Do you remember that scene from one of the all-time best movies, ever, The Matrix?
The dialogue goes:
Trinity: I know why you’re here, Neo. I know what you’ve been doing… why you hardly sleep, why you live alone, and why night after night, you sit by your computer. You’re looking for him. I know because I was once looking for the same thing. And when he found me, he told me I wasn’t really looking for him. I was looking for an answer. It’s the question that drives us, Neo. It’s the question that brought you here. You know the question, just as I did.
Neo: What is the Matrix?
Trinity: The answer is out there, Neo, and it’s looking for you, and it will find you if you want it to.
The question has been driving me too, but I didn’t dare believe that the answer was not only out there, but looking for me and ready to find me, if only I wanted it to. What is the Matrix? It is, after all, a system of control, a way of ordering the world. Everything that happens to me is mediated by and through the Matrix. So what is it, exactly? What is this “operating system” that so fundamentally shapes who and what I am? Why do I hardly sleep, and just who or what am I looking for night after night?
I think, because I was finally open to the answer finding me I suppose, my “matrix,” my operating system… is Autism. I’m an adult with an Autism Spectrum Disorder. Those in the know, know that with the advent of the DSM-V previous “autistic” designations like Pervasive Developmental Disorder- Not Otherwise Specified (PDD-NOS) and Asperger’s Syndrome have been folded into “Autism Spectrum Disorder.” This is somewhat controversial in the Autism community and I can see positives and negatives to it. That said, the DSM-V hasn’t been fully implemented yet; so clinicians are still using PDD-NOS and Asperger’s. I consider that a good thing. PDD-NOS has the lowest threshold for receiving a diagnosis of being “on the (Autism) spectrum,” and that’s the diagnosis I was preliminarily given last night. Yes, I know it’s an insurance formality, but I fully expect that we’ll eventually move to an Asperger’s diagnosis (while we still can).
This is an enormous relief. I’ve received numerous diagnoses before, like Depression, Anxiety, and most recently, (complex) PTSD. I still think there’s something to all of those, especially the last one, in no small part because I was terribly (emotionally) abused as a child. So, I get to deal with that too. Nonetheless, horrific as my upbringing was, it never quite fully accounted for what makes me, well, me, for what goes on in my head every day, for the effort it takes to get out of bed and make my way in the world. I’ve long felt so, terribly, exhausted, to the point that my fear and anxiety about getting a fatal disease was so unbearable in part because I suspected that my fight was gone, that when death came, I would welcome the opportunity to rest.
But why? Why so tired? Why is facing the world every day (still) so hard? Why am I so regimented? Why do I seek such order in my world, constantly arranging and rearranging things to make them “just so?” Why am I such a categorical thinker, constantly assigning things, people, thoughts, numbers, letters, and shapes to categories, systematizing all that I encounter? Why do I prefer certain things, and to such extremes? It’s not just that they have sentimental value; it’s as if they’re a part of me, and I feel violated when others use, touch, or even look at them? Why am I so verbose? Why do I feel such a need to provide extensive context for every little pronouncement, and why do I make pronouncements, going on at length about topics of interest so that it’s hard for others to get a word in edge-wise? Why do I struggle to make friends? Sure, I have people that care about me, even some lifelong “friends,” but they are few in number, and I can tell that being my friend is hard for them (hey, I can tell, that’s something for someone on the spectrum). Why do I get into unwanted conflicts as often as I do, usually because of some misunderstanding (on my part)? Why do people tell me I’m “just making things harder for myself?” Why do I find it so hard to start tasks, even work related high-stakes tasks that my and my family’s livelihood depends on, and yet can stay up all night pursuing a topic of interest? Why am I so “all or nothing” about everything? Why do I have such tunnel vision sometimes? Why, indeed.
In short, I now believe that the answer that I’ve finally allowed to find me is simply that, as I said above, I’m an adult with an Autism Spectrum Disorder. There, it’s out there. As I also said above, I’ve flirted with other diagnoses before like depression (for many, many years), anxiety, even PTSD. Yes, I know I got excited at one point too about the PTSD diagnosis, thinking that it might finally help explain me (to myself). Obviously, that proved not to (fully) be the case. That’s kind of the point, though. Ironically, as a Special Education professional in a school whose mission is to serve students with Asperger’s Syndrome, I often tell parents about the “pre-Autism cocktail,” the many (sometimes competing and some of which may be co-morbid) diagnoses that kids will often get saddled with in an attempt to explain their behavior, when all along there could be a single underlying factor that accounts for everything, like Autism. Somehow, though, I failed to see that in play for myself.
What finally brought me to it, sadly, is the likelihood that Samuel, my almost nine year old son, will have an ASD diagnosis very soon. As we deal with more evidence every day that this best explains what we’re seeing in Samuel, I did my homework on Autism (Autism! Which I deal with at work Every. Single. Day.) again, and realized that it probably best explains me too. So let’s explore my questions above and relate them to the DSM-V criteria, which is similar to what’s in the DSM-IV, I believe. The black text below is from the DSM-V. The red text is how I believe it applies to me (or not).
