Newly Diagnosed ASD Shame: I’m Not Really Autistic, Right?

moving target symbolizes changing autism criteria

I was diagnosed as autistic by a psychologist, and yet I don’t fully believe it. Am I actually autistic? Is my doubt a cover up for my shame?

A big part of growing up is finding your place in the world. This is not a straightforward process. It’s not as if you either find your tribe or you don’t.

People find the best fit they can where they are in life, and if the available options don’t fit their current identity, they mold themselves to adapt to their best matched group. Then, with exposure to more ideas and different people, they find better pairings and hop groups.

As this process goes on, you are maturing as you are adapting. You take what you liked from some experiences. You leave what didn’t sit well with you.

However, not all aspects of one’s identity receive the same level of scrutiny, and some adaptations carry over without conscious examination.

Resultingly, throughout this iterative process, one’s true motivation can easily become obscured.

It becomes difficult to differentiate between changes made for the good of oneself versus changes made to satisfy others. You don’t remember ever making any drastic changes, but little changes here and there add up. It’s like how your appearance changes with age; your face isn’t noticeably different from day to day, but the changes are apparent with time.

When one realizes they no longer understand the source of their motivation and consequently experiences significant stress, this is an identity crisis.

When you reach this point, you ask yourself, when was the last time I remember the freedom of being authentically myself? You realize you have changed what you talk about, how you speak, your interests, how you prioritize your time, or all of the above. You have changed your fundamental identity.

It is unclear whether that old recollection of yourself even exists anymore. It is unclear if that would be a step towards authenticity or a step backwards.

I realized I was having an identity crisis at a time when I was not having much luck connecting with new friends after a recent relocation.

I realized that, as I’d gotten older, I’d been progressively censoring myself more and more to the extent that I no longer felt I had a voice.

Mermaid representing feeling my voice is missing or lost from ASD diagnosis

I felt like I was drowning in the sea of expectations to which I had bound myself, expectations which I was starting to rebel against.

I did not just feel smothered by conversational expectations; all expectations were suffocating, even that I ought to clean my house and practice personal hygiene.

On some level, I knew that cleaning and personal hygiene served my best interest, but the feeling was overpowering. I was overwhelmed and burnt out, so I did not do them.

I felt like a child, an irresponsible child. That guilt did not make dealing with my identity crisis any easier.

Part of what led me to realize I’d lost my voice was being diagnosed as autistic.

This was not an immediate realization. At first, I avoided confronting my denial and self-doubt altogether. But slowly, I transitioned into research-mode, investigating autism and what being autistic meant to others on the spectrum, and I realized how uncomfortable I was with other autistic people.

Then, about two months post-diagnosis, I came across content about the Neurodiversity Movement. This was my first exposure to the idea that autism was a normal variation of thinking rather than a “disorder.”

What really resonated with me about the Neurodiversity Movement was that it validated autistic weirdness in a way that made me feel accepted. This sentiment is captured eloquently in an article by the same author.

Nick Walker wrote that being “neuroqueer” includes “[e]ngaging in practices intended to “undo” one’s cultural conditioning toward conformity and compliance with dominant norms, with the aim of reclaiming one’s capacity to give more full expression to one’s neurodivergence and/or one’s uniquely weird personal potentials and inclinations.”

I don’t actually identify as genderqueer, but I absolutely love these words!

This made me question, had I modified my behavior to suppress my own unique weirdness? And if so, how specifically was that supposed to be “undone”?

I did feel like I’d abandoned my unique weirdness, and that I’d lost my voice. I felt I couldn’t be myself around other people, and that made bonding with new friends more challenging.

And then, I realized my social inauthenticity and newfound burden to fulfill private expectations felt profoundly alike.

I realized I was rebelling against all expectations.

This was reality-shattering.

I was essentially rebelling against myself, and I was not okay with that.

New perspectives

Acknowledging this prompted me to reevaluate the expectations I imposed on myself.

I began asking myself if a given task were something I actually wanted. And I found that deliberately affirming expectations made them feel far less weighty and overbearing.

As this internal probing progressed, I started showering more frequently. Three cheers for a decrease in body odor!

I wouldn’t say that these newfound, autism-inspired insights entirely resolved my identity crisis, but they were certainly clarifying.

Soon after gaining motivation from these insights, it started bothering me that I’d found strength in having my weirdness validated by learning about autism.

Everyone is weird, and so I shouldn’t need someone to tell me I’m autistic in order to accept myself.

If I could have accepted my weirdness of my own accord, I wouldn’t have experienced the degree of anxiety that led me to seek a diagnosis. I beat myself up about that.

I became suspicious if, subconsciously, medical validation partially motivated my diagnosis-seeking.

YouTube-affirmation bias?

