Diagnosed: A Retrospective

The following entry is one I posted on a different site almost two years ago when I underwent an in-depth psychiatric assessment for Autism Spectrum Disorder. The reason I’m sharing it here has to do with the power of understanding of your own narrative. An impartial perspective helped me put my challenges and into a clearer context. I wish I’d done this much sooner, but I’m glad I did it.

Journal Entry·

Too Smart to be….

Yesterday was the first half of my diagnostic testing for a formal Autism Spectrum diagnosis. It was tiring. And I’m feeling a little ambivalent about it at the moment.

I know that self-diagnosis is commonly accepted in the ASPie community, largely because diagnostic testing is expensive, and it can be hard to find a nearby provider who performs this testing.

I’ll now add, it’s hard to go from mind-blowing self-recognition (these characteristics describe me, and it explains so much about the challenges I’ve faced) to hearing the provider say, “well at this point, it’s borderline, I see some indicators but not others. But, by the way, you’re very smart and have some unique strengths”.

Of course I do. I’m a woman.

I’ve learned to mimic people around me to appear normal for the last 40+ years. I’ve adapted. But, just because I can look you directly in the eye, shake your hand firmly and smile, doesn’t mean it is comfortable for me to do so. I can take charge in situations where it is required, I can excel in things I shouldn’t be able to. But, compensating for deficits doesn’t mean those deficits don’t exist. It simply means that functioning in a NeuroTypical world exhausts the living daylights out of me. The lights are still too bright, it’s still too noisy, and the tag inside my shirt is just shy of driving me batshit crazy.

So I’m wondering what to expect of the second half…which I understand will be more of an informal interview. Do I show up in a manner reflective of how well I adapt to prove the point of how much effort it requires on my part? How do I reveal the authentic me?

Crap…where’d she go? Has anyone seen her?

 

Revelations?

Journal Entry·

Yesterday was the second half of my Diagnostic Assessment for Autism Spectrum Disorder. A five-hour interview…exhausting, to say the least.

The doctor is not offering me a formal diagnosis right now; it will be six weeks, as he needs time to go through all of the interview details plus the results of the questionnaires and testing. He’s been up-front enough to say that while I do have symptoms of ASD, I do not meet the 3 hallmark criteria. So, an ASD diagnosis seems unlikely at this point. More likely, I will have a diagnosis of Social (Pragmatic) Communication Disorder, in combination with other findings.

An interesting point: he specifically asked about illnesses, injuries, and trauma during childhood. He pursued this line of questions doggedly, and while I have shared these details with other doctors, none have shown the level of intense interest he has, which has me thinking: these issues may have had far more impact on my intellectual and social development than anyone has bothered to consider.

The first issue was a case of croup when I was roughly 18 months old, where I stopped breathing as my parents were driving me to the hospital.

The second issue was the emotional trauma of a ‘home invasion’ when I was 5. My parents were at an event. My babysitter brought her boyfriend to our house, where they terrorized me, stole several of my parents’ belongings in front of me, then left me alone in the house for several hours until my parents came home. I’ve never had the classic symptoms of PTSD from this event. However, this doesn’t mean it hasn’t had a lasting impact on how I view the world and other people.

The third issue was sexual abuse by my 4th-grade teacher when I was 9. The abuse lasted the entire academic year. I never spoke to anyone about it (nor did any of the other girls in my class who were also victims).

So if we combine the effects of hypoxia/anoxia with early psychological trauma, the picture of the intelligent yet shy, defensive, anxious, depressed, naive, self-deprecating, emotionally labile adult woman begins to make perfect sense.

And my kink makes perfect sense, too. I can only really allow myself to be powerless in a situation of deep trust, where I feel safe, and know that I can say STOP, and it will indeed stop.

Even though it will be six weeks before I receive the results, I feel a deep sense of relief. I’ve been trying to find a narrative – the reason(s) my life always felt so much more difficult than it needed to be; the reason why it seemed like I struggled with things that didn’t bother anyone else. I was looking for a reason to stop beating the shit out of myself for all the flaws and foibles, a reason to treat myself with more compassion, patience, and acceptance.

Maybe now, that will be possible. Maybe now, the real healing can begin.

 

Journal Entry·

I recently met with the physician who performed the extensive diagnostic testing to determine/rule out Autism Spectrum Disorder, to discuss his findings. While he noted that I demonstrate many traits on the spectrum, I fail to meet the three hallmark criteria. Ultimately, he arrived at a diagnosis of Social (Pragmatic) Communication Disorder and Social Anxiety. In addition, he concurred with my current doctor’s assessment of Major Depressive Disorder and PTSD.

I’m grateful to finally have an official answer for many of the difficulties I’ve faced, and at the same time I still am left with a ‘hmmm?’ The diagnosis fails to address my physical sensitivities – light, strong odors, textures (though I admit that aside from the times one of these triggers a migraine they are not horribly disruptive). All in all, though, I really can’t complain about the results.

Right now I think it’s important to focus on what poses the greatest challenge to rejoining my local community, and building relationships with others. I’ve only attended a few munches so far, but it’s a good start. Being in a room full of people where I only know a few folks takes a lot of energy. But, I know the more I do it, the less stressful and uncomfortable it will become. I also have a wonderful friend at my side who is helping me navigate these waters; and I can’t thank him enough for his presence, encouragement, and support.

One day at a time, one event at a time, one step at a time…it’ll get easier. Sometimes it just takes a bit of faith, and a willingness to keep shuffling my feet!

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