My Diagnostic Criteria for 299.00 Autism Spectrum Disorder – CDC Style

The CDC has a list of diagnostic criteria for Autism  Spectrum Disorder, based on the DSM-V. In their diagnostic outline, they ask for the rating of severity, which I think is a little deceptive. AS issues can range in severity, depending on time and circumstance and the age of the individual. And in later years, while our issues may affect us severely, the way we express / display them may be mitigated by “survival techniques” we’ve learned along the way. So, observations of behavior — especially later in  life — may not be accurate reflections of experienced issues.

Here’s what the deal has been with me at different points in my life:

Criteria / Example

Childhood

Teen Years

Adulthood

  1. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history:
I had trouble hearing and putting information together. I spent a lot of time in books and isolation, with imaginary friends who didn’t laugh at me or reject me when I messed up. I didn’t understand pacing. Usually led the conversations, or stayed out of them. I started using drugs and alcohol when I was 15, to help me interact with others. I felt slow and dumb – like everyone else knew what was going on around me, but I didn’t. I have difficulty understanding people when they talk to me. I dread social interactions, although others say I do great. I never feel like I’m really participating – just doing a really good impression of conversing.
  1. Deficits 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 was more of a lecturer than a conversationalist. I never felt like my conversations with other kids “went anywhere”. I preferred to exchange information than “hang out”. I shared very few of my peers’ interests – especially girls. I shared my interests freely, but not everyone was interested. Adults around me were – also, the adults in my family were very academic and science-y, so my way of sharing information wasn’t always seen as weird. I felt like an outsider, unless I was active in a structured activity with clear expectations – participating in sports, especially track and cross-country. I assumed a stance that I was separate and apart from others, that I was “too cool for that” and I lived by my own rules. I did, of course, but in part if was a defensive posture in response to a world that confused and frightened me. I had trouble talking to other people and getting clear on task/job requirements, and I had a hard time asking for help or clarification when I needed it. My partner says I’m emotionally off. Others have told me that, as well, telling me I’m emotionally wounded. I prefer to exchange information, rather than emotionally socialize. I avoid other people when I can. I don’t want to talk to them.

Criteria / Example

Childhood

Teen Years

Adulthood

  1. 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.
I was very literal kid. I didn’t understand idioms or lingo. I had trouble hearing and distinguishing sounds, and I got much of my information from books – which was sometimes steered me wrong, or I interpreted the wrong way. I’m not sure if I had poor eye contact, but my mother used to lecture me on how my face looked. She used to get so alarmed at how my face looked and would exclaim in dismay. I had no idea what she was talking about. I didn’t understand the social clues that other kids were showing to me. I also “sent the wrong message” to people. This led to misunderstandings and confusion around romantic interests, as well as social interests.

I don’t think eye contact was really comfortable for me, but I can’t recall people making a big deal out of it.

I tended to “hold forth” about my favorite subjects with anyone who would listen, whenever I got the chance. I remember well how my classmates would get glassy-eyed when I’d get going. I didn’t understand what that meant, however, or what I was supposed to do about it. Teachers had to tell me to stop talking.

I am still very literal, and it’s easy to trick me with jokes. I still don’t understand nonverbal cues from others, and my “signals” are often misinterpreted as sexually suggestive or forward. People often think that I am in a couple with others I am traveling with or hanging out with. People sometimes tell me I look angry, when I am just thinking. It’s hard for me to read faces.
  1. Deficits in developing, maintaining, and understand 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 tried to have friends, but I was too possessive, too “close” for them. I preferred to play alone. I had a lot of imaginary friends who were a way for me to practice my social interactions with others. I never cared much for my peer group, preferring the company of people much older than myself. I was bullied in 7th grade and had no real friends in 8th grade. I was alternately afraid and didn’t want to be bothered by my peers. I had a number of friends in high school, but that was thanks to being in sports, as well as drinking. Also, my environment was very social and full of spectrum-y people, which facilitated that. In my late teens, when I started college, I had a lot of trouble interacting with others. Couldn’t deal with my roommates, alienated them, pushed them away. My early adulthood was marked by much residual difficulty from my teen years. I got into trouble with men who thought I was interested in them (I wasn’t), bosses who found me either insubordinate or rude (laughing inappropriately at/about them), and coworkers who I trusted wrongly.

