If Not Now, When?

If not now, when?

(TLDR: I was diagnosed with autism at age 42; my life finally makes more sense.)

I’ve been trying to write this for two years. Every time I’d sit down to write, words go blank. Blinking Cursor Syndrome. 

For two years, I’ve been marinating and digesting and metabolizing (and hardcore gaslighting myself): Is this right? No it can’t be. Yes of course I am. Duh. Why did this take so effing long? Why didn’t anyone else notice? Wait, there’s no way. Can I be? I think I might be. No way. Actually, this makes total sense. I think I am. Yes, I am.

I am autistic.

Two years ago at age 42, I was diagnosed with autism.

You know those colorful plastic toys toddlers play with to learn about shapes? A star, a circle, a square, and a triangle all must fit correctly inside their base? 

I had this very clear visual of those plastic shapes falling immediately into place the moment my evaluator said the words “autism spectrum disorder” after completing an *intense* and ridiculously comprehensive evaluation (and yes, I think in pictures. Just like Temple Grandin. And no, I don’t think of myself as having a disorder. That’s fodder for another time).  

Even though I’ve always had significant sensory processing challenges, I also had a knowing it went much deeper than that. I just never saw myself represented, so why would I think this would be a reasonable explanation?

So many of my challenges, mental health struggles, peccadilloes and medical issues (and gifts! also fodder for another time) fit under the wider umbrella of autism: 

Why making eye contact is often painfully exhausting, difficult, if not impossible some days 

Why I’d completely lose my s**t as a kid when a spoon dropped on the floor, resulting in me covering my ears, crying, rocking back and forth for hours in a dark bedroom. Rinse, repeat 

Why bright lights and unexpected loud sounds can cause this grown-as* woman to have a total meltdown in public like a 2 year old

Why I can hyperfocus for hours, and hours, and hours

Why I’d completely disassociate from myself in order to go to loud concerts, often resulting in an epic sensory hangover for days or weeks 

Why I have to plan my errands and teaching schedule based on where the sun is located, and corresponding with traffic patterns

Why I often can’t talk after being among a even a small group of people

Why I go out of my way to cross the street to avoid walking past someone on the sidewalk

Why I script even the most mundane, low-stakes conversations in advance, often creating dozens of multiple scenarios ala choose your own adventure, to prepare for any and all possible situations

Why I totally blew a huge pitch to investors in epic fashion, in front of my boss, for the curriculum that *I* spent years researching and writing, due to a profoundly embarrassing shutdown (could’t talk, blank stare, became nonspeaking, the works)

Why I’ve completely melted down in front of my students on countless occasions, a few times screaming and running out of the classroom in tears

Why parking lots, leaf blowers, and automatic flush toilets are the devil incarnate

Why I’ve spent so much of my life eating my feelings to cope with feeling  profoundly broken and alone in my experience

Why I’ve struggled with eczema, digestive and mental health challenges (gut-brain connection)

Why my need for perfection, overachieving, and chasing scholarships and accolades were a sly cover, hiding the above aspects of myself I didn’t want anyone else to know about

The list goes on. And on.

The pieces just fit, effortlessly. For 42 years I’ve been forcing the triangle inside the circle, the square inside the triangle, the star inside the square. I’d do my best - often jamming them in to somehow make it work, hurting myself in the process — but they never quite fit right. 

Until that moment. 

And I’ve never felt more validated in my life.

I didn’t get here overnight. It’s been a process. Yoga, meditation, a colleague, 3 betrayals, a cannabis doctor, and a podcast all led me here (fodder for a different time). I followed my intuition and, since I couldn’t figure it out myself, sought out a qualified healthcare professional to evaluate me (an enormous privilege, even more fodder for a later time). 

That was tricky enough, finding someone who actively reads current research, understands the complexity and nuances of working with a high performing, overachieving, epically(!) high masking yet exhausted 42-year old woman who didn’t fit a ‘traditional’ model of autism, yet also in all the ways, ticked every.single.box.

18 different evaluation metrics (18!) don’t lie. That’s 18 different methods the clinical psychologist used to conclude her findings: multiple hours-long interviews, multiple health questionnaires, a lot of multiple choice tests, a whole bunch of short response essays, some long response essays, role plays, the list goes on. It was intense. 

But the most important piece of that evaluation: she asked how the diagnosis landed for me, that it’s up to me to decide if it fits. Mind. Blown. And yes, it most certainly fits. 10000%.

For two years, I’ve been sitting with what this new identity means. And I have some thoughts. 

•  It took 42 years to get an accurate diagnosis because, the patriarchy. I don’t fit the typical (outdated and in many ways problematic) diagnostic criteria in the DSM. Girls and women often present differently than boys and men, and haven’t been included in the vast majority of clinic research studies (let alone folks who aren’t white). So why would anyone think a girl who doesn’t always present with ‘classical symptoms’ be autistic? Read that again.

• Out of survival I’ve had to learn to mask, expertly, to wear a different persona to fit the circumstance. Yes we all do this to an extent; it’s called code-switching. But I’m talking about something different. In order to fit in and survive, you have to learn to mimic ‘normal’ or ‘acceptable’ behavior and submerge so much of who you are to avoid being stigmatized and rejected by the tribe. It’s like having a mask on 24 hours/day, and forgetting who’s the one wearing it. Add the complexities of trauma, it’s no wonder it wasn’t so clear cut.

