Putting the Pieces Together

A slight divergence... into neurodivergence... with lots of ellipses...

Photo by hami wali on Unsplash

What it’s like figuring out you are autistic later in life…

You can spend your childhood being laughed at and bullied, wondering what special social secret everyone else knew but wouldn’t tell you…

and survive by learning which face to wear, and when it’s ok to take it off…

and spend hours in your room, listening to old familiar albums on repeat while sorting the coins from your piggy bank into neat little stacks, arranged by type and according to minting year and location (because what else would a seven-year-old girl do with her spare time?)…

but still be into music and creative self-expression (though more awkward than the other “artsy” types)…

and you can develop disordered eating habits from being forced to swallow foods with too-strong flavors and textures that make you gag (and there are a lot of them!), and then enduring abuse for having that involuntary biological reaction…

and you can teach yourself to swallow your emotions, too, because they are “too intense” for everyone else and it takes you “too long” to process them (and you are severely - abusively - punished for even having them)…

and wonder why you seem to always be getting in trouble for saying the wrong thing or asking honest questions or telling the truth…

and force yourself to learn to tolerate eye contact…

and find joy in reading encyclopedias…

and be a walking encyclopedia yourself, when it comes to your favorite rock band that nobody else in your generation listens to or cares about, but it’s not like you’re obsessed with something really odd or obscure, so no one thinks anything of it…

…because you’re a girl, and it’s 1970- or 80-something (and what is autism, anyway?)…

and even after you grow up, you can spend every day feeling overwhelmed and not quite able to meet the demands of the life placed before you while still contending with all of the above, but still expected to excel because “you’re so smart”…

and being ridiculed and judged and pitied for having emotional meltdowns as an adult…

and feeling alone in crowded rooms…

and in every relationship…

and become skilled at camouflaging how difficult it is for you to remember faces you don’t see often, and the names that go with them…

and go back and analyze every human encounter after the fact, hoping you did ok, because you still really aren’t quite sure how to human…

because you never did figure out that special social secret…

and you can still be able to regurgitate more useless but fascinating information about that rock band than any group of 5 autistic guys can tell you about trains…

and have your male offspring diagnosed on the autism spectrum, with no dissension from the peanut gallery…

and they’ll tell you you’re making excuses, to soldier on, that everyone has challenges, and you’ve been fine all this time up till now (as if they know how you’ve really been on the inside all this time, while you’ve been hyper-fixated on being what they all expected)…

and they’ll call you quirky, weird, crazy, odd, annoying, stubborn, sensitive, crybaby, over-dramatic, awkward, different, even sinful, and they may tolerate you with a roll of the eyes…

but if you’re an adult female with an IQ in the 150s and you don’t smack your own head like Rain Man, they will call you anything but autistic.

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Am I gonna pursue formal testing? Probably not. I have no one I need to prove it to. No job situation or anything legal that requires it. I know the reality of my experience. People who care about me are not going to require proof before believing it (not that I need them to, really). And it isn’t something I plan to announce to everyone I know or meet, anyway. But it makes sense to me, and it answers that question I’ve asked myself for nearly 60 years now: What the heck is wrong with me?

Autism self-diagnosis has become increasingly accepted. Formal adult autism testing is expensive, usually not covered by insurance, and can involve long waitlists and other roadblocks. Tools such as the Autism Spectrum Quotient and the RAADS–R , which are commonly used and empirically validated, can assist in self-diagnosis. A high number of such self-diagnoses are later confirmed as accurate upon professional evaluation. And, as my neurodivergent pastoral counselor said (this is a paraphrase, but a very close one, because I was hanging onto her every word),

“I think self-diagnosis (in the case of not requiring official proof for any reason) is valid, because if you have a disability, and have a high enough IQ to have been compensating for it this far in your life, that tells me that you are plenty intelligent enough to decide if the shoe fits, (and for you to pursue resources for support).”

I’ve done a lot of research about autism in girls and women over the past few years (ever since a therapist suggested it as a possibility), and the shoe does fit. My immediate family has not dismissed the likelihood, but my immediate family also includes one person who was officially diagnosed on the autism spectrum as an adolescent. So we know a thing or two about how autism that doesn’t present in the classic or stereotypical sense can result in a delayed diagnosis. We understand things about autism that many others do not. We are aware there is a genetic component to neurodivergence. And we know each other well.

Other people, not so much. I have not talked about it to many people outside of my immediate family, but other than from people with professional mental health knowledge, I have generally been lightly dismissed with a metaphorical wave of the hand.

“Hmmm. You think? I don’t know…”

“You’re not like this other person I know on the spectrum…”

“But you’ve done all of these things in life (raising a family, college, career, accomplishments) …”

“But you can understand metaphors…”

Yeah, I’m not entirely like any other autistic people I know, either, because every human is unique regardless of neurotype, and autistic traits fall independently on a wide spectrum.

