How I Self-Diagnosed ASD: Part 2

I'm back again, to talk more about the DSM-V diagnostic criteria for Autism Spectrum Disorder. If you missed the previous post about self-diagnosis and the first portion of the DSM-V criteria, check it out before you keep reading. We covered the three main areas of struggle for Autism Spectrum Disorder: verbal and emotional reciprocity, nonverbal communication, and the initiation and maintaining of relationships. 

However, that's not all there is to it. There's a second portion to the criteria with four sub-points to it. In order to be diagnosed, an individual has to struggle with at least two of the four subpoints. Here it is:

"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 stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).

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 interests).

4. Hyper- or hyporeactivity to sensory input or unusual interest 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)."

(Taken from https://www.cdc.gov/ncbddd/autism/hcp-dsm.html).

That first paragraph of this I believe to be fairly simple to understand. The important parts are the points that follow, so let's go straight into number one.

I had to look up the meaning of "stereotyped" movements and speech. It boils down to repetitive behaviors that don't serve a purpose. Examples include rocking, head banging, and hand waving. I immediately translated this into autistic terms, and realized a lot of stimming behaviors would fall into this category. This point also includes things like lining up toys the same way you use them every time and repetitive language. Echolalia, a language disorder characterized by the repetition of words and phrases heard from others (or from music or television, or other sources), is commonly associated with autism.

I do exhibit behaviors in this category. When upset, I will sometimes rock, though it doesn't happen often (I have other stims that aren't as repetitive in nature as this, and they happen far more frequently). I like to eat Skittles (or other multi-colored candies like M&Ms and jellybeans) in certain patterns arranged by color. As a child, I had to have my crayons organized in rainbow order before I could even consider using them.

The big item for me here, though, is a language disorder called palilalia. Palilalia is the sister of echolalia in that it is distinguished by the subconscious repetition of words or phrases. The difference lies in that someone with palilalia will repeat themselves, not others. Just like with echolalia, the severity can vary greatly, as does the number of repetitions and volume level, in each individual.

When I was a child (say, twelve years old and younger) my mom used to tell me after I'd spoken, "were you whispering to yourself?" or "what was that? You were moving your lips." I was never aware of myself doing it, but the more my mom commented on it, the more I tried to pay attention and "catch myself" in the act. I gained some kind of awareness that I was silently repeating the same words I'd just spoken, but being that young I didn't think about what that meant. I practiced stilling my mouth once I'd finished talking, and in time, people stopped commenting on it, so I assumed I'd grown out of it.

I'm twenty-three now, and just a few weeks ago I caught myself doing it again. Then again just last week. I realized that I hadn't outgrown it at all, it had just gone undercover. If I'm paying attention, I find that my tongue continues to move behind my lips after I've spoken, accompanied by a mental echo of some portion of my own words. It's like when I talk, I'm shouting the words out into a canyon and they bounce immediately back to me. Some others online described some words as having a pleasant "taste" to them, cueing repetition. I think a slightly more accurate description is "savoring" the feel of a word in my mouth, and I gain a sense of completion by allowing myself to indulge in the repetitious urge. While I'm conscious of all this, I'm aware that if I force down the urge, it's like the words continue to echo in my brain, an itch I refuse to scratch.

It took some rather intensive googling, but I finally identified "that weird mouth repetition thing I did as a kid" as palilalia. What a relief to be able to summarize all that into one diagnosis. Palilalia is most often associated with Tourette's Syndrome, Autism Spectrum Disorder, and neurodegenerative diseases. I have no idea how pervasive this is when I'm not paying attention. Palilalia is, by definition, ruled by the subconscious. I found a testimony from another autistic with it online who often repeated things multiple times in a row at a normal speaking volume without noticing it until someone else pointed it out. I don't think I've ever repeated myself in anything louder than a breath, but the motions and mental patterns are all there.

Forgive me, I've rambled a bit. Time to get back to the DSM-V, point number two in this section. Insistence on sameness. Difficulty coping with change. Ritualized behaviors.