Autism Spectrum Disorder 299.00 (F84.0)
A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):
1. Deficitis in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
I’ve been told that I maintain a flat or serious affect. I certainly can smile and do, but it’s largely calculated on my part. I’ve been told that I’m very “intense.” In hindsight I know I initiate friendships awkwardly, often with lengthy emails seeking to “explain” me and where I’m coming from, perhaps in the desperate hope that if only people really knew and understood me, they’d love me, accept me for who I am, and want to be around me.
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
This is a skill I was forced to develop from a very young age. My mother was a severe emotional abuser, and I’ve been told that “empathy is the gift of emotional abuse.” I had to learn to read her unpredictable moods, or face “hellish” consequences. Yet, again in hindsight, I realize I still don’t do this all that well, and certainly not naturally. I’m often replaying interactions in my mind, trying to parse their meaning and predict consequences. Ask my wife. I’m often asking if I’m okay, and I no longer think it’s just because I’m desperately fragile and insecure. I think it’s because while in some intellectual corner of my being I know what approval looks like on a face, it usually doesn’t sink in. I don’t get it. I think it’s approval, or love, or affection, or caring or understanding or whatever, but how do I know for sure? I don’t. It’s a mystery.
3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.
I find myself frustrated with most friendships. I consider myself very conscientious in making the effort to build relationship (following learned social “rules?”), but do not usually feel that effort is reciprocated to nearly the same degree. I’m also told that I tend to “overcommunicate,” which I do because I’m aware of the dangers that any effort to communicate is fraught with. Hence, I want to remove as many variables as possible that might lead to misunderstanding. I want to provide context and give multiple opportunities to derive the intended meaning, much like I’m doing at this very second. Friendship is hard for me, though I desperately want it, and I guess I understand now that that’s because I (am “wired to”) make it hard.
Specify current severity: Level 1?
Severity is based on social communication impairments and restricted repetitive patterns of behavior (see Table 2).
B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):
1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
I have a lifelong stuttering problem, particularly when nervous. It’s changed over the past 10 years or so to what looks and feels like a vocal “tic” when stressed, nervous, tired, etc. I used to think my stuttering problem came from my mother, perhaps, and that I was so nervous in social situations because I knew I would stutter, terribly, and therefore knew that I would be bullied, terribly. I wonder now, though, if the nervousness and stuttering aren’t just indications of how different my brain is. I wonder if my social awkwardness, my struggle to relate to others didn’t precede all of this, and certainly the stuttering was related to it and exacerbated it, but there was something much deeper going on. I tend to bounce my knee or foot in what I’ve been told is excessive fashion. Due to high anxiety related to disease or illness, I’ve been told I use hand sanitizer to excess, when appropriate and often when not. I also use sanitizing wipes to, for example, clean pens that others have used. As a kid I used to get in trouble for cleaning up too much. My dad, for example, would complain that he couldn’t read the just arrived newspaper because I’d already cleaned it up.
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).
I have a high proclivity for change avoidance/resistance. I loathe change (especially “big” change) so much that when, in my calculus, it seems unavoidable, I’ll rush to make it happen in often inappropriate ways. I do not like having routines disturbed. When plans suddenly change, there is an automatic and unavoidable impulse to resist, protest, etc. Once this passes, I’m able to embrace whatever change I’m being subjected to. I’ve tried to explain this to my wife, Kirsten, that when she suggests a change to our “plan,” for the day, for the week, for household routines, for our life together, she should just brace for what (in hindsight again) is a little meltdown. I’ll protest and complain even if I ultimately like what she wants to do. I can’t help it. Speaking of plans, I rely on them, to extreme. I’m constantly asking Kirsten “what the plan is” for weekends, etc. If friends want to do something, I send email queries trying to nail down the plan weeks in advance, because I NEED TO KNOW. I’m sure I drive everyone crazy. Also, I have to be right. All the time. I know I make mistakes and get things wrong, and I can own up to those, but when it happens it feels like a violation to my very soul. If the rule is one that I’ve created, adopted, or adhered to, IT MUST BE OBEYED.
3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).
I wasn’t sure where to put this. I have what might be viewed as an unusual interest in multiples of 10. I’ll sub-consciously notice numbers in the environment, like “1535,” and begin adding the individual digits to make them come out as multiples of 10. So, in the example above, 1+5=6, +3=9; moving in the opposite direction +5 and +1 again = 15, plus the unused 5 at the end of the string = 20, a nice round multiple of 10. I do the same thing with letters. I take each single span of a letter and equate it with “1,” then add the spans of various letters in a word to also equal multiples of 10. So, take a common word in the environment like “shop.” S’ are easy as there are five “spans” or parts of the S (a straight parallel line at the top moving from right to left, a downward line, another parallel line moving from left to right, another downward line, and a final fifth parallel line moving right to left). The spans of the “h” add up to 3, “o’s” usually add up to 4, and “p’s usually add up 4 as well. So I’d take 5 from the s, 3 from the h, 4 from the 0, and 4 from the p to give me 16; then I’d probably use the p again to bring it to 20. I typically do this without thinking. I wasn’t even aware of it, I don’t think, until a few years ago, perhaps when I was working out the pattern of a word or number with my finger on my wife’s back. She was laying down with her head in my lap, watching a movie. She brought it to my attention by asking what I was “writing.”
