Today I found out that my friend Jill died in May of liver failure and breast cancer. Her sister contacted me when she saw my text message. I met Jill in 1987 in San Francisco, and she was one of those friends who you might not see a lot after you move across the country, but when you do it’s like no time at all has passed. She was at the last writing/yoga retreat I was able to lead in Westray in September 2019 before all hell broke loose. She booked the retreat even though she knew she had stage 4 breast cancer, because she made a decision she was going to live out her remaining time traveling anywhere she damn well wanted. The women from that retreat that I told about her death today all said they were so grateful to have met her, and mentioned her courage, her wicked sense of humor, and her incandescent writing, which we all wish she had had more time to complete.
This news coming on the year anniversary of the TIA (mini-stroke) that led me to the ER and then being hospitalized for a carotid artery dissection (thanks long haul COVID!)…is making me even more grateful to be alive, but also grateful for that time with Jill. I wish I had known how ill she was recently, though her sister assured me no one knew, not even her close friends. She was a brilliant masker. I get that. There is nothing scarier than letting anyone see how vulnerable you really are. And she just seemed to always be beating cancer’s ass. More fool me for believing her.
Right now, I am specifically grateful to Jill for a conversation we had in September in the dining room in the West Manse in Westray, where I seem to have had an inordinate number of life-changing experiences (see Kali in Westray for another). I was joking about being “on the spectrum,” as I had done all during my yoga teacher training that past June—in fact it was a running joke with my roommate at Kripalu. Jill, who was a nurse practitioner looked at me with this pursed lip, raised eyebrow patented look she had and said, “Well you knoooow, you do have some of the traits.” You know that feeling when you know in the pit of your stomach something is true but how could it be but it is…or the thing where the bottom falls out of your world and yet somehow everything is clear…that.
After doing some research, I began a process in January 2020 that did not culminate until April of this year in a formal diagnosis of autism. The already long diagnostic process began when COVID hit, so was delayed for over a year. I have known all along what the result would be, but did not want to tell anyone until I was sure. My husband and other close friends and family I have told have been overwhelmingly supportive, with one huge exception, a person who I would have put at bottom of list of people who would have an issue with this, but there you go. You don’t know until you know who will understand the deepest part of you that you have been unwittingly masking like a motherfucker for, well, your whole life.
I was wondering when I was going to make this public, especially since I am now writing a memoir that began as a yoga working through trauma memoir but has now morphed into a yoga working through trauma and finding out I have autism memoir, because that’s normal, right? Ha! But the calm I found after working through PTSD during my yoga teacher training is what made me receptive to what Jill said. That and the fact that I was once again face to face with how uncomfortable I am around most people, even in the intimacy of yoga teacher training aka the space alien effect. As in, who are all these people and how did I get dropped into this place and when will someone give me the guidebook to their strange ways? Not to mention the sense of always failing that accompanies this super comfortable feeling.
So, here I am now, disclosing my status to you. In case you are wondering about how they can tell when you are 57 and have somehow muscled through life relatively functional, trust me when I tell you the diagnostic process is endless and precise. And now that I am looking back at close to six decades of my life with this new/old information, so much that never made sense makes All the Sense. If on April 5 you heard the sound of pennies dropping somewhere—that was my stash. They all just…fell into place.
And it is SUCH A RELIEF. I am extraordinarily happy about this diagnosis, which is a privilege to have even accessed, given how little is understood still about how women present on the spectrum and how few specialists there are in the field of adult autism (even though there are over 5 million of us in the US alone). I was diagnosed with what used to be referred to as Asperger’s, but is now referred to as ASD Level 1. This is because of a number of factors, including Asperger’s ambiguous relationship to the Nazi regime in Austria and the desire to fold all the various forms of autism into a spectrum, since there are many ways it manifests. When you have met one autistic person, you have met one autistic person.
