What it’s Like Being a Self-Diagnosed #ActuallyAutistic Adult

Myranda Uselton

My research on autism has helped me reach a peaceful state where I can fully be myself without shame.

By Myranda Uselton

The irony of being a self-diagnosed autistic adult can’t be ignored. We’re expected to properly explain and defend our neurodivergent brain. Of course I can’t explain it coherently as I struggle with communication skills (I’m autistic).

I excel in masking my personality quirks and emotional needs. Among the autism community, most individuals find it easier to express themselves in writing; it is the same for me. I’ve had to succeed as an adult in a neurotypical world.

I’ve compiled here a comprehensive defense of my hypothesis as to where and how I fall on the autism spectrum. My hope is for this post to solidify my decision to identify as autistic, gather information for my family members and loved ones who want to learn more about autism, and provide support for others who are or suspect they may be on the spectrum.

Autism Spectrum Disorder in the DSM

Let’s first consult the Diagnostic and Statistical Manual (DSM) of Mental Disorders, the psychologist’s Bible. You can view the full autism diagnostic criteria here.

To paraphrase, the DSM classifies autistic individuals as having impaired social communication and interaction, ranging from difficulties making friends to the complete inability to relate to others. Second, autistic individuals have restricted interests and activities, typically comprising of repetitive movements such as rocking or shaking, strict adherence to routines, intense interests or obsessions, and extreme reactivity to sensory input.

These symptoms must be present in childhood as well as adulthood. However, the DSM allows for the individual’s masking of symptoms due to learned strategies. (Editor’s Note: Masking of autistic traits is especially common among females).

Autism vs. Asperger Syndrome

As I hope you can infer from this blog post, I have done extensive research on ASD.

I see autism in my constant struggles experiences each day, specifically related to what was previously known as Asperger Syndrome. Although Asperger’s was previously thought a separate condition, the DSM-V incorporates it into Autism Spectrum Disorder (ASD). This condition is difficult to diagnose in females because mental health professionals are taught about and study primarily males. Confusion such as this has resulted in a significantly larger number of diagnosed men than women, and many women living undiagnosed until adulthood, if ever (me).

My Autism, Explained

As the DSM describes I am completely baffled by most social situations and struggle to start or continue conversations, especially in small-talk or topics I’m not interested in.

Socializing feels like a (terrifying) game where everyone knows the rules except for me where I’m forced to improvise. Being a chronic people-pleaser, I’m incredibly stressed by these social situations because I don’t want to hurt or offend the other person, so I try to appear completely normal (unfortunately resulting in the covering of my true personality). It takes months, sometimes years, for me to consider someone a friend around whom I can relax.

Even among close friends, I find it extremely difficult to disclose or even identify my feelings. It’s much more natural for me to dump facts on somebody. I become very excited to share a neat trivia fact related to the conversation rather than voice my opinion on some matter. This struggle to classify emotions applies to my interpretation of other people as well.

I used to think I was skilled at identifying how someone felt; I am not.

My extreme urge to please people results in my anticipation of how they might react to my actions or words. To err on the side of caution, however, I frequently (eventually always) assumed a negative reaction such as anger or hurt. I became like a smoke detector constantly going off in case there might be a fire.

My Sensory Issues

The clothes I wear are dictated by how they feel: the softness of the fabric, absence of bothersome appliques, looseness of the fit (especially around my arms). “Bad” textures make me gag or very stressed. There are entire pillows at home that I avoid because of the way they feel.

Most of the foods I don’t like are purely based on texture as well. I strictly avoid a myriad of food with certain textures. Many family members call me a picky eater, but I insist there is a pattern to it. Although it doesn’t happen often, I sometimes skip meals because I can’t stand the feeling of food in my mouth.

In addition, I am sensitive to sounds and cannot tolerate loud noises. This includes music, fireworks, cars, and yelling.

A trademark of autism is intense interest in specific subjects.

These interests can take the form of a lifelong talent as well as shorter-term obsessions. I cannot stress enough how prevalent this is in my life. Despite being a chemistry major, I have studied and excelled in clarinet performance and plan to play for as long as I can.

My struggle in school has never been how to study but rather what to study.

I have varied interests ranging from math and computer science to animals and nature to cooking and crocheting. The intensity of each interest varies and usually lasts for weeks before subsiding and being replaced by a different obsession. This might be my favorite quality about autism, as it allows me to hyperfocus on subjects I truly enjoy. I barely notice the passage of time when I’m engaged in one of my special interests.

Other traits

Other traits that are important but do not necessarily require an entire paragraph: constant rocking or shaking, reduced ability to understand or remember verbal instructions, strict adherence to schedules and rules, nonconformity to and rejection of gender roles, little attention regarding personal grooming and appearance, comorbid diagnosis or misdiagnosis of anxiety and sleeping disorders, urges to hide under blankets or tables, and mumbling.

Looking Back: ASD in my Childhood

Of course, none of these attributes suddenly appeared when I entered adulthood. The symptoms were present throughout my childhood as well.

