This post was prompted by a recently discovered personal “label” after a half century of living without it.
I’m not a huge fan of labels – whether for my fellow human beings or for myself. And yet sometimes they’re extremely helpful, even necessary.
When it comes to my health I’ve experienced that time after time when I could identify what was causing symptoms or dis-ease in my life I could rather quickly get better. So I’ve always been a researcher. Aside from the common cold I’ve always demanded to know more about what was going on with me than what I could find out in a 10 minute office visit in a small town doctor’s office. So, yes, labels, diagnoses and symptom profiles are helpful.
That said, I’ve raised my kids to simply be themselves rather than become the labels that we often had to dust off and use in order to deal with cultural institutions (healthcare and education) that require names for everything. We’ve dealt successfully with a variety of issues from learning differences to food allergies to chronic health challenges – all of which meant justifying or explaining things to teachers and healthcare practitioners with medical diagnoses.
Yet at home with each other these labels simply weren’t on our radar. We didn’t become them.
All of this considered, it was no small thing when on a regular ‘ole day two months ago I opened Facebook and found myself reading a life changing article someone had shared. It was called “I’m 45 and I think I have Apserger’s Syndrome.”
I’m not sure why this article even caught my eye other than the fact that I had just finished up a media kit for a client whose work is very helpful for those on the Autism spectrum. So I had done some Autism publication research for that project. I can come up with no other reason why the article caught my eye and I was compelled to read it. But I was.
After I finished reading every word of the article I felt extremely unsettled. Almost triggered, to use PTSD nomenclature. The feeling of an impending emotional upheaval was palpable. So, as I did often in the past when these kind of triggering episodes were more common in my life, I dug deeper. I tuned in distinctly to my intuition and followed a gossamer thread to gain more information and allow the distinct feelings I felt awakening in me to come to the surface.
The next thing I did was click on a link in the article I had just read that led me to Tania Marshall’s blog on women and autism, and more specifically to her Moving Towards a Female Profile post. By the time I hit paragraph #2 in this post I suddenly burst into tears. I mean big, fat – to quote Nashville’s Hayden Panittiere – “ugly cryin’ black mascara tears” – aside from the fact (typical Aspie) I rarely wear mascara.
Yes. Out of the clear blue – I bawled.
I can’t say that even in a life FULL of emotion I’ve ever had such a spontaneous emotional experience. I think the feeling could best be summed up by a quote I found on Life on the Spectrum, the next site I visited.
“I am no longer a failed normal person. I am a successful aspie.”
Finding this one the crying got harder. And louder.
When I read this line I knew deep in my bones it was the truth – my truth. At that moment I was sure I didn’t need anyone else to tell me that I had Aspergers. I simply needed to discover more about it for myself.
The two most important things I discovered early on in this exploration were that number one, Aspergers often presents very differently in women than it does in men. From childhood women are driven to be more social and they’re raised with different expectations than boys are. And because of this the second remarkable fact is that there is VERY LITTLE in the way of a professional consensus on the profile in women. It’s an emerging conversation.
Of course it is.
There seems to be this theme in my life. I distinctly recall that they were loading me up in the stork’s basket before launching me into the world and someone ran up at the last moment with a new Deployment Memo. The exchange went something like this…
Stork: “What ANOTHER life challenge on the list?”
Divine Messenger: “Hey, don’t shoot me. Boss wants to make sure she gets really good at being a system buster, so we’re sending her down with several challenges that aren’t well understood in her time.”
So…a still-being-defined neurological condition ripe for misunderstanding and lack of information. Wait, that sounds familiar. Let’s examine my deep experience in this area:
- Gifted as a kid before gifted education was a thing
- Subarachnoid central nervous system hemorrhage that didn’t kill me (first one in the medical literature in 150 years)
- Walking spinal cord injury survivor with a lot of hidden health issues no one understood for years
- PTSD at least 20 years before it was a thing
- Highly sensitive central nervous system including wild reactions to CNS drugs
Are you seeing the theme?
The kicker is that most everything on this list of things about my life that I’ve previously accepted and beautifully accommodated in a hand-crafted life of my own design is possibly explained by Aspergers Syndrome. I will likely never know if my spinal kyphosis or the subarachnoid hemorrhage and resulting spinal cord injury were due to a related genetic condition called Ehlers-Danlos Syndrome since to date it’s mostly diagnosed by observation and oral history. And it doesn’t really matter at this point.
My first suspicion when I began studying Aspergers and taking online tests was that some of my “differences” might be explained by what I’ve always called high sensitivity and my history with PTSD. Yet what I’ve come to know is that these factors are the eggs, not the chicken. Most of the other challenges in my life have been underpinned by having a brain that is perhaps simply wired “differently.”
Speaking of having brains that are perhaps wired differently, what the heck does it matter? I’ve embraced the idea of neurodiversity since before there was a name for it. As the daughter and granddaughter of special educators and the mother of two sons with ADD I’ve always thought it was absurd that our society expects a status quo and anything less must be labeled. So for this reason I was horrified to stumble upon the shadow aspects of the national dialogue around autism as expressed by heinous organizations like Autism Speaks and governmental policy like The Combating Autism Act (CAA).
Can we PLEASE stop using some fictitious “norms” to define expectations for each other? How ridiculous.
If you agree, please share the hashtag #StopCombatingMe in your social media postings. For a great start, check out the link in the photo caption below for several great memes that are easy to share.
My neuroatypical brain is not something to be “combatted” nor cured. Nor is my son’s just because he learned to read in the 3rd grade instead of kindergarten like his peers. The following year he began reading on a high school level and was writing a novel by the time he was 17. That’s just how we roll.
At times I still wonder if it really matters that I’ve discovered new information about myself after a half century.
I doubt it.
(Part 2 of this post will be published tomorrow.)
Photo :: #StopCombatingMe graphic adapted from an illustration created by Cynthia Kim at Musings of an Aspie. Please share Cynthia’s fabulous graphics for combatting stigma and small minded conversations on the subject of autism by visiting this awesome Musings of an Aspie page!