What made me think I might have autism?
It all started on January 31, 2022, as most of my major life events do, when my bestie Ebony messaged me. They were taking some online assessments for a variety of conditions, including autism. I asked some questions, they answered with answers. And then we had this foretelling exchange:
I started to do some research online, reading up on how autism presents for folks who are not cis men, and eventually asked Ebony for the link to the questionnaire they’d taken – the RAADS-R. I took it and sure enough, my results were past the threshold for autism. So I took a few (read: eight) more assessments.
I screenshotted all my questionnaires and my results, and created an excel file to chart my scores relative to the average autistic and allistic scores. And then I created a PowerPoint to display my charts. Because of course I did.
Did I get a diagnosis?
Short answer: Yes.
Long answer: After taking several online questionnaires over the course of a couple of weeks, I started looking into getting a formal diagnosis. Formal diagnoses are notoriously difficult to come by for adults and for women/femme-presenting folks, and especially for adult women/femme-presenting folks. Wait times for assessments can be up to 2 years. So I did a ton of research (read: looked into 57 different diagnosticians), I emailed seven, heard back from three, and picked one.
I had my assessment on May 7, 2022, at the end of which my diagnostician said “I’m confident that you meet the criteria for an autism diagnosis.” The formal report she later sent me confirmed this.
What assessments did I take?
Over the entire course of my research and assessment, I took ten, including:
- Aspie Quiz (yes, I hate the name)
- Ritvo Autism Asperger Diagnostic Scale – Revised (RAADS-R)
- Autism Spectrum Quotient (AQ)
- Camouflaging Autistic Traits Questionnaire (CAT-Q)
- Repetitive Behaviors Questionnaire (RBQ-2A)
- Systemizing Quotient – Revised (SQ-R)
- Empathy Quotient (EQ)
- Online Alexithymia Questionnaire (OAQ-G2)
- Reading the Mind in the Eyes Test (RMET)
- Social Responsiveness Scale – 2nd edition (SRS-2)
My co-occurring conditions
As I said in the intro, different combinations of autism and other co-occurring conditions result in completely different flavors of autism.
Below, I’ve copied Table 1a and added a column indicating which co-occurring conditions I have.
| Condition | Notes | Joy has? |
|---|---|---|
| ADD/ADHD | Attention Deficit Disorder / Attention Deficit & Hyperactivity Disorder Autistic prevalence: > 50% | |
| Giftedness | NOT synonymous with Savant Syndrome Neurotypical prevalence: 1% Autistic prevalence: 0.7-2% | Yes |
| Savant Syndrome | Neurotypical prevalence: < 1% Autistic prevalence: 10-28.5% | |
| Hypermobility | Hypermobile connective tissue resulting in bruising, hyperextension of joints, etc. | Yes |
| Alexithymia | Difficulty identifying & expressing emotions Autistic prevalence: 40-65% | Yes |
| Autoimmune disorders | ||
| POTS | Postural Orthostatic Tachycardia Syndrome | |
| FND | Functional Neurologic Disorders | |
| Fibromyalgia | ||
| CFS | Chronic Fatigue Syndrome |
Table 1b: Common conditions that co-occur with autism, including Joy’s conditions.
Additionally, having autism makes one more susceptible to a variety of conditions/experiences. Below, I’ve copied Table 2a and added a column indicating which conditions/experiences I have.
| Condition/experience | Notes | Joy has? |
|---|---|---|
| Sleep disorders | Neurotypical prevalence: 50% Autistic prevalence: 73% | Yes |
| PTSD | Autistic prevalence: 40-60% | Yes |
| Addiction | Autistic folks are 2x as likely to develop addiction compared to neurotypical folks | Yes (self-harm) |
| Sexual assault | 9 out of 10 autistic women and femme-presenting people report experiencing sexual violence | Yes |
Table 2b: Common conditions and/or experiences to which autistic folks are more susceptible, including those Joy has experienced.
My brain
Research has shown that autistic brains produce 42% more information at rest compared with allistic brains.
How this manifests for me is that the volume of my world is cranked up compared with the volume of allistic folks’ world. Additionally, because I am “gifted” (or my preferred label of “hyper-processing”), I also experience increased brain activation. If I compare myself to a computer, this means I consistently have more programs running simultaneously and am using up more computing power. Therefore, I run hotter (burn out quickly) and need a larger fan to keep me cool (i.e. I need more rest / downtime).
My symptoms
Here are some of the hallmarks of autism in me (taken directly from various assessments):
Interpersonal
- I am frequently misunderstood.
- I find it easier to understand and communicate with other autistic people than with neurotypical people.
- I prefer to keep to myself.
- I find it hard to be emotionally close to other people.
- I prefer to interact with people one-on-one or in small groups.
- I prefer to communicate via typing than speaking unless I’m discussing one of my special interests.
- I prefer to do things on my own even when I could use other people’s help or expertise.
- I dislike surprise phone calls or visits.
- I use words and phrases from movies and television in conversations.