• I slowly started sharing this information with various people in different social groups to beta-test responses, gauging who was safe to tell, and if it was even safe to disclose this information in the first place. And wow was I surprised by what I learned:

Some folks have been wonderful - thanked me for sharing, acknowledged how strange it must feel in midlife to learn this about myself, then continued with the conversation or relationship as normal. Among the best responses: 

1. Yeah, not really surprising - that makes sense.
2. Congrats on finding this out about yourself, I’m so happy for you!
3. This is a big deal - how empowering, and I assume validating! What does it feel like for you?
4. You’re still the same person I knew you to be 30 seconds ago, you’re just more yourself, and even more awesome.

Skillful responses.

Not so skillful responses: 

1. No you’re not.
2. You can’t be, you’re nothing like my friend’s son.
3. You’re too successful, there’s no way. Aren’t you being a little dramatic?
4. Aren’t we all a little autistic? (This one’s my favorite. No, we are not all a little autistic. Please, don’t say this.)
5. I feel that way sometimes. I think I must also be autistic (.. you very may well be. AND, also, it’s nowhere near as simple as that. At all.)
6. (tone of voice completely changed, slowed their speech, tilted their head to one side, took my hand, and said in a very loud - yes very loud - voice in the most condescending way possible) Oh, you’re so brave, dear.

I don’t blame them; I didn’t fit their image of what autism looks like (what does it look like, anyway?) Cognitive dissonance.

Still, please. Don’t be like these people. 

A diagnosis can be tricky. On one hand, a diagnosis is necessary to provide a frame of reference, a treatment plan, a course of action, an explanation. I find this to be profoundly helpful. 

AND, a diagnosis can also be profoundly limiting. We may begin to over-identify solely as this new thing, and we forget the whole picture of who we are outside of a diagnosis. A diagnosis often becomes our identity, if we get attached to it. As we tend to do.

And this culture loves to pathologize every.thing. I am a person, not a diagnosis. AND, I am also an autistic person. AND, I am so much more than any of these things. AND my deepest Self is also none of these things. All can exist simultaneously.

Nothing has changed, yet EVERYTHING has changed. The past few years I’ve been asking myself, who the F *am* I? The frame of reference I created to make sense of my life has turned completely upside down. It’s like my life took a sharp right turn - in the right direction. 

I see things so much clearer now: 

• confusing conversations I remember from 25 years ago
• misunderstandings and stupid conflicts with people
• questionable situations I put myself in
• why I’ve had to work so hard to understand the definition of inference
• … all of it. 

We can’t necessarily rewrite the past but we can certainly rewrite our interpretation of it with a fresh lens. With a wee-bit of self-compassion along the way. Because goodness, if I knew then what I know now … 

I am capital-E Exhausted. For my whole life I’ve been carrying a dark secret  about my ‘sensitivities’ that nobody can know about because it’s too shameful, and to protect my professionalism at *all* costs (‘always present yourself as strong, articulate, accomplished, and nobody will ever find out you had the world’s most embarrassing meltdown in the grocery store yesterday’). 

I just can’t carry this weight anymore. And you know what? I don’t care. Secret’s out. Autism is not a dirty word, and I’m (practicing?) not feeling shame. We all have stuff we deal with. I bet your stuff is pretty gnarly, too. 

So why am I sharing any of this with you? Well, frankly I wrote this for myself. It’s just something I had to do. Being vulnerable with myself, let alone with others, has often been a Herculean effort. Even more so, not diminishing my experience  as unworthy, or worse: not real, or invalid, as so many women are trained to do since birth.

So after sitting with it, here’s where I landed: 

1. Why *wouldn’t* I share this? It may be of benefit to you in some way, however it might land. When we practice sharing a piece of ourselves by being vulnerable, we cultivate space for others to do the same. (btw, vulnerability is different than over-sharing, I’m learning. Big difference.)
2. After a lifetime of believing that my experience doesn’t matter - that my voice doesn’t matter - it’s a radical act to share all of this with you fine folks. For no other reason than to say ‘this is real, and this is valid’.
3. I also share this as an invitation: to please gently challenge our assumptions about how we stigmatize and stereotype folks using outdated frameworks. I sure have been …
4. And most of all, I share from a place of absolute, unmistakeable urgency: Start with the end in mind. I don’t want to reach the end of my life wondering what else might have been possible if I didn’t spend so much of it desperately trying to run away from myself, of being so deeply, *deeply* disconnected from myself. You?

I can’t think of a better gift to offer myself than the gift of Truth, and sharing that Truth. Time to wake the F up. For real. There’s no dress rehearsal, as they say.

Sincerity and authenticity only go so far if we’re also hiding a foundational aspect of ourselves. If I live behind the safety of walls and can’t be honest and open and trusting with myself, how can I ever expect others to be the same with me? *Especially* as a yoga therapist…

As I ask the big question, ‘How do I want to spend my time here?’ there’s been some big grief as I unravel the answer. A lot. And a lot of relief. And, dare I say, optimism? 

Hiding the big life-changing stuff, with no one to share with, is a very lonely existence. This serves nobody, least of all ourselves. Ask me how I know.

So if not now, when? 

Sat Nam  

- Breanne