Man holding a hashtag sign to signify that he is a neurolurker or undiagnosed or questioning autistic person

Are you a #NeuroLurker?

8 min read

When I wrote the article, “Very Grand Emotions,” it went viral. Looking at the comment section on PsychCentral and our own website, and comments around social media where the article was shared, so many responses began like the following:

I don’t know if I’m autistic or not, but…

I have always known I was different, and this might be why…

I am not sure if I’m autistic, but this confirmed for me that I am definitely not neurotypical

I am diagnosed with ADHD, but I’ve always felt like that only answered a few of my questions…

My child is autistic, and I think that maybe I am, too…

Since being in autistic advocacy, I’ve met many people who have identified themselves as allies; however, it was clear to me that they were definitely autistic. For the people I’ve gotten close enough to feel comfortable to bring it up, they have generally reacted with relief. They considered the allegation that they were autistic as a compliment.

Really, if you receive the statement, “I think you might be autistic” with profound relief and gratitude, then you’re likely autistic. If you’ve been browsing through other unofficial labels — like empath, highly-sensitive, indigo child, etc.– trying to figure out why you’re so different, you might be a NeuroLurker.

Neurodivergence

There are quite a few neurotypes that fall under the umbrella of “Neurodivergent,” and we tend to share a lot of traits. Outside of autism, there is also ADHD, dyslexia, sensory processing disorder, Tourette Syndrome, etc. that can have overlapping characteristics with autistic people.

But, if you were born in a rural area where diagnostics and awareness was behind, or if you were born before the late 90s, it’s very likely that you weren’t diagnosed. Many– perhaps most– of our contributors at NeuroClastic weren’t diagnosed until adulthood, some into their 50s, 60s, and even 70s.

If one (or both) of your parents was also neurodivergent, then your traits and behaviors may have gone unnoticed because to them, they seemed “normal.”

Even now, in 2020, it’s very difficult to be diagnosed as autistic in adulthood. I asked a group of psychologists one time how much education they had about autism, and even those who received their graduate degrees in the last few years could only recall a brief mention in childhood development courses. Many couldn’t recall any mention of autism.

Stereotypes about what it means to be autistic also prevent people from finding their way to a diagnosis or recognizing their own traits. I had a graduate degree in psychology, and in education, and taught in public schools for more than a decade. Then, I married an autistic man. I still didn’t realize that I was autistic because I had no idea what it actually meant to be autistic and female/nonbinary, or autistic and adult outside of a stereotypical profile.

I didn’t realize that I was autistic until a friend pointed out that almost all of the characters in a novel I was working on were autistic. Even the one I had internally diagnosed with a personality disorder. That’s because I hadn’t heard of masking, and how someone can be like a human shape-shifter, adapting to their environments because they had studied human behavior so hard that they could become anyone in order to survive.

Here are a few excerpts from that (still unpublished) novel about the female autistic character who led me to my own awareness and diagnosis:

She was undeniably beautiful and equally as brilliant, fiery and complicated, a plasma that would sooner assume the shape of a container than be broken down to fit inside.

And here, as she begins to unmask and figure out who she is when she isn’t being everyone else:

The canon by which she had lived—as a female, as a Hindu, as a daughter, as an Indian-American, and as a student—would have colored her behavior as deviant, reckless, and impure, but she was surrendering to a paradigm shift that allowed her to explore herself without constraints. I was privileged enough to be a witness to the creative and decisive rearranging of all the pieces of an identity.  Each iteration, each new piece added or old piece shed, each fragment fleshed out and restructured, was an honor to watch as she authored a self emerging from the stifling circumstances that threatened to stamp out her evolution.

There it was, an autistic female taking off her social identities and masks, being in the safety of the presence of another autistic who couldn’t mask and who had no social identities. I had written this whole novel, this long and winding tome, full of characters I didn’t realize were autistic. They were all just pieces of me.

I had started unmasking before I had any idea about my own neurotype. After I met my (now) husband, I had room in that relationship and validation to find myself and be authentic. He liked most about me the things that everyone else hated or found weird, and that’s how I felt about him, too.

