Finally formally diagnosed

[Guest guest]

I'm writing two posts that begin similarly. This one is

informational, the other is a request. I want to make sure people

realize they're not duplicates and miss one.

Well, I finally got a formal diagnosis. Unsurprisingly, it's

Asperger Syndrome, not Autism. Due to my issues with language, they

also gave me the additional diagnosis of neurocognitive dysfunction

of the right temporal lobe. This just convinces me that if you want

an Autism diagnosis and you're not a school-aged child, you have to

show up with an alpha-smart keyboard or something or there's no

possible chance you're not going