It's Autism Acceptance Month, and am I...#ActuallyAutistic?

 The short answer to this is: well, we don't know.

That was probably not the answer you were expecting. It seems like it would be something cut and dry, either you have it or you don't, right? Wrong.

This essay mentions abuse of various kinds, as well as child endangerment. Reader discretion is advised. If this is not for you, feel free to see yourselves out. 

There have been countless articles written in the last few years about how hard it was to get an autism diagnosis for girls before... like.... yesterday. Girls are routinely over-looked and down-played for countless other things, so why should getting proper mental health assessments and care be any different? Often traits that are seen as red flags in young boys are business as usual for young girls.

I am masking in the above photo. I know that I am masking. I know that I am so uncomfortable and feel like I am dying inside. I know that this dress, these shoes, having to sit still like this, is absolute torture for me, but I am smiling for this photo because I have to take up as little space and be as less of an inconvenience as possible. Because I am "so difficult," and I "ruin everything."

I had never thought about neurodivergence until a few years ago, when that term was rising in prominence and broader cultural conversations were happening. My friend Ashley Wool wrote this brilliant article eviscerating the disaster that was the movie Music, and  our interactions got me thinking--was I, too,  #ActuallyAutistic?!

I fall under what is considered the "Neurodivergent Umbrella," as beautifully exemplified by this image from Emerge. I have many of these conditions, with over-lapping symptoms. I have been formally diagnosed with PTSD (and have been since I was 6 years old), C-PTSD, Synesthesia, and Dyscalculia (and here, my entire life, I just thought I was stupid and could not do math!). Those ones are the "for sure" "diagnosis broken" conditions. The ones that are in the fuzzy, grey area they can't quite put a finger on are OCD, BPD, and Autism.

The reason why OCD, BPD, and Autism are inconclusive, despite years of evaluations and hundreds of dollars worth of co-pays later, is because the diagnostic criteria for these have so many over-lapping symptoms with other conditions. Obsessive-compulsive disorder has many over-lapping traits with PTSD: unwanted and intrusive thoughts and memories, repetitive actions, fixations on repetitive actions, rituals, and doing things to avoid a threat-either real or imagined. Borderline personality disorder and Complex-post-traumatic Stress are nigh indistinguishable. Autism has innumerable overlaps with C-PTSD and Synesthesia, including, but limited to sensory overload, disassociation, touch aversion, special interests, etc. Often children with PTSD also have difficulties getting an Autism diagnosis. I also suffer from garden variety depression and anxiety (but, honestly, what sane person who so much as watches the news for more than 3 minutes wouldn't?!).

I want to backtrack a little and talk about borderline personality disorder. Firstly,  have to talk about how I was a victim of the early 2000's incompatible psych meds shit show (as I have mentioned a couple other times). I was force fed a bumper crop incompatible psych meds that almost cost me my life (some of which that have been since taken off the market or are now illegal to give to children! :D ), and cost the lives of two of my friends. Instead of alleviating what was actually wrong, the early 2000's was all about force feeding people pills to strong arm them into behaving. 

I also want to make it clear that I do not think medications are bad. I in no way think that they are a scam or that they are not life saving in many, many cases. The criticism are not towards people who use medications, it's not towards the medications themselves. It was the failure of the doctors and the pharmaceutical companies between the years of 2000 and 2005 (roughly) that were giving little to no care about the side effects and continued to ignore patients who were expressing concerns about symptoms, which ended up costing many, many people their lives. For example, one of these medications that I had personally been on, Abilify, has been slapped with countless hundreds of thousands of lawsuits. I can personally testify to the horrifying side effects. I was a monster when I was on Abilify. I have spoken about this at length before, and I won't rehash it any more than I have to, and I have made it a point to personally apologize to people for how I behaved on the medication. (Idea for the next great psychological thriller-horror movie, a day in the life of someone on Abilify with whom the drug is wholly incompatible.) Medications are like Laughing Places, where it might be for one, it might not be for another. I am sure that Abilify is affirming, life-saving, and wholly necessary for people out there, but I, and many others like me, did not find this the case. The fact remains that the doctors had no interested in listening to their patients, and that a lot of young people's lives were lost because the medical profession failed them.

I did not need medication. I needed grief counseling for the deaths of one of my friends (from the said psych meds) and for my grandfather's death. I should have been home schooled or been allowed to test out because I was being stalked at school by my biological father and was bullied maliciously at school. I needed actual care and therapy for the amount of countless various abuses I had suffered and the decades-long stalking and break-ins I endured. I needed a good therapist, and I could not get one. This was not anyone's fault, but a broader, pervasive problem with the lack of access to care in the US (and the world) and the failure of these insurance company "networks." 

