A new understanding: the lens of neurodivergence

What led me to getting diagnosed

So, I got diagnosed with autism at 33 years old.

It's been almost 3 months and I'm still processing the news. When I started looking into it, I doubted a lot, and people around me were quite skeptical too.

Before developing Long Covid, I looked like a functional adult. I graduated, worked full time, lived independently and was (and still am) in a stable relationship. From the outside, I looked successful. I was stressed and tired most of the time, but hey... we're all stressed and tired, right?!

But in the end, no one could see how much living a "normal" life was actually costing me.

How many days of school I had to miss just to get through the year.

The overwhelming anxiety that hijacks my brain whenever something is uncertain.

The immense relief that floods my body when a social event is cancelled.

The physical and sensory discomfort, sometimes to the point of fainting in public.

The desperate need to go home in my bubble of silence after each "normal" day at work, when everyone talks about going out and grabbing drinks.

How difficult eating out was because I couldn't cope with so many food textures, smells, and flavors.

And overall... The constant, utter exhaustion, and the feeling of having to push through life every single day.

At the same time, I also noticed some strengths that seemed unusually pronounced. My capacity to think in systems while still paying attention to details. My ability to focus endlessly on things I love and be super-efficient about them. My organization and structure skills. All of these were useful in lots of different contexts.

Note: Autism looks different for everyone. This is simply my personal experience, and what I feel comfortable sharing here.

I've been wondering what was wrong with me for more than 15 years. Why I couldn't just "be normal". Why I felt like being in social settings was a theater performance. Why living my life was so stressful every single day. It was like everyone had been given the rules of the game and a robust battery... except me.

I've seen a lot of therapists over the years and tried different therapy methods, including CBT. It was intellectually interesting, but I could never feel any relief in my body. It seemed like nothing would really scratch the surface of my struggles, despite my best efforts.

I felt like I was failing at therapy, and told myself it was probably my fault.

Not long before getting Covid, I'd reach a point where I didn't know what to try anymore, and I told myself that I would probably be exhausted, isolated and anxious for the rest of my life.

The tipping point

I ended up collapsing with Long Covid early 2024, and my life stopped (my Long Covid story is available here).

Putting aside the fact that it was the absolute most nightmarish experience I've ever been through, it did give me a unique opportunity to pause, and to focus on me.

I discovered mind-body work, nervous system regulation, and body-based approaches on my own (this is what this blog is about!). No therapist ever mentioned these to me before... And I was finally making real progress with my anxiety.

Anxiety had been my main diagnosis my entire life. I really thought that getting rid of it would solve all my issues. But as my anxiety improved, I realized that there was something else underneath. Something more structural. Less flexible. Something that felt like it was part of how I exist in the world.

I met a new therapist. After a while, he suggested that maybe, there was something more than "just anxiety".

What if it was autism?

I explored the idea, researched, asked myself a million questions. I oscillated between feeling incredibly hopeful, and incredibly doubtful.

But eventually, encouraged by my therapist (and by the fact that it was the first time in a decade of suffering that I had a new lead to explore), I booked an assessment.

The diagnosis rollercoaster

Before the assessment started, I prepared a list of all the things I struggle with, including the things that were compatible with autism. My inner critic was always in the back of my mind, accusing me of reveling in the Barnum effect and looking for excuses... but I decided to stop listening and to give this whole thing a chance.

After a long and emotionally challenging assessment process, the day came. And I heard the neuropsychologist say: "I'm not going to make you wait any longer, yes you present the traits of Autism Spectrum Disorder."

Relief came like a huge wave of warmth from inside.

She said a bunch of other things after that, but I don't really remember anything.

When I hung up the video call, I got up and just let joy take over.

For the next couple days, I stopped thinking about it altogether. It felt like a very comfortable mix of clarity and confidence. My brain decided to take a break.

In the following weeks, I started feeling my brain revisiting and reprocessing my entire life through the lens of autism. It was like a background task, with sudden "aha moments" where old memories suddenly resurfaced and finally made sense. I felt more tired and more sensitive for a while. But I also felt waves of self-love and self-compassion for the person I was, and the person I am today.

I know that some late diagnosed adults feel like they lost all those years without their diagnosis, and that their life could have been easier if they'd known earlier. I totally understand that feeling. But personally, I don't have any regrets about not being diagnosed sooner. I don't think I was ready to hear it before. And I also like to believe that everything happens for a reason at the right time in my life.

At some point though, the imposter syndrome hit me like a truck. Doubt was overwhelming.

As I was trying to learn more about autism, I also came across people defending ideas that only made those doubts worse. Some claimed that adults (especially women) are seeking diagnoses to "validate their personality flaws", and use it as an "excuse" to avoid working on themselves. Others argued that the rise in late diagnoses is mostly the result of autism becoming a "trend" on social media. I found these narratives incredibly harmful.

There's obviously a lot to say about this, and this isn't the right post to dive into it. But I truly don't think people go through an assessment process that can be emotionally demanding, expensive, and take months or even years simply because of an online trend. Assessments often come after a lifetime of trying to adapt and fit in, and sometimes, after burnout.

I'm still working through doubt sometimes, but I'm feeling more and more at peace with this diagnosis as time passes.

What the diagnosis changed for me

This diagnosis did a lot for me.
It actually changed everything.

It explains what never made sense, why classic therapy wasn't really helping, and probably partly why my body said stop after Covid (which was the final trigger on an already exhausted and over-adapted body and mind).

But most of all, it unlocked my access to true self compassion.

My diagnosis isn't and will never be an excuse to stop working on myself or a proof that I can't change anything (it's not in my DNA to stop moving anyway). It is quite the opposite! I thought the missing piece was me not trying hard enough... But I was missing a compass.

When you're lost at sea without one, you can paddle for hours, giving it everything you've got, only to realize you've been going in circles.

The understanding of how I function will allow me to build a life that actually works for me. There is still a lot of work to do, the diagnosis itself doesn't solve the problems, but it opens the door.

An important precision: Autism is a spectrum and my autistic traits are manageable with relatively small adaptations. I am able to take care of myself. Severe presentations of autism are a whole different world and I'm not pretending that my situation compares.

How this relates to my Long Covid journey

The suspicion and then the diagnosis actually came as one more element in my understanding of what Long Covid is for me.

I feel that this particular way my brain works leads naturally to greater hypervigilance, heightened sensitivity to many stimuli, an increased risk of trauma, social isolation, and so on. All of this can feed chronic dysregulation.

Because I was diagnosed late, I wasn't aware of any of this for most of my life, and I spent many years pushing through without the support I actually needed (sometimes even facing additional obstacles along the way).

I'm pretty convinced that this contributed to my body being more prone to tipping over following a massive physical stressor like Covid.

Conclusion

Before I got diagnosed, I spend a lot of time in online communities and heard a lot of (already diagnosed) people say things along the lines of: "The actual diagnosis doesn't really matter. What matters is accepting yourself as you are".

I agree with that to some degree: acceptance and self compassion matter a lot, eventually. But for many, the diagnosis has to come first, because it opens the door to a new understanding.

Getting diagnosed was incredibly important for me. It doesn't change who I am, or how my loved ones see me. It changes how I see myself and my relationship to the world and other people.

It is an important new step in my recovery, in finding peace with myself, and in building a life that finally fits who I am.