Why It’s OK, Even Necessary to Self-Diagnose in the Autism Community

If you have read online about autism and neurodiversity as a whole on Instagram, TikTok and other social media and online platforms, you may see that self-diagnosis is considered valid and accepted… and by that, I mean accepted as an identity, with the concept of labeling yourself as being Autistic in order to better explain who you are as acceptable. Valid.

This is something I didn’t immediately understand. Why wouldn’t someone get a diagnosis?

Well, there are a number of reasons. Here are some of the most common ones I have read:

1. Getting a full autism spectrum disorder diagnosis, including an IQ test and interview, is very expensive and/or may have long wait times.

2. Females and those assigned female at birth are particularly less likely to receive an accurate diagnosis.

They are often misdiagnosed with a different condition or nothing at all — just labeled as “sensitive.” This is because the current DSM-5 criteria for autism are based mostly on boys (this is also true for ADHD). That being said, there is no one specific way to be Autistic — anyone can have any presentation. My point is that presentation varies widely from what is in the current DSM.

Some may ask, is being Autistic just a trend? Something cool to say? A way to be different? But that’s the point, isn’t it? We (yes, I say we, as I feel I am part of this community) already grew up feeling different, unusual, odd, out of sync. We don’t want to be different necessarily — if anything, the opposite is true! When we realize we are Autistic, it validates our lived experiences, which oftentimes come with traumas like bullying, abuse, or neglect.

Why am I so passionately writing this article, you may ask?

Well, you may have guessed it — indeed I do self-identify/have self-diagnosed myself as being Autistic. I made this realization for many reasons, all of which may be too much for one article, but will certainly be something I write about going forward!

But… but Kelly, you’re so social?

But… you’re not that awkward?

Kelly… I’ve never noticed you having a meltdown before?

Well, wouldn’t we call those stereotypes? And second, one of the reasons many individuals are diagnosed later in life (if at all) is because of masking. Many Autistic people mask, or hide, their struggles. So sure, I may seem one way on the outside, but that is not truly indicative of what is on the inside. Not to mention the above comments would be stereotypes!

Some stereotypes I’d like to squash:

If you are Autistic, that means you are an introvert; you can’t be an extravert. FALSE.

If you are Autistic, that means you are incapable of making eye contact or having close friends. FALSE.

If you are Autistic, that means you are either “really Autistic” or “mildly Autistic.” FALSE.

And so, so many more. I am Autistic because I have had lifelong struggles with social interactions; only I started to mask more as I got older. Fitting in has never been easy for me; I’ve always felt out of sync or like an alien. I am extremely sensitive, both emotionally and in a sensory processing sense. I struggle with attention and executive function. I can’t multitask. I had many developmental delays, including some that I never caught up to (I am an adult now!). I struggle with motor coordination. I tend to ramble. I have special interests and hyperfixations. I am drained easily by the stimuli around me. I have meltdowns, many of which are quiet or even silent, as I’ve written about previously. I don’t always notice when I’ve started to bore someone/monopolized the conversation. My processing speed is slow.

I have learning disabilities, ADHD, anxiety, and depression, like many Autistics. I also have trauma from growing up undiagnosed. I struggle with handling changes and transitions, big or small. I am not flexible, often rigid in my thinking. I have low frustration tolerance. Mental pain is a much bigger deal to me than most physical pains. I struggle with eating at times because of sensory issues. I don’t understand sarcasm well and take things literally. And the list goes on…

And just because these traits are part of my autism, it doesn’t mean someone else who is completely different is not also autistic.

Once you’ve met one Autistic person, you’ve met one Autistic person. In other words, there is so much great and beautiful variation in this neurotype, one that can also be a challenging disability.

So, whether you are diagnosed by a doctor or psychologist and able to receive official services, or you have self-diagnosed, you are valid. Totally and completely valid!

I am Autistic and with that, I am slowly figuring out who I am as I battle mental illness, process trauma, and embrace my neurodivergent identity. I think I like who I am, even if it isn’t always easy or understood.