I may perseverate regarding health due to high anxiety concerning, and in relation to, apocalyptic scenarios. I have google alerts set for flu (generally), bird flu (specifically), and the new Middle Eastern Coronavirus. I have a section on my Google News page dedicated to apocalyptic scenarios, including and especially those related to zombies. I can “catastrophize” at a moment’s notice. How badly things could go- and how quickly- is something I’m always aware of.
4. Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).
I pride myself on having “very good hearing.” I often hear things that others may not. I also have a keen sense of smell, and admittedly like to smell (most) things, except vinegar. I CAN’T STAND the smell of vinegar. I’m highly alert to the slightest whiff of it, which makes me want to flee the country. Kirsten says I startle easily, and I do. I have a visceral reaction to sudden loud sounds, which are almost a personal offense, whether intended or not. I used to think this was a PTSD thing. I now know it’s something more.
Specify current severity: Level 2
Severity is based on social communication impairments and restricted, repetitive patterns of behavior (see Table 2).
C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life). I’ve dealt with much of this since childhood, with childhood emotional abuse as an exacerbating factor.
This was a problem, diagnosis-wise. Honestly, my upbringing was so terrible that I really don’t remember much of it, and really don’t want to (I did remember the cleaning up thing referenced above, though). With both parents dead and few family friends, I had to reach out to my youngest (but still much older) half-sibling, with whom historically I’ve had a good relationship, in no small part because she was thrust into a caregiving role for me in my earliest years (it’s a long story). So, I asked her. Here is the message we exchanged.
I’ll just go ahead and put this out there. So, Samuel is on the verge of an Autism diagnosis. I don’t know how much you know about it, but his would be of the Asperger’s variety (which technically isn’t an official diagnosis anymore, but that’s beside the point). If you don’t know much about it, you can find out via this link. Going through this with him has led to some (further) hard self-reflection on my part and the realization that Asperger’s probably best describes me too. For the diagnosis to really “stick,” though, the autistic traits (or some of them, or leanings toward them) would have had to be present by age 3. You’re one of the only people around still that knew me at 3. I know of course that my mom’s abuse was a major exacerbating factor, and how much all of this is nature versus how much all of it is nurture is anyone’s guess. That said, the point in all this is that I want to ask you what you remember about me as a young child. I recall being described by Evette as a “little Spock” (showing little emotion over my very rough home life, which would be very “Aspy,” by the way), but what else can you recall about me then? You often talk about my fascination with trains (like Samuel) and that I would stop and mimic the train signal/crossing guard sound. Did I have other “quirks?” Unusual habits or “rules” I seemed to follow? A need to organize or systematize or clean up things? Odd speech or motor movements? Preoccupation with things that most kids wouldn’t be preoccupied with, or preoccupation with things that other kids would be but to an unusually great degree? Sensory issues (aversion to- or, conversely, preoccupation with- lights, sounds, the feel of things, etc.)? Please tell me what you remember. I need to know. Thanks.
You showed several things. Look at your baby pics. You did not laugh freely or with abandon like other kids. It used to take us forever to get a smile out of you. My heart cries everytime I think about it. You were facinated with lights. Besides sitting in front of the Christmas tree for extended periods , you did other stuff. One year Dad got you a Train for your birthday. It had lights and sirens. You would stand transfixed and shake your hands (bold text added) at it. You talked well and quickly but you often repeated yourself and would not look us in the eye. You had seperation anxiety when I went to the restroom ,like you knew you were in danger. So I talked to you through the door or let you in. I loved being there for you. One of my most painfull memories Was having to let you go. Praying Sam is fine ! hugging you right now !
As I said to my wife in an email after getting this last night, “So I guess that’s it, then.” The DSM-V continues:
D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning. Coping with daily life, including with many stressors in daily life, is becoming increasingly difficult.
This, I guess, is why we’re “here,” as this is definitely the case. All of the effort I put in every day to make it in the world, to “pass” as Neurotypical (NT) and even as a professional, is resulting in greatly diminishing returns. I don’t know how much longer I can keep doing this. It’s not working (like I want it to or think it should).
E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
Nope. I’m pretty smart (I skipped two elementary grades, for example). If Asperger’s was still an available diagnosis (which apparently it is), I suspect I’d be a good candidate.
So, in summary, “the Matrix has me.” Now what?