Patreon members and YouTube channel members had access to this video on May 11, 2022. The video’s public release will be July 20, 2022.
ID: Lyric, a pale skinned nonbinary person with short green, teal, purple, pink, orange, and yellow hair with shaved sides and jet black roots is sitting behind a white microphone in an RV with dark wood panel walls. The words “Reading My Diagnostic report ” floats in front of them in pale teal and green letters.
It was August 23rd, 2016, when I went in for the first part of my autism assessment, an in-person interview with myself and the person who would be reviewing my childhood history and medical records.
By the end of August, all of the interviews would be concluded, and by early September 2016, at the age of 29, I would be diagnosed Autistic.
At that point in my life, being almost 30 and having such a bombshell of a piece of information dropped upon me, I skimmed a 13 page (actually 14 page) diagnostic report, but was very overwhelmed, and couldn’t process the report in front of me. In fact, I threw the report into a paper shredder, and destroyed the report.
However, recently, more than five years later, I’m feeling more ready to face the information that was in front of me all of those years ago.
I reached out to the person who diagnosed me, and asked for a copy of this report. I’m going to be sharing some of the highlights from this report, as I review it with you now.
Note: I’m not going to be reading this report word for word, but I will share things that I find interesting, and if you would like to go on this journey with me, please do stay tuned.
OKay, a few things about this report before we get started:
The report was compiled by the psychologist that diagnosed me, based on interviewing myself, one of my guardians, and two of my childhood friends – one who knew me from the time I was in preschool on, and literally lived next door to me, and another childhood friend who knew me from high school, and is still currently a friend of mine, and knew me in both the educational and an adult workplace setting.
There were three people that knew me in various contexts of my life, over multiple areas of my life, that were able to share how I was growing up, as a teenager, as an adult, and as a child.
Because the autism diagnostic criteria is very much based on childhood presentations of autism, and how we are as children, they are looking to verify that you’ve always been Autistic, because Autistic People will always be Autistic.
We will be born Autistic. We will be Autistic our entire lives, and we will still be autistic until the day we no longer breathe on this earth. That, that is why they had people who knew me throughout my lifetime as part of the evaluation.
I also did fill out questionnaires, which were:
The Mental Status Exam, the Adult Asperger Assessment, the Social Responsiveness Scale, SRS-2, Burns Depression Inventory, and Burns Anxiety Inventory. Those are the things that were used to compile this diagnostic report.
Thing about this diagnostic report is it is long. It includes lots of private, detailed, medical and personal information about, not just me, but other members of my family. Therefore, there are details that I am going to omit. It is one reason, I am not going to be reading this word for word, and I’m going to be skimming it, and then sharing with you things I think will be relevant, and that I feel comfortable sharing.
Diagnostic papers are full of all kinds of personal information and you should never share them with anyone you do not trust, or who you don’t feel is necessary to share them with.
The other reason, I will not be reading from this report word for word is this was over five years ago, therefore it has the wrong name in the report, and my wrong pronouns, and labels me as a woman, because I was not yet out as non-binary, and had not gone through that part of my own self discovery journey just yet.
Therefore I will not be reading the report word for word, because it is constantly going to be dead naming and mis-gendering me.
Just skimming through my report, it starts out with background information, family history, just a little blurbs about my childhood and immediate family growing up, and the people who were my guardians, talks a little bit about family history, and some of the medical conditions that run in the family, and some of my medical conditions, that I’ve been diagnosed with, so a lot of personal information about me and family members, at the very start of the report.
Then it goes on to talk about the different sensory issues, I experienced as a child. Looking through the section about sensory issues, it talks about sensory sensitivities, and that how that ties into some of my health conditions I have, even now.
It talks about some of the motor control issues I had as a kid, and actually some of the stims I do. There’s some masking described in my report, talking about hiding and holding my stims back, and just being generally clumsy.
Having a regimented routine, wakes up at the same time every day. Then it talks about the different routine I have, and different things like that. I don’t know that those are sensory, but they’re like in the little sensory bucket.
After the section on sensory differences, there’s a section on my academic history, that talks about me being a noncompliant student, in first grade, and how I struggled to sit in my chair, and stay in my seat, and was a bit disruptive to the classroom, and how my sensory overloads and attempt to soothe myself, and take a break, weren’t received well.