I currently have no reliable friends, really. I exchange emails with one or two people, and I have “friends” on social media, but in person I don’t have a lot of reliable friends. Work – with its structured environment and strict rules – is my social outlet, as well as volunteering, where I have a specific role to play. I still have imaginary friends.

Criteria / Example

Childhood

Teen Years

Adulthood

  1. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history:
My special interests as a kid were so consuming, I thought I was a part of the worlds I studied – Native American, LotR – re-enacted scenes from those worlds with deep passion and conviction. When I wasn’t playing sports, I was immersed in my own world. I bulked up on requirements at the beginning of my senior year, so I could spend the second half in the library, just pursuing my own interests. I have sunk thousands of hours into my special interests, not always with the intention of “doing anything with them” – researching, writing about them just for the love of them. I spend a lot of time alone with my Sis, and I often leave my partner alone so I can focus. I feel bad about this – she is often alone – but I cannot deal with a lack of alone-time.
  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).
Not sure about this. I may have lined things up? Would sit and watch dust in the sunlight for long periods of time. Rubbed a hole in the satin edge of my “blankey” while self-soothing so I could sleep. Repeated lines from books, movies, t.v. Shows – esp. Monty Python. Not sure about stimming. Quotes from Princess Bride & Monty Python. Rocking in the shower to soothe. Stimming with paper/napkins, pressure, stim toys, typing,
  1. 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).
I was very distressed at any sort of change. School year starts were traumatic for me. I got completely bent out of shape, when my parents updated the kitchen. I freaked out and melted down many times during the process. Otherwise, my family & environment was very routine-oriented, anyway, so that met my needs. I follow the same routine each morning, also throughout the week. Changing my schedule is very disruptive (when Dr. Cohen announced he was retiring, I was more upset that my Tuesday evening appts with him were going to be disrupted, than I was upset at him moving). I take the same routes to places, even when I know another route will be shorter. I can be a very rigid thinker.

Criteria / Example

Childhood

Teen Years

Adulthood

  1. 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).
Native Americans cultures of the mid-Atlantic states & the Iroquois Confederacy. Maps. King Arthur & the knights of the round table. Writing & reading. Nature. Keys. Coins. Stamps. Woodworking. Narnia. My home-made chemistry set. Lord of the Rings. Tarzan. Nature. Woodworking. Drinking & how best to obtain beer and hard liquor. Sports. Writing. Reading. The Resistance during the Third Reich. Dr. Who. Kung Fu Theater. Web development (self-taught). Medieval women mystics. Mythology. The Holy Grail mythos. Quantum physics. Neurology. Autism. Neuropsychology. Zen / za-zen. Drawing. Writing
  1. 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).
Sensitive to: sounds (vacuum cleaner, sudden loud sounds like motors starting), touch (water on my hands & wrists, feel of certain clothing, light touch felt like pain – hugs especially)

Insensitive to: pain (?)

Visual fascination with: spinning objects, dust floating in sunbeams, water flowing in streams and creeks and rivers, spiraling down the drain.

Sensitive to: sounds (vacuum cleaner, sudden loud sounds like motors starting), touch (water on my hands & wrists, feel of certain clothing, light touch felt like pain – hugs especially), smell (cleaning supplies)

Insensitive to: pain from injury (twisted my ankles many times while running, kept going)

Visual fascination with: spinning objects

Sensitive to: sounds (vacuum cleaner, my partner’s singing voice, sudden loud sounds like motors starting), touch (water on my hands & wrists, feel of certain clothing, light touch felt like pain – hugs especially), smell (cleaning supplies – don’t clean as much as I should because of this)

Insensitive to: pain from injury (bang myself up a lot while working, but cannot recall where or how or when I got hurt)