And accomplishing all those things nearly killed me, by the way.

I do thrive on figurative language, though. I can find it difficult to label my feelings directly, so I often rely very heavily on it. I am learning that this may be due to a common trait in autism called alexithymia. Despite stereotypes that suggest otherwise, many autistic individuals are exceptionally skilled at using figurative language. Temple Grandin comes to mind. Your point is?

My Autism Spectrum Quotient is 39. A score of 32 or higher on the AQ is significant in that about 79.3% of autistic people reach that score, while only 2% of people without autism do. It’s even more striking for adult women; 92.3% of autistic women score at least 32, compared to 1% of non-autistic women.

My RAADS-R score is 135, indicating “strong evidence for autism.”

Why is this meaningful? For the same reason talking about religious trauma is meaningful. Because ignorance hurts.

Studies show that women who are diagnosed on the spectrum later in life are nearly 3 times as likely to suffer from conditions such as anxiety and depression, chronic burnout and fatigue, eating disorders, other forms of severe psychological distress. They face a significantly higher risk of suicidal ideation and behaviors. One study found them 13 times more likely die by suicide than neurotypical women. This is how hard it is to live with undiagnosed (or late-diagnosed) autism. Additionally, the combination of autistic traits and childhood maltreatment raises risk more than either factor alone. I didn’t bother looking for any stats that would reflect the effect of adulthood religious trauma stacked on top of that, but I have an idea.

I was going create footnoted references for all this information, but screw it. I’m not saying this for attention, but I’m tired. And I’m completely over trying to prove anything to anyone, ever again. I’m all out of you-know-whats, and I canceled the recurring auto-ship. Some days, I’m barely hanging on.

Here’s what is keeping me going right now: the beacon of light in the dark place of losing my spiritual community for being too human. I keep thinking the timing of this autism revelation is part of God’s divine protection, and that awareness of His care gives me hope for the future.

I spent 30 years being inundated by messages telling me to “suck it up,” and “stop making excuses” about all of the ways I struggled in a controlling church environment that was most definitely not neurodivergent friendly, and that is putting it mildly. If you don’t fit into a certain box… and God knows I tried with all my might… you don’t belong there. God did not create me for that box. Knowing that, and after what happened when I told the wrong people about my complex trauma and allowed them to see too much of that struggle, I know I would not have been able to remain there. My days of bending myself into a pretzel to meet someone else’s expectations are over. It was bad enough letting them in on my reality the first time. God knew that, too. I see His kind wisdom in removing those people from me, even though that pruning process has been anything but gentle. I don’t think it is accidental that those final gut punches of closure happened not long before the autism test scores confirmed my suspicions (both were fairly recent, although we left that church over a year ago).

God has recently led our family to a healthier church (from appearances so far, at least… we are proceeding with caution), where we are just beginning to meet new people and are signed up to start a membership class soon. In this new, non-pressure environment, I have the freedom to use careful discernment and let myself be known gradually, by people of my choosing, at a pace that feels safe. The way it should be. He has surrounded me with a tight nuclear family, tested and proven solid by fire. He has kept me connected to a few precious and steadfast people from my past, not leaving me entirely friendless as I enter a whole new chapter of life with Him. I believe what I have been left with is pure gold, the scrap having been burned away, and He has planted me in a new place to uncover new treasure, now equipped with some hard-earned wisdom. And I am moving forward with a faith that has also been tested by fire and proven genuine, only now it is more deeply and firmly rooted in the gospel of grace and not in human performance. When things feel heavy and dark, I try to remind myself of all I have gained through the losses, and the hope of brighter days ahead.

Realizing and accepting my neurodivergence is empowering. And yes, if you stay tuned, you will definitely hear more about it, because I am becoming increasingly aware of how it is woven into the fabric of everything I have experienced. It isn’t about trying to claim some special status or “making excuses.” It doesn’t give me the right to pull “the ‘tism card” when things get extra difficult; in fact, I do not foresee a need to disclose that information to most people at all, including much of my extended family. But it does allow me to cope better with those difficulties by swapping some of the unhelpful, and often unsolicited, input I’ve received from well-meaning people over the years, for meaningful support and tools that are useful. It gives me a chance to start again with a better understanding of who I am (again, what great timing). It helps me to embrace the way God wired me and to give myself the grace that I never received from the world around me before. It provides a framework and language for processing my experiences, many of which now make a lot more sense to me. And it gives me tools for moving forward and living life in a context that fits. What a blessing that God has already pruned away my dead branches and planted me in fresh, healthier soil. He has sent the rain and the sun. Now I am praying to bloom.