As a young child I showed signs of hyperlexia (the ability or urge to read without prior training), which is very common among autistic children.

I was held back in preschool for poor hand-eye coordination and balance, another characteristic found in autistic children (anybody that knows me also knows of my constant clumsiness even today). I also struggled with expressing myself verbally from a young age. It was not natural for me to talk about emotions, and I found it difficult to handle people being angry with me. Any slight sign of anger, and I would have a meltdown. I preferred to be alone and read books, and in middle school I only spoke when it was imperative to do so (such as answering a teacher’s question).

Looking Forward: Coping Mechanisms and Handling Stress

Autism (when “high-functioning”) is not in itself a debilitating disability.

Rather, the stress associated with ASD mostly stems from being judged based on non-autistic standards. Realizing my strengths and weaknesses within those standards and crafting coping exercises greatly improves my self-esteem and quality of life.

It’s important for loved ones and family members to recognize the needs and limitations of an autistic individual. For example, before a social event, I require significant amounts of time to prepare and recover. This can take the form of waiting in a parking lot for ten minutes before entering a building, calling someone who soothes me such as my mom or boyfriend, or laying in bed after returning home.

Even family visits can cause stress because of a change in routine, new noises, and more socializing. Stepping out for a bit to clear my head makes me much happier in the long run.

Many people focus on the “bad” side of being autistic. I choose to see it as a gift.

I’m happy to reach the conclusion that I’m on the autism spectrum. I have finally found a like-minded community where my quirks no longer seem so ostracizing. After learning about ASD, I have uncovered so many resources and strategies for handling stress and preventing meltdowns. I now know to tell myself, You have sensory overload. Take a break for a bit. I give myself some time in between events. I tell myself to rest.

As a result, I no longer feel guilty for not being able to handle situations while my peers seem fine.

With all this information why don’t I get a formal diagnosis?

For one, it’s very expensive (around $3,000) and extremely difficult to find a doctor that will evaluate adults.

For another, I don’t feel the need to have a doctor tell me something I already know about myself. There is no medication or treatment for autism, just awareness and strategies for living a happy life.

Finally, autism doesn’t change me. It merely changes my perception of myself and how I relate to those around me. If nothing else, my research on autism has helped me reach a peaceful state where I can fully be myself without shame.

I am not deficient; I am different.

Resources

Throughout my autism journey, I consulted a vast number of resources, both online and in print. If you want to learn more about autism spectrum disorder, see the following texts.

American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed. Arlington, VA: American Psychiatric Association; 2013.

Simone, R., & Willey, L. H. (2010). Aspergirls: Empowering females with Asperger Syndrome. London: Jessica Kingsley.

Aspie Quiz: http://rdos.net/eng/Aspie-quiz.php

Autism Websites:

https://musingsofanaspie.com
https://the-art-of-autism.com/

Myranda Uselton

Myranda is a twenty-something Aspergian attending school for computer science and data science. She has had many exciting experiences, such as interning for NASA and working for a mission in New Orleans. Her special interests include chemistry, clarinet, and cats.

9 Comments

  • Dear Myranda,

    I am moved, and fully supports, these lines of yours:

    —————————————————————————————————————————————————
    For another, I don’t feel the need to have a doctor tell me something I already know about myself. There is no medication or treatment for autism, just awareness and strategies for living a happy life.

    Finally, autism doesn’t change me. It merely changes my perception of myself and how I relate to those around me. If nothing else, my research on autism has helped me reach a peaceful state where I can fully be myself without shame.

    I am not deficient; I am different.
    —————————————————————————————————————————————————

    I am also self-diagnosed.

    I did the same study you did, with basically the same conclusions.
    My story is different, but each Autistic person is different, and any human being is different.
    In my case, it was clear that I am Autistic when I was one year old. Devoted spiritual practice improved my situation over the years beyond any expectation, which is my unique story.

    I am even more daring and bold in the way I say this today:

    High functioning autistic persons are generally sufficiently intelligent to diagnose themselves. We do not need the neurotypical persons to diagnose us more or less than they need us to diagnose them. We are proudly different, and often have qualities and merits that neurotypicals cannot match. There is no medication or treatment for being a neurotypical person, either.

    I am fully behind you, Myranda, and loves your post.

    Love,

    David Goren

  • “For another, I don’t feel the need to have a doctor tell me something I already know about myself. There is no medication or treatment for autism, just awareness and strategies for living a happy life.”

    But you don’t know and that is the point. You could be one of the rare few self-diagnosed who does really have autism but those normally are the people who want a real diagnosis. But what you outline here could be a number of other neurological disorders or even not any at all.

    Self-diagnosis harms the autistic community so much. We have been forced out of safe places that were meant to be for us, talked over when it comes to autism, had resources taken from us and had the public perception of us set back so many years.

    You wouldn’t pretend to be a different race, so why do the same to us with autism. And you last line is really telling “I am not deficient; I am different.” you self-diagnosed your self because you think it makes you special.

