Is Self-Diagnosis Valid?

Do you have to get clinically diagnosed with autism if you suspect you have it? Should you, or is self-diagnosis valid? Today, we are going to be exploring the answers to these questions. If you suspect you may be autistic or have already determined that you are but feel like an imposter, this post is for you.

To Pursue or Not to Pursue a Clinical Diagnosis

There are several reasons why someone would want to go through the diagnostic process and several reasons why someone would not. Let’s discuss a few…

3 Reasons Someone Might Want to Pursue a Clinical Diagnosis

1. It provides internal validation. It’s really common for late-diagnosed autistic people in particular to struggle with imposter syndrome. It can be a struggle for people around them to understand how autism can present itself in people, and therefore, they can make it hard for the autistic person to truly see and understand themselves. And due to ASD being a spectrum, they might not relate with other autistic people who present their traits differently, making imposter syndrome even worse. They might think: Well, if I’m not exactly like this person who is clinically diagnosed, then I must not be autistic.
2. It provides external validation. It is really hard to challenge people’s preconceived idea of who you are, especially people who have known you for years or all your life. Having a clinical diagnosis would make it harder for them to deny that you’re actually autistic.
3. You could access accommodations. This is the biggest and most important benefit of a clinical diagnosis. Without a clinical diagnosis, you could be denied access to accommodations because you can’t “prove” to them that you’re autistic. Unless they’ve spent time with autistic people or have a really good understanding of the neurotype, they are unlikely to take you seriously if you don’t seem “autistic enough.”

4 Reasons Someone Might Not Want to Pursue a Clinical Diagnosis

1. There are no medications for autism or ongoing support after a diagnosis. All you get is a piece of paper and a pamphlet. For ADHD, you get a prescription—something that can help your brain calm down. For autism, you get a reading list.
2. It’s expensive. Getting clinically diagnosed can cost thousands of dollars. I don’t know about you, but I certainly can’t pull that out of thin air. I’m dealing with ongoing health issues. I’m trying to save up for a house. I’d like to have kids someday.
3. Underdiagnoses and/or misdiagnoses are common. Unfortunately, getting underdiagnosed or misdiagnosed is far too common for this to not make the list. Autism can easily be hidden by other symptoms or diagnoses, especially in high-maskers. Additionally, there are a lot of psychologists and psychiatrists who don’t understand autism enough to spot it in a high-masking adult. I am shocked at how common this is. Spending thousands of dollars to have someone tell you you’re not autistic (when you are), or worse, that you have something completely different (and false) is terrifying.
4. Fear of stigmatism. Due to ableism and an intense lack of understanding, neurotypical people and even other neurodivergent people can treat autistic people differently. No one wants to be treated as less than.

Is a Clinical Diagnosis Required?

No one who suspects they are autistic is required to get clinically diagnosed with ASD. Getting diagnosed with autism doesn’t make someone any more autistic than they already were. You could get clinically diagnosed at age 41—that doesn’t mean you weren’t autistic for the past 41 years. Whether or not an autistic person gets clinically diagnosed or not, they are still autistic.

Is Self-Diagnosis Valid?

I’m going to let you in on a little secret: I am self-diagnosed as autistic. Yup, I do not have a clinical diagnosis—at least, not yet.

Now, I know there are probably a handful of people who are going to discount everything I have ever said about autism simply because of that, but they are also likely the type of people who’d deny the fact that I’m autistic regardless of whether or not I had a clinical diagnosis. The kind of people who’d say things like: “But you don’t look autistic” or “You don’t act like my autistic cousin” or even “You’re too pretty to be autistic”… Thank you?

People seem to think self-diagnosis looks like watching a few autistic TikToks and then proclaiming they’re autistic, and while that is a problem (we’ll discuss that later), that’s not what self-diagnosis actually looks like. It may start with relating to another autistic person’s experience, but that’s only the beginning.

For me, it took months of rigorous research on what autism is and extensive self-analysis of my entire life to even move from the question Am I autistic? to the thought I might be autistic. Then I collected all my research into a big document that I then presented to my closest family members, only to discover that my parents had already wondered on multiple occasions whether or not I was “different.” And this process of self-diagnosing is how most autistic people come to the conclusion that they are autistic.

Every late-diagnosed autistic adult started out as self-diagnosed.

Should You Pursue a Clinical Diagnosis?

I’m not saying there isn’t value in getting a clinical diagnosis—there is. Whether or not a self-diagnosis is enough for you really depends on your situation. If you need accommodations, or you are struggling with crippling imposter syndrome and no one around you supports your self-diagnosis, then pursue a clinical diagnosis as soon as you are able.

However, something really important to remember is that regardless of whether or not you have a clinical diagnosis, you are going to face people who don’t believe you are autistic. This is an unfortunate circumstance that all late-diagnosed autistic people (clinically- and self-diagnosed) will come across at some point. Whether it comes from family members, friends, or random strangers, someone won’t be able to wrap their heads around you and what they know of autism.

All that to say, if you are only pursuing a clinical diagnosis to prove you are autistic to someone else, it may not be the best course of action. It won’t hurt anyone if you do (except your wallet), so I’m not saying you shouldn’t. I’m not in your shoes. This is just my recommendation.

I have nothing against getting clinically diagnosed with autism. In fact, I had an appointment with a psychiatrist at the beginning of this year to get clinically diagnosed, but it didn’t end very well. I’m not going to tell my story from scratch, because I’ve already done that. For those of you who don’t know how I discovered the fact that I’m autistic, you can read the full story here.

