My Diagnosis
- Emily Kay
- Dec 7, 2024
- 12 min read
Intro
Hi, I am EmKay Archlink. I am the founder of Archlink, LLC. Our mission is to spread autism
acceptance and education. Autism advocacy is my full-time job. All the money my other content
brings in goes to creating scholarships so schools can book my programs absolutely free. You
support our mission by listening to at least three minutes of this episode, and I couldn’t be more
thankful for your help. To support us further, there is information available in the description for
this episode.
With that being said...
Welcome to RAW-tism, a podcast about my autistic experience and my opinions on the world.
On this podcast, I will be raw and unfiltered. You are always welcome to disagree with me as
long as you do so respectfully and with no name-calling. Any usage of the r-slur will get you
immediately blocked.
Pre-Diagnosis
I have struggled my whole life with feeling out of place. I was the only one without a rulebook in
the game of life. I always made stupid mistakes and misunderstood things that were supposed to
be simple. Anyone I related my struggles with was known as “weird” in a bad way. Implied
meanings went right over my head and sometimes my genuine questions to teachers would be
taken as sass. I was a strict rule follower while somehow also being a smart@ss troublemaker.
My world was wrong. I was an alien on my own planet, in my own country, and in my own
home. Of course, there were times when this feeling faded, and I felt complete, but it always
returned and emptied my consciousness of any sense of belonging. I felt like Ariel not being
allowed at the surface, Moana was forbidden to sail, Belle was the only literate female, or
Hercules wondering where he belonged.
My Disney obsession is a great example of my special interests. That’s another way I felt set
apart from my peers. Special interests consist of a deeply rooted interest in a topic to the point of
almost becoming experts on the topic. This is different from hyperfixation, which is a more
temporary obsession, but that is a topic for another episode.
While Disney seems like a normal interest for a girl within the environment I grew up in, some
of my interests were very strange to people. In sixth grade, I brought the Official Pokemon
Handbook to school every day and read it during our downtime. At that age, while most girls in
my class were experimenting with makeup or reading Twilight, I was fighting imaginary
Pokémon battles in my backyard. Boys my age were mostly in the “I’m too old for cartoons”
phase, which is impossible — you are never too old for cartoons — but I didn’t fit in with them
either. I was in the middle, surrounded by people but still alone.
By the time I reached high school, I had perfected masking to keep myself off the teachers’
radars. For those who don’t know, masking is when a neurodivergent person suppresses their
behaviors to appear neurotypical. It’s most common with autism.
When I got to college, independence was very hard to get used to. The rules for existing changed
almost overnight. I had a lot of friends, classmates, and castmates over the years ask if I had
ADHD, OCD, or Asperger’s Syndrome. For those who don’t know, Asperger’s is an outdated
term that is currently labeled as Level 1 Autism. I always pushed the questions away, and joked
that I’m just weird. I have even overheard conversations between people debating whether I have
autism or claiming that I should stop “acting autistic.”
People who knew me would talk behind my back on my college campus, and most of it got back
to me one way or another. No one said anything to my face until the summer of 2022. I was
accused of acting the way I do for attention. I tried so hard for a few months to “fix” my
behavior, but it just felt like I was drifting further and further from myself. Talking to one of my
besties who was not involved (and happens to also be my editor) helped me realize that having
those friends in my life wasn’t worth giving up who I was. I had my faults, sure – the drama
wasn’t all on that friend group, and I acknowledge that my meltdowns and lashing out over not
understanding how to “fix” myself were part of the trigger for the collapse of my relationships
with them. It was sad at first, but I’ve let them fade to acquaintances.
The phrases that used to dent the armor of my confidence found themselves glued to the dark
side of my brain. I would lie awake at night, attempting to convince myself that I wasn’t autistic.
It just seemed like such a different experience from my own. There was no way I had made it to
22 years old and was in my second senior year of college without the profound knowledge of
how my brain works.
No way.
Poor little Emily still wasn’t convinced, so the research began. I dug DEEP into Autism
Spectrum Disorder, comorbidités, and other forms of neurodivergency. For those who don’t
know, comorbidités is a word used to describe the diagnoses most commonly found in patients,
such as (EXAMPLE), but that’s a topic to explore in a future episode. I fell down the dangerous
well of self-diagnosing and found myself drowning in “what-ifs” and stereotypes. Rationalizing
could have won me an Olympic medal for how fast my thoughts raced. Eventually, I said screw
it and found myself an online specialist in Autism Spectrum Disorder and the most common
comorbidities. I initially tried to get an in-person doctor, but did not want to drive hours to get
tested. Independent clinics do not accept insurance, so I shelled out an $800 fee for the entire
process. It seems like a lot, but it was so incredibly worth it.