Visual fascination with: liquid movements

Criteria / Example

Childhood

Teen Years

Adulthood

  1. 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 have always felt this way – I think my memory may be impaired about a lot of things, because I was so intent on dealing with the stresses of my surroundings that I wasn’t able to “encode” a lot of memories properly. There are massive gaps in my recollection about my early childhood. I have a lot of memories of being confused and laughed at, as well as trying really hard to get along with others, but failing. I used to crawl back under the farthest, darkest corners of my bed and hide to escape the overwhelm. I also used to curl up into a fetal position in a tight corner in my bedroom and become unresponsive to anyone. I was very conflicted about my gender identity. I didn’t think I was a girl, and I thought it was unfair to be constantly treated like something I hadn’t chosen to be. I was an interesting mix of painfully shy and observing, and someone who just dove right in (and often took over or made a mess of things socially). My early teens were extremely hard. I had trouble interacting with my peers (I didn’t have any interest in them) and I just wanted to get away from everyone. I had imaginary friends in imaginary worlds. I climbed trees to escape people. I spent as much time alone as I could. I was also very conflicted about my gender, and puberty totally screwed me up. I didn’t want to become a woman. At all. My teen years saw a lot of mitigation of my issues after I entered high school, because I started drinking, and I also was surrounded by kids like me, who were very “spectrum-y”. Also, everyone was very social, and I was an attractive young woman, so I was brought into a lot of different social groups because people wanted me around. I was outwardly funny and fun to be with, but inwardly, I often wanted to just curl up and die. I have learned a ton about how to better interact with others, how to handle myself, how to blend in and pass. The need to pass became much more pronounced in my adult years, especially after I left the area where my family is from, and spent more time around neurotypical folks.

Criteria / Example

Childhood

Teen Years

Adulthood

  1. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
Socially, I was isolated. I had troubles hearing and understanding what people were saying to me – and then figuring out what that meant. I was bullied in 5th grade, and I never developed lasting friendships with anyone. My friendships were limited and intense, and that sometimes drove my friends away. I had a terrible time at home dealing with family demands – my mother was very rough and hyposensitive, and our house was always loud and “clanky” with all her slamming around into things and making a lot of noise. I was uncoordinated at the worst possible times, and that angered my father – he would yell at me and call me names. Socially, I appeared to be dealing with things, but it was a rocky start that had me isolating at first. Underage drinking was the solution to my social anxiety and feelings of being out of synch. Sports also played an important role. I never felt comfortable around my peers – I couldn’t decipher the male-female interaction dynamic, and it was very confusing for me to have boys be interested in me. I hung out with kids older than me, so I could learn how to behave and handle myself. I learned a lot from others who were significantly older than myself. In my late teens, I got involved with a number of older men, one of whom started to stalk me. I had no idea how to handle it, or even how to conceptualize it. I was a sitting duck, and I paid for that for years. My early adulthood was marred by social confusion and residual trauma from failed interactions in my teen years. I married a man in order to smooth over the social issues I had – he took the lead on everything, so I didn’t have to figure things out. But I was a butch lesbian, and it made no sense for me to do that. A lot of people were hurt by that poor choice and the resulting fallout after I left him.

I still have a lot of issues with figuring out social cues between men and women, and not knowing if someone means something they say to me in a certain way. My autistic behavior goes in peaks and valleys, depending on my energy and the demands of the circumstances. I used to melt down a lot, in my 20s and 30s and 40s, but after I went through menopause, a lot of that evened out, and I have not had as many meltdowns. I still shut down and have issues with mutism at times – I just can’t find the words.

Criteria / Example

Childhood

Teen Years

Adulthood

  1. 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 co-morbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
I tested high on intelligence tests, but I was kicked out of the gifted students’ class because I could not complete the work and I was disruptive. Neurological issues were not uncommon with my family. My issues were so variable — at times so extreme, other times not noticeable at all — it fits with autistic patterns I’ve read and heard about. I believe there was a great deal of intersectionality in my situation as a young kid. My teen years were largely spent with others very much like me. So, we were all exceptional together, and few of us stood out as “weirder” than everyone else. There was a lot of acceptance of Aspie-type behaviors and traits, because well, that’s how we all were. In my later teens, when I went to college, I got a taste of what NT behavior and expectations were like, and it really threw me. I had trouble with young men, and also a stalker who had mental health issues of his own. I couldn’t read the signals, couldn’t defend myself or discourage the situation as I wished I could have. I became quite adept at masking my issues and blending in, the longer I lived in the adult world. I learned early on that being my kind of different was a recipe for exclusion, teasing, ridicule, isolation. Life is one extended experience of trial-and-error, and I’ve gotten used to not really knowing what is going on around me, but pressing on, anyway.
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