I am no expert in this field since I am still a newbie, but over the past year, and especially in the past few months, I have read a lot and connected with the extraordinary autistic community, where I have discovered the history of the diagnosis and treatment of autism. The best book for an overview is Neurotribes, which lays out the history precisely. I am here to tell you: it is dire and scary. I am grateful I was not diagnosed as a child, because all of the treatments then involved horrifying institutions and treatments that punished children for any "atypical" behavior. Most children died. The only children with good prognoses were taken back home by parents or caretakers who basically told the doctors to shove it and sorted it out on their own.
However, happily in the past 10-20 years a growing, a more vocal community of autistic adults has come together to self-advocate, including a great group called ASAN (whose motto is “nothing about us, without us” and reminds me of the autistic version of ACT-UP - and this comparison is apt since the same punishment treatment of autism called ABA was developed by the same geniuses who created gay conversion therapy). Autistic and neurodivergent rights in general I think are the next big civil rights issue.
There is a lot of misinformation out there and inaccurate stereotypes about autism, some perpetrated by groups purporting to speak for autistic people, but instead are speaking over and around us. I will address a few common stereotypes:
“Autistic people don’t have empathy”: Wrong. Most of us are so empathetic it hurts. What looks to neurotypicals like lack of empathy is actually an autistic person so overwhelmed with the feelings of another they may appear shut down, but instead they are processing a tsunami of sensation.
“Autistic people can’t be social”: Wrong. Autistic women and girls especially learn early on to mask any obvious autistic symptoms and find a way to fit into the neurotypical world through mimicry. What happens is over time the masking becomes untenable and causes all kinds of physical and mental health issues, which are far worse than living openly on the spectrum. (And yes, becoming a theater director was a brilliant strategy for me, because I looked socially competent while studying people behaving amongst one another. No, I did not know I was doing this, but now it is crystal clear.)
“Autistic people are not very smart”: Wrong again. As with any neurotype, there are various levels of intellectual skill. In many cases, however—especially with autistic people who need more support because perhaps they do not talk—they are actually very smart but need different ways to communicate. The advent of the iPad has meant the discovery of hidden internal worlds no one knew existed before. In terms of the super-smart, the estimate is that 82% of hyperlexic (super early readers, ages 1-3) are autistic.
I could go on, but the list is endless. You can look it up or talk to your teenagers or young adult friends. In general, there is more wisdom about ASD in Gen Z than Gen X, I can assure you. This is a situation where the younger someone is, the more clued in they are about able-ism (aka assuming the norm is better and anyone outside of it needs to conform) as a problem and neurodiversity (acceptance of and encouragement of people who perceive the world differently) as a good thing. Young autistic people not only refer to themselves as autistic but Autistic AF, which is awesome. I have been humbled and grateful to learn from them. Equally, I have been moved and relieved to connect with the many women my age (50+) who are considered the ‘lost generation’ and are only now being diagnosed. It’s like some kind of long put off reunion on the mothership we all kind of felt might be out there but weren’t sure would ever pick us up. When we were growing up the only diagnosis for us was: “You’re weird.” And that was the kindest moniker.
Finally, if you want the best resource for how trauma and autism relate, I suggest you mosey on over to the Trauma Geek website. She clarifies how healing trauma actually makes autistic traits more visible not less, because our trauma led us to suppress our traits. In the neurotypical world this might be seen as a good thing, but it is very bad for the autistic herself, leading to dissociation, shut down, and dangerous mental health issues.
The Trauma Geek site also clarified for me why working through my trauma made my autism came into focus. It’s like when I had a sprained ankle that wouldn’t heal until they finally found the fracture. Autistic is my factory setting, trauma is the default. You can change default settings, but not factory settings. And honestly, I would not want to do so. There are many gifts to being autistic, including extreme sensitivity (which can make sensory input hard but also means seeing beauty everywhere and feeling it to the bone), ability to laser focus (which is how I have accomplished all that I have in spite of a lot of trauma), an ethical compass that does not waver (see in re Great Thunberg), the ability to see patterns where others don’t (see my theater practice and much of my writing), and—as it turns out—a greater receptivity to many energy/spiritual practices such as yoga, meditation, reiki, qigong, etc., which is what has saved my autonomic nervous system this year, helping me heal from long haul COVID. This is why I have not had another TIA or dissection in my carotid artery. In other words, why I am still alive.