Also a little blurbs about being in a special ed in second grade, and the trouble I had with math, and not being able to show my work, because the way I did my math in my head was not something that could be shown on paper.
Oh gosh. Wow. That takes me back a bit.
The next little section is restricted, repetitive interests. It goes through listing some of my interests, and talking about my deep love and passion for my interests, and how much my interests really completely do, fill my focus. That that’s all pretty accurate.
A lot of these interests are things that are still my interests today. Some of them come and go, and I’ll get hooked for a while, and then they come back. Well, yeah, that’s, that’s still true. Wow. Yeah.
Also it talks about me learning to read when I was two.
Reading was one of my first interests when I was two. “Loves information and was obsessed with it.” Yep. “Can read about interesting topics for hours without noticing how much time has passed”, “could lose an entire day reading and memorizing facts in the encyclopedias.” Yes. Yes. “Loved nature, arts, crafts and music, teaching myself to do things.” Yes. Still all of that is still true. It’s still, still true to this day.
The next part of the report is about social interaction. This is about halfway through the report, talking about my childhood best friend, that lived next door to me growing up, when I was in elementary school … talking about the way I played with my toys and the way I engage with other people and other children.
How I was very literal, as a young person, and how people often thought I was being difficult, or being mischievous, or being a smart Alec, because of that.
“Labeled strong-willed, disrespectful, and independent, that I do things my own way, didn’t really care what other people would think of me, wasn’t much of a people pleaser, constantly rubbing people the wrong way.”
“Outgoing, when I was very small, good at talking about topics of my interest.” I can ramble on about those basically.
“Not very aware of the dangers of other people, good at monologuing, talking at people instead of to people.”
“Learned about social mapping from a movie in seventh grade, developed a school face and a workface, spent a lot of energy trying to blend in”, and be “appropriate”.
Talks about my romantic relationship, how I use joking and laughing as a way to blow off awkward and confusing situations, difficulty remembering faces, then it goes on to talk about work.
Oh boy. Oh my goodness. So just reading this about work, I mean you can, you can just see… “expected to attend networking events, anxiety symptoms have increased due to that work expectation, four anxiety attacks in one month. Most frequent anxiety attacks that have ever happened.”
Over the past two years, I had “become more introverted” and my “confidence plumbited.”
Prior to this job, I had “worked in companies that had no fraternization policies, but the new environment, prioritizes socializing with teammates.” I did well before and other jobs that had rules and structure, and less social workplaces.
I want to jump down to the interview with one of my guardians, “very outgoing, creative, happy child, never shy, often wore costumes to school, and teachers commented on how inventive” I was, “many play dates with the neighbor next door”, that I mentioned earlier. “Began preschool at age three”.
“In the second grade, the teacher told my guardian that they wondered if I might have hyperactivity, and my guardian chose not to research the concern, and attributed my hyper activity level to boredom in the classroom. I was transferred to a private Christian school for third grade” – because that was the solution for my hyperactivity, was at Christian school. [/s]
“The structure and rules at that school were not a good fit” for me, and then I returned to public school in fourth grade, at that point, the physician advised medication for attention disorder”, which didn’t happen.
It says that I “enjoy drawing, painting and reading”, and although I “enjoyed playing with some of the dolls I had, I didn’t engage much in imaginative play with toys.” I was described as being “very independent, and possibly bored by the adults that surrounded me growing up.”
My “grandmother had migraine headaches as well”, like I did, “but she outgrew them in her forties, and used to have three to four migraines a year. They were often related to sensitivity to light, fatigue, and stress.”
Same, although I had them a lot more frequently, before I figured out what my triggers were, and started avoiding those triggers. Ah, it runs in the family, because I also have a maternal aunt, on the same side of the family that also has migraine headaches.
Are your migraine headaches related to sensory issues? If you have them, let me know. Is it light? Is it sound? Is it smell? What triggers your migraine headaches?
For me, a lot of it was fluorescent lighting.
The next section is an interview with one of my childhood best friends, that lived next to me in elementary school, that was mentioned earlier in the report.
It’s ironic, this report talks about how we were, and how we played together as young people. It talks about how we have lost touch at multiple times in our lives, because I am bad at maintaining relationships.
If you are my friend, you likely know this, and I’ve likely lost touch with you at multiple times. For years, months, I disappear. It’s what I do, and I’m sorry.
