The Struggles of Going Undiagnosed Until Adulthood

Uploaded by cacvoices on 08.09.2011

(Instrumental music)
I'm Andee Joyce and I am from Portland, Oregon. I had a very late diagnosis. I was 44 when
I was diagnosed. I think a lot of what I see is, you know,
people over 30 or 35, in particular, are going undiagnosed and just wondering why it is that
their lives don't work the way the rulebook said. You know, this is what happened to me.
It's like I just tried, and tried, and tried, and tried so hard, you know, to make people
like me and, you know, I couldn't do it. Couldn't do it, you know, it's like, you know, I would
just repel people I really cared about. You know, it was just bad. You know, it's like
I would like the people who, you know, are in the same boat as me who just feel like
failures, that no, this is not your fault. You know, you didn't do this to yourself. You're
not the waste of skin that society wants you to believe you are. I really think that there
are a lot of talents that are going to waste because people don't have the social skills
to put them across to people, to sell them. You know, it's like I know, I've been in
that boat and, you know, I would like there to be more help with that because
I think women in particular, you know, we're basically expected to be more socially adept
than men. You know, we're supposed to be able to decode people's unspoken desires and needs,
you know, without ever having to be told and frankly I stink at it. I'm terrible at that.
It's like I really need things spelled out for me in a way that I know a lot of people
would find kind of tedious. But you know, if I need it, I need it. You know, it's like
if that's who you are then, you know, there's no need to apologize for it, you just need
to let people know. It's like; I know that, you know when I went
to my therapist who diagnosed me, that was the last thing on my mind. I just, you know,
felt like, you know, was depressed and had these persevered thoughts that wouldn't leave
me alone and even though I tried and tried to break them up. I remember my partner, he
said that maybe I should see a therapist who dealt with neuro-linguistic programming because
that might help stop the perseveration stuff. So I looked up a therapist who was on my insurance
who did that sort of thing. I was with her in the office for ten minutes and she said,
"You've got Asperger's." I was like really? Because all the stuff I had heard about Asperger's
was about these, you know, cold fish computer geeks who didn't want to be touched and that
just wasn't me at all. And she said, "No that's one possible presentation." You know,
a lot of the time we get... or there's other people who read about this stuff and diagnose themselves.
Because, you know, a lot of therapists don't have the tools to do that with adults. You
know, adults have developed a lot of masking skills.
You know, we can go overlooked because by the time we're in our 30s or 40s we've learned
a lot of masking skills. You know, we're learned to stim under the table or something
like that. You know, we can stop, you know, we can appear fairly, you know, standard brained
and, you know, for 10 - 20 minute stretches. But then people expect us to be able to do
that all the time and they're very disappointed in us when we don't.
I basically had a bull's-eye painted on my head as far as my peers were concerned. I
mean, I wasn't even all that fat then. You know, that came later after I got so severely
depressed that I had to be on heavy duty meds. But even without being all that fat I was
weird. You know, it's like I was, couldn't keep my finger out of my nose; was constantly
tripping all over myself dropping things, you know, bumping into stuff. You know, it's
like, wouldn't of mattered what I looked like I would've been picked on. And you know,
I was labeled gifted because, you know, I was hyperlexic and I knew lots of words.
At that time they thought that meant I was some kind a super genius or something, you know.
Instead of just being, you know, one area of acceleration, you know, and I wasn't even
all that accelerated in other areas. You know, it's like; it was really hard because my
parents expected me to get straight A's. You know, with the brain I had and, you know,
I just had too many distractions. It's like when I was in class and trying to pay attention,
I have an auditory processing disorder too which is also something I discovered much
later. Which is that, if the teacher was talking and somebody else was talking in the room,
I couldn't differentiate the teacher's voice from somebody else's. But I didn't know how
to explain that to them. I had no idea, you know. It's like I would just get really annoyed
that other people were talking wishing they would shut up, you know. I would just get so
involved in that, you know, trying to figure out what the hell was so important that they
were talking about that I would miss, you know, crucial sentences I should have been
writing down. Yet probably would have helped me if I had, you know, closed captioning in
the classroom or, you know, some kind of transcript of what the teacher said so I can look over
it later. But, you know again, they didn't know anything. They just thought try harder,
try harder, try harder, try harder. I'd tried and I tried and I tried, oh my gosh I think
I made myself physically ill from all the trying.
I mean it's like as soon as I understood all these different things, you know, the face
blindness and the auditory processing thing and the hyperlexia, you know, and all those
other ancillary things that went with, you know, went with being on the spectrum. It's
a, you know, it was like somebody turned on the light and I just went oh, that's what
this is, that's what this is, that's why I react this way. This is why other people
react this way to me. But it's like, you know, then what happened after that was I got very,
very severely depressed. I think after I was diagnosed I really crashed because I had to
go through this period where I, you know, I felt like I'd wasted my life not knowing
about this. I wasted what should've been the best years of my life and now they're gone
I'll never get back. You know, I'll never have a chance to be young and carefree and
understanding of myself, you know, build a real life for myself and a nest egg all those
kind of things. I got really, really depressed; had to be put back on the hard core meds again.
You know, but it was really, it was necessary for me to go through all that because, you
know, it's like; yes this is huge stuff not to know about. My grandfather, I'm pretty
sure was on the spectrum. He was never diagnosed but, you know, I think, my dad agrees with me.
I wish I could have had more of a writing
career. I mean I did write professionally for a couple years and, you know, it's like
I kind of had an opportunity fall into my lap and I took advantage of it but once that
opportunity was gone I didn't know what else to do. You know, I really didn't have any
guidance. And, you know, that career just sort of dried up for me.
I'm writing a novel. There's actually, there's actually two protagonists. It's actually
a teen novel. There's two protagonists. One is a girl who plays baseball and the other
is a girl on the autism spectrum was is obsessed with baseball. They get, they have kind of
an interesting, they develop a rather unique friendship. The autistic girl helps the baseball
playing girl, you know, get into a situation she couldn't of dreamed of, you know, in
her wildest fantasies. It was ridiculous, I had this thing in my
head, you know, for since 2001. I think I like, I made the mistake of taking it to a
writers' group and, you know, they just ripped it a part like a bunch of, you know, crazed
weasels. The idea wouldn't leave me alone. It just
every once and awhile would pop back up. Not now, not now, I don't have time now. I don't
have time now. I don't have time now and then, you know, two years ago, you know, it
just kept, you know, gnawing at me, you know. It's like okay, you got it? If I don't do
this thing now, it's going to eat me. You know, it's like when I finally paginated
it and looked at it; I was just like oh my God this goes on for six million years! You
know, it's like, and I've got like the Aspie attention to detail in a lot of areas. You
know, where I would, you know, go on and on about the pencil shavings or something weird
like that and then I will forget about stuff. Like okay, how did so and so react to this
thing that they did? I mean that's like a pretty big thing to leave out.
I would just like my financial situation to not be quite so hairy. I'm, you know, working
on a disability application now, you know, because in case this work dries up it's like
there's this and there's all these other issues that I have and are going to make and have
in the past made it extremely difficult for me to work on site. I've gotten in trouble over
and over and over again for what I now know were obvious autistic behaviors. In addition
to all of these other things, I have like PCOS and, you know, irritable bowels, you
know, all this other stuff. Which, all of which I think was probably exacerbated by
the constant stress I experienced my whole life. I mean, I probably would have them anyway
but I think it was really, really magnified by, you know, just this low level stress,
you know, that I went through just to survive. It was just like off the charts. It was like
I couldn't relax for a minute. I couldn't, I can't remember, you know, feeling, you
know, just really calm for second. And you don't know how hard I tried.