers I work with, and it has drawn me down a bit of a self-reflective path around my own post-diagnosis position. It was a brilliant space, watching my students tentatively explore different aspects of being Autistic, such as being a student in higher education, and being a student social worker. But there was one comment that threw me more than I realised.
How far have we come, really?
At the start of my first workshop for this year's cohort, I openly shared my Autistic identity and offered an authentic stance on my experience of learning differently. A student later stated that they had never heard anyone “own” their Autism like that. Later in the Neurodivergence group, the discussion turned to anxiety about disclosing to employers or university, as they didn’t want to be seen as incompetent.
Now this anxiety about disclosure or ‘incompetence’ narrative isn’t a revelation for me and certainly mirrors my lived experience over my lifetime to date. However, it was the realisation that these students happened to be over 20 years younger than me, had been diagnosed at an earlier age than me and, as we discussed, aware of, and with access to, a far wider and informed knowledge base of resources to explore and understand their own Autism that I had ever had at their life stage.
And yet the ‘message’ still appeared the same. Stigma, shame, masking, and Imposter Syndrome were still dominant. I felt an overwhelming sense of disappointment, sadness, despair, and other unnamed feelings as I listened, and then reflected, once the ‘get together’ had ended. What had made me feel such hope that their experiences, or their expectations may have differed from mine? I guess it was the prevalent Autistic advocates who brilliantly share their views and educate on social media. It could also possibly be the creeping awareness of at least some aspects of Autism within general society.
And yet this progress clearly isn’t enough. It only gets so far. In reality, this awareness doesn’t translate to inclusion and, even for my new students, this was apparent.
Looking back to face forward
I have a plan about how I aim to enable greater inclusion in social work practice for Autistic social workers, but that is a story for another time. For this reflective space, I thought about what, as an older Autistic, makes me feel OK about shouting, about affecting change, and about not fading quietly into the background to make everyone else feel less uncomfortable.
I was diagnosed Autistic as an adult, but I’d always known I was different and, as I moved into adolescence, that Autism fitted the bill. As I was growing up, Autism was associated with stupidity, an insult, a person of lesser worth. It was used as a term of ridicule and otherwise not openly spoken about.
My battle to get diagnosed was a long and painful one but it was important to me. Not because I didn’t think I was Autistic unless I had a label; but because it proved and validated what I had deduced all those years ago. All those years of hiding and of failing miserably through the various social dances and games. I sought to survive, and adapted who I was on the outside, which inevitably seeped into my sense of self. The reinforced messages to “fit in” or be ostracised were perpetuated daily in many different contexts. Ones I simply could not understand or relate to.
My childhood wasn’t pretty. My adolescence was one long survival strategy, and one I almost lost several times. My early adulthood was perhaps my most painful. To be able to eat, be housed and to make a living required many aspects of myself I was not understanding or managing. I was exploited. I was harmed. I was hospitalised several times. I was, quite frankly, a non-person.
In some sense, these wonderful students had succeeded far better than I had at their age. They were talking about Autism, they were open to the positives and the strengths that, even if not yet identified, were possible to develop in them, and with a motivation to be the best or favourite self they could be. They had hope.
My hope had been that society had moved a little further down the inclusion path. And it clearly hadn’t.
So, where am I now?
Yet here I am, I’m doing pretty good at the moment. I have a family. I have a successful and sustained career in a job I am passionate about. I’ve worked hard and discovered I was a stubborn sod and used my defiance to demand (whatever needed demanding), to my advantage. I proved people wrong but always battling tasks, people and attitudes takes its toll. I must admit, especially with the current atmosphere of Spectrum10k looming its ugly form over the Autistic community, I am battle weary. We are still fighting the same battles in the same war. It’s easy to feel we are losing sometimes, especially when energy is low.
I started thinking about being an older Autistic adult. It’s a bit of an unknown territory to be honest. There’s very little written and researched about us more mature bunch, not sure I am mature but well, it will do for now! We know we have a lower life expectancy than the general public. Typically, clinical research tells us that we are more likely to have co-occurring health conditions that impact on our daily living and there are a few papers that like to disagree over whether we “improve” in terms of Autistic traits (yuk), or we just get better at managing them (hmmmmm).
Older and wiser?
So, what have I noticed? Well, my sensory sensitivities are definitely increasing. I find driving in the dark painful as I try to avoid the glare of headlights and streetlights against the dark roads. I have developed much more acute tactile sensitivity; heat is horrendous, and I have become much more fixed on specific foods than I was when in my 20s or 30s. Recognising people is a
I’ve also noticed my need to stim, and my more apparent verbal stimming, increasing with age. My executive functioning is pretty good at work with my routines, strategies, and role definition, but a bit of a non-starter in my personal life. Most noticeably for me though is my difficulty in being able to speak when in a context of challenge. Before this was less of an issue. Or so I thought.
So, I’ve reflected on why this could be – for me. Of course, age biologically in itself is a factor. As could be hormones. Getting older sucks sometimes in that respect. But it doesn’t feel like this is the only reason. There is something else. I wondered about my identity journey and whether that has enabled me to begin to care less about the attitudes, misconceptions, or ignorance of others.
As I get older, I am someone with experience, with knowledge of the world, with a job title, and all of this incurs a sense of power over those who haven’t, or don’t. Am I holding my power of Autistic knowledge over others to enable me to be more of my true self? Am I using the power of being older to my advantage, without being aware I’m doing that?
However, does that new position of power actually make Autistic experience harder – now it’s out in the open, un-masked? Am I more self-aware? Am I recognising issues that I hadn’t realised before and how they impact on me (tired, depressed, excluded etc)? Am I re-evaluating the “problem” and as such identifying new issues to be explored? Am I truly awakening, with everything that entails?
So, my battle is changing. I am awake with the wonderful self- awareness of me, that is being invited by less motivation to “fit in” and toe the line. Which in turn brings newer challenges of managing self-awareness and attunement to new things. I am saying “F**k you” to the demand and in turn bringing new challenges to deal with! Its actually quite a driver. For two reasons.
Reason one. I am going to get older (hopefully). To date, research on older adults is sparse. We have no economic validity. We are not worth as much as a younger adult. Generally, in Western society, that is true of all older adults. With Autism we sit with greater disadvantage as our social capital was never really there en masse despite the strengths we know we have. So, one day, if I surpass the average life expectancy age, I won’t have the self-reclaimed power I have now (or like to think I have). People will be less likely to listen. I will have less opportunity to act. So, I better do it now.
So, reason two, what about my social work students? Recognising and responding to need, I created that communication space to share knowledge, to empower and to create a safe haven within the often-hostile world of academia and work. I hope I’m sharing my power. I hope these students will not wait 20 years to proudly, and publicly, own their Autism, like me. My dream is that they develop their own styles and identities based on their own selves and not what they think others want; that they can maintain a balance between confidence, authenticity and doing what they do well. Essentially that includes their social work practice. They, in turn model for others, without a sense of trepidation or fear, how to proactively change the dominant discourse of Autism in not just social work but with other agencies and most importantly with the families with which they are working.
I may not achieve all my Autism inclusion goals. I may not see a massive societal change in my lifetime. But I feel a duty to the next Autistic generation to keep exploring, offering, and empowering because, as that famous cosmetic brand once declared, they’re worth it. They are my future. And I believe in them.