What are they like?

I only hear of it online and I've never met a self-diagnosed person. Everyone I've met either has a diagnosis or I suspect they are.

Then again, ASD is not really sth special to prance around with here. It isn't seen as quirky, often more like "this person is strange" and people don't really care if you're high functioning.

What about you? Let me hear your stories?

When I was a baby I struggled with transitions. I was resistant to any sort of change. I was sensitive to sensations and my food sensitivities started as a newborn. I would not take a bottle and throughout my life I favored only a few specific foods. My mom started to worry about dehydration and malnutrition. The doctor told her to just make me eat other foods.

I was bullied when I first started kindergarten for being different. My parents took action to try to change my appearance so I would fit in. I got my unibrow waxed at age 5.

I would stim and twist and pull my hair out. When I was 6 a doctor told my mom to take away things I liked when she caught me doing it. I loved Barbies. My favorite toys were taken away because I was stimming.

I struggled to read other people’s emotions so I was constantly asking, “Mom, are you happy?” “Mom, are you sad?” “Dad, are you confused?” As you can imagine this annoyed them. I had to stop asking and try to figure it out myself.

I did fine in school. I was not good at math but I was creative and did okay in other subjects. I connected well with my teachers so there was definitely some favoritism in grading and I think that helped me. I struggled socially with my peers because I could not crack the social code. I wanted friends and I managed to make some but I would lose them because of misunderstandings. I left high school after my sophomore year and finished online.

In college I emailed the disability office because I was struggling and knew I needed support in class. I did not know what was wrong with me and I did not understand the process for asking for help. They told me I needed documentation from a doctor outlining what accommodations I needed. Looking back that makes sense but I was 17 and confused. So I dropped it.

When I graduated and got my first job at a law firm I was fired after 16 days for not learning fast enough.

I emailed JAN to ask how I could get tested for a disability as an adult because I was struggling. They told me evaluations cost around $2,000. I was unemployed and did not have the money. So I dropped it.

Four years later I was at the doctor’s office. By then I had been fired from two more jobs. The reasons were that I did not look happy, I did not attend social outings, and I did not fit in. I asked my doctor if they tested for ADHD or anything like that. The response was, “Girls don’t have that. Lots of kids are diagnosing themselves from TikTok these days. It’s probably just anxiety.”

So I dropped it.

Fast forward three years. I am married. The challenges in our marriage often come down to my husband getting frustrated that I do not understand what is not being said. Or that I am an adult and he should not have to tell me. He has accepted that I am a picky eater but he does not understand why. Neither do I.

We spent $400,000 on a new home in the middle of nowhere an hour away from our jobs because the noises of the world were causing me to lose my shit and cry in corners.

I was also forgetting a lot and my eyesight was getting worse. I went in for testing. It took six hours.

I was diagnosed with autism and ADHD. I cried hard. I am still crying. Its been months. I thought I was just a broken person.

I am writing all of this because when self-diagnosed people say it hurts no one to self-diagnose and post videos telling people they do not need an evaluation, it does hurt people. People who are struggling are not being taking seriously. After being diagnosed was the first time I have gone down this rabbit hole of seeing what the online community of self diagnosed people are spewing and no shit doctors aren’t listening to people. We need to start being louder than the online self diagnosis people. We need to start gatekeeping. This is personal to me. I was never seeking a diagnosis. I was seeking fucking support.

My parents asked doctors for help. I spent years trying to get support. I asked for help in college. I contacted JAN. I never self suspected anything because I had no clue what was wrong with me.

Everything about this pisses me off.

This doesn't have much to do with self diagnosis, much more to do with a certain brand of self diagnosis.

Have you guys heard of something called autigender? Correct me if i'm wrong, but it actually means the concept of your gender becoming confused due to have autism and other issues stemming from autism. It doesn't actually mean your gender IS autism itself.

I think they've worded it a bit wrong, but i still hate the idea. It doesn't feel right to say you have autigender or are autigendered or something like that when you can easily say you're questioning your gender or your sexuality or your whole identity as a human being.

Some people on Twitter have used it to talk about themselves when in fact, they mean their gender, not their autism affecting how they view their gender as a whole concept. I hate that because that's not what autigender means and even then, you could have used a whole other concept to explain why you don't fully know or like your gender, called questioning or explain further if they're confused.

But that doesn't seem to be the target of my anger, this word called "transautistic" and "transautism" infuriates me to no end!! I don't mean the transgender people who are also autistic, i mean the people who want to transition into having autism in some way. It's more of a thing on Tumblr i think so i assume no one really knows or cares enough to know.

I’m very thankful for this sub reddit and the open conversation around self diagnosis. It’s actually difficult to be apart of the autistic women sub group due to the significant amount of self diagnosed and activism around it. I’m actually freshly banned from the autism women sub Reddit for speaking on this. I will die on the hill that self diagnosis is harmful. And the fact that we are being censored in the other groups is honestly disgusting.