I was planning on getting clinically diagnosed to deal with my own imposter syndrome. At the time, I had to prove to others that I was autistic to feel validated, and I thought a clinical diagnosis would do that. Turns out, getting an appointment was challenging—wait lists stacked months or even years long. Eventually, I found a company I thought might be knowledgeable about autism in adult women, so I booked an appointment 3 months out.

When the day of the appointment finally rolled around, I was informed that they couldn’t accept my health insurance, and that it would cost thousands of dollars on top of the non-refundable $200 I paid just to secure an appointment. I was relying on my health insurance to pay for the majority of the cost, so I knew right then and there that not only was I not getting diagnosed, but I was out $200.

I walked away feeling completely discouraged. I decided to open the packet they sent to me to be filled out during my appointment, and I was shocked to find the most demeaning written test I’ve ever seen. It looked like a test for preschoolers, with questions as simple as “What is this woman doing in the photo?” and “What is 2+2?”.

Is this really what they thought would help them decide whether or not I was autistic? I am an adult woman who is clearly capable of researching where to get an autism diagnosis and making an income to book an appointment, so how on earth would those questions be remotely helpful? Later research told me that those questions aren’t supposed to be asked when assessing someone for autism. Big surprise there.

Despite feeling scammed and discouraged by this company (who shall remain nameless because I don’t want to be sued), I continued writing blog posts and posting videos. The response I got from the autistic community was so positive and uplifting, I felt like I was making a difference by helping people better understand autism, themselves, or an autistic loved one.

The more time I researched autism and listened to the stories of people on the spectrum, my own doubts started to fade, because I saw myself so clearly in the criteria. Imposter syndrome is still a struggle sometimes, but I no longer need the approval of everyone in my life to feel validated. At this point, if someone refuses to acknowledge me as autistic, they either don’t understand autism or they don’t understand me.

I don’t need a clinical diagnosis to know that I am autistic for a fact, because I always have been—the evidence throughout my life is startling. The more people I am able to reach through sharing my story and knowledge, the less I need validation from the people around me. For me, self-diagnosis is enough, and it can be for you too.

When Self-Diagnosis is Harmful

However, I cannot write this post without mentioning that self-diagnosis can indeed be harmful. Anyone who doesn’t thoroughly do their research on any diagnosis and labels themselves with something they don’t truly understand is foolish, because it’s dangerous—both for the individual and the people who actually have that diagnosis. And Lord only knows how common it is right now to be anxious, depressed, autistic, bipolar, etc. There are so many problems with that line of thinking—I don’t even know where to begin.

I just have to say, if that’s you: Don’t be stupid. Please. For your sake and everyone else’s, if you relate to autistic TikToks, do not immediately label yourself as autistic. A misdiagnosis is harmful to yourself, because it shapes your identity around something that isn’t true. But it’s even more harmful to people who are actually autistic for several reasons:

1. It shapes other people’s opinions about autism around someone who isn’t autistic, leading to more misunderstanding of the neurotype. We already have enough of that.
2. It makes it almost impossible for late- or self-diagnosed autistic people (who are actually autistic) to be recognized as autistic. This creates more confusion around autism and leaves autistic people without a clear understanding of who they are.
3. It makes getting accommodations harder for autistic people. Oh this one is the worst, but it’s true. The more people who claim they’re autistic when they actually aren’t, the more the spectrum of autism is warped. Please don’t be that person.

No one should take self-diagnosis lightly.

My Recommendations for Self-Diagnosis

In case I get a comment about this: I am not a gatekeeper for autism, but I am very passionate about truth. I believe people should know who they are and who they’re not, because understanding the truth helps bring the right awareness, and helps people be at peace with who they are and cultivate healthy relationships with others. So, if you’re determining whether or not you might be autistic, here is how I would recommend going about a self-diagnosis…

1. Research autism extensively. You can’t get an idea of whether or not you are autistic if you don’t thoroughly research what autism is. Start off easy by listening to autistic people’s experiences. Watch videos, read books and articles, etc. If you find yourself relating with most of their experiences, then dive into the DSM-5 criteria for ASD. It can be complicated to understand, but you can learn all about it in my “What is Autism?” playlist, linked above right here. Pay attention to the required criteria.
2. Take your time. You’re not going to learn everything there is to know about autism in a day or even a month. Take your time learning about it and listening to a lot of different autistic people’s experiences to get a better idea of how autistic traits can present themselves in different cultures and both genders.
3. Self-analyze your life experiences. Spend time analyzing your life experiences and write them down if they coincide with autism. If you keep a journal, it can help you spot autistic patterns of behavior and thought when you were younger.
4. Talk to your family. If you can, talk to trusted family members about your autism research. They can point out behaviors as a child that you may have forgotten.
5. Organize your research. It’s kinda funny how every self-diagnosed autistic person has done this in some way shape or form. Whether you organize it all in one big document like I did or use some other form of documentation, make sure to organize all your autism research and your correlating life experiences into one place. This helps you find and make connections between autism and your experiences.
6. Include the autistic traits you don’t have. Since autism is a spectrum, expect not to meet every single trait. Documenting which traits you don’t relate with can help you decide if you actually are autistic based on whether or not that specific trait is required in the DSM-5 criteria.
7. Talk to other autistic people. Find an autistic community online you want to join. They can be incredibly kind and validating.

Final Thoughts

And that wraps it up for today’s post. I really hope this helped you guys and encouraged those who are unable to get a clinical diagnosis or simply don’t want one. Your diagnosis is valid.

If you are still reading this, thank you! Your support means the world to me. If you would like to become a mushroom among wildflowers, please consider subscribing to my blog below, or my YouTube channel. Both are appreciated, and I’ll see you in the next one.