If you’re watching this, I’m sorry, because you know who you are, and I’m not, I’m not going to name you, but I am sorry, because I am a terrible friend in that respect.
It talks about getting into flow arts, and circus arts, and hoop, and yoga, and acro yoga. “All of the sudden I was physically fit, and extremely focused on this endeavor.” That’s that’s, that’s pretty accurate.
It talks about how we were just so close, at different points in our life. It talks about getting together to do things: photography, and that I would writing, and how to blog of my own, about yoga and those things.
Cause I was, I was blogging about yoga and writing about Buddhism and yoga. Back then, before I found out I was Autistic, and then autism became my new obsession.
It says that I “have evolved into a talented, focused and hardworking young person”. My friend says “that I work harder than anyone she knew” and doesn’t “know my limits.” That’s accurate. I don’t know my limits at all. I’m “a workaholic” and my friend is “impressed by my passion, passion and dedication to my work”.
“My friend thought I liked the moving meditation aspect of flow arts.” That is absolutely it. I was totally obsessed with the moving meditation aspect of flow arts.
“Sees me as being a little withdrawn and inflexible, but feels I am capable of, of having a reciprocal friendship.” Yay. I’m capable. It’s true. “Always felt that they were the dominant one in our friendship, and didn’t think I had other friends.” When we were younger, I really didn’t. You were my only friend, for a lot of years. You’re right on that.
” I cancel meetings often because of not feeling well.” Mmmhmm… it’s there.
Now, we’ve got another interview, from a friend of mine from high school, who’s still currently a friend of mine, who I don’t see enough even now.
Ironically, in the first paragraph, it talks about that “We were friends and lost touch for four to five years.” If you are my friend, and I haven’t talked to you in a few years, please don’t think it means I love you any less. I am a disaster, and this is a pattern, and it is something I do.
I love that you said, my dear love, if you watch this, “that it was like, we’d never been apart” because I agree so much, like the time passed, and then we get back together, and for those friends, that are those really special friends, it is like we’ve never been apart.
It’s great to really have those friends, that give that grace and understand that, when I disappear, it is not personal, and often has nothing to do with anyone else, except for me, retreating into myself.
Reading this part of the report, I can see very plainly, that my dear friend knew me a lot better than I even knew myself, five and a half, six years ago, when this happened. We were colleagues, and working together at the time, in addition to being high school friends.
That insight of my friends, seeing things in myself, that I didn’t even realize what’s happening.
My friend describes to me as, “going into overdrive mode and exerting all of my energy to be social engaging in my intense interests, being fully focused on one hobby after another immersing myself in one hobby and then moving on to new ones.” Some of the hobbies that were listed were hooping, yoga, Buddhism, and dog training.
My friend described me as “being open, loving, positive, and pure” and “felt like we were emotionally close, but I only had so much of myself to give”, which I think is so wonderful for my friend to, truly, understand me on that level.
It says: I “can have back and forth conversations, but speak rapidly, and tend to monopolize conversations and focus on things rather than feelings.” That is accurate.
I try to force myself to focus more on feelings now, because I understand other people focus on feelings more than I do. You know, me, you know me so well.
I “was working remotely, most of the week back then.”
My friend said that I “wasn’t exhibiting any visible signs of anxiety”, but because my friend knows me, “they could see that I was dying inside.” That is an exact quote from the report.
That masking is it’s invisible. My friend could see through it. I was dying inside. ” Could feel I’m very internally anxious though, works hard to disguise it on the outside.” I think I was really good at disguising my, my anxiety.
So the next section is titled behavioral observations, and the first paragraph in the section is based on observations of my childhood videos, that I took in with me to the assessment, starting at around nine months of age, all the way up through middle school.
” The first video is taken when I’m around nine months old, at a holiday,” Christmas, and I am “shown chewing on packages” and one of my guardians is “attempting to present me with toys”, but I am “completely ignoring my guardian attempt to gain my attention”. Says “no social referencing or joint attention was noticed in the video, when I was an infant, or as a toddler”.
Video footage, when I was around one year old, showed me “looking at the camera, with interest, but ignoring the people around me”. I like the cameras, still talking to the camera now.