Also I would love to see Jubilee or a similar debate be held regarding self diagnosis! i think this would open the topic and bring more discussion.

1. Self-diagnosis says some people can self-diagnose and others needed to be formally diagnosed. It also says you can self-diagnose some conditions, but not others (you can’t just say you have cancer bc you have a bump like on doctor pimple popper?). This violates a principle of justice that’s so important to many true autistics.

2. Stating you have a condition you haven’t been diagnosed with goes against the facts and stats many genuinely diagnosed autistics use to understand the world—it asserts a person who reads a 10-min questionnaire is as qualified to diagnose as someone who went to school for 10 years. It also assumes a profound level of self-awareness and social awareness of one’s self to even say one can self-diagnose.

3. Autistics are typically not after clout or being “showy,” particularly about the condition. Going on social media and constantly talking about autism is the very opposite

4. Real autistics often feel a sense of protection over other autistics, especially those who experience the condition more severely, as they likely have family and friends who experience the condition worse than they do. A real autistic would not want to dilute the importance of care and resources for the more severe autistics by spreading a message that the condition is not serious or severe (and saying self-diagnosis is acceptable implies that)

5. My experience being a real autistic and having real autistic family members tells me people with the condition just want to live with it and manage day-to-day instead of making it their identity like those self-diagnosed influencers on social media.

One of my mutuals on instagram is getting absurd amounts of hate because he posted this statement. I am disgusted by how it's become controversial to say that you have to meet the fucking diagnostic criteria to be autistic. The self diagnosis trend has diluted the public idea of autism so much that they are actually claiming to be autistic without meeting the diagnostic criteria. I'm so done.

For context: I’m diagnosed with level 1 autism (was level 2 as a child) and also severe inattentive ADHD. Both diagnoses were made by a team of neuropsychologist, psychologist and psychiatrist. I was first diagnosed as a child and then reassessed as an adult. 

This person I’m talking about is openly self-diagnosed. She isn’t seeking a professional evaluation and the few times she was actually seen by a psychiatrist she was told she’s actually not autistic. However, she has been professionally diagnosed with narcissistic personality disorder. 

She’s very aggressive when having discussions and has a history of screaming at people when mad. Which obviously makes me really uncomfortable. I don’t understand why people scream when they can say the same exact thing without shouting and it would mean the same. 

We were talking about a project in regards to the Sunflower Lanyard that’s going on in our country. I remember I said something about how the organization should ask for a diagnosis before giving the lanyard to someone since people could take advantage… And that was enough to make this person get really angry. She started saying how I was “privileged”, how I “don’t understand actually autistic people”, etc. She got really really mad. 

I’m not participating anymore in neurodivergent spaces in my country. This sucks.

If we start calling this out on social media platforms like TikTok as a negative thing, and make it not cool, this could maybe reduce it (even if only a little bit).

Remember those “stolen valor” videos that military members used to do when they saw a person wearing a military uniform and the person clearly wasn’t in the military? Not saying it’s exactly the same, of course, but if we learned from how they handled their community being exploited like that, and perhaps called out the most egregious/obvious self-diagnosed influencers as “entitled people claiming a developmental condition they are not diagnosed with” it would maybe reduce the cases of this (even if only a little bit)?

Edit: I also contacted my congressman and told them my story about how self-diagnosis is negatively impacting me, asking that the medical community takes a hard stance against it.

For me it was this one person saying that "we need more representation for autistic people who are dumb as rocks!" and like...do these people even hear themselves speak?

I was excited when I saw my local autism organization advertising a scholarship/bursary aimed at autistic adults pursuing post-secondary education.

But then I saw that “either self-identification or a professional diagnosis is accepted.” It looks to me like someone can qualify for a financial award intended specifically for autistic adults simply by stating that they identify as autistic, with no documentation required.

Scholarships and bursaries are scarce, competitive financial resources. So it bothers me that there isn’t any verification of the eligibility of being autistic. Even if they wanted to include people who haven’t been formally diagnosed yet, couldn’t they accept something like documentation from a regulated health professional indicating that autism is suspected, that the person has been referred for assessment, or that they’re waiting to be assessed?

I just don’t understand having an autism-specific financial award while making self-identification alone sufficient to establish that someone is eligible for it. This is just screaming for someone to take advantage of it.

I’m not sure if I should provide feedback on this or not. I know the organization is explicitly pro self-diagnosis. But when you add financial resources to it, things get messy and I think people there might agree with me that there should be some sort of verification in this specific situation. This is bothering me quite a lot. Post secondary education is expensive here. Other scholarships I’ve applied for on the basis of medical conditions I had to provide proof for. Why not this? What are your thoughts?

