No longer trying to be neurotypical
Unmasking and the 10 of cups for autistic pride day:: ORIGINALLY PUBLISHED ON JUNE 26th 2024
Dear soft heart,
In the past 9 or 10 months, I have been through hell and back with acute autistic burn out. I have written a series that will come out on it in the summer at some point (when I am brave enough to press PUBLISH on it ahh!).
One thing I have realized is that as long as I was trying to keep up with a neurotypical pace of life in any area of my life, whether that was in family responsibilities, friendships, a romantic relationship, or my business, I was going to end up in burn out eventually. This is because masking is a huge contributing factor to autistic burn out. And in fact, I was going to end up in autistic burn out quicker if I was trying to pull off a neurotypical pace of life in multiple areas of my life. Equally, I was also going to have a really hard time getting out of this autistic burn out if I was still aiming to keep up with an allistic way of life. Allistic if you’re unfamiliar means non-autistic. Masking in the autistic context is essentially trying to keep up as though you are allistic when you’re not – it looks like hiding what you find difficult and intolerable that your allistic counterparts do not find difficult, and even hiding what you find really easy that the norm finds hard to pull off. Masking has 3 categories that you can dive more into on the CAT-Q here1. Those three components are explained there as follows:
1. Compensation — Strategies used to actively compensate for difficulties in social situations. Examples: copying body language and facial expressions, learning social cues from movies and books.
2. Masking — Strategies used to hide autistic characteristics or portray a non-autistic persona. Examples: adjusting face and body to appear confident and/or relaxed, forcing eye contact.
3. Assimilation —Strategies used to try to fit in with others in social situations. Examples: Putting on an act, avoiding or forcing interactions with others.
I scored 151 on my CAT-Q. The average score of an autistic female on the CAT-Q currently sits at 124.35, and for non binary folks it’s at 122 and for men it’s at 109.64. Sufficient to say, I am quite excellent at masking.
My letting go of trying to be able to keep up with a neurotypical pace forevermore feels a little bit like when I came out as queer at the end of 2018. This is 5 and a half years ago now, when I gave up on the ‘husband and kids’ marathon. I was like, well what am I supposed to do with my life now? If I am not aiming to find a husband and get married and have kids, what are my personal goals in life as a woman? I centered most of my goals around my creativity at this time and I achieved most of those goals in the last 5 years and a bit, and I have more now that I want to do too (I am writing my debut fiction). But the whole trying to be able to keep up with neurotypical life dates even longer and goes even deeper for me than the impulse to find a husband and have kids. I truly feel like what the hell am I supposed to do if I am not trying to attempt and succeed at keeping up with the neurotype that is not my own?
I am very moved by the work of Sophie Strand2, she is so brilliant in general, but also, I think I feel a sense of deep recognition in her story. We share a lot of similarities, things like age, childhood trauma, diagnosis, some interests, etc. I was listening to a podcast she was on, on the SAND podcast3, in which she muses about how she asked a scientist friend of hers who studies patterns of nature, and how they get stronger over time, how we change the patterns if the patterns are bad? What happens when the pattern needs to be changed, as in when the pattern isn’t working, and they said something along the lines of well that’s when a block happens, when something can’t happen, when there’s a disability, that’s when the pattern has to shift and has to experiment with something else. Sophie then goes on to say that of course we can look at these experimentations as disability, as something that is non normative, or wrong, but what she really feels they are, are invitations to experiment with other ways of being.
I’ve been thinking about this a lot since - the fact is disability often does inspire, if not force, a new way of being. Disability in my own life has inspired massive reimagining of how to do things, more gently, more effectively, more sensitively. Often disability can help others who are not disabled in the web of your life grow skills they would have otherwise missed. My therapist a few years ago suggested that my mom was learning things through my disability when all I felt was a burden. I had never considered that before. Since then, I have witnessed how other people around me have the possibility of learning qualities and skills through being a part of the experience, things such as patience, curiosity, open-mindedness, integrity, collaboration, intuition, dependability, and empathy.
I can only speak from my own experience of disability, which is autism, a dynamic disability4.
And I too learn a lot from my disability, for example the hardest one for me (and the one I need the most) is trust. I’ve also developed courage, humility, self-awareness and self-discipline and wisdom thanks to it, among many others things.
