Why I’m not upset with people who self-diagnose autism

I see lots of non-autistic people saying reasons why people who self-diagnose with autism are somehow bad. I’ve never understood that.

I’ve heard from teens who believe themselves to be on the spectrum. Like, seriously, they flood my inbox with their pleas to be heard and understood. I’d like to think, then, after talking to so many of them, that I have a decent understanding of why people tend to self-diagnose with autism, and why these people aren’t as bad as others like to say.

Questions about self-diagnosers and their impact on society

I originally wrote this as one long stream-of-consciousness essay, but I thought it might be hard to read, especially for those of you who struggle with sustained attention. So I’m going to break it up into question and answer, in the hopes it’s more accessible to everyone.

“Wouldn’t self-diagnosed people make people take real autistics less seriously?”

I’ve heard this before, and honestly? It gives me the sense that the asker isn’t very informed about the Autistic community.

Because where on earth do people get the idea that people take us seriously as it is?

I have a professional diagnosis. Do you think that stops people from making fun of me? Of course not! There are threads on Reddit and Kiwi Farms dedicated to mocking me, my artwork, my personality, and my ideas. They don’t take me seriously at all. They say I’m “cringey” and I have “the mind of a 5-year-old,” among other things.

I’d bet my life savings that many of the people who mock professionally-diagnosed autistic people also mock self-diagnosed autistic people. They don’t care what the experts say about us as individuals. They just care that we’re different, and that we speak from the heart, and that these are things they don’t like.

Non-autistic bullies won’t take autistics seriously, regardless of how many people are self-diagnosed.

So why blame the victims? Why claim that self-diagnosed people, so many of whom are young and alone and vulnerable, are somehow to blame for non-autistic people hating all of us?

Bullying is a choice made by the bully, not the victim. So let’s quit blaming self-diagnosed people for a problem they didn’t cause.

“But what about the people who aren’t SUFFERING from autism like people with real diagnoses?”

I actually suffer quite a bit. I have anxiety, on-and-off depression, and a history of trauma that severely impairs my social skills off the computer. Last time I was tested, I had borderline moderate-to-severe developmental delays. Some autistic people who are 10 years younger are more independent and social than I am. There’s nothing “mild” about my autism. I’m significantly disabled, and I will likely always be that way.

Do you know what I say when I see someone who has half of my challenges say that they’re likely autistic?

I say “Ah, I see.” And maybe “Have you considered seeing a specialist for an assessment?” Usually, I also say “I can point you to lots of diagnostic resources if you’d like!”

Because you know what? There are real, genuine autistic people who are capable of more than I am! And I’m happy for them for being able to do and enjoy those things! Maybe someday that’ll be me too sometimes!

It’s not a competition. I’m no self-appointed judge. I won’t pretend I know how much they are or aren’t struggling inside. I have no idea what their life is like!

Besides, disability doesn’t equal suffering. There are some people who are able to do more than I can who suffer much more than I do. There are people who can do much less than I can who are happier with their lives. (And good for them!)

I’m incapable of a lot of things. That doesn’t mean I suffer every day. I try to remind myself that pain is transient. I make adjustments to make life easier. I take time to enjoy my abilities.

I’m not going to get angry over the things I can’t do, and take that anger out on other people. It’s not my style. I’m learning to accept that I have certain limitations and that I can build my life to be quiet and low-stress. I’d like to survive to become middle-aged, and doing that means making peace with the fact I can’t do certain things without it harming me or endangering my life. Team Let’s Not Die Today.

Instead I’m going to look at the autistic people who can do things that I can’t, and I’m going to say “enjoy it.” I’ll say “I’m so proud of you kids who are surpassing me. Keep growing and learning new things every day.”

The community doesn’t consist of only me and everyone who has it worse than me. We aren’t here to play “whose life stinks the most.”

I want to build an Autistic community full of people who support and love each other. We’ll vent at times, and offer a listening ear or advice if it’s wanted. We’ll celebrate each other’s accomplishments. We’ll remind each other that we’re already good enough.

I think a lot of other autistic people want that too. That’s probably why we tend to be kind and welcoming to self-diagnosed people. Because we’re here to help, not tear others down.

“But what if they’re looking for attention?”

I mean… yeah, they are? But isn’t that normal?

When I pick up the phone and call my dad, I’m attention seeking. I want him to stop what he’s doing and focus on me. Whenever I post a new tweet, I’m attention seeking. When I say hi to someone I recognize, I’m attention seeking.

Humans seek attention all the time! In fact, if someone isn’t doing that, I’d be worried about them because they might be experiencing serious depression! I hope that you, my reader, seek attention every day!

When people mention “attention seeking,” I think maybe they are thinking of people who are starved for attention.

