I haven’t typed a journal entry in awhile. But my hope in doing it this way is to capture some of the helpful things I’ve integrated into my life to support autism and Ehlers-Danlos syndrome. 

The reality for me is that I developed all of my support systems and ways of caring for myself through years and years of trial and error. I did not know how autistic I was until a few months ago. Likewise with Ehlers-Danlos. I remember at one point even referring to myself as autistic but more ADHD- thinking there’s no way I’m as autistic as other autistic people. 

I think that’s what made the final realization slow to really set through all of the layers of “I can’t be that bad.’ and ‘I look normal.’” But those are actually just thoughts I’ve absorbed from other people unknowingly expressing ableism.

Ableism is a sneaky thing, too. Just this morning while I was preparing my breakfast, I made the connection between the similar experience I have with people close to me telling me to “pull up my boot straps” in terms of my disability as if I didn’t already have them yanked to my chin. 

The truth is, I could not pull my bootstraps any higher if I tried. Things like working and feeding myself were undeniably more of an uphill battle than many people around me. But this wasn’t easy to see because I experienced so much shame that I dedicated most of my life to mastering systems that kept these things in place as much as possible. 

Even with all the education, intuition, perseverance and levels of personal mastery, I’m still swinging into overstimulation, anxiety, the inability to eat as much as I really need to, and hold a job. 

I don’t think people know how much shame can be sitting inside someone. It’s not obvious to see from the outside, at all.

I read something once that said “high functioning” doesn’t mean you can take care of yourself, it just means you’re less of a burden to other people. 

I would agree with that. I’m either disregarded as “not looking autistic” or being “high functioning” but then the target of ableist comments and ignorant projections later. The people who think they’re encouraging you by saying “you’re not disabled!!” are usually the ones who are confused and frustrated when they witness an autistic breakdown later.

Trying to communicate openly and honestly about my differences has also led me into the bear trap of “but you’re not using it as an excuse, right?” Which I won’t even say anything about because my blood still boils too much for me to find the words.

Or- “I wouldn’t want to know if I’m autistic” because some people think if they don’t know about it- it goes away or becomes more manageable in denial.

I had one friend at work confirm that I am in fact, “very fucked up”- referring to the undeniable presence of autism that flashes careful masks worn in public. I had considered him to be like a close work friend or safe person and was relieved to finally be somewhat seen or validated in terms of what I was juggling- shifting in and out of highly masked adaptations to the world around me. If only the way it was expressed was more conscious.

I try not to take things personally but let’s be real- the sounds around me become my internal soundtrack. I think this is true for anyone but especially potent with neurodivergent people who experience rejection sensitivity dysphoria. 

I constantly excuse the behaviors of other people because I can identify, empathize, and understand them because of my insane pattern recognition and life-long special interest of human behavior. 

It’s been a doozy, to say the least. All of it- 

Not knowing what was going on.

Knowing what was going on….

And processing it all.  

There’s been a multitude of relief, understanding, validation, frustration, grief, and skill regression. My patience and my practice of radical acceptance has been tested within myself. 

Because where can you go? 

Nowhere. 

Maybe this is why we, as a species, can be so avoidant, because we are essentially trapped in ourselves. 

In our physical experience, whatever that looks like.

In our emotional experience, whatever that looks like.

And within our conscience- however that looks, too.

This is why coming “back into” the body after a long time in a dissociative or survival state can be so overwhelming, too.

These are the things I observe, think about and make connections between without even realizing. I have an incredibly hungry, philosophical, analytical, and curious mind. This can naturally remove me from my body, my felt experience and sensations.

This is why things like meditation, breathwork, yoga, strength training and movement as a whole are so necessary for me. They bring me back in- integrating wisdom into the body.

Or else there’s a massive disconnect between intellect and felt experience… 

Which is like being overstimulated by knowing how to do better but physically being unable to integrate it into the body and actually implement known tools, practices and regulation.

Like knowing everything about the nervous system- but still getting stuck in its states.

We need to move wisdom into the body and FROM the body because let’s be real-

What’s wiser than our heart? 

Just like we need to move things OUT of and away from the body.

We are meant to move. Not just for the physical- but for the emotional, mental, and spiritual bodies as well. It’s all connected.

It’s all connected.
This is clarity. It is not always constant.

We can arrive at this place of clarity in regular meditation, movement, and connecting to nature. Or better yet, by combining all three.

These are the things that have made my life not just manageable but purposeful- even when some days feel downright more disabled and difficult than others.

Having a connection to something greater and a deeper knowing of ourselves and the world around us is both inherently grounding and liberating all at once. 

I will never stop recommending more ways to love and connect with ourselves and leading by example. 

Isn’t this what we came here for? For something greater than we have been told?

Perhaps, a felt experience, a connection with the world, its inhabitants and its elements until we are returned both to its soil and the energy that sources us?

And at this point- of feeling, experiencing, loving, living and dying…

Who is autistic then? 

Where are the bootstraps through these?

What if we all just started allowing?

Allowing the truths and lies and labels we’ve been told about life all to exist?

Facing things like ourselves, each other and even death undenying-ly so we can see what they all teach us about life?

Looking into each other’s eyes to see how we REALLY are beyond just asking?

Loving and living like we don’t get to do it again- honoring every unrepeatable second begging radical acceptance, forgiveness, experience and reckless abandon of every idea that holds us back from fully experiencing?

This, to me, is a liberation that single-handedly guides us beyond limiting systems of fear, belief, and ignorance such as ableism, racism, homophobia, and so many more ways of projecting the unhealed parts of ourselves onto someone else.

To see everything as one- 

All different strokes of color on a the same canvas-

In each color is a call to celebrate all kinds of people and ways of thinking and doing, feeling and expressing.

There is no wrong. There is only a multitude of experiences and truth and they all get to exist. 

So why would I need to use my autism or anything as an excuse?

An excuse from what?

Not much pervades my consciousness and self-responsibility.

These things are on overdrive and can actually hold me back, cause me to overinternalize and even catastrophize.

I’ve got nothing to run from and I know I will be navigating some things in dimly lit rooms where others have light. And I know I will have more light in some rooms that others, too.

Learning who we are and how we function is liberating- I don’t care what anyone says. It’s necessary and liberating, or at least has been in my experience.

If you relate to any of this- I encourage you to give yourself credit for fighting battles no one else sees.

You are SO not alone.