    • So what’s your suggestion then for those who want a diagnosis but can’t get one, even after spending thousands of (non refundable) dollars on testing in the hopes that some NT “expert” will be able to diagnose? Shrug our shoulders and continue to struggle through life, assuming the person doesn’t inevitably fall into a dark place mentally and doesn’t come back from it? Based on this response, you’re equally a problem for those looking for support through this journey.

      • Dear Angie,

        All I was trying to do was to share my story…

        I definitely do not have the answer for so many of us who are suffering…

        Finding a professional who can diagnose autistic adults reliably is challenging and expensive…

        I was lucky to get a piece of advice leading me to a psychiatrist whom I later understood is one of the best experts in Israel in this rare niche… The diagnosis was a challenging and exhausting process, but now I do feel much better about myself… I learned so much more about myself during the diagnosis… For me, it was worth it…

        I hope you find your way, this way or the other…
        The main thing is not the diagnosis; it is to find peace in this life… Buddhism helps me a lot…

        May you and all beings be happy,
        David Goren

      • In most counties it is free and those NT doctors you seem to hate has a far better understanding than you on the topic and if you can’t accept what they say got to tell you that you are just role-playing autism.

        Stop making the life of us with autism harder, the problem is you and no one else. stop being an ableist bigot.

  • Dear Myranda Uselton,

    As you can see above and hopefully remember, I already replied to your post long ago…

    I have a significant update to my former reply: Recently, at age 59, I was formally diagnosed with ASD…

    I knew long ago that I have Autism, and people I know often told me that… For example, my wife Ayala, a psychotherapist, said that to me that soon after we met, but still decided to marry me…

    Throughout my life, I was against formal diagnosis for two reasons:
    The first was that my father was much against it since he did not trust psychologists in general. He thought that a formal diagnosis would be a stigma, plus it would reduce my effort to adapt…
    The second was that I was not too fond of the idea of any authority telling me who or what I am… I definitely knew I was different from day one (toddler) and later understood that I was Autistic, but for me, the main thing was to accept myself as I truly am without any labeling. I felt distrust towards “the world.” Who are they to tell me who I am?

    What changed my mind?

    Believe it or not, it was forums like “The Art of Autism” and other Autistic forums in which I participated, where people on the Autistic spectrum repeatedly said that formal diagnosis helped them for the better…

    So I tried… It was undoubtedly expensive, and indeed there are very few psychiatrists in Israel who can diagnose adults… I found the best one in Israel (I think), and he asked me to bring family relatives who knew me from infancy plus my wife… I met him three times, 90 or 120 minutes each time… He studied me from birth till today in extreme detail and depth… I learned much from this comprehensive study of myself in any case…

    Here I am, three months after the diagnosis…
    I can tell now with certainty that it does make me feel better…
    It helps me to accept myself better…
    I am much less critical of myself because of many failings in the past…

    The best wording to what I feel today is this:
    I now fully understand how BRAVE I was.
    What I did in my life was so much above and beyond the average potential of my initial condition at birth. The psychiatrist who diagnosed me was amazed at the difference from my initial situation when being one year old (banging my head on the bed frame most of the day, refusing to eat or eating for hours, not looking on my mother and father, rocking my head while looking up most of the day which I still do today when alone, still most of the day…) and what I did later (Doctoral degree in electrical engineering, 17 years as a senior research staff member in IBM, being married and having two great children who are highly successful today…)

    Bottom line: Based on my experience now, I do encourage self-diagnosed people on the Autism spectrum to have a formal diagnosis… However, any case is different, and I support anyone who wishes to avoid a formal diagnosis…

    Love,
    David Goren

    • @David Goren My comment was directed at the person named “J” who clearly has an issue with those who are self diagnosed..

      I’m personally hoping for a diagnosis but in the event that I’m not fortunate enough to have that, I’m hopeful that I can come to a place of peace. I have a daughter that’s autistic (officially diagnosed) and I learned and continue to learn through caring for and supporting her. Thank you David for your comment and sharing your story.

      • Thinking you have something is a great first step in order to get a diagnosis, and may help even if you don’t have the thing you thought it was. But the issue is saying self-diagnosis is valid or that is the only step that needs to be done.

        But the issue is saying you are “hoping” you are diagnosed, what if you don’t have autism will you be accepting of that or will you deny it?
        What if you get diagnosed with something else you didn’t “hope” for would you accept that?

        Wanting to understand yourself more is great but “hoping” to get diagnosed with a specific thing is not.

        And I already outline my issues with self diagnosis, a number you are showing in your posts.

        • I’m not “hoping” for an autistic diagnosis, I want an answer period. I would accept whichever diagnosis because only then would any kind of support be available.
          You stated how you felt, great.. and predictably have no real response to what I asked you.. that’s okay. You don’t know everyone’s story behind what they go through so I won’t waste anymore time here. Hope you find peace within yourself instead of lashing out at those who did nothing to you.. good luck.

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