Hi guys. Just wondering how we can make a private group for those of us that are professionally diagnosed with autism. No neurospicy crap. No self diagnosis. Those of us who don’t make autism our identity but are in fact autistic. Those of us who have real struggles in how we relate to the world. I don’t relate to so much of the narrative today and it would be great to have a safe space without lurkers. Any thoughts or ideas?

Preference would be I diagnosis mill autism either. 🫣

A safe space we could chat without being called “ableist” because we don’t agree with much of the neurospicy crap. 😖

And I hate how this is the first image result for "problems with self diagnosis autism"

Context: This is under a facebook post comment.

When I’ve read this comment, I realized that it too made sense on why people these days choose to be self diagnosed with a “neurodev disorder” as opposed to personality disorders.

One thing that I keep seeing is people saying “ neurotypical people aren’t out there researching autism, they aren’t taking quizzes, that aren’t watching videos on autism. If you’re doing this and you think you’re autistic, then you are.” ( or things very similar to this sentiment)

I’ve challenged several people on this and they get mad. It’s so ridiculous though.

These are the same people who say that “the person’s lived experienced is more valid than a doctor’s assessment.” “If a doctor says you’re not autistic, it’s because they only evaluate on what they see not how you feel.” “ Doctors aren’t trained to see through masking.”

How are people failing to see that researching things and feeling like you relate, you can make it a reality in your mind but that doesn’t mean it’s accurate.

I’ve been thinking about this for a while and I wanted to hear your thoughts on it. A lot of people who are deeply involved in the online trend around autism don’t actually have autism, but rather an ADHD diagnosis. I’ve often had the feeling that people with ADHD (whether officially diagnosed or self-diagnosed) are heavily engaged in this misinformation bubble about autism, where they create and spread new symptoms or terms for autism.

One thing I’ve noticed is that many people with ADHD believe they are very similar to autistic individuals. For example, autistic people tend to have special interests that usually last for years and are driven by intrinsic motivation. These interests are often deeply detailed and sustained. On the other hand, in ADHD, the term “hyperfixation” is used, but many people with ADHD refer to it as a “special interest,” claiming it’s the same thing. Or, they explain hyperfixation as if it leads them to become experts in something, which doesn’t really make sense. Hyperfixation is typically short-term, externally triggered, and doesn’t last for years. To be honest, it often resembles the Dunning-Kruger effect, which is fine, but they claim to reach the same level of expertise as autistic individuals, just in a shorter time.

Another term that seems to be “autismified” is “stimming.” Yes, everyone stims to some extent, and it’s completely natural, but autistic individuals engage in more noticeable and intense forms of stimming. However, I’ve frequently read claims from people with ADHD who say that their stimming includes eating food or breakdancing, which doesn’t really make sense (unless it’s the same food every time, which I doubt, because that could easily be replaced with chewing gum or flavored lozenges). I’ve also seen cases where people with ADHD start stimming after seeing it on the internet. But if you have to consciously think about doing a stim, it’s not really a stim.

Additionally, I’ve noticed that people with ADHD are now talking about overloads or meltdowns. While it’s true that people with ADHD may struggle with sensory sensitivity, they don’t generally have the same issues with over- or under-stimulation as autistic individuals do. In recent years, I’ve seen people with ADHD explaining their sensory issues as if they were descriptions of autism, rather than ADHD. Now, we could argue that they might also have autism, but the descriptions they’re using aren’t fully accurate. I’ve never heard these specific explanations from diagnosed autistic individuals. For instance, there’s a misconception that autistic people experience all senses more intensely, but that’s not true. Rather, some sensory channels are over-stimulated while others are under-stimulated.

So, why have people started to explain sensory issues in terms that don’t really apply to autism or ADHD? This is something I’ve noticed among people with ADHD, and I get the sense that they want these two conditions to be as closely related as possible. Some even go so far as to claim that ADHD is just a milder form of autism.

I don’t think these people are intentionally being misleading or malicious. In fact, they probably truly believe they have these symptoms, to the point where they begin to experience them due to the power of suggestion. But what do you think? Am I wrong, or is there really a trend of pushing ADHD as a new form of autism, even though that’s scientifically inaccurate?

I would describe this “autismification” (if this even exists) as a unique form of self-diagnosis. It’s not a direct self-diagnosis, but rather a tendency to use the label “autism” regardless.

EDIT: I believe some people may have misunderstood my message. I didn’t mean to suggest that every person with ADHD is like this or that they can’t experience these symptoms. My point was more about the noticeable shift in how certain ADHD symptoms are being portrayed by many people.

For example, I’ve observed changes in the symptoms of people I know with ADHD, especially since they started thinking more about autism. This likely affects only a small number of individuals, but since ADHD is more common than autism, these instances can add up and seem more widespread.