In this way, I see my disability as a highly spiritual thing. It invites me and ushers me into a new way of doing things like Sophie Strand proposes, and it also forms and develops qualities in myself and those who love me. Many religions try to install into their devotees these sorts of spiritual qualities that disability inherently teaches you.
Nowadays, I have been progressing in my understanding of how disability is not simply a burden. It is a multi-faceted life experience. I see value in it now in ways I didn’t previously. But for most of my life, I desperately wanted to escape my body and my experience. In fact, I spent many years comparing myself to colleagues and peers in various healing spaces whom healed their entire PTSD and I could not relate. Turns out, I probably also did heal my event PTSD (rape in my case), but I did not heal my autism. Because one cannot heal their autism.
Autism is not a mental health condition or an acquired disease stemming from pathogens, trauma or other issues, it’s the current name to describe a brain that develops atypically compared to the norm. The atypical development of the brain means that certain areas of it are going to be underdeveloped or overdeveloped compared to the standard norm as you go through developmental milestones, which is why many autistics have what is called a ‘spiky skill profile’5. What that can signify is that autistic folks can be way better at something for a certain age compared to their peers, and they can be way behind for a certain age compared to their peers. I was able to read at 3 years old for example (earlier than the norm), but I still struggle with severe attachment differences, such as separation anxiety in a way that is not ‘normal’ for an adult woman (later than the norm). My attachment is then called atypical – as in I never hit that developmental milestone on time or ‘correctly’ despite all the efforts to. It’s the 2e way, able to do amazing things but needing help with other elementary things, for example, self-regulation. It makes no sense without the context of autism. This is so evidently different than PTSD.
However, the tricky part about autism and PTSD is that there are similarities such as increased sensitivity to noise. The problem with my case was that even as I healed PTSD, my sensitivity to noise did not decrease ever. This made me feel that I was not healing my PTSD very well, because my peers who had PTSD and were not autistic would report ameliorating conditions around their tolerance to sensory things in their recovery. I could not report that back. I was dumbfounded and I internalized it as I wasn’t trying hard enough as I didn’t yet understand that my autism traits due to brain differences compared to the allistic population6 were separate to my PTSD symptoms.
That internalizing didn’t last very long though however, because it made no actual sense. I tried so damn hard to heal. At some point, it was probably unhealthy the amount of trying I was throwing at my healing. I was frantic until I figured it out, asking peers what they were doing that I was missing, and I would find out that they actually ‘tried’ less hard than me.
What I mean by that is that I had myself on the healthiest of diets, home conditions, lifestyles, sleep routines, everything. I didn’t even go close to a potential toxin for years. I was scared of Tylenol. I was so strict and rigid in my healing protocols that I often didn’t even have joy in my life – I’d feel guilty eating rice. In a lot of ways, this was probably disordered (something called orthorexia7), but I also have a lot of compassion for myself because aw, I just wanted to heal so damn bad. And to me healing, sadly, even though I didn’t have words for it at the time, meant being able to keep up with a neurotypical pace.
In worldview at the time, I was not healed until I could keep up with a neurotypical pace, so I was willing to try and do everything to get there.
At one point, during a colonic I realized I couldn’t say I haven’t tried. A colonic, if you are unfamiliar with such, is when a trained stranger puts a plastic tube up your arse hole and blasts water into your colon to cleanse it of toxins. Your poop literally travels down the tube into their waste system and with it is supposed to be bacteria, parasites, yeast, and the like. And then, after they remove the tube, you proceed to shit all the water out in a small room beside them that boosts a toilet.
I’ve drank heavy metal detox drinks daily for literal years, hoping I’d be able to get to it – the end result I really wanted – being able to keep up with the neurotypical pace. I have gotten legit ghost clearings, I have done *most* forms of therapy available and not just for a trial run. I don’t regret all the healing work I’ve done, and all I’ve invested into it, as I have gained so much from it all in ways that are forever going to be helpful for me, but I also didn’t fully understand that I was engaging with it with a goal in mind: to be normal finally. And I didn’t get there – you know to the neurotypical pace I really wanted to get to.