Routines are great. They help me feel in control of my life, and help build healthy habits. For instance, I wouldn't brush my teeth unless it was a part of my routine. That's not really abnormal; what is abnormal is when a deviation from routine causes anxiety and other mental distress. 

At my old job, I had a breaktime routine. I'd clock out roughly the same time every day, order the same food, go sit in the same room, go to the bathroom with ten minutes left on my break. Any deviation from that little routine such as a busy day causing delays in breaks, or feeling the need to go the bathroom sooner, would cause anxiety to start rising. 

Routines can also develop into one of the examples the DSM-V mentions, "rigidity of thinking." For a while, I had a habit of saying goodnight to my husband and then going into the spare room with my laptop to work on my novel for an hour or two before I slept. One night, I really didn't want to leave my husband. I wanted to stay where it was warm and comfortable and snuggle, and maybe even go to sleep early. But as I was laying there I felt my anxiety steadily rising because I Was Not Adhering To Routine. I was going to send myself into a meltdown if I ignored it, so I caved in and followed the routine I established even though I was aware I didn't truly want to.

And difficulty adjusting to change, well. Call me out, why don't you.

My mom has commented many, many times on how difficult it was to calm me down if plans changed when I was a child. Even as an adult, I still feel the onset of panic if plans suddenly change, even if the change is minor and easily adapted to on a practical level. It sends my brain into a tailspin that's hard to recover from. It has certainly interfered in my ability to function as an adult, at times. For example, my husband asked me the other day to take our car in for service while he was at work, and it was something I hadn't anticipated at all. I spent ten minutes trying to quell a meltdown before telling him I couldn't manage it that day, but I could do it the following morning. There was no logistical reason for the delay - it was purely mental. I just needed time to get used to the idea of adding something to my schedule.

What about ritualized behaviors? I don't have much of this, but when I'm tired, the idea of attempting to take an abnormal route home from work gives me anxiety, to the point I might risk heavier traffic for a few minutes in order to stick to the same roads I usually use. There are many ways to get to my house from work and vice versa, but I use the same path every time unless it's going to cause a significant delay.

This is what that paragraph is talking about. Insistence on sameness, adherence to routine, and ritualized behaviors. Often, disruptions to the usual patterns and routines of someone with ASD is a quick way to stress them out, and potentially cause a meltdown, even if the change is beneficial.

The third item deals with the famous "special interests" or "obsession topics" that autistics are so renowned for. What makes these interests abnormal can either be the intensity of the interest, or the narrowed focus.

For example, one my my interests is writing. At the moment, that means writing my fiction novel. A normal writer might spend a certain amount of time a day or week working on their project, and balance it out with the other activities they enjoy or need to do. Me, I did nothing in my blocks of free time but write my novel for a good two months, at least. Alright, there was an exception, I sometimes took the time to talk to my best friend instead of write - but we most often talked about writing. Her novel, and mine.

If a gaming itch takes hold of me again, I'll probably be researching mod lists, troubleshooting my mod load order, and playing Skyrim every night that I can get away with for weeks or months.

When I was recently overcome by the desire to learn Japanese, I researched the best ways to go about learning it without a class, found resources and materials, made a plan for teaching myself, and then worked at it for several hours each day when I could until my brain turned to mush and I'd sapped all my mental energy. 

If I decide it's time I watch another anime, I will take my time to locate one that snags my interest and then binge it until there's no more left to watch. Then I'll likely hit Pinterest to find fanart and memes about it and make a board to commemorate my miniature obsession. Then spam my friends with it. And then, possibly, read the manga, if there is one. If it's especially persistent, I might seek out fanfiction. Anything to engage my interest in it for as long as I'm obsessing over it.

Special interests can also be identified by focus, though. In other words, the subject of interest itself is very narrow in scope. For some people, this is something like an interest in a specific dynasty of China, a specific celebrity, or a particular style or time period of architecture. This would include my own interest in, very specifically, Harry Potter fanfiction. That interest can be further narrowed to include stories that deal with a disabled Harry, a Slytherin Harry, or a werewolf or vampire Harry (the more angst, the better). I've been reading these kinds of fics for around seven years now, and I've only branched out into other types of stories a handful of times. I consider it quite daring to read a fic that doesn't fall into those subcategories I listed.

