Integrating Into An Autistic Life, Part One
3 years post diagnosis reflections + resources for those who are exploring their neurodivergence
Art: Gilbert Williams
It was September of 2021 when I received my official autism diagnosis, but it was April of that same year when it dawned upon me, while I was up late researching my new special interest (autism traits in women), that I was amongst a legion of adults who had flown for decades under the radar. April happens to be Autism Awareness Month - something I of course did not know, as I was severely undereducated in everything having to do with neurodivergence.
That changed quickly, almost overnight. When something becomes your special interest, you consume every possible morsel and crumb of information you can on the subject, often denying yourself any real sustenance in the process. The information itself is your nourishment. Your brain grows feverish and perceptibly hot to the touch (much like a computer that desperately needs a break). But it’s too exciting, too mind-boggling, to stop. By the time September came and I walked out of the appointment with the psychologist holding the stamp that officially labelled me as neurodivergent, I was already well upon the journey of understanding everything there is to know about being autistic.
And of course, I wasn’t learning from scratch. None of us are. As much as we are all individuals with our own experiences, likes and dislikes, talents and challenges, there is a thread that weaves through us all, binding us together.
Here are the results I got on the two main self-tests I did, which you also can do from the comfort of your own computer at home. These tests are not meant to replace an official autism diagnosis, but they are helpful in completing out the picture of neurodivergence if you feel like you are somewhere on the spectrum. As I always say, self-diagnosis is also valid, and sometimes these tests can be enough to validate what you’ve suspected.
The first test is from IDR Labs. It gives you a sense of the characteristics of autism to the degree that they are expressed in you. Most people think that autism is on a spectrum that is a line:
And while the levels are a part of the diagnostic process, it’s not that simple. Here’s my result from the colour wheel:
(Hehe at the aggression *shrug*. I swear I’m working on it!)
If I were making these tests I’d add a few more fields in there, but the point is that all autistic people are going to have some level of each of these pie slices. This is what binds us together.
Just for fun, here was my other result from the RAADS-R test which you can also do at home:
That April evening 3 years ago, I sat with my jaw agape and it was very much like my life flashed before my eyes. And it continued to do so for a long time afterwards.
I’m going to share with you now excerpts from the prologue to the first draft of my memoir, as it details the burnout I experienced that lead up to me receiving my autism diagnosis, and the sheer exhaustion afterwards. As much as there was some joy to the self-discovery process, there was a an entire ocean of unpacking to do.
“It wasn’t until about a year into my autism diagnosis that I began understanding just how autistic I am, and always have been. Upon receiving my diagnosis, and for many moons afterward, I had this nebulous yet palpable feeling that nothing had changed about my life and my self-view, yet everything had changed. It was surreal and I couldn’t quite grasp it. It was a cloudscape that was, by nature, forever shifting, coalescing and dispersing just out of reach, despite the fact that it resided deep within my marrow and neural highways.
I suppose I had expected life to just stop - even for a while - when this news landed at my feet. I expected things to shift internally in a way that finally made sense. I even, on some level, expected the misunderstandings and social, sensory and executive functioning difficulties that I’ve experienced my entire life to dissipate. I expected ableism to cease. Or, at least, all of this was a profound hope - because after a lifetime of strain without a name, weariness is beyond description.
My mother had gifted me a book in 2020, a year before my autism diagnosis, called Birds Art Life by Kyo Maclear. In it, there is a passage where the author is describing a ‘lull’ period in her life and she references something a fellow writer, scholar and queer theorist once said. “Eve Sedgwick, in therapy for depression after cancer treatment, has a moment of realization: ‘I’ve figured out what it means when I complain to you about things,’ she tells her therapist. ‘Or to anybody. When I tell you how bad it is, how hard I’ve worked at something, how much I’ve been through, there is only one phrase I want to hear. Which is: ‘That’s enough. You can stop now.’”
I remember when I read this passage my heart jerked to the left and then deflated. I sat in the shrivelled balloon of my weariness and cried. That was it - that was the permission I was seeking from the world and from myself. I wanted so badly for someone, anyone, to come up to me, rest their warm hand on my shoulder and say, you can stop now. You’ve done enough. I didn’t care who it was that said it, I would gratefully take the permission from anywhere and anyone. It was painful to know that life just simply doesn’t work this way - that there was not some kind of oracle-type video game character who would instantly recognize the exhaustion and sadness in your face and relieve you from your burdens. An entity that was aware of just how fucking hard you’ve tried throughout your life to do everything, and have found yourself stuck in one of those nightmares where you can’t scream, the hallway in front of you keeps getting longer, no matter what you do you can’t reach your destination, and all of your movements are slow and weak like molasses. This eternally kind character would smile and grant you the most refreshing, rejuvenating slumber you’ve ever experienced, for as long as you wanted it.
When I read that passage years ago, it made me realize how tired I was - bone tired. Marrow tired. Soul tired. So when, a year later, I received my autism diagnosis, you can perhaps imagine the pure energetic deficit I had entered.
What I found on the other side of my diagnosis, despite support from good friends and a growing inner sense of permission to unpack myself and figure out just who I really am, was that now, I only had a name for the strain I was always experiencing, I didn’t have the tools to manage or even really understand them. And it certainly was not a magic bullet for correcting the misunderstandings that often occur in my relationships, or the ways in which I am at odds with the world. Although I was beginning to make more room for my needs as an autistic person (and a severely burnt out one at that), I was, in many ways, more confused than ever.”
Stay tuned for part two, coming soon.
If you can swing a paid subscription for 5$ a month that would mean the world to me.
Until next time, love and wolves.
D xx