“Spoke in a loud, horse voice, at age seven, very active, bouncing around in front of the camera. Laughing when uncomfortable.” When picked up by an adult, I “yelled, let me go and waved as a camera”.
Video footage of a play, that I participated in, in middle school was also reviewed and I appeared air quotes, “somewhat awkward, and demonstrated limited facial expression in the video.”
Jumping down, to keep it moving, because this video is getting a really long:
Under current test results: the Autism Asperger Assessment, was a total score of 41, which indicates probable autism, because of those with ASD 80% score, 32 or higher on that measure.
Then it talks about, having a score of 80 on the social responsiveness, SRS-2 test… talks about the Burns Tests, the anxiety index 35, for severe anxiety.
Yeah. I had a lot going on, and I didn’t even know I had anxiety. I was in complete denial that I had anxiety.
Moving on to the next section, under clinical impressions, it says that “historical recall, clinical interviews, video footage, and test data, supports an early history, marked by persistent social interaction and communication deficits, as well as restricted and repetitive interests, and behaviors, sensory sensitivities exacerbated by social demands, having resulted in increasingly disruptive physical ailments.”
I’m going to say Lyric, because it is my dead name, on the paper, “meets the criteria for a diagnosis of autism spectrum disorder, level 1, F 84.0.”
“Appears to be experiencing sensory, sensitivities, related to social anxiety, that goes above and beyond what is typical, and social anxiety has increased in intensity over time, and relates to increasing social demands.”
I was imploding. I was imploding. I was in a mental health crisis, when I was diagnosed Autistic.
” Experiencing marked fear of social interactions.”
” An additional diagnosis of social anxiety disorder, DSM-V, 300.23, or social phobia, ICD 10 F 40.10, is given in reflection to this.”
Overall, Lyric, “is it a resilient, creative and intelligent young” person “who has silently faced obstacles over the years. In spite of these challenges, they have demonstrated remarkable preserver, errands and resilience”.
Resilience… if only I could never hear that word again.
“Interviews of their family and friends indicate that they are well loved, and appreciated for their unique qualities.” Lyric “has a sweetness about them, that generates positive feelings in others. May the information, from this evaluation, provide them with the impetus they need to succeed in channeling a new direction, towards fulfilling and productive life, which increased self understanding and acceptance.
Then we have recommendations, and some of them are recommendations for various medical and genetic tests, because in addition to being Autistic, like many Autistic People, I have different co-occurring physical and mental health conditions, so some testing was recommended for some of those health concerns.
It was recommended that I do try sharing my diagnosis with my employer, which didn’t go well, unfortunately.
Occupational therapy, which I would have loved to access, I’d still would love to access, but just not something that’s in the cards for me at this point, nor was it when I was first diagnosed.
Psychotherapy, and possibly medications for my anxiety, something to get that anxiety under control.
Recommended, check out The Autism Society for more resources.
What was really helpful, the most important thing, was bullet point number eight, reading books by Autistic People about autism. Reading, firsthand perspectives, from Leanne Holiday Willie, and a book Women From Another Planet, Our Lives in the Universe of Autism, which was an anthology of various Autistic People, sharing their life experiences, Wendy Lawson, Jennifer Clark O’Tool, different books that were recommended to me, so that I could hear about autism from Autistic perspectives.
Those are what saved my life, hearing autistic voices, learning from Autistic People about autism, having that representation.
That’s what shifted me from getting this, very long, 13 page – 14 page – diagnostic report and not collapsing on myself in self pity, when I found out that the struggles I had been dealing with, were struggles that were going to come and go throughout my life.
There was no easy fix, but the fix was changing my life around. Changing to a life that suits me, and my needs as an Autistic Person, respecting myself, and working with my mind instead of against it, like I had been doing for many years of my life.
I’m grateful for all of that. It feels, it feels interesting, to go through this report, all of these years later. I hope you enjoyed going through this report with me.
Do you have your report? How long was it?
If you, if you, if you are someone who is privileged enough to have the paperwork, the autism diagnosis, how long has your report? How long has your diagnostic summary? 14, 20 pages, shorter? I’d love to know, drop a comment below.
Let me know if you found this interesting, helpful, or just, this was just way too long, way too boring, and not educational enough, drop it in the comment below.
If you’re still here till the end, hit that thumbs up, so that I know. I’ll see you all next week. Bye
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