The last point deals with sensory abnormalities. Hyperreactivity to a sensory stimulus is more commonly called a "sensory sensitivity" and hyporeactivity often manifests in ways such as being indifferent to temperature changes, or needing an extremely tight hug in order to really feel it. Many autistics have sensitivities to some types of sensory stimulus but also show some hyporeactivity to other stimuli. For some it's one or the other. I've never met an autistic who didn't have a unique relationship with their senses, but keep in mind that the DSM-V only requires two out of those four sub-points in order to make a diagnosis.

Personally, the sensory trigger that gets to me the most is noise from phones, more specifically videos and audio clips. Ringtones and notification sounds don't usually bother me unless it's prolonged for far longer than usual (for instance, a phone dinging over and over again for a slew of emails coming in at once).  I can't identify what makes the noise different from ambient music or televisions, but it only takes one second of noise from a mobile device for every muscle in my body to be achingly tense, stiff as a board, with my fists clenching and my lips pursed with the effort not to snap at whoever is using the device to shut it up. 

One second. 

I'm also sensitive to the taste of mint and menthol, so I use a special toothpaste to avoid those tastes and will only use cough drops if I'm practically unable to breathe from a sore throat. I can't handle competing sound sources for very long (if you're going to talk to me in the car, turn the music way down!). I dislike a lot of purely polyester blouses and can't stand underwear styles aside from briefs.

My husband (a diagnosed autistic) has a sensitivity to overheard lighting, especially chandeliers and fluorescents. They give him headaches if he's forced to be in the same room as them for any length of time. Thus, our house had lamps in every room, and the overheads only got used when I was alone.

There are plenty more I can name. Many autistics are sensitive to clothing tags, sock seams, synthetic fibers, crowded areas, and fluorescent lights - though everyone is different and what bothers one person may not matter at all to someone else. 

I'll only say a quick word on hyporeactivity, since I don't have much experience with it myself. If I'm melting down, or recovering from a meltdown, I really like pressure. I'll jam my noise-cancelling earbuds in with some favorite music playing to drown out any auditory triggers, cover myself with a favorite blanket and drag a body pillow over myself. That way I'm blocking auditory and visual stimuli so that my meltdown doesn't get any worse, and the pressure on my body helps me relax far faster than if it wasn't there.

Alright, well, that's the main diagnostic criteria from the DSM-V. It finishes its section on autism with a few caveats:

"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).

Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

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."

(Taken from https://www.cdc.gov/ncbddd/autism/hcp-dsm.html). 

I believe I exhibited symptoms of autism as a child, even if they didn't fully manifest until my late teens. I have always struggling with socializing, always had extreme difficulties adapting to change, had a lot of trouble learning metaphors (literal language), displayed palilalia, and played in very set ways. Mint has always made me gag, and I've always struggled to express emotions. 

My symptoms cause meltdowns that cause temporary mutism. Auditory sensitivities often force me to leave a room even if I'd like to stay otherwise. My resistance to change sometimes keeps me from desirable activities. I've spent days trying to recover from prolonged social activities. And the list goes on. My symptoms do impede my ability to live a "normal" life.

I'll admit I haven't done my research on Intellectual Developmental Disorder or Global Developmental Delay. I'll add it to my to-do list, but just going off of the names? I pulled straight A's in school, and the worst of my meltdowns and other symptoms didn't fully manifest until I was already seventeen or eighteen. I can check every other box; autism explains so many of my quirks and struggles far too neatly.

So, I feel I can reasonably say that yes, I am autistic, and it's a relief to say so.

If you'd like, take a look at the DSM-V diagnostic criteria for yourself here.

Keep an eye out for a follow-up post about other autistic quirks and symptoms that the DSM-V doesn't talk about! That post will be less research based, and more focused on the little quirks that I've seen tied to autism amongst the online community.

What about you? Have you ever struggled with any of these, or have experience with someone else who does?