- Internalized Ableism and the Dichotomy of Valuable Disability - April 15, 2021
- On ASD, Courage (Cowardice, Really), and Roommates - April 10, 2021
- A Mini Memoir: Anorexia - February 14, 2021
I am autistic. Specifically, I’m diagnosed with Asperger’s, a uniquely high-functioning subset of Autism Spectrum Disorder.
I want to start by saying that I did not take the decision to write about this lightly. My doctors, family and I arrived at this conclusion a while ago, and I’ve been weighing the pros and cons of publicly announcing this diagnosis for a similar amount of time. A few factors went into this choice to share.
I’ve been unrolling the diagnosis on things like my finsta, and to my closest friends, and everyone has reacted positively. I’ve gotten quite a few requests for more information, and even some requests for help in terms of getting one’s own diagnosis, and what that looks like. This brought me back to a place before I started the blog, when I was fielding dozens of questions a week about my mental health journey, when I was the go-to for my friends and family when it came to mental illness and mental fitness. This was my entire line of reasoning for starting the blog. Why would I stop at this?
Another factor in this decision is that posting this will correct some of the public misconceptions I’ve portrayed about myself. I’m still diagnosed with OCD and have had it all my life. However, my treatment team and I had been attempting to shoehorn symptoms of Asperger’s into an OCD diagnosis, and other diagnoses where they didn’t really fit. Tourettic OCD? A thing, yes, but really what it is for me is texture intolerance, a common symptom of a category of experiences that can be described as “sensory differences.” PTSD? A large part of my diagnostic world, but it does not explain the specific physical and sensory reactions I have had to trauma. Social anxiety? Very much still a problem, but that doesn’t cover my robotic, formulaic, yet idiosyncratic approach to socialization. I’m known by my treatment team as highly intelligent, but why doesn’t that always translate into work ethic and academic achievement? We’d thought it was depression and anxiety. We thought too simplistically.
Yes, I’ve just been diagnosed with Asperger’s Syndrome, a subset of Autism Spectrum Disorder (ASD). I’m very high functioning, which is characteristic of Asperger’s. This diagnosis has had me in tears quite a bit over the last month or so, for a range of reasons. On the one hand, I’m scared of the stigma that comes along with this specific diagnosis, as being on the spectrum. I’ve had a lifetime of getting used to mental health stigma, but this is of a different kind, and I’m choosing to expose myself to it. However, I’m utterly relieved to be exposed to a plethora of explanations to behavior and thoughts of mine that couldn’t previously be accounted for. I have always been of the belief that sharing how you feel, sharing what you’re experiencing, is a better choice than not, almost all of the time. I think a bit differently about sharing than my family and team do, and believe it or not, that’s a symptom of ASD, oversharing about oneself, or “monologuing”…
My amazing psychologist first suspected this diagnosis when I met her, and she saw some of it in my familial line, too. We briefly discussed it but, because there was so much going on (chiefly, a severe eating disorder), we put it on the back burner. She’s a big believer in treating the symptoms rather about fussing about a diagnosis, and I often agree with that approach, but over the last few months we decided to re-examine it. We decided on it a month or so ago, and I took it to my psychiatrist, who affirmed it and prescribed me related medication (NOTE: There is no medication to treat ASD specifically, but certain symptoms can be managed with medication). That’s all there was to it. I suppose I’m lucky to have such a thorough and thoughtful treatment team, and if you’re seeking a diagnosis, I hope you can find the same.
I’ll now go over some of the hallmarks of my condition as I experience them.
As a child, a few symptoms of ASD/Asperger’s stood out. The first thing that my parents noticed was that I was late to talk. I began speaking months after my twin sister did. While she babbled and baby talked like the best of them, I was silent… until, months later, I burst into speech with near perfect skill. My vocabulary was advanced for a toddler of that age and every word was pronounced well, my sentences clear and meaningful. In children with ASD, speech delays are often present, but in children with Asperger’s in particular, there is often no deficit in speaking and communication ability.
I also began my aversion to certain textures early. I have vivid memories of ripping through my tights when I was at ballet classes, sobbing and wailing to my mother about having to wear them for special occasions (imagine a two foot tall, blonde fireball yelling at mommy about wearing tights… it’s funnier in your mind than it was in mine!). I knew from a young age that constricting clothing didn’t feel good on my calves, and as I grew into a middle schooler and eventually into early high school, I always kept a pair of sweatpants in my backpack lest I have an “attack,” or a sudden moment in which a switch flipped and my tight pants were intolerable, in which my legs and brain were “on fire.”
Speaking of high school, I would bring a hairbrush and deodorant with me everywhere. I often had several in my backpack. If I suddenly decided that my hair wasn’t brushed enough, the sensation was intolerable, and I had to brush it. If I decided that one side of my armpit could “feel the other” side, I would have to put on deodorant. Teachers at my high school for special needs children mocked me and berated me for doing this. I’ve long felt a fool. I still bring a hairbrush with me everywhere. I’ve written about this on the blog before, but I attributed it to OCD. Sike!
