Posted in Advocacy, Autistic Identity, Identity, intersectionality

Dear Late Diagnosed Person

To the Late-Diagnosed Person–

I hate that term, Diagnosis, since it sounds like someone had to validate your very existence.

I prefer the term “awareness” or “validation.”

Awareness is when you knew your brain operated differently.

Validation is when someone said, “Hey, your brain works differently” and they didn’t mean it as an insult.  It just was a fact.

How do we ever know what it’s like in our heads, as compared to someone else’s?

I think one of the interesting things about finding out that we’re Autistic in particular, though this really goes for any Neurodivergent quality, is we get to actually think about what other people see inside their heads, and then we encounter a whole lot of interesting information when we realize that everyone is not doing what we’re doing.

I’ve blogged before about how I have aphantasia, which means I literally do not ever see images inside my head.  I have a blank slate, and I sort of “feel” like things happen when I dream.  I can recount a whole saga about what happened in a dream, but I didn’t see anything, the entire time.  People talk of dreaming in color vs. black and white, and I dream in “feelings” and images.  The closest thing in literature to understanding what this is like is that chapter in A Wrinkle in Time where Meg tried to get the Ixchel to explain what things looked like, and they had no concept of what things looked like; rather they knew what they were like.  It was an important distinction for them.

My aphantasia would be a whole lot less weird, I think, if I were also Blind.  I see with my eyes, though, so I don’t quite understand why my brain doesn’t make pictures inside me.  I am quite curious whether Blind people are also have aphantasia, or if they can, in fact, make pictures in their heads.  I would hazard a guess that it depends on when they were Blind.  The late author Beverly Butler, for example, explained to my class once that she knew colors since she lost her sight when she was a tween.  That made a difference for her in writing, she said, because she could describe things without having to guess at what colors were like.  Side note: she used to laugh at how people tried to explain colors to Blind people; she said people say red is angry, but in no way does that actually describe red.  Colors just are colors, and associations don’t help someone to envision (or understand?) a color.  I wonder now whether she made pictures in her head or not; most teachers assume you do this, so no one thinks to ask the question when the opportunity presents itself to learn.  Was the ability to make pictures in her head lost when she became Blind, or did she go on as before, dreaming in images?  Or did she never dream in images in the first place?

I wonder sometimes if my aphantasia is the reason for my face blindness.  For whatever reason, I can’t describe people.  When I call them to mind, I know them by name, but cannot make out what it is they look like.  I can tell you what they do or did or how I know them or from where.  I can catalogue many facts about this person, but I cannot describe them.

But unlike true face blindness, I can recognize people, eventually, given enough opportunity to look at them.  I think a lot of it has to do with brute forcing an image on me long enough that my brain can find the person in my memory.  I can recognize friends and family, and people on television, but with newcomers it takes a long time, and even then, I will be unable to describe them.  I can’t tell you what my husband looks like, though I can tell you what he is like and random facts about him, some of which are visual in nature, but I will recognize him upon sight.

In some ways, my life has grown much easier since I know now that I am Autistic and I can tell people that I have aphantasia and/or face blindness, and they will help me to recognize people or describe items to help me out.  These conditions are somewhat exotic so people find them interesting.

It is only when I trust them much more that I let them know that I am also Autistic.

I think, sometimes, that Autism is like the sighted person trying to describe to a Blind person about the color red.  Autism is angry, someone might say, though it is not.  Autism is not speaking, though it is not.  Autism is meltdowns, though it is not.

Autism, like aphantasia and face blindness is just some different way our brains are wired, neither good, nor bad.  It simply is different.

And much like aphantasia and face blindness, Autism is something that neurotypicals don’t understand because their brains work differently, and they assume that most brains work like theirs.

And most brains do, in fact, work like theirs.

But I wonder, the longer we Autistics find each other and meet and have Autistic children (and yes, this is, in fact, how Autistics come into the world; have fun finding your Autism family tree and annoying your relations with pointed questions), and the more we find ourselves in the company of other Autistics like us who didn’t know they were one of us, and we count them among our number, if we will become numerous enough that people will know not to assume so much about how another person’s brain works.  I wonder if people will start to understand that being Autistic doesn’t mean we’re possessed with magical powers (though I wish it did) or that we are dangerous.  Most of us are really quite boring, sad to say, though we believe that we are quite charming.

