Diagnosis Decision Making

Writings from the in between

Remember how I said that I do not have a formal diagnosis of Autism?

(If you don’t, here’s where I said it)

It may have sounded like I was very sure of that decision. That it is a decision I have made.

It’s not. There’s a lot swirling around in my head and heart. The decision is not at all straight forward, and in fact, it’s messy and scratching at trauma.

I honestly believed that I’d been handling the heartache, managing the anger, and mostly healing over the wounds.

But unpacking my (potential) Autism and looking at my mask has made me realize that the scabs are thin and weak, and easily removed. Underneath there’s a well of deep sorrow, self loathing, and a whole lot of anger. Anger that has been coming out sideways for years.

Like how my partner often feels he is being yelled at, but in my ears I’m simply having a ‘normal’ disagreement and a well toned and respectful argument. Or when I’m engaged in a well meaning debate or exchange of ideas, I often feel attacked but in reality I am experiencing the rising defensiveness of the other person, who feels attacked by my heat. Or when I speak of my passions or feel impassioned in a moment, it often comes out aggressively and harsh, wildly opinionated and stubborn, even though that’s not my intention. I love engaging in debate and want to hear opinions other than my own, but the way I come across doesn’t allow for that exchange to occur.

And, despite feeling full of fire, I am often sluggish, exhausted, and lack motivation to create, or manifest any goals. My anger has almost entirely consumed me, and there is very little left to give. Like a fire, when there is nothing left to burn, it simply extinguishes.

Then, once the anger subsides I am often left pooled in a puddle of self loathing and fear that I’ve ruined something. That my fire has incinerated something precious. That there’s been irreversible damage done to the relationship and so I’ll do anything to “fix it.” I’ll contort myself in any way to make sure that never happens again. Which often leaves me feeling alone and sad. The fundamental message being, I am broken, I am what’s wrong.

This brings me to my most powerful and effective mask: the shapeshifter. Not the powerful female deities of lore. I wish, and maybe someday (after a whole lot of therapy) I’ll be able to put these powers to positive and healing use. No, a shapeshifter as in a codependent human. It’s a yucky and shameful word that fills me with a huge amount of grief.

So back to the diagnosis not-so-decision. There’s a lot of discussion kicking around between my head and heart. It sounds something like…

Brain says — I am a rule follower and the rules say that when you think something is ‘wrong’ or you need clarity regarding your body/brain/etc you seek advice from a medical professional who can tell you exactly what it is. They can give you a nice little package of results that makes sense.

Heart says — I am also someone who rarely goes to the doctor because I have many and conflicting views of what is ‘health’ and what I like to do to stay ‘healthy.’ The mainstream medical industrial complex is very suspicious to me and in general I am very cautious of their advice and guidance. I am tender, and sensitive, and quite often the system feels too harsh, invasive and dramatic for me.

Brain says — Ok then, well fine, this diagnosis was not designed for me anyway. It was constructed around a white, wealthy, male, who is behaviorally “unconventional” and “disruptive.” I will have to find someone who is knowledgeable of adult women with complex trauma and a long history of masking, in order to even begin to be seen by a professional. It would take some digging but I can do that.

And so my heart says — well, if I have to work that hard to feel seen and heard, why not just call it like I see it. I’ve taken the self assessments. It’s all a construct anyway, so who is to say whose construct is more right than my own lived experience, which is also a construct, but at least it’s mine.

Brain says — yeah well, it’s too expensive anyway, and our insurance company won’t cover it.

And my heart replies — but if it means that much we can figure it out.

Brain says — True, and it could be armor against all the haters and goodness knows we can use all the armor we can get.

Heart rebuttals — Well I could work on that codependent complex trauma of ours and gain some self respect and love. That’s the greatest armor we could ever have. I should be able to do that with a bit of focus, some workbooks, EMDR, and once I get organized and gain some control over the rest of my life to make some space… I should be able to do that by next week. Totally reasonable!

Brain and heart say together — Hmm, ok. Now I’m feeling scared. What if my diagnosis comes back inconclusive, or worse yet, NOT autistic?

Wait what???

Since I started researching Autism about a month ago I have found an inner peace and clarity that I have not felt ever in my life. I’ve found a why, a permission, a way of being that is ultimately a net positive to my broken heart. Yes it has challenges, yes knowing I’m autistic wouldn’t fundamentally change who I am, but what it does do is give me a new lens with which to view my pain and challenges, and it gives me hope that I can learn to love them.

Love them. Love me. Love you. Love all of us. As a whole united being and not struggling as a broken and fragmented soul. As a being worthy of the experiences of anger and an opportunity to move forward and create something meaningful. To manifest what my favorite song of the moment says “I wanna be big enough to leave a whole lotta love behind.”*

I have hope that the massive amount of love I feel inside may finally have a way out, and I am terrified of losing it.

And so I’ve come to the end. There’s no conclusion to write. No decision has come of this. It’s an in between space. Frozen, and on fire.

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*(Lion Heart — May Erlewine)