- I don’t know how to act in social situations. I get along with others by following specific rules that help me look “normal”. I imitate others’ behavior to help me appear “normal”. I adjust my body language and facial expressions so that I appear interested in the people with whom I am interacting.
- If I’m not focusing very hard on it, I’m usually not aware of what my face is doing.
- I dislike when people walk or stand too close to me.
- I do not miss my friends or family when we are apart.
- Meeting new people is extremely difficult for me.
- I cannot tell if someone is interested or bored with what I’m saying. Consequently, I tend to assume I’m boring someone (and stick to very short responses) unless they explicitly indicate otherwise.
- It is extremely difficult for me to work and function in groups.
- I find it difficult to work out people’s intentions, and I do not recognize when others are trying to take advantage of me.
- I feel awkward in turn-taking conversations.
- I struggle to speak/think clearly if I’m making eye contact.
- I prefer to talk to friends while doing activities rather than sitting and talking.
- I experience times when I experience verbal shutdowns.
Joy’s note: My experience of having verbal shutdowns is NOT a total inability to talk. I CAN physically get words out, but talking is EXTREMELY painful. This is typically the result of autistic burnout or nervous system overwhelm. During these periods, the process of speaking feels like I’m trying to do a simultaneous translation of Russian while being held underwater. In short: it’s exhausting. And from the outside perspective, there are no signs I’m experiencing this. Typically, when I experience verbal shutdowns, if I have the option, I will stop communicating full-stop, not speaking to anyone in person, and I’ll stop responding to texts or phone calls. These periods can last hours or days.
Emotional
- I tend to shut down or have a meltdown when stressed or overwhelmed.
- I express my feelings in ways that may baffle.
- When asked which emotion I’m feeling, I frequently don’t know the answer.
- It often takes me several days to become aware of how I was feeling in a given moment.
- I like it when someone describes the feelings they experience under circumstances similar to my own, because this helps me see what my own feelings might be.
Sensory
- My eyes are extremely sensitive to light and glare.
- I fiddle/fidget with things.
- I bite my tongue or cheek when anxious or nervous.
- I am bothered by clothing textures.
- I am bothered by light touch.
- The sounds of motors and electricity are extremely painful. I listen to podcasts, audiobooks, music, or movies/tv shows 100% of the time to drown out motors.
- When I feel overwhelmed by my senses, I have to isolate myself to shut them down.
- I am easily overwhelmed by smells, textures, noises, lights, and can feel anxious or frightened as a result. Lighting and smell are the biggest sources of discomfort.
- When I have sensory overwhelm, I can have meltdowns that DO NOT END when the “catalyst” for them is resolved.
Joy’s note: From the outside perspective, these meltdowns look like I’m refusing to accept what others believe to be “helpful”. From an outside perspective, I will appear to be stubbornly adherent to staying in distress. This is because any attempts to “fix” the “catalyst” will be woefully misguided as the “catalyst” is not actually the problem. The problem is nervous system overwhelm which is always ignored by others in favor of addressing superficial issues as determined by the outside perspectives. This is why “fixing” is not helpful.
Thinking/processing
- I tend to get so absorbed by my special interests that I forget or ignore everything else.
- I have an avid perseverance in gathering and/or cataloguing information on a topic of interest.
- I notice patterns in things all the time.
- I notice details that others do not.
- I need to keep going with my task until I’m finished.
- Whatever I’m doing, I want to continue doing. It is MUCH harder to take breaks and start back up than it is to keep working.
- I cannot picture/imagine things I have not seen before.
- I use my imagination for practical means (ex/ how to solve a problem, construct something, etc.).
- My imagination is usually not spontaneous, but rather used in a more controlled fashion.
- I VERY RARELY dream or daydream and when I do, it’s not fantastical but rather rooted in reality.
My accommodation requests
The following are expectations I would set or changes I would request to help me avoid burnout:
At Work
- I am often unaware of my facial expressions. I may be scowling even when I’m happy. Please don’t assume anything about my emotions based on my face.
- I need time to adjust to a change in tasks.
- I need to take notes in order to follow along in a meeting. These notes are for personal use only. I am not the meeting’s secretary.
- If you expect me to be productive, I need heat and warm lighting (no fluorescents).
- I will be playing music 100% of the time. I am able to focus on my work with music playing. I’m able to focus on a conversation with music playing.
- Just because I can do something really fast and really well, doesn’t mean I can/am willing to teach you how to do it. Knowing a skill and knowing how to teach it are completely different abilities.
Interpersonally
- I often don’t know what I’m feeling. If you ask and I say I’m fine, I am NOT lying to you. If you ask me later how I’m feeling and I’m able to answer, I wasn’t lying to you the first time. I now have more information and am able to answer with more details.
- I don’t like being touched from behind and/or unexpectedly.
- I play music/podcasts/audiobooks constantly.
- I will meltdown from overwhelm and it will look like I’m melting down because of a “catalyst”. You fixing what you perceive to be the “catalyst” will not solve my meltdown.
- I am able to communicate more and for longer via text.
- I can talk to you in person for longer if I don’t have to make eye contact (ideally if I’m working with my hands while talking to you)