Hi everyone and welcome to Autistic Changeling!
The lighting might be a little bit wonky for today's video because it's not as bright outside
and I'm not getting as much natural lighting, but I think we'll all make do.
So, today I want to talk about diagnosis.
It's kind of a large topic and I'm probably going to overlook some things I meant to talk
about, but we'll see what happens.
Uh, first I want to talk about my experience with searching for and obtaining a diagnosis,
because I do have an "official" diagnosis of Autism Spectrum Disorder specifically and
also generalized anxiety.
Uh, and then I'm going to talk a little bit more generally about diagnosis.
So, I didn't get diagnosed until my third year of college.
Uh, at that point I'd been specifically looking for a diagnosis of autism spectrum disorder
for about a year, year and a half, because I had started suspecting I was autistic
and, uh, that's when I started actually talking to people and looking for a diagnosis
- and we'll get there - but, uh, this actually starts way earlier than that.
Um, so my first experience seeing someone who probably should have been diagnosing me
with something but wasn't was when I was a child, and I was having sleep issues, and
we went to see a therapist about it.
Um, just this one session, and she said "Your problem is that you think too much.
I wish I had that problem."
And, let me just say right now that I don't think telling your patients that you wish
you had their problem is a good tactic to take as a therapist?
And also - if my problem is that I think too much, like...
It was anxiety, okay, it was anxiety.
Um, but that was more of an amusing anecdote than anything else directly relevant.
So, apparently, and I don't remember this because I wasn't really involved in these
conversations, but apparently, uh, at least one person had actually approached my mom
when I was a child, and asked if she thought that I might be autistic.
Um, and at the time nobody really knew a great deal about, um, autistic traits and my mom
just kind of brushed it off as "Oh, they're quirky," you know, I was homeschooled as a
kid, so it was really easy to brush off anything weird about me as "Oh, yeah, that's what homeschoolers are like"
um, and also, you know, weird family kind of thing, so, uh, anything that was a
weird of unusual thing about me as a kid was pretty easy to dismiss, um, and it wasn't
really until we moved from Canada to the U.S. and I started going into public school that
it became more noticeable to me that, uh, no, I wasn't actually just weird, there was
like, something going on.
Um, but I like - I suspected before - I always knew that I was a little bit different than
everybody else, I just - you know, when you're a kid you're like "Oh, I'm secretly a fairy".
I think I touched on that in my last video.
Um, but once I started in high school it became a little bit more obvious that like, there's
probably a word for this that I don't know.
Um, and you know, I took AP Psychology, and they get to the section on mental disorders,
and I'm, you know, like reading through the different summaries and hoping something will
seem familiar and click.
Nothing did, because they were badly written summaries.
Um, so I didn't really start getting answers until way after AP Psych.
But, uh, yeah.
It wasn't until, I think, Sophomore year of college that, um, my mom brought it up to
me that, you know, for a while when I was a kid she thought I might be autistic, um,
and I started looking into it, and things started making sense, you know, I talked with
mom, and I talked with the therapist I was seeing at the time, um, who was a grad student
doing therapy at a place that was on campus but not officially associated with the campus?
Because the campus had it's own separate mental health thing and they kind of competed with
each other a little bit.
Um, so I talked to her, and it was - so, they all agreed that I was autistic.
However, the therapist I was seeing didn't have the authority to really say for sure.
All she could tell was "You might be" because she couldn't officially technically say anything
more than that.
Um, so she started trying to arrange an assessment with the people on campus who actually officially
did all that stuff.
Um, and that assessment is how I actually got diagnosed.
But in the meantime - because this process took way longer than I would have expected
it to take - uh, in the meantime I also saw a couple of other therapists.
And here's where it gets into a Story, with a capital S. So, this was over the summer,
because the sophomore year school had ended and this was over the summer after that.
So I haven't heard back from people that my therapist had supposedly contacted to help
me get a diagnosis.
Um, so, I figure "Well, I'll go see some people myself, go see if I can expedite this a little
bit".
So I see this one therapist, um, and - I'm going to talk about some red flags when you're
seeing therapists.
Uh, first of all, in general try to stay away from anybody who constantly compares you to
their children or their nephews.
Uh, this therapist kept comparing me to her autistic nephew, and it was kind of uncomfortable.
I'm not your nephew, I'm not really comfortable being compared to your nephew, uh, it was
- she wasn't sharing personal anecdotes or anything, she just like "Oh, you're more high
functioning than my nephew," and she told me this like, several times, but, like, it
wasn't relevant, it wasn't helpful, um, it was just kind of... uncomfortable.