Yes, some people (often teens) are indeed desperate for attention. But when I see that, I don’t feel repulsed. I feel worried about them. Because if someone is crying out for attention so desperately, then they must feel pretty neglected. I wonder if they have a family, and if that family cares for them. I wonder if they have many friends. And it feels sad to imagine what a small, lonely world they must be coming from.

Why would I scorn them? I either give them some attention and love, or I do nothing because sadly I lack the time and energy to help every single lonely person in the world.

If someone is starved for attention, then logically speaking, they need attention. This is true in general, and extra true for kids, who have developing brains that thrive in a loving and secure environment.

And saying “I think I’m autistic” on the internet is pretty harmless, especially if you genuinely believe it. I’d rather they seek attention via internet than start getting detention or doing crimes.

So if someone is attention-seeking… I think that’s usually a sign that they need more kindness. Not less.

Does this make sense to you?

“Okay, I understand why it’s good to be nice to lonely kids. But what if they’re wrong about being autistic?”

Excellent question! Some percentage of them probably are wrong about it. (One study found that 88% of adults who thought they were autistic met the diagnostic criteria.) So let’s talk about those 12% of people who are wrong!

Let’s think about why someone might consider themselves to be potentially autistic. They probably feel that they’re different from other people in some way. Something is unusual about them, and they’re looking for answers.

My guess is that many of these people are neurodivergent in some way. ADHD, social anxiety, schizoid personality disorder, complex PTSD, and other conditions could be mistaken for autism. It’s possible that the person just got a little mixed up.

Or, yeah, maybe they’re a neurotypical who’s just quirky. I’d be surprised, but it’s possible. And in that case, I think that the Autistic community’s message of self love and embracing what makes you unique could be a good influence on them.

If someone told me that they self-diagnosed with autism and then realized they were wrong, I’d probably give them this article. And then I’d say “It’s okay. I know you’re doing your best. I hope you can find whatever it is that you need.”

“It takes away resources from actual autistic people.”

What resources? Which ones? Can you name them?

I can’t. Because all the official resources I’ve received only became available after my dad or I submitted the papers proving I’m autistic.

I’ve never been denied a resource because some self-diagnosed person got it first. But I have sometimes been helped by articles and posts written by self-diagnosed people. Self-diagnosed people have never hurt me, but they have helped me.

People who hate autistics, I’m sure, will be angry to hear this because they can no longer use it as an excuse to hate on self-diagnosed people.

But I’m not interested in being their rhetorical prop. I have been harmed by zero self-diagnosed people. None of them have ever taken anything from me.

Yes, self-diagnosed people do sometimes receive social support. But you know what? They don’t pass out a maximum number of hugs per day! A self-diagnosed person receiving help doesn’t mean that I get less help. I can still ask for and get support. The only thing that happens is that more people are getting help.

And even if the self-diagnosed person is a non-autistic person who just got a little confused about their neurology… They probably think they need help for a good reason. So I think they should get the help.

I’m not 3 years old anymore. I’m OK with sharing.

In conclusion

I hope you know that I’m not trying to say that every self-diagnosed person is perfect, or that they are always right. I think they are messy, confused, imperfect human beings just like the rest of us. And in my opinion, when people are feeling lost or in need of help, then I think it’s good when people help them.

So yes, please do help someone who is self-diagnosed with autism. Please be kind to them. They’re not hurting me. But there might be a part of them inside that is hurting, a part with unmet needs. And I think that helping meet people’s needs is part of being a good person.

Hmm… make sense? This came out of the peculiarities of my autistic mind. I hope you understand, now, why I encourage so much kindness to self-diagnosed people, and why I always try to show kindness in my interactions with them.

We all have problems. Self-diagnosed people probably chose the label autism because they have unsolved problems in their lives. Maybe, if we can all try to help each other with our problems a little bit, life can be easier for everyone.

Please don’t look up the Reddit and Kiwi Farms threads dedicated to making fun of me. It will only make you upset. And my 5-year-old mind doesn’t want you to be sad. 😉

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15 thoughts on “Why I’m not upset with people who self-diagnose autism

  1. Hi Miss Luna Rose,

    I am possibly one of those who turned out to be a quirky neurotypical (surprise! :). It’s been a long and hard journey, and I’m finally starting to be able to accept myself, forgive my past and lessen my anxiety about it.

    I would just like to thank you for your blog and your WikiHow articles. They are incredibly compassionate and have helped me in my darkest times. I cannot thank you enough.

    Regards, Ignis

    Like

    1. Well, congrats on finding more info about who you really are.

      I’m glad my work could help while you were struggling. Self-discovery is messy and confusing and stressful sometimes. There’s nothing wrong with “barking up the wrong tree” sometimes while you search for the right answers. It’s a regular part of life.