I got my braces off six months early. If I could change anything about my childhood, near the top of the list would be getting braces instead of Invisalign. For a child with ASD, having something permanently stuck anywhere on their body, especially if they have sensory issues, is an invitation for trouble. I cannot stress enough the frequency of the nights I cried myself to minimal sleep, the times I ripped the wires out of my mouth in a frenzy of tears, my upper body (shoulders, neck, mouth, brain) feeling like they were on fire. Eventually my family and I had enough, and after a year, they were taken off. My teeth were passable at that point, and still are. I’m pretty lucky for that.
Most of you probably know me as a social person. At least, those of you who’ve known me outside of Ridgefield High School do, although I did well enough for myself there. In fact, those who know me intimately already have detected elements of what I’m about to explain. I’ve expressed this in terms of PTSD but what I was really feeling was broader than just my trauma.
I’ve long felt as if I’ve been surrounded by a slightly grimy sheath of glass, following me everywhere, preventing me from meaningfully interacting with people. I’m exploding with empathy but in terms of conversationally connecting with people, I have to do what is called “masking” in ASD terms. Masking is the act of observing and imitating what others do in order to socially succeed. I’m extremely perceptive, and so will pick up jokes and mannerisms from people I admire very quickly. I try to laugh when I’m supposed to laugh, but I don’t always get it right. I struggle to think of what I’m supposed to say, when confronted with an in person interaction. I often feel out of place, like a synapse is missing. I have long feared, in particular, “one-on-one” interaction, for I can’t mimic how others in a group are behaving and instead have to carry myself with originality. It’s freaking hard.
This is a particularly common subset of ASD in women, who are much less likely than men to be diagnosed, partially because they can put on such a good face.
That’s how I’ve always felt- like I’m putting on a show. Some have described me as robotic, or formulaic, in the way that I interact with people physically and vocally. I’ve always considered myself to be excellent at communicating over writing; my texts are long, detailed, and have a slightly poetic quality to them, my essays featuring the same qualities. They’re where I express true feelings and intentions, which can come off strong since I don’t convey as much in person.
This is sort of a related field to socialization for me, for it focused primarily on the idea of monologuing. For me, monologuing looks like constructing a narrative in my head and hyper-fixating on it, talking about it to everyone, as if on a loop (my father claims to have invented the term for me, “looping,” and we were shocked to find from my psychiatrist that it’s a commonly used phrase in the ASD world, for he’d been saying it for years).
For example, I suffered under two abusive relationships in my high school years. In the case of both of them, the details became all I could think about and all I could talk about for a long time. I’d write paragraphs upon paragraphs in my notes app about what happened, all of which looked remarkably similar, going on long walks with my father featuring even longer tangents about the situations. This was exacerbated by, especially in the latter case, a total lack of care or resolution or closure given by the other party, leaving me to process my own trauma and PTSD with my amazing treatment team, who have had to reassure me literally hundreds of times that what happened was not my fault, that my monologues are valid, and never tire of them. My psychologist decided that the best way to help me with the narratives was to face them head on, engaging meaningfully with them every time. It’s really helped me feel heard, whereas when I was growing up, my family would (understandably) tire quickly of my talking.
I have vivid memories of being chastised for shying away from eye contact with adults as a child, and I still have to work hard to focus on just the middle part between others’ two eyes. I cannot sit through fantasy or fiction movies very well, if at all, and only read non-fiction books. As a child I refused to play fantasy games, instead insisting on playing “house” and “family” with barbies and other dolls while my sister swam with mermaids and flew with capes. Routines are extremely important to me and any disruption in plans or promises (especially promises) sends me spiraling. I am not good at reading folks’ intentions; I will often think a nefarious person is benign, and vice versa. I’m always the last person to understand the joke or interpret the sarcasm. I’m active on my debate team, but unlike my more extemporaneous teammates, I write my speeches at lightning speed during the off-time we get, update them throughout the rounds, and read off of them at top speed during my designated time. I am hyper-fixated on what is “right” or “good” or “honest” to the point where I fly off the rails if someone does something that is not in accordance with those values (previously known as OCD scrupulosity, it’s now related to both ASD and OCD in my pathology).
Anyway, I’m really glad I’ve decided to share this journey with you all. I’m just getting started on it and will likely write more on this subject in the future. If you have any questions about anything I’ve written, do not hesitate to contact me! I’m not the same level of expert on ASD as I am on PTSD or Depression, but I can probably give you good pointers.
I encourage you to be open minded when you hear the words “autism” or “autistic.” I know if may conjure some negative connotations to your brain, but there are all kinds of folks all over the spectrum who all deserve equal high regard. I happen to be very high functioning and can pass as relatively “normal,” whatever that means, but many other folks with autism can’t, and they’re just as worthwhile of love and respect as I am.
I hope this has helped. I know it has helped me.