Prior to my evaluation, I did scour YouTube to identify those on the spectrum with whom I most related. Maybe I became too attached and my motivation was skewed by a desire for a medical professional to affirm that I was like them.

I worry this could mean my motivation was corrupt, that biased the evaluation, and the diagnosis was misplaced. I think this hypothesis warrants research—it could be called “YouTube-affirmation bias” or “neurolurker bias.”

Even though I answered honestly — albeit nervously — throughout the evaluation process, these doubts make me feel like a fraud.

Are diagnostic criteria too broad?

Another reason I grapple with whether my autistic label is deserved is because the standards for autism inclusion are expanding.

Over time, ASD diagnosis rates have been on the rise in parallel with changing medical standards influencing who gets diagnosed.

At what point in the evolution of diagnostic criteria has autism most accurately been captured?

This is an impossible question to answer because the accuracy of the evaluation standard can only be measured relative to itself.

moving target symbolizes changing autism criteria
Autism diagnostic criteria seem to be a moving target.

Inclusion of the self-diagnosed

In addition, autism identification rates are even higher because the autistic community is overwhelmingly accepting of those who self-diagnose. There are good reasons for them to be.

One autistic writer describes this inclusivity as follows:

“In an ideal world, I believe Autism would be seen as a form of naturally occurring diversity, and that members of the community would be able to define themselves. Under this framework, it’s just as oppressive and ignorant to ask someone to “prove” their Autism as it is to demand someone prove they’re transgender or gay. If someone has experiences and needs in common with us, and benefits from aligning with the community and accessing community resources, it’s self-evident that they belong in it.”

While I can appreciate where Devon Price is coming from, this gives me pause.

If everyone is welcome, what does belonging even mean anymore?

I fear that excess inclusion risks undermining available autism supports if such inclusion indicates the community is becoming more about fostering belonging than about satisfying medical requirements.

If that medical checklist is not comprehensive, of course it ought to be updated.

But I imagine there is a point when the inclusion of people facing fewer difficulties negatively impacts the public understanding and resources available for those most in need.

I don’t belong!

Given my high degree of privilege and limited autism-difficulties, I believe my autism diagnosis could be damaging the broader autism community. I am ashamed to share my diagnosis with others out of fear that they might think similarly.

Perhaps my thoughts on this matter are more a result of my own denial than of a concern for the larger autism community. Perhaps I’m simply experiencing the prejudice from a lifetime of internalized ableism.

I was only diagnosed 3 months ago.

While I don’t understand the true impact of such expanded inclusion, I nevertheless believe this topic deserves candid attention despite the discomfort it provokes. I cannot be the only one experiencing such shame.

In summary:

I am highly conflicted by the opposing sentiments of doubting whether my inclusion as autistic is justified or even harmful, and yet nevertheless feeling more at ease with myself as a result of that inclusion.

I am ashamed that such inclusion granted me a sense of relief because I grew up heavily inundated in the ‘pull yourself up by your bootstraps’ mentality, and so my reflexive reaction to joining a validating community is negative.

My southern roots scream, I should be able to validate myself, thank you very much.

Chart shows anxiety led to autism diagnosis and my ASD diagnosis led to more anxiety, shame, and possibly self-acceptance
My diagnosis experience – 3 month perspective

Likewise, my reaction to having medical professionals offer me support because of my diagnosis is also negative. I don’t want to be dealt special treatment (even in a positive way).

I don’t feel I deserve special treatment because I can’t reconcile autism as part of my identity; it doesn’t feel like it really fits.

I appreciate the idea of neurodivergent acceptance more than I appreciate any sense of validation from being recognized as autistic.

Even if I were to come around to accepting the “autistic” label, I fear how this would impact my behavior.

It has been said that labels are supposed to be descriptive, not prescriptive.

However, I posit that labels are both descriptive and prescriptive (whether we want them to be or not). The iterative cycle of finding one’s place in the world is a tradeoff between authenticity and fulfilling a role.

I think my biggest fear is that by associating with autism, I could gain further self-acceptance but with the unavoidable side effect of altering myself, subconsciously conforming to whatever I think “autistic” means.

I’m afraid I won’t be able to discern between behavioral changes resulting from self-acceptance or conforming to my new role, and that uncertainty makes me feel like a fraud by default.

I’m still grappling with what it means to be autistic. Despite my doubts, I am glad to have learned about autism and neurodiversity.

Moreover, I’m slowly coming around to the idea that receiving validation is valuable.

We live in a culture wherein there are a lot of social pressures informing us that being different is bad and should be hidden. I don’t think it unrelated that we also live in a world wherein a lot of people are cynical, sarcastic, and depressed.

We could use more groups that spread the message that being different is not only natural but beautiful.

The world should adapt to you. Don’t adapt to the world.