      And hey, all the research you did on autism probably helps you be a good friend and ally, so it wasn’t really wasted, was it? If more people read up on autism like you have, the world would probably be easier for autistic people. Keep being your quirky self! You’re unique and open to learning, and those are fantastic things.

      Liked by 1 person

      1. Hi Miss Luna Rose,

        I’m “jumping the gun” a bit here, but I wanted to post because I’m so upset by something.

        It turns out that I’m likely autistic (which is extremely relieving to me), after multiple professionals (psychiatrist and psychotherapist) said that they think I’m autistic, and that my previous assessment was likely incorrect due to heavy masking. It’s not official, but… I’ll be honest, it’s good enough for me. I might seek an official one if possible.

        I felt so happy, they mentioned things that I’ve been experiencing all my life, I felt like someone finally understood the frustrations I went through. Unfortunately, they weren’t equipped to help with ASD, so I’ll be going to a more specialised clinic to help with some stuff I’m going through (especially my difficulty controlling my interests and focus).

        But then I thought. Why did I think I was just a quirky neurotypical for so long? Why didn’t I seek out help? Why did nobody notice?

        Autism Speaks, their overly-restrictive (hah) stereotypes and media stereotypes are why I never thought I was autistic. Somehow, even when I had multiple autistic friends that I talked to easily and fluently on a daily basis, they STILL managed to control the “image of autism” in my head. Allistics, likely with less autistic friends, never stood a chance.

        That stereotype of autism being “a kid who ignores everyone, is only ever interested in trains, completely monotone, and must eat lunch at exactly 12:00:00”. First of all, isn’t it stressful to eat lunch exactly at noon? I mean, there’s probably some autistics who’re like that (which is fine), but they push the stereotype that that’s ALL autism is, which causes people like me to never realise that I’m actually autistic and could have actually sought out proper help and therapy during my darker times.

        And then they abuse the “no true scotsman” fallacy and ignore all autistics who can actually advocate for themselves as “not being autistic enough”. It’s so frustrating. How they heck are they still so popular?! >< I'm so upset… just because I'm looking past you doesn't mean I'm not listening!

        I'm sorry for ranting, I kinda needed to… It's so extremely upsetting to me, that such a horrible organisation can stay popular, and harm everyone, all the way from autistic kids to autistic adults who don't realise they're actually autistic due to the harmful stereotypes and never seek out the help they need.

        Thanks for listening, and I hope you can give some opinion on it, if it doesn't cause you too much emotional pain. Also… I retract my earlier surprise 😛

        Regards, Ignis

        Liked by 1 person

        1. WordPress deleted some parts of my comment.

          =====

          How they heck are they still so popular?! (Upset emoticon)

          Then there’s the interactive ad about eye contact and the “pain it causes parents”… I rarely make eye contact with my parents. They never cared, which was fine with me (though sometimes my mom thought I was being sad when I wasn’t). Why do they care about eye contact so much that it causes them emotional pain? (Upset emoticon) I’m so upset… just because I’m looking past you doesn’t mean I’m not listening!

          Liked by 1 person

          1. I don’t understand it either! I’ll never fully understand how non-autistics think since I’m not one of them, but my parents don’t seem particularly sad that I rarely make eye contact with them. I think the people who get upset are stuck in their heads and expectations, placing too much importance on something and then being confused when their kid doesn’t meet imaginary expectations. I know it can also be harder for non-autistics to read autistic body language, so they might misinterpret inattention or disinterest when there is none.

            Like

        2. Sorry… someone else pointed this out. I wanted to clarify that I’m completely fine with the stereotype. But only if it’s clear that it’s not the only one! I don’t want to hate on anyone ><

          Liked by 1 person

        3. Sorry for the flood of comments, Miss Luna. I just found out my parents hid my autism from me. I suffered the worst meltdown I had in my entire life. I’m autistic. Still, thank you for your earlier advice, back when I thought I was still NT.

          This is why I’m not upset with self-diagnosis.

          Liked by 1 person

          1. I am so sorry to hear that your parents weren’t honest with you. That must have been so awful to discover and I’m not surprised you had a bad meltdown. You had all these questions and your parents had the answer but didn’t tell you.

            I wrote an article once on telling a kid they’re autistic and I believe the very first step was telling them early on. And your parents didn’t.

            That is so, so much to process. Being upset, mad, hurt, confused, and whatever else you’re going through is justified. I hope you can get lots of time and space to sort all of this out and figure out how you feel about it. Take care, okay?

            Like

  2. You are the one of the most awesome people I know of on the internet. Your wikihow articles are outstanding and your mentality is unmatched by neurotypical peers. The haters can’t see the greatness about you. Thank you for all your writings!

    Liked by 1 person

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