Now, I want you to put a pin in me talking about saying that I was a monster when I was on Abilify and some of the other psych meds, because this important. Let's get back to talking about borderline personality disorder.  Circa 2003-2004, they were not treating minors with Cluster B disorders. In fact, until maybe a decade ago, BPD was still being seen as the "spoiled girls disease," and not, as is so often the case, more often than not, intrinsically linked to trauma (I mean, water is wet, but...you know....LOL). I had, and have, many of the criteria for a BPD diagnosis, one of them being (which I am sure is linked to being on those incompatible psych meds!) was irrational and out of control behaviour. 

Again, as previously stated, a LOT and I do mean A LOT of criteria for BPD overlaps with C-PTSD: the instability (especially in relationships), uncertainty, switching between intense emotions, doing anything in one's power to avoid real or perceived abandonment, recklessness (occasional over spending, disordered eating), unstable self-image, self-harm, chronic  feelings of emptiness, dissociation--etc. etc. etc.  A few of the criteria that was being used in the early 2000's for BPD are now considered obsolete,  because they were outdated or heavily gendered (and another reason why it was seen as a "spoiled girls disease" and why men with BPD are often overlooked). I had this criteria, and I could not get a formal diagnosis. The medical and mental health professionals in my life refused to give me appropriate treatment. I ended up spending the rest of my teenage years and into my early 20s using the then-applicable criteria for the diagnosis and measure it against my own behaviour--to both hold myself accountable for my own actions and understand that they were operating under this frame work, and  to keep myself alive. Without their medications.

I still, to this day, do not use medications. I know that meds have changed in the last 20 (holy shit) years, but after such a terrible experience, I do not want to play Russian Roulette trying to pick one that does work.  I find that the best thing for me is avoiding triggers, doing a lot of grounding work within myself, and exercise are the best ways to manage what is wrong with my brain. All things considered, I am doing quite well, and am incredibly high-functioning. I have a social worker I check in with a couple of times a year for my emotional support animal papers, but that's about it. I live a very rich and full life (despite everything), and whilst I still consider myself maladjusted, I think I am doing just fine! All things considered!

So, um, this brings me back to the initial question: am I #ActuallyAutistic? We don't know. 

Over the last several years, since Ashley wrote that article, I had been secretly seeking evaluations for ASD. The results were fuzzy and inconclusive; because I have so many overlapping neurodivergences, some of which are also quite fuzzy and share too many traits with other conditions, there isn't a "for sure" answer. What I have are many, many traits classically associated with autism: special interests, touch aversion, sensory overload, inability to read  certain situations (not helped by people blurring these things on purpose), problems with textures (if my socks are not the exact conditions, I can't hear, you know, stuff like that!), greater difficulty concentrating if the conditions are not exactly right. The list goes on and on. In conclusion, they simply do not know for certain. They know something is wrong up there in that attic, but they are not conclusive as to what.

When I say "secretly," I mean that I didn't tell anyone until recently that I had been going for these evaluations. I haven't really talked about any of this, because my entire life, I have been met with incredibly cruel "jokes" about me "having autism." "Oh, you ate that recalled process cheese, that's why you have autism," or "you were exposed to that chemical, that's why you're autistic, har dee har har!" Very little has been done to accommodate my "for sure" diagnosed conditions or neurodivergences, and, in fact, a lot of the time, people have thought it was "funny" to purposely trigger sensory overloads or trigger my PTSD. I have been treated my entire life as though I am just "difficult" and "whiny" for asking for things like 7 hours of sleep or them not watching movies with triggering subjects, not wanting to go certain places or do certain things because they were triggering (either PTSD or sensory). My PTSD and C-PTSD rendering me literally disabled is a fact that they refuse to recognize. So, no, I am not exactly eager to talk about something like this with people who have repeatedly demonstrated that they are insensitive, least of all with a diagnosis that is so stigmatized. I have had a lifetime of being "so difficult," and "ruining everything."

So....am I...#ActuallyAutistic? I don't know. And, honestly, that is okay. Just like how the criteria for BPD has changed and evolved,  just like how the evolution of the understanding of PTSD now includes C-PTSD, just as these medications have changed for the better to better meet the needs of patients, I might not know today, but I have a feeling that one day they will have it figured out. And even if they don't figure it out with me, hopefully they can figure it out with someone else who needs it. I am okay with the unknown. What I do know, is that I am allowed to take up space. I am allowed to have my needs met. I am allowed to do what I need to do to take care of myself. My brain not functioning in a way that other people like isn't me being an "inconvenience." Whether or not I ever figure out or if they ever decide if I AM #ActuallyAutistic, it's never going to stop my life from being rich and fulfilled and beautiful, and it's certainly not going to stop me from advocating for others getting their mental health needs met. 

It's a wonderful life, and I suit me.