There’s a hashtag going around on autism forums: #actuallyautistic. It is trying to make it exceptionally clear that the authors of these posts are, well– actually autistic. Being actually autistic matters. Our experiences of the world differ.
What is “actually autistic”?
Well, let’s start by making it clear what it is not:
- Actually autistic is NOT a parent who has an autistic child
- Actually autistic is NOT a supporter of autism
- Actually autistic is NOT a person who thinks they are autistic
- Actually autistic is NOT an introvert or shy person
Actually autistic = formally diagnosed with autism
EDIT FEB 2019: Also see my follow-up post, as I have got a shitload of trolling on this site since I wrote this blog… and so, if you’re all pissy with me because I decided
to write my own opinion in my own blog, maybe you can learn why I wrote this before you get all bitchy and judgy about me and then feel the need to vilify and attack.
“I think I might be autistic”
I understand that some of you may think you could be autistic. Perhaps someone has suggested it to you, or you have read a bit about autism and have thought, ‘Oh my; that sounds like me!’
I also know there are many authentic might-be-autistics out there and you all are just figuring out your life, trying to see where you fit into the world, or perhaps you totally identify and feel your autistic traits to be true. I get it. I’m not shaking my fist at you! Go find your way; go seek out who you really are…
If you can, if you’re ready and you think might be autistic, then I urge you: just go get the diagnosis. Yes, it is expensive, but then you SAVE up and get the diagnosis! I saved for mine. It cost over $1000 in total, to get my diagnosis and mini-report…. but I got the diagnosis. I wanted confirmation of my suspicions, and I wanted support (which you can only officially get with a diagnosis, by the way) as I was really struggling with make ends meet, find work, and figure things out. Having a diagnosis means you can get a pension, and get help at work, school and in life. I did reflect on whether I could accept myself with a “disability’, and that stopped me getting my diagnosis formally issued for about a year. Perhaps I was in denial? But I did get one, and for me, the diagnosis was a God-send. It helped me a lot.
So, if you think you might be on the spectrum, just take that leap and start the diagnosis process. I think it’s worth it.
Plus, if you’re not diagnosed with autism, you will learn more about yourself and have access (now) to a psychologist who could help you further with your difficulties and symptoms.
“Poor Me, I have [condition]”
I do not have a problem with people who feel they might be autistic, but I do hold an issue with: *people who think might be autistic going around telling people they are autistic and then demanding reasonable adjustments for “their autism”.*
What’s ‘reasonable adjustments’? I mean, in legal-speak: It’s the act of requiring a workplace to make accommodations for you based on your mental health issue or disability. So, I’m not just talking about asking someone to speak quieter, or that you like to avoid crowds, or that you don’t want hugs. This is about a formal accommodation made directly and in an official capacity, related to your diagnosed condition.
I contrast “actually autistic” with “poor me” as this is a big problem in our community, as well as in the other mental health fields. See, the ‘Poor Me’ status (also known as victim mentality) is superbly harmful to those of us actually diagnosed with a condition. Whether you are actually autistic or actually bipolar, or actually depressed, you will know– when someone goes around claiming they are so hard done by for their numerous (non-diagnosed) problems, it just gets old.
If you share traits with a condition, it does not mean you have it—
If you like to keep to yourself, do repetitive moments and collect stamps, that does not make you autistic. If you have anger, mood swings and go on wild shopping sprees, that does not make you bipolar. If you are picky and wash your hands a lot, that does not make you ”OCD. If you feel sad sometimes, that does not make you clinically depressed.
What is a ‘Poor Me’ person?
The Poor-Me is an attention-seeker first as foremost. They lead conversations with their symptoms, and then expect others to swoop in and offer commiserations. You may know someone like this…. Their lives are ‘so difficult’ on account of “their condition” and we are meant to say: “Aww, Poor-You for that [condition]”. They are the ones with every new fandangle disease and disorder, or emotional upheaval or issue… And it’s almost as if our pity matters more to them than anything else. When we offer to help, our help is rejected, because to the Poor-Me, solving the problem would mean they have nothing to complain about!