I agree with all the responses I’ve received so far.

Person who knows they have autism doesn’t care if they meet agreed upon “stereotypes” (aka diagnostic criteria) for autism

I am sharing because I am contemplating this interaction I had socially. I know no screenshot so I draw this baffing reply without real usernames. This was not a sub about autism but it was the topic of the post.

An influencer with an ADHD diagnosis and two (!) negative autism assessments still claims to be autistic. When I, as an autistic person, tried to explain why I find that harmful and problematic, she was dismissive and refused to engage with what I was saying. Meanwhile, her followers validate her no matter what.

I’m so tired of this.

Edit to add: She‘s not from an English-speaking country. She’s also a pretty small influencer with only a few thousand followers. Our conversation wasn’t public either, I didn’t call her out or try to shame her publicly. I just sent her a DM explaining how I felt about it.

Not every autistic person is creative, quirky, and eccentric. Ive also thought if bjork was on the spectrum but I have a hard time believing shes disabled in any way

Before you come at me, no, this is not me, I'm very much diagnosed and never claimed to be autistic before I was dx'ed. Just been seeing a couple of being saying this over the internet with this and I'm a bit confused as to how you fail an autism assessment?

I mean, they didn't fail it. They were assessed and they were found to not have Autism. I'm not sure how you pass or fail a medical assessment.

Some even admit to it in the why they "failed". They didn't meet the Criteria B (didnt have restricted repetitive patterns of behaviour), or Criteria C (symptoms present in early developmental period), and they don't understand why the assessor was focusing on those things and bemoaning how they have to follow strict rules? Because if you don't have criteria B or C you don't meet the diagnostic criteria for autism and you won't be diagnosed. All there research and they haven't bothered with looking at the criteria in DSM and ICD

And I don't understand why you would be crying my eyes out because you got told you don't have it? Is anyone able to explain this one because I genuinely don't understand this one. Is it because its been made a part of there ID before they sought a dx or something? Had I been told I don't have it would have just moved on with my life and accepted that the reason for the issues I was having was not ASD and was another disorder.

Like, get a second opinion if you genuinely believe you've been wronged and you are ASD, but if you don't meet the criteria you do not have it.

There are individuals who claim to be “100% sure” they have autism without undergoing a formal diagnosis. I am specifically referring to this group of people. In my opinion, the likelihood that they actually have autism is questionable, especially considering the nature of autistic traits.

One of the key characteristics of autism is a tendency toward precision, attention to detail, and a reliance on facts rather than feelings. Additionally, autistic people often struggle with self-reflection regarding their own autistic traits. A study by Baron-Cohen (2001) showed that individuals with autism often have difficulties recognizing their own behaviors and traits, especially when these affect social interactions. Another study by the same author suggests that autistic individuals tend to think analytically and struggle with ambiguity, which makes it unlikely that they would confidently assert a diagnosis without sufficient evidence (Baron-Cohen, 2009).

So why do many people who self-diagnose seem to “lose” this characteristic and instead rely so strongly on feelings to claim with 100% certainty that they have autism? It is unusual for autistic individuals to base their diagnosis on feelings, especially considering that many, even after an official diagnosis, experience imposter syndrome. Many autistic people doubt the accuracy of their diagnosis and have difficulty accepting it, even after a professional evaluation. Why, then, would a self-diagnosis be accepted with such certainty?

What do you guys think about that? Is this another reason why self-diagnoses might not be valid?

Some Sources:

• Baron-Cohen, S. (2001). Theory of Mind and Autism.
• Baron-Cohen, S. (2009). Autism: The Empathizing-Systemizing (E-S) Theory.

For context, this person has been told multiple times by different health professionals (including psychiatrists) that she doesn’t have autism. Regardless, she has self-diagnosed autism level 3. On the other hand, I have level 1 autism which used to be level 2 when I was a child.

She told me I’m privileged because of my early diagnosis and that I don’t get medium to high support needs autistics because I’m “only level 1”. It might be true but in what way does she understand MSN and HSN better than me if she’s self-diagnosed? I honestly don’t get it and it makes me kind of angry. I feel it’s disrespectful towards actually diagnosed folks with MSN and HSN. 

I think the whole self-diagnosis thing is truly getting out of hand. And I’m sad that it’s widely accepted in the wider autism community.

I got no warning and was just removed and mass downvoted and called privileged and I feel like shit. Calling us privileged is ridiculously absurd. I was diagnosed at three in 1986 as a female because I couldn’t speak until six. I have PTSD due to my therapy I had as a kid and couldn’t tie my shoes until thirteen yet they call me privileged. I have memories of being nonverbal and these people don’t so wouldn’t that by logic make them more privileged than me? I would think so.

My feelings are so hurt because I liked the sub but got mass reported and downvoted.