She was a wildly fascinating character study, unfolding in layers like the quantum nature of time.  She existed on multiple planes, her realities being compounded and conflated by my participation in her world and hers in mine.  In this process, as her identity began to effloresce and stratify, mine only became more concrete.

NeuroLurkers: The Origin

So what exactly is a NeuroLurker?

In a conversation on Twitter, I was looking for a hashtag to help find people who were not active in the autistic community, but who would like to be. At first, it was for autistic people with few followers, but it gave rise to many conversations from people who mostly “lurked” (read but didn’t participate) because they weren’t sure if they were autistic.

Some were parents or teachers/professionals who realized they had more in common with their children than with non-autistics. Some were diagnosed with other neurodivergence (ADHD, OCD, and dyslexia, mostly), but questioned if they were also autistic.

And some had read articles from our site and other autistic advocates and had seen themselves represented. They weren’t participating because they didn’t want to appropriate the label without being sure. Some felt sure but were uncomfortable participating without an official diagnosis.

So, #NeuroLurker became the term that made space for those people and invited them to the conversation. Since starting the hashtag #NeuroLurker, several people have either been officially diagnosed or have felt confident enough in their suspicions to claim being autistic. Some are content to just participate in discussions and hashtag #NeuroLurker.

What NeuroLurkers Should Know

I asked in our Facebook Group, NeuroClastic has an article for that, what it was that NeuroLurkers should know as I anticipated writing this article. I was surprised to learn that many of the members were, themselves, in the NeuroLurker category. Here are some of their suggestions:

  1. You don’t need to meet every trait to be autistic. There are traits shared by the majority, and there are traits that are often discussed, but you don’t have to check every box to be #ActuallyAutistic. If someone posts an #AskingAutistics question on social media, I generally only respond to it if it applies. I don’t have trouble with clothing textures or eye contact, so I typically scroll past those discussions. If you’re a #NeuroLurker, just know that most of us who aren’t like [insert trait here] are probably just not weighing in on it.
  2. Self diagnosis is valid.
  3. Stereotypical presentation of traits will sound like they don’t apply to you at first. You might not flap your hands or do anything obvious as a “stim,” but you eventually learn that there are so many non-obvious types of stims: twirling your hair, chewing gum/pens/straws, bouncing your leg, counting things like your steps, grinding your teeth, or even listening to the same playlist over and over.
  4. It’s the norm, and not the exception, for your therapist or psychologist insist that you aren’t autistic (see above).
  5. Many autistics have learned to mask so much that they don’t know where their mask ends and their true self begins.
  6. Many autistics experience complex trauma, and they might not be able to tell what is a result of trauma and what is autism– or if it’s both.
  7. There are myths about autism that will make it seem like you’re not autistic (like that autistics lack empathy).
  8. You may have been diagnosed with one or several mental illnesses in order to explain away your traits. It’s nearly impossible to be autistic without experiencing anxiety and/or depression. Many are misdiagnosed with personality disorders and bipolar type 2, as well.
  9. You might not know any adults who are autistic, and so you don’t have enough frame of reference to compare yourself; or, you might know someone who is autistic and very different from you– and those things cause doubt.

Outside of this list, there are many reasons a person might not realize themselves as autistic. Most of the clinical criteria was developed according to children who were white and male, and your culture, religious background, ethnicity, gender, and many other social intersections– and other factors like parenting style, if you had other autistics (diagnosed or not) in your family, etc– will factor in to the unique person that you are. So, your traits will be unique to you.

One of the places where I’ve found the most dense concentration of #NeuroLurkers was in a group for former evangelicals. My theory is that these undiagnosed autistic people make up such a large percentage of “exvangelicals” because they needed to live authentically rather than to protect their social identities.

