This post will be a mess. Because I keep trying to write it and I keep outlining it to try and make it perfect and I keep using that as an excuse to not write it. So, forgive me in advance, this post will be a mess. I will use the wrong words. The stories will be out of order. It will have incomplete paragraphs, bad punctuation, and run-on sentences. And I am going to let that all go and just dive the f**k in.
TL;DR = I have an official diagnosis of Autism Spectrum Condition now. Tada. And it’s Autism Acceptance Month in April so figured it’s a good time to make a splash.
But what the heck does that mean? And how did I get there? And why am I even writing this and want to share my business with people?
I think I will work through the questions in reverse order. First, start with the why. About two years ago, I think it was, I came across a post via twitter from a woman who worked in technology who had struggled with depression and anxiety and had just been diagnosed as autistic and it changed her world. When I read it first, I didn’t think too much about it. I had been living with various diagnoses myself (anxiety, depression, bipolar disorder), and working in technology myself I definitely have crossed paths with people who I have assumed were autistic. I have friends with autistic kids and siblings, so it wasn’t a new “disorder” to me — but what was new is that this was the first time I had at all heard about female autism. Something in the article was very family and wormed its way into my brain. But then, like with most information I consume, I moved on…because while I identified A LOT with what the woman experienced, and a tiny part of me thought maybe “hey, that might actually be me,” a bigger part of my brain said there was no way I was autistic — I had a job, I could speak in front of people, I was able to function in the real world (okay, well mostly).
But something about that article (and GOSH I wish I could find the exact post again because I can’t seem to find it) just kept nagging at me.
Then last fall, I hit a unique intersection of a lot of various inputs and contexts and conditions and challenges that shoved me forward on the investigation… and I researched more and more about women and autism and for the first time in perhaps EVER I felt like I was seen and I wasn’t a complete failure, disaster, mental case. And perhaps the best part, since I started to understand what really might be going on in my brain (and what had been going on when I was a kid) I was able to be kind to myself and put in place some tools that helped me out immediately.
So why share? Because that one blog post.. because that one woman went out on a limb and shared her story, I had a HUGE breakthrough in my life and, in a way, she saved me. So I hope that maybe my writing will potential help another person out there who has been feeling like me.
The other big WHY is that I hope that people who know me and read this will better understand me — how to work with me, but even more importantly what friendship and love look like with me. Reality is that I am not too awesome at relationships, and folks whom I care about I am sure often feel like I abandon them or I am mean/cold to them, and I am hoping that the more I share about this, the more these folks will understand that I do not intend to do this at all.
The first and second questions (what does it mean and how did I get here?) can probably best be answered a bit together at the same time. I am going to do the quick, timeline version of it for now, since I am just trying to get it all out there right now. And I will come back later for future posts about the details of what this all actually means. So, here’s the story:
- Last November, I started reading about women and autism because I had yet another incident at work where I was misinterpreted as being aggressive.
- The more I read, the more it became very, very clear to me, that this WAS ME.
- But at the same time, I didn’t trust myself and my own evaluation, because hey what do I know? And, as I mentioned, I did not see myself as being like the (male) autistic people I had read about and know and know about.
- So then I decided it wasn’t me. Not at all. I dove back into my life full steam ahead and kept pushing and pushing and pushing. And that caused me even more stress. Lots of tears. Lots of exhaustion.
- I brought it up with my therapist, and while she was open to the information, she was not familiar with adult women and autism and I felt like, once again, it was my job to do all the work and research and explain everything to someone. So…
- I started to see if there was someone out there who could do the diagnosis and help me out.. ideally, I would find a psychologist who could do the testing AND had experience working with adult women with autism who could help me out longer term.
- Found someone (let’s call her Dr. C), and, unfortunately, yeah the official diagnostic process turned out to be bulls**t. It was 100% designed to test if I was a young boy with problems in school. The psychologist who did my testing was also completely lazy IMHO and went ahead and “completed” my diagnosis without even speaking with my therapist — because they were playing phone tag and couldn’t figure out how to connect with each other (yeah, you can only imagine how I felt about that!).
- FORTUNATELY, in the process I found a new therapist who specializes in all of this and after meeting with her for 30 min she knew I was in the right place and I FELT like I was finally in the right place. And also fortunately, I met with her before the BS diagnostic call from Dr. C, and she warned me that the “official” diagnosis will likely come back and say I am not really autistic.
- And, yep, that’s what happened because Dr. C said a.) while I had a lot of traits, I did not show enough repeated motion so I couldn’t be autistic and b.) (this one is my favorite) the way I reported feeling in my “tests” (which were silly checklists/multiple choice surveys) were actually impossible because if I REALLY felt like that I could not live alone and could not hold a job … and since I do both, I must basically be not reporting how I feel correctly. So, I was kinda autistic, but not autistic enough to be autistic AND I can’t be trusted to report my own feelings about myself.
- Dr. C’s recommendations were that I explore therapy, medication, exercise, and meditation — which I found laughable because had she spent even ten minutes with me really listening she would know this has been my life for 25 years.
- and then a few weeks later my psychiatrist made it very simple and just said “here you go here’s your diagnosis I wrote it in your file” and the short version of her evaluation was that the more research she did and the more she knew me this absolutely all made sense. And those diagnostic tests are pretty much BS for adult women
So…. what does this all mean?
It means I have a lot to learn and a lot to share and I have a lot of hope that things in my life will be getting better. It means I am excited and nervous at the same time.
I will do my best to write more soon about the various ways I am impacted by this, how it manifests, suggestions for ways to better work/communicate/be friends with me, and will be sure to share the resources I already have and new ones I come across to hopefully help everyone (especially me!) understand this all better. In the meantime, I ask for your patience and forgiveness.
And, PS, I know Asperger’s Syndrome isn’t officially a thing anymore, but I wish it were because I think I am more comfortable calling myself an Aspergirl than anything else right now.
Karen A. Taggart 