Part of this is that I wanted to belong, be like the rest of them, but a lot of this for me is also about safety. It makes me feel vulnerable to rely on others. Little to large scale. Accepting my disability meant accepting that I would need care in a lifelong way. Accepting my disability over the last year has meant that I have to come to terms with the fact that I cannot make it on my own and that terrifies me. I was hoping to ‘heal’ myself out of that. I often feel safest not relying on anyone and not needing anything that I can’t provide for myself because then I can’t get rejected, hurt, abused, criticized and the like. I am trying to avoid suffering by becoming neurotypical and able to follow the pace of one such person. It is a very self-loving pursuit, actually.
And while acknowledging that, I also got to thinking, what if my disability is a block inviting us to do things a different way. Nature’s way of inspiring a new way forward that would work better. What if what autism requires from us is teaching us something profound? I am not saying it’s easy nor fair nor even very pleasing. It is certainly nearly impossible under capitalism to survive and to keep surviving well or challenge free as an autistic person. I am scared for myself and my future very often. And I am also scared for many autistics alongside myself as we face increasing inflation, climate catastrophe, and potentially depending on your co-morbidities, increasing social barriers, and exclusion.
What I know for sure is that autism isn’t just trying to teach one person something. It perhaps is trying to teach a whole lineage something, a whole community something, a whole culture something if it is indeed a block in order to change a pattern that isn’t working. I’m sure also, that it’s not often regarded this way. And not everyone realizes what a gift it is, nor does everyone want to be taught a new way.
Spiritual truths can be inconvenient in this practical world. From a soul perspective, what an intense mission to take on, to have your body be a block in the larger whole, a chance for a micro few, including yourself, to change the faulty patterns of this world, to better certain existing ones, whether that be familial or ancestral or societal. Important nonetheless, I would argue.
Autism teaches me profound teamwork and ironically, it is not in any attempts to achieve a neurotypical norm that I find belonging or safety. It is in leaning into what autism asks of me. And it is in allowing others to lean into what my autism asks of them that I find it. I am lucky to know incredible intimacy because of it. All this collaboration is what the 10 of cups invites us to, and we witness and experience joy because of the teamwork.
The 10 of cups from the traditional Rider-Waite deck
I picked up a tiny little white flower that had a streak of purple on it that was growing in my grass the other day, and I thought, wow, nature knew how to make this little flower and the perfect little streaks that look painted on. I am sure there is a scientific reasoning to it all, and so I tell myself I will research it.
Later in my browser, I type, “Why are there color streaks on flowers?”.
When I do, I learn that this is to guide pollinators to the center of the flower where the nectar and pollen is. The stripes are literally called “nectar guides.”
And then I can’t help but think,
What if even if our lives are harder or cut shorter than most, autistic people, are also nectar guides? What if we are the guides to the center?
Happy autistic pride day :) (belated - as it was on June 18th.) 8
https://novopsych.com.au/assessments/formulation/camouflaging-autistic-traits-questionnaire-cat-q/
Ecology, Storytelling, Myth, and Science
Here is the interview I was mentioning with Sophie Strand on the SAND podcast.
“Autism is a “dynamic disability”. What this means is capacity and functioning are not concrete and may fluctuate dependent on factors such as environment, cognition, executive function, processing capacity, Interoception/exteroception, neuro-fatigue, anxiety, communication differences, burnout and sensory overwhelm. This means Autistics may be capable of a task one day, but unable to perform the task at another.”— Neurodiversally Unbroken, 2021, https://www.qmul.ac.uk/queenmaryacademy/educators/resources/inclusive-curriculum/neurodivergent-learners/advice-for-teaching-students-on-the-autistic-spectrum/
A beautiful in depth article about spiky profiles here: https://autismunderstood.co.uk/autistic-differences/spiky-profiles/#:~:text=When%20someone%20has%20a%20'spiky,really%20struggle%20with%20something%20else.
Abnormalities of intrinsic functional connectivity in autism spectrum: disordershttps://www.sciencedirect.com/science/article/abs/pii/S1053811909004327
From the NIH: Orthorexia nervosa is perhaps best summarized as an obsession with healthy eating with associated restrictive behaviors. However, the attempt to attain optimum health through attention to diet may lead to malnourishment, loss of relationships, and poor quality of life.
I enjoyed using the footnote feature that substack included on this essay. Fun! Hehe, until next time!