Helpful Articles for NeuroLurkers

Here are some articles that might help you to work through your NeuroLurker status and better understand your place on– or off– the autistic spectrum:

Humanizing the DSM Diagnosis for Autism — to see how subjective experience differs from clinical criteria

Very Grand Emotions — to see how autistics and non-autistics experience emotions differently

“It’s a Spectrum” Doesn’t Mean What You Think — to explain what is actually meant by the spectrum and how each person is going to be different according to a complex web of traits

Autism: The Self-Diagnosis Debate Part 1 and Part 2 — A two-part series designed to help adults navigate self-diagnosis or self-identification

Directory of Specialists Diagnosing Autism (ASD) in Adults — This is a list of diagnosticians who diagnose adults. Names in red have been vetted and verified as being neurodiversity-friendly and aware of the presentation of profiles in all genders.

The Painfully-High Price of Autistic Masking Part 1 and Part 2 — The ways in which masking can successful hide autistic traits, but the consequences are exhausting, devastating, not sustainable, and potentially even fatal.

7 Comments

  1. I’ve been a neurolurker for the past few years. I finally mentioned that I thought I may be autistic to my therapist, and she shut me down pretty quickly. Thank you for letting me know that this is a common experience. I’m still pursuing a diagnosis, and I’m scheduled for evaluation in April.

  2. This is extremely helpful to me. I have an autistic son. I have been misdiagnosed with a personality disorder and bipolar 2. All my life I’ve counted things, mostly my steps. I listen to the same (large) playlist all the time. I have all sorts of habits and routines that are meant to calm me down and/or keep me calm. Maybe I’m autistic too.

  3. That explanation was awesome! I honestly didn’t know what neurolurker meant until I read your article! Here’s hoping you can help more people!

  4. I’m sitting here crying. Because I’m realizing that I got beaten for doing many of the things that I now know are absolutely a direct result of some kind of diagnosis that I should have had, and should have been given grace for, but was instead beaten for. Are my memory problems only because of being beaten and the subsequent trauma response that caused my brain to shut down my memory centers? Would I fit that criteria of autism if not for being beaten and humiliated and tortured? Does it matter? It only matters because I was just retelling a story to my husband of when I was beaten for asking “what?” because I couldn’t hear/process what was said to me. I HATED looking in people’s eyes but I forced myself to do it because I was beaten for it. I mean, I just don’t understand. I never understood why everything I did or said seemed to trigger a cavernous, extreme rage in my father. I learned to twist myself into a hollow shell of a person who did ANYTHING to survive. I learned how to lie to save my life. But ask me to lie now? I just can’t do it. I can’t do it because my life isn’t in immediate danger. Someone was asking me to verify something positive about a family member yesterday after the funeral and I just couldn’t make myself say anything because it would be lying. I just met this new family member and I was there representing my mom and I SO BADLY wanted to not make her look bad and all I could muster was a half hearted shrug and a bewildered pained look and a mumble something along the lines of “sure.” Are all my masks just starting to deteriorate? Has it been too long and I don’t have the strength to fight it anymore? I literally can’t be around my birth mother’s family because they are all so full of shit and they are so mean to each other and EVERY TIME I’m the one who calls them out and EVERY TIME I’m a bitch. It’s beyond exhausting and draining and I just can’t. Won’t. I won’t expose my children to that. I don’t understand how my own birth mother was totally fine with routinely dropping me into that situation.

    I have so many traits, but missing some that seem pretty important to a diagnosis. But also raised in an evangelical abusive household and have a lot of trauma and PTSD. I’m a #NeuroLurker. I don’t know what to think. Not looking for answers. This did make me cry though. In a good way. So thank you.

  5. What do you mean “white”?

    1. So, question, what would be the benefit of diagnosis in my sixties, other than to confirm my own suspicions about myself and a few family members?

      As an aside to Irving W., who asked, “What do you mean “white”? The history of science, medicine, and psychiatry/psychology is a history primarily of white male Europeans studying white male Europeans. It has only been in the last ten to twenty years that it has been expanding to include minority ethnic and racial groups and women of all groups, including white women. What this meant in actuality is that, if you were a white male you would get one diagnosis/classification, and a different one if you were not. Which means that white males got different treatment than non-white males. Please note that this is also skewed towards the upper end of the economic spectrum, which is predominantly white males.

      – Scott


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