See, the thing about being Autistic that is magical is knowing that we are Autistic; nothing more.  Knowing there’s a name for the fact that our brains work differently is amazing, but it doesn’t change the world as much as we’d like to admit.  Yes, it changes the world for us, as we have a name for why we never quite fit in, but it doesn’t make the world suddenly hand us the user manual.  We’re not all regulars on a game show where, if we figure out that we’re Autistic, we’ll “win” and be handed a million dollars and a key to understanding the world that we never really got.

But knowing we’re part of the Autistic world does make our quiet lives a little different, as we learn why we struggled for so long.

It matters to us.

I think, sometimes, that when we talk about late diagnosis we think it’ll be amazing, like we’re being given a parade and the key to the city and all.

It isn’t like that.

Late diagnosis, whether you got diagnosed by an outsider, or from the community, itself (for the ten-millionth time, self-diagnosis is totally valid, especially if you find that you’re like us), doesn’t really do anything for you, sad to say.  It doesn’t make losing a job easier, or being single easier or anything like that.

What it does do, however, is teach you that brains are deeply personal, and that what you’ve been taught all your life about how they work is a lie.  It’s not an “evil villain” lie; rather, people honestly have no idea what’s going on with people not like them, nor do they know that they, themselves, might be different in the brain department from someone else.  That’s okay, though.

What’s not okay is how we’re often vilified for being different.

And this is, I think, why life becomes only a little magically different when we realize we’re Autistic.  It solves a lot of problems, true, but then it creates new ones.

This is when we learn to fight battles for people like us, but also to fight them for people not like us.  Or, put more honestly, people we thought were not like us, but are, in fact, a lot more like us than we realized.

The promise of the Neurodiversity movement is that, when we all understand that brains operate differently, which is neither good nor bad; rather, it just is, we can understand each other (and ourselves) just a little better.

I recently saw this piece at The Body is Not an Apology about Schizophrenia.  And, contrary to what you may have heard, much like Autism, there’s a whole lot of ordinariness about being Schizophrenic:  Instead, though, being Schizophrenic has a lot of stigma attached to it, and folks get caught up in what they have heard that it is, rather than what it actually is.  We Autistics have been known to distance ourselves from our Schizophrenic cousins by saying “well, clearly Autism wasn’t why so-and-so did this; it was probably something else riding alongside, like Schizophrenia.”  But, like Autism, Schizophrenia doesn’t per-se mean “killer” any more than any of our other Neurodiverse conditions do.

Those of us who are deemed “high-functioning” (there’s no such thing as high/low functioning!) are often seen as privileged and this is used by the general public to discredit Neurodiversity as a movement.

They seek to divide us into groups.

But those of us who understand that we’re being pitted against each other can come together and realize that first, if we are Neurodivergent, we’re in the Neurodivergent family.  We are all here, together, no matter what our individual labels and fighting people together makes sense; it’s a numbers thing.  Second, if we are Neurodivergent, we are Disabled, and we ought to be helping with the Disabilities-related fights.  Yes, I know, many of us what to distance ourselves from “that kind” of Disability (whatever we decide “that kind” means), but remember that Disability resides in society.  None of us are Disabled because of anything wrong with ourselves, but because of a perception by the general public that there’s something wrong with us.  If we join up with the Disability groups, there is strength in numbers (this is, after all, the largest group since Disability crosses racial, ethnic, gender, etc. lines) and we are being honest because we, too, have been disabled by society.  We have been limited and silenced.

See, the thing about late diagnosis is that, once you see what the battle is, you’ll learn it isn’t about you and your specific neurotype.  It’s about all of us, coming together to say, stop being ableist.  It’s about creating another world, together, alongside people with a whole host of conditions that are both not like yours at all, yet the discrimination the others under this umbrella of Disability face is very much like yours.

This is why your life will be both better and worse.  You’ll have your answers, true, but then you have to see that which your privilege of invisible disability has allowed you to unsee: you have to see how society is so very, very ableist, and how hard it is to fight this battle alone.

But you won’t be fighting it alone; we’re all here to help.  Life may have just gotten harder, when you saw what was hidden about yourself, but you’ll have a whole lot more allies.

This is what late-diagnosis means: it means there’s a whole lot of work to be done, and you came late to the party.

But the important thing is that you’ve arrived.


We are glad you know who you are.  We welcome you in our fight for a better world for all of us.

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