See, a Poor-Me uses “their condition” as an insurmountable problem. It is the focus of everything in their life, as if negativity revolves around them; their life is filled with constant badness and everyone just wants to hurt them. Why? Because of “their condition”. It is the core reason why they cannot do anything in life. “Their condition” causes all the bad things….
Before you jump on me about being insensitive, I want to stress— I know, when you have been actually-victimized (like abused), you’ll stay in this dark place of negative loops a long while. I also know if you are #actuallydepressed, a victim mentality just happens. I get all of that. But I am not saying that thinking everything sucks when you’re clinically depressed or reflecting on your childhood abuse is the same as being a ‘Poor Me’. Sure, sometimes (if you’re honest), you know you’re acting out…. but for the most part, being depressed makes you care so very little for anything and anyone, getting attention is the last thing on your mind!
The #actuallypoorme individuals, however are ALWAYS seeking attention for “their conditions” and more often than not, they do not even have a formal diagnosis!
“Can I be ‘Poor-Me’ and #actuallyautistic?”
This is sometimes a possibility, and I have found it tends to happen when individuals are just very recently diagnosed with autism. I call this “diagnosis-shock”. Even if you were expecting the diagnosis, it can still seem overwhelming to now get a piece of paper that essentially says: ‘yes, you have a disability’.
When you are first diagnosed, it can feel as if your whole world is caving in and you are unable to achieve anything!!! But *BREATHE* take a break, reflect on things a while…. Look, you made it this far– you are so very capable in life! Have faith in yourself. This is simply a moment of shock. Yes, you are diagnosed with autism, but that does not mean you are an invalid.
I have found #actuallydiagnosed individuals who have moved out of those first few months of diagnosis-shock are extremely grounded individuals. They move forward despite their diagnosis. They want to achieve things, start relationships, have jobs, make things work despite their condition.
I also know that many autistics have been victimized in the past and thus will often come across as needy and attention-seeking, and this, again, is something most of them choose to work on.
A ‘Poor-Me’ will not even try to move forward. A ‘Poor-Me’ will fight everything in their world, push away your help, refuse to look at themselves (per therapeutic change), and simply lament “their condition”– using it as a barrier to everything and anything.
The most sad thing about interacting with a ‘Poor-Me’ is that they would rather cut you out of their life than accept even a inkling of responsibility or notion that perhaps they are in victim-hood…
Live your TRUE SELF, not your victim self
It is a hard thing indeed, to ask an individual who has been truly and deeply victimized, to put aside that victim role and life their life as a real authentic self. I highly recommend getting a good therapist to help you find your way into this proverbial light; out of the darkness… However, challenging, it is possible to do this– I mean, I did. I overcame such immense horrific dread, to see the light…
You are not ‘Poor Me’. You do not need others to stroke your ego, or commiserate your plight of “your condition”. You do not always need to be the downtrodden and sad. That is not YOU. Yes, you have a diagnosis, but you can live well despite it. Yes, you may identify truly as autistic, but you’re not restricted because of this!
Accepting your condition takes time, but you are a determined individual. The diagnosis, the ownership of who you are– is but one aspect of you. Society may like to define you as disabled, dysfunctional or not good enough…. but that’s only one way to look at it all. See, this also highlights your difference, your uniqueness, and your beauty.
You have made it this far, and while you struggled, you kept pushing onward. You learned interesting things about the world and things about yourself. Not everything in the past was bad; there were good times too, there were positive lessons and experiences. Even people who survived the concentration camps speak of moments of lightness and deep learning in that place of sick darkness. Humans persevere; it is our brilliant shining quality… and you will shine on too!
Being #actuallyautistic or #actuallyschizophrenic or #actuallybipolar or whatever your diagnosis is — this is who you are. It is your identity. So make it yours!