Just be mindful that your present self-conception doesn’t prevent you from identifying and developing into who you want to be.

Are other autistic folks thinking some of these same things but too embarrassed or too worried about offending their community to talk about them?

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10 Responses

  1. “I fear that excess inclusion risks undermining available autism supports if such inclusion indicates the community is becoming more about fostering belonging than about satisfying medical requirements”

    It seems to me that this is not sound reasoning. Firstly, the groups offering inclusion (Autistic communities) are not the same as the groups responsible for medical/other kinds of accommodations (medical/therapeutic professionals, institutional bodies, etc). Nobody should worry that a medical professional will see a facebook group that welcomes the self-diagnosed and say, “Looks like all autistic people are doing just fine on their own!”

    Conversely, however, someone who can’t afford a diagnosis, can’t find a diagnostician, or has been denied needed supports because they don’t have an official diagnosis can benefit greatly from online communities where they feel surrounded by people who understand them. ‘Belonging’ as a value should *not* be underrated.

    Not to mention that even with a diagnosis, lots of people still go without needed supports.

    I was diagnosed last year at the age of 42, but only because I am lucky enough to know the right people. Part of the reason I wanted the diagnosis was to access OT services through my university, which required it to be official. I got the diagnosis, and then the services. I have been so very lucky. I was autistic before the diagnosis, though, and if I’d known there was a community out there I would have been self-diagnosed from my teens. If I’d had self-diagnosis, and community, I might have avoided decades of hating myself for being weird and different.

    Self-diagnosis is valid.

    1. I think it would be close-minded to assert that self-diagnosis is always or never valid. I’m talking about that grey area. I framed my discussion around belonging to tie in with my larger theme of validation. Thank you for commenting.

  2. This speaks to my own experience in a way not many post-late diagnosis testimonies do. I felt disempowered by it until I started reading blogs from other autistic people.

    Like you, I grew up in a bootstrap-mentality culture and rejected any resemblance of forgiveness to myself, for the mere fact of Passing until I suddenly stop passing (and it’s attributed as “bad faith, Actually”). I don’t even identify as “disabled” even though autism is a disability (and it isn’t because of internalized ableism, it just doesn’t fit to me as identity). There is an important nuance there to take into account.

    Yet when meeting other members of the community I’m part of, with different support needs, I recognize stages in my life too. Someone hasn’t learned to read the room yet? Been there. Someone has trouble telling when an emotional display is too much? Been there (and sympathize too). The point is, that was the final reality check for every “maybe I’m not autistic enough” moment and I haven’t had those since.

    (Even by reading to Naoki Higashida’s “The Reason I Jump” I felt seen, even though I don’t experience dyspraxia nor I’m non-verbal like him.)

    And then there’s the other side of the equation: I met another autistic community (women-focused) that was full of accomplished people who received a late diagnosis and had rather high masking. It was a nebulously painful experience: I was confronting heavy internalized misogyny AND internalized ableism together (“maybe I’m not putting enough effort like these women, they followed their truth and you didn’t, they are more accomplished than you”). Yet I knew they were very autistic themselves, there was no doubt of it (ironically I could tell by their masking).

    The point is… It’s the variety of experiences what completes this picture. The reason it seems like “everyone’s too included” is because for the first time in history we aren’t the only reference to have on our own. Growing up the only autistic person you know (or maybe there were more but with different nuances) and then having this explosion of many other points of reference does that.

    Thank you so much for sharing your point of view!

  3. Wish there was more group hopping. Too many folks accept as the only reality the first life that happens to them. It saves thought, + there are usually other folks whose approval is tied to wanting you to do that.

    1. It depends on the day really. Sometimes I do more than others. I don’t think about it as often now too.

  4. Hey, Andi Barclay. This might be “pathological demand avoidance”. It’s an autism profile still within the pervasive developmental disorder, but presents differently from classical autism

  5. I’m at the YouTube research stage.

    I’m mostly worried that I’m just a pothead, but I’ve always really struggled with my social life since I was a kid. I was also born with microtia so I have an underdeveloped left ear that I can only hear barely in unless I wear earplugs with the stereo balance shifted so it’s blasting as loud as I can get it and then I can hear the drums and bass. Not that I’m complaining, but I’m also conflicted over having a sense of pride for a mild disability. I wish I could simply communicate my needs and accommodations to people plainly and have it be a non issue, but people often forget that I need them to walk on my right side when we’re walking down the street because it’s hard to hear them, and sometimes I feel like people think I’m exaggerating even though I’m really not. Having 2 ears is a major advantage. This is an added challenge on top of potentially being autistic. I’m hoping to get some support this year. I need my parents help. They’re wonderful people but they’re older and less sensitive to my challenges.

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