As many autistic self-advocates are now pointing out both in books and TED talks, the 'disability' of autism is not inherent to the condition of seeing, perceiving, and acting differently than what is considered normal, but instead we are dis-abled by having to navigate in a majority neurotypical world.
My life would be so much easier if no one ever turned on an overhead light ever, the sound was turned Down on everything, you told me directly what you need or want and don’t expect me to figure it out by inference, and if you don’t take offence or try to read something into what I have said when I do the same. If you think I am lying, you are wrong. I am not. This is the hardest thing for neurotypicals (NTs) to understand about actual autistics (AAs): we mean what we say. Because apparently most people think it makes sense to not say what they mean, so NTs assume we AAs are doing the same. We are not.
Examples:
AA says: “No worries if you can’t do x.”
NT hears: Oh, I have to do x or they will be upset. (then NT does x even if they don’t want to do x and resents it and AA is confused, since they sincerely meant you don’t have to do x)
OR
NT says: “No worries if you can’t do x.”
AA hears: No worries if you can’t do x (and perhaps does not do x leading to NT being angry and AA does not understand why).
On the other hand, if an AA says they are happy to do something for you, we actually Are! Or if we say let’s get together, we mean let’s get together. See how that works?! It’s magic! The irony here is we are considered the socially inept ones with poor communication skills. Womp. Womp.
There is a lot more to this subject, but hopefully this gives you an idea of the way this miscommunication works. And why knowing who I am now is such a relief. I no longer have to continue the Relentless Self Improvement Campaign, but can instead focus on self-acceptance and asking for what I actually need. I can explain to people, look this is how I’m wired, and I can stop assuming I am always in the wrong. This is a huge relief after 58 years of feeling like a walking mistake and trying to hide my perceived inadequacies all the time.
So, welcome to this new part of my journey! Anyone who already works with me knows I am quite good at holding space for people and an excellent listener (another autism stereotype demolished!), and I am still available to do all I do as a coach and teacher.
What I will be adding to my yoga teaching (when I get back to it) are autism and neurodivergent friendly classes. I have learned many somatic practices this year that have helped me move through most all of my post-COVID symptoms, and I am now talking with my autistic and other neurodiverse community about what can make yoga classes more inclusive and accessible. I was told during my training at Kriplu that making my classes open to anyone was my superpower as a teacher, and I agree.
I continue of course to be open and happy to work with writers of all kinds, because in the end, it’s not about neurotype but about being observant and having the desire to get past any and all assumptions and stereotypes that leads to writing that is worth a damn. I have always worked with a diverse group of writers and plan to continue. If you are neurodivergent and want to work with me, however, get in touch, because I have a lot to offer here, from a lifetime of experience navigating those waters.
If you have questions for me, yes you can ask, but first please look up the information that already exists about autism, especially in women. There are many websites easily accessible, such as ASAN, EmbraceASD, AANE, among others. A good resource is Jenara Nerenberg’s Divergent Mind and my favorite memoir about discovering autism later in life while doing something else to heal is Katherine May’s The Electricity of Every Living Thing.
But finally, I want to pay tribute again to my gorgeous, brilliant friend Jill who saw me more clearly than anyone else and lit a way down this path to personal enlightenment. I am so sorry I could not tell her about the diagnosis before she died, but I have a feeling she knows. The amazing photo on my website (and below) and the one at top of this post she took that same September in Orkney. She said, “Hey go up there onto the gun emplacement, I want to take some pictures of you. It’ll look great.”
You were right about that, too, Jill. Your vision was clear. I miss you.
