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11:01pm September 7, 2014
Anonymous asked: Hello! My little brother is autistic, and when I look at us, I see that we share a lot of traits. I've also been relating more and more with autistic people on the internet as I read their stories. I think that I might be autistic, but because I'm 18, I'm scared that no one will take me seriously. :( do you have any advice?

Read through the #actuallyautistic tag.  Post there, if you have the courage, and say you think you might be autistic but aren’t sure.  People will have a lot of advice.  Ignore the ones who say that self-diagnosis is bullshit.  They’re the ones full of bullshit, and are usually insecure about things for reasons of their own making.  The ones you’ll want to listen to are the ones who have been through self-diagnosis before.  Many of them will have gone from self-diagnosis to professional diagnosis, and will be able to point you in the right direction for that, if professional validation is something you need for either emotional or practical reasons.  Don’t let anyone tell you that you can’t be autistic if nobody’s diagnosed you yet, that’s bullshit.  People have been diagnosed in their seventies, it’s never too late.

I was first diagnosed at the age of fourteen, with PDDNOS/atypical autism.  I didn’t understand what that meant, though, so I kind of disregarded it.  It wasn’t until I got older and started reading more about autism that things clicked.  By that point some doctors had decided I was “psychotic since infancy, schizophrenic since adolescence” which is basically an old-school way of saying autistic, and they were indeed psychoanalytic throwbacks to the seventies, as I learned when I started reading the kind of books they used to make their decisions about me.  When I was your age, I got rediagnosed with PDDNOS, and then, after more of my early development came to light, with autistic disorder.  It turned out they’d known all along about that early development, but they had thought a diagnosis of autistic disorder would hinder me in life.  That was a popular view in the nineties, but at the end of the nineties they realized I needed a proper diagnosis, so I got one.

So I got my most recent official diagnosis when I was not that much older than you are.  Yes, I’d been diagnosed a few years before, but still.  It shows it’s not too late at eighteen, not by a long shot.  It was at nineteen I got diagnosed with a combination of “autistic disorder” and “central nervous system disorder not otherwise specified with sensory integration dysfunction and catatonia”.  These days they have an easy way to code autistic catatonia right alongside autism.  These days they also don’t mess around with distinctions between autism, Asperger, and PDDNOS – it’s all Autism Spectrum Disorder.  The criteria are a little stricter, but if you meet them, then the main trouble is finding a doctor who believes you meet them too.  (Which can be weirdly hard:  Some doctors will see eye contact that doesn’t exist, some will say if you’re female you can’t be autistic, it gets really weird and tangled.)

But if you’re just looking for self-understanding, then definitely look into self-diagnosis.  I firmly believe that it was the tools used by people who self-diagnose, that helped me understand my professional diagnosis.  And not the other way around.  I had to learn about myself from other autistic people, not from professionals.  

And only after I’d done a lot of learning, including crucially the ability to see myself as others saw me, could I even understand how I fit within the professional criteria.  Prior to understanding how others saw me, I could identify with self-descriptions by other autistic people, but could not identify at all with descriptions by professionals.  If this happens to you, it is likely because you don’t understand the assumptions that professionals are making when they look at you, the guesses they make as to how your insides work, and the ways they put those things together to make theories about autism.

I would strongly encourage anyone who has been through self-diagnosis or self-discovery, or anyone who has one of those Master Posts on self-diagnosis or self-discovery as autistic, to please post it in response to this, so the anon can see what resources are available for them to learn.

Remember, you won’t identify with every autistic person to the same degree.  I identify a lot with certain aspects of Donna Williams, Lucy Blackman, Tito Mukhopadhyay, Jim Sinclair, and especially Anne Corwin (who is a blogger, not an author or speaker).  Other people will identify more with Temple Grandin, maybe, who I identify with only a little.  (And I’m talking autistic traits here, not political opinions.)  The more autistic people whose writing you read, the more you will get a feel for the similarities and differences between different autistic people, and where you fit among them.  Because of that, I often recommend that people read anthologies:

Sharing Our Wisdom

Loud Hands

Autism and the Myth of the Person Alone

Women From Another Planet?

Martians on the Playground

Ask And Tell

Coming Out Asperger

Those are all anthologies that have a lot of writing by people on the autism spectrum.  I’d say the first four have the most material by the most people showing the broadest range of viewpoints, but that’s my opinion.  Martians on the Playground isn’t quite an anthology it’s more a book written by one person that quotes lots of other people in detail.

Anyway, there are literally hundreds of books by autistic people out there and if you read them you are sure to find people you identify with a lot, and people you don’t identify with at all.  Hell, in my own family… my dad and brother and I are all autistic and that’s just my immediate family.  My brother and I can both identify a lot with our dad.  But my brother and I are polar opposites – give one of us an autistic trait and the other will have the exact opposite trait, it gets ridiculous after awhile.  So if you run into autistic people you just don’t identify with it’s not that you aren’t autistic.

In fact, as I tell people often, I once read this study where they rated autistic and nonautistic children on a scale of 1 to 3 for a variety of traits.  They were trying to find out which traits were autistic.  So they expected autistic people would rate 1 on traits where nonautistic people rated 3 and vice versa.  Instead, they found that nonautistic people tended to rate 2, and autistic people would cluster around 1 and 3, for any given trait.  So it’s not that a trait was autistic, it’s that either extreme of a trait was autistic.  Which makes sense to me given how autism seems to work (as a scarcity of cognitive resources, so that we tend to either grab onto a trait with both hands or drop it entirely).  So be aware of this when reading about autism.

And please, anyone with resources, please come forward and reblog this with information that this anon could use to learn about autism and about whether they themselves are autistic.  I know I don’t have all the up-to-date resources and I would be very happy if other people could provide some of them.

And as always, read the #actuallyautistic tag, and post on it if you dare.  (Just say you think you might be autistic.  Most people will accept you, those that don’t, don’t matter.)  You’ll probably rapidly find a lot of people who will accept you as you are, whether or not you turn out to be autistic.  You could also be a cousin.  Here’s what a cousin is:

http://youneedacat.tumblr.com/post/88305423555/cousins-acs-autistics-and-cousins-autistic-cousins

And cousins are generally welcomed now that people are starting to catch onto the cousin concept again.  It basically means people who aren’t autistic but who have enough in common with autistic people that they have a place in the autistic community.  They may have Tourette’s, hydrocephalus, ADHD, schizophrenia, or some other condition that gives them autistic-like traits in some areas, especially sensory and social.  It matters less what condition they have and more how much they identify with autistic people’s experiences of the world.

Be aware there’s also a lot of autism politics on the tags, things like do you support Autism Speaks, would you like to be cured, etc.  Be careful posting about those topics until you’re sure of your position on them (and ready to defend yourself), because taking the “wrong” side can devolve into a flamewar.  Which is unfortunate, I happen to think people should be able to post their opinions without being badgered for having the “wrong” ones, but what do I know?