The main concerns that I described at the beginning of my evaluation are summarized in this
quote: (Disclaimer: all quotes are edited for grammatical accuracy but are otherwise directly
transcribed)
“Emily reports she can have a hard time with communication, interpreting tone, or body language, or regulating eye contact. She struggles with the give-and-take of conversations and when it is her turn to talk. She also reports she can be seen as overly blunt or rude. She frequently engages in stimming and fidgeting. She also describes sensitivity to sensory input (she puts a flannel down if she is sitting on a chair while wearing shorts) and can be particular about the fabrics she will wear. She requires noise-canceling headphones at concerts and doesn't like flashing lights. She struggles to make friends and feels her friends don't understand her. She prefers having rules or a specific script (like in theater) and specific instructions of what she needs to do (given specific steps to do when cleaning her apartment). While she likes people, she is quickly tired by social interactions. Her therapist had recommended an autism evaluation.”
Reading this now really brings back those emotions I used to struggle with on a daily basis.
Since then, I’ve had the strength to cut those out of my life who’ve made me feel weak, and now
I only keep people in my life who take the time to understand where I am coming from. I’ll
explain more about this when I talk about my experience post-diagnosis, but for now, let’s talk
about my diagnosis paperwork so you can have a little more insight into my neurodivergence.
As always, I will do my best to be raw and honest about myself, but I will leave out some
findings from my evaluation for my privacy. I’m not ready to be 100% vulnerable to the world,
which is okay. We all have to live our truths, even if acknowledging the harder ones takes a little
longer.
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The Diagnosis
In the report for my psychiatric evaluation with the autism spectrum disorder specialist, Dr.
Ahuja discussed the results of other testing I have had in the past through my university,
including ADHD (Attention-deficit/hyperactivity disorder), learning disabilities, and CAPD
(central auditory processing disorder), all of which were labeled as inconclusive because of the
underlying issue that we now know is ASD (Autism Spectrum Disorder).
The quote she used to summarize my CAPD testing is below:
“Results of this test battery indicate that Emily may suffer from a more global language and/or learning deficit. While auditory issues likely contribute to her academic difficulties, poor performance across all auditory skills/functions and the left-ear advantages noted on multiple subtests, switching to a right-ear advantage on a subtest indicates a more global problem may exist. Additionally, her left-hand dominance with the pattern of test batter results could indicate a mixed dominance for language development.”
These are all fancy doctor words that just mean that I really struggled during the testing, and the
audiologist I was testing with saw that there were much deeper issues than simple auditory
processing issues. I was struggling with so much more. This was just one piece of the puzzle.
Hearing a professional concede that something was affecting my learning was incredibly
validating. I didn’t need to try harder or just pay attention. I needed help. Finding exactly what
help I needed was easier said than done.
The next testing I participated in was for ADHD and other learning disorders at my university’s
Counseling and Testing Center. This resulted in even fewer answers. The summary Dr. Ahuja
included in my psychiatric evaluation paperwork is two pages long, so I will not be quoting it
here, but I will pick out some highlights.
I completely failed my original ADHD testing, and since “the Barkley scales for ADHD, PHQ,
GAD-7, and PCL-5 do not have validity checks,” I was accused of falsifying my results.
“The energy and worry given to potential mental illness could suggest Illness Anxiety Disorder. However, this diagnosis is focused on somatic/physical concerns rather than mental health. Another condition that could account for this pattern is Factitious Disorder. However, this would require falsification of signs and symptoms in an attempt to deceive others. Based on this evaluation, it does not seem that Emily intentionally falsifies or creates concerns. Rather, it appears Emily spends significant energy worrying whether there is something wrong with her and seeking support and validation. Given the variety of physical illnesses noted, as well, Emily’s attention and motivation are likely negatively impacted when in pain or when using prescribed medications to manage pain. After discussing the invalidity of initial tests, she agreed to complete additional measures and attempt to do so without exaggerating; however, all measures completed that have validity indices found the same pattern.”
After retesting me and receiving the same inconclusive results, the Counseling and Testing Center gave up on me, claiming they couldn’t confirm or deny my learning difficulties. I was told on several occasions that I was exaggerating my struggles and that there was no way I’d have made it all the way to college with this much difficulty in learning.
Dr. Ahuja was the only one who understood how much extra work I had put in to match my
peers. Her findings, after reviewing the paperwork from the other testing I had had before my
psychiatric evaluation, made it clear that I was stuck masking, which skewed my results. I tried
so hard to hide my glaringly autistic traits that my entire being came off as false. Nothing I did
was quite right. My masking was effective enough to make professionals who were not
well-versed in autism doubt my need for ADHD and CAPD testing.
I was so good at acting like I knew what I was doing that my actual struggles seemed fake. It’s
crazy to think about. These professionals knew what I was struggling with but still missed the
diagnosis because of the hypervigilance and observation that my OCD (obsessive-compulsive
disorder) and PTSD (post-traumatic stress disorder) have given me. I was so used to how people
expected me to act that I was almost never fully me. If you don’t act like a disabled person, no
one is going to think that you are one. It is a huge problem.
Nowadays, I’m fully myself, and a lot of people who’ve known me for a long time see me as
“acting autistic” now that I’m diagnosed. I’m not “acting”. I’ve stopped acting. I’m not wholly
myself, for better or worse. I’m me.
After reviewing these sources, interviewing me, discussing with my fiance about me, and the
testing she gave me, Dr. Ahuja had her results, and I finally felt truly seen. I was diagnosed with
Generalized anxiety disorder [F41.1], Major depressive disorder, recurrent, moderate [F33.1],
Post-traumatic stress disorder, chronic [F43.12], Social anxiety disorder [F40.10], Persistent
Depressive Disorder [F34.1], Autism Spectrum Disorder [F84.0], Central auditory processing
disorder [H93.25], and Attention-deficit hyperactivity disorder, combined type [F90.2]. I will
break down the scales for a few of these diagnoses. If this part is too technical, feel free to skip
it. After the ad break, I’ll talk about my life now that I am officially diagnosed and living my
truth.
For ADHD, on a scale of how likely I am to be experiencing ADHD symptoms currently, I
scored 5 out of 6, with a score of 4 or more concluding high likelihood. On a scale of ADHD
symptoms affecting functioning, I scored an 11 out of 12. Finally, my likelihood of experiencing
ADHD symptoms in childhood was 84, whereas a score of 46 or more determines a very high
likelihood.
My overall score for the likelihood of ASD was 9 out of 10, where a score of 6 or more implies a
high likelihood of ASD. My struggles with social communication and interaction were scored as
moderate. Restricted interests and repetitive behaviors were significant. Social awareness was
mild, social cognition was significant, and social motivation was moderate. This is all to say that
my struggles were real. I don’t have the worst experience with ASD, but I do have some
debilitating struggles, and I’m still learning.
If anyone is interested in reading my report, please let me know, and I might be convinced to
post it with the transcription.
Ad Break
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Post-Diagnosis
My diagnosis has completely changed my life. I am happier and freer than I have ever felt.
Anyone who knew past me shouldn’t feel negatively affected by this news. I was who I was
because of how life affected me. It was not one person’s fault but the combination of my whole
childhood and existence. Just because I am myself now doesn’t mean I was faking who I was
then. Masking is more than acting or faking, that’s just the easiest way for me to describe it
without going into detail. I will be delving deep in a future episode.
Everyone that I loved in the past are still a part of me. Sadly, a lot of my social circles are now...
Somebody that I used to know“Somebody That I Used to Know,” by Gotye, Breaking Mirrors
The person that I considered my best friend for the first four years of college did their best, but
wasn't prepared for having an autistic friend. I don’t fault them for that. When I called to tell
them my diagnosis, they didn’t pick up or acknowledge my texts. We had already drifted far
enough that they just became...
Just a stranger I know everything about“Stranger,” by Olivia Rodrigo, Guts
I will admit those were just excuses to use songs in this episode. "Somebody That I Used to Know" by Gotye is such a classic, and I totally vibe with Olivia Rodrigo’s song "Stranger". I am who I am. My whole life has led to my current reality. It’s been a wild ride, but I feel like I’m truly
where I’m meant to be.
I tried to answer all of the questions that have been raised since starting this podcast, but if you
have any more, please feel free to reach out! You can email me at either rawtism@gmail.com or
emkayarchlink@gmail.com. You can comment on the transcription for this episode or any
episode on my Patreon, which is linked below in the description for this episode. Transcriptions
are always available to the public for free.
I want to give a special shoutout to my aunt, who inspired this episode. She got my thoughts
swirling, and this is where they ended up. I won’t name her for privacy, but if she listens to this
episode, hopefully, she’ll recognize herself. I love you and always appreciate constructive
criticism. Another special thank you to Balanced Innovative Care, where I got my psychiatric
evaluation, which inspired me to start RAW-tism. Their website is linked in the description
below.
Outro
Regardless of your thoughts and feelings toward me, I have a love for every one of you. You are
wanted by many, loved by many, and so many want you to stay in this world. I am one of these
“many”s and will always be. I hope you enjoyed this episode, and thank you for listening to
RAW-tism.
Self-Promotion
If you’d like to support this podcast, the description includes links with referral codes to Cirkul’s
water bottles, Pair Eyewear’s customizable glasses, and my favorite Amazon products. The
transcript for this episode can be found for free on my Patreon, which is also linked below.
Would you like to see more of me? In that case, visit emkayarchlink.com for links to my other
content. A new episode of RAW-tism comes out every Monday wherever you get your Podcasts.
The next week's episode of RAW-tism is posted on Patreon every Tuesday ad-free. Karaoke
videos are posted on Patreon every Thursday. Lastly, my book Unseen Powers is available in
hardback, paperback, or digitally through Amazon. Remember to drink water, eat some
nummies, and have your best life. Bye!!
Where to get the Official Pokemon Handbook:
Psych eval
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