Uh, because autistic people are different.
I'm going to make a separate video at some point about functioning labels.
Suffice to say, I don't like them.
Um, and, all of that aside it was just...
Meh.
It wasn't helpful in any way, it didn't serve any purpose.
Um, and also, uh, she just - I don't know.
Um, I talked to her and I said "You know, I think I'm autistic, I'd like to, you know,
talk about this more, see if I can get a diagnosis, you know, if you agree," My mom was there
to help provide information on when I was a kid, we were going through the diagnosis
criteria.
She didn't seem to fully understand, uh, the diagnostic criteria, to be honest.
I think I had a better grasp of autistic traits than her at that point, because I had been
researching and she probably didn't deal with a whole lot of autistic people, and that's
one of the reasons, honestly, why I do support self-diagnosis, because I have definitely
interacted with a lot of mental health professionals who don't know as much about autism as I do.
Because I am autistic, and I have done a lot more research on it than they have, because
they have to know about a lot of different types of mental health stuff, and I don't.
I just have to know about the things that affect me.
Uh, so I, at that point, probably did understand the diagnostic criteria better than her, specifically.
This is not to say I understand it better than everybody out there, but compared to
this one therapist who maybe wasn't actually super familiar with all of this, Yeah.
I don't know how well she understood it.
Um, she couldn't really explain the criteria that basically boils down to stimming to me,
because I had a question about it, and she seemed pretty lost.
So anyways - that was, that was one experience that, um, honestly, left me feeling kind of
confused, because she - in the end, she did tell me that she had diagnosed me.
But, like, she didn't give me any paperwork, there was no way that I could prove it to
the university if I needed accommodations, there was no way for me to have this documented
anywhere.
And what I really wanted, when I was looking for a diagnosis, was for some kind of written,
official confirmation that someone who knew what they were doing had agreed with me that
I'm autistic, and I could use that documentation if I ever had to be like "Look, I am autistic,
here's the written proof."
I really wanted that written proof, um, both for validation that, you know, I wasn't just
making all of this up, that someone else out there who knew what they were doing agreed
with me, um, and also for practical purposes if I needed accommodations.
Um, and I didn't get that from this person in either sense.
I didn't feel like she knew what she was doing, um, enough that I trusted her, and I also
did not get any written documentation at all.
So, that was one thing.
I also went to see a psychiatrist over the same summer.
Um, who said that I "seemed autistic", but that he didn't believe in diagnosis.
Which confused me a little bit, because...
There are valid reasons to criticize the concept of diagnosis, but also, it's a thing that exists
Um, and it just felt kind of dismissive of my experiences and, uh, he also gave me some
information which my doctor later told me was not accurate about my medication.
So, yeah, I'm a little suspicious of therapists now, sometimes.
But the therapist that I actually was seeing primarily when I was in university was wonderful,
and she did eventually contact the people who were in charge of all this and I did eventually
get in to see them and them I trusted.
Um, it was more what I had been expecting when I was looking for a diagnosis, with,
you know, paperwork that I would fill out about sensory issues, executive function,
things for my mom to fill out about when I was a kid, and I was in there, and there were
tests where they had this whole - um, I don't know if I'm supposed to say too much about
them?
"Spoilers", or whatever, but there were some interactive tests and, um, interviews and
such, and in general it seemed a lot more professional, and a lot more structured, and
that was more what I had been looking for from the beginning.
And a couple of months after the sessions were over, um, they did give me an official
written report, which I did use to get accommodations at university.
Um, and I haven't needed accommodations at my work, but if I needed to, I could submit
that paperwork and get those.
And paperwork like that, after a set of tests, like the ones I took, were more what I had
been looking for.
So, that's the story of how I got a diagnosis.
Now, let's move on to more general discussion here.
So, I know that the main controversy surrounding the concept of diagnosis tends to be about self-diagnosis
So, I do support self-diagnosis.
Uh, but on the other hand, I didn't feel comfortable with it.
Um, in terms of myself.
If someone else comes to me and says they're autistic, I'm not going to question them,
I'm not going to say "Oh, you know, show me your diagnostic paperwork" That's creepy and
invasive and honestly, inappropriate.
If you say that you're autistic, I believe you.
Um, you know, I think if someone has done the research, talked to other people, you
know - you know yourself well enough to say that you're autistic, then that's fine with me.
That's all I need to know.
But, on the other hand, I did not feel comfortable with that, both because I didn't feel like
I could really be certain of myself, uh, and also because I didn't want to have to deal
with the kinds of crap I see self-diagnosed people getting.
Um, I just wasn't comfortable with it, from my own perspective.
But, that's why I think, you know, we can have a variety of people doing a variety of things
Um, I think there's a place for both in the community.
Um, there are a lot of valid reasons to not want to get an official diagnosis.
Some people are self-diagnosed because they can't get an official diagnosis but they do
want one because they want the confirmation, or they want the accommodations that they
would get through it.
Other people choose to stay self-diagnosed because they don't want an official diagnosis,
because they're afraid of the repercussions from that.
Like, with healthcare or, I think, adoption, I'm not specifically certain about what kinds
of repercussions, but I know that there are some that people are concerned about, uh,
if they disclosed a diagnosis.
Um, and that's fine too, you know, I don't think anyone should be forced to get a diagnosis.
If just having that self-knowledge is enough for you, then, you know, why spend the money
and the time to get something you don't need?
Uh, but I did need a diagnosis, and I did kind of have to fight to get one, um, because
people didn't think diagnosis was a real thing, or people just couldn't diagnose me because
they didn't have the authority to do so.
So, I think that, you know, if you need a diagnosis it should be more easy to get than
it currently is - not in the sense of like, "they should, you know, make it easier to
say that someone's autistic", but in the sense that, like, there shouldn't be as many hoops
to jump through just to find out what words can be used to describe the way you think
about things.
I mean, it was so hard just to find someone who would understand what I wanted.
I talked to a lot of - a lot of the time when I would say that I was looking for a diagnosis,
I think it confused the people was talking to.
Um, like they couldn't understand why my first desire wasn't to be "fixed", or to look or
act neurotypical, it was to understand myself, who I am and how I act.
And that desire for self-understanding over change seemed to really confuse people, because
primarily what I wanted was, first, to know where I'm at, and that doesn't seem like a
strange thing to me.
Maybe it's because I'm an engineering major, and, you know, when confronted with a problem
the first thing I want to know is "What is the problem?"
You can't, you know.
I need to know where I am, what I know, what I don't know, what I have, what I don't have.
So for me, I did want words, right away, because I wanted to know, and that doesn't seem to
be something that's really unusual, but it did seem to confuse a lot of mental health
professionals.
Uh, and I think that, you know, in an ideal world, the value of having those words and
having access to a community wouldn't be as underestimated as it seems to be in the mental
health professional- professionality?
Whatever.
Another thing I want to talk about is the words that we use, and the experience of knowing
that there's something going on, but not having the words for it, before I was diagnosed.
I remember in the early days of looking through the neurodivergent community tags and such,
uh, at that time the debate about whether people who had "X" condition could use the
word neurodivergent was still very much in play.
I think it's died down a little since then, but the debate was still pretty prevalent
at that time, and, you know, as someone who didn't know even what category of "what" I
was falling into, uh, like, at the time I couldn't have told you whether I a developmental
disorder, a mental disability, a personality disorder, or what.
I didn't know.
Um, you know, back then it made me feel like there was nowhere for me to be, and that's
why I strongly believe that neurodivergent as a label should be open to anybody who feels
that they are neurodivergent, you know, I think that it's important to have words like
that for people who don't know what other words they have yet.
Um, because having words to describe your experiences is important.
Not everybody has to use the words, but to have them available, I think that's important.
I think that matters.
Even for people who don't have any other words.
Especially for people who don't have any other words.
Uh, yeah, you can hear the rain because it just started raining, kind of suddenly, um,
they've been calling for thunderstorms all day, I guess we're finally getting them.
Uh, so that's most of what I wanted to talk about.
I've also seen some people talking about how, you know, in an ideal world we might not even
need the concept of diagnosis, um, and how the basic, fundamental elements of how it
works and how it's viewed might change.
Um, and I agree to some extent.
Um, I think we're always going to need words to describe our experiences, and I think words
like "autistic" would be useful no matter what world we live in.
I do think that the need to have a diagnosis written officially and on paper so you can
get accommodations wouldn't exist in an ideal world, because I think an ideal world would
be accessible to everybody, and you wouldn't need to jump through so many hoops just to
have access to things.
I think accessibility is important and that, you know, if someone needs...
I feel like the way our educational system is structured would have to change pretty
drastically for this, by the way.
But, uh, honestly that's not really on topic here anymore.
I don't know what an ideal world would look like.
I just know it's probably not this one.
Anyways, uh, that's all I had to say, I guess.
If you have any questions or any suggestions for other topics you'd like me to discuss,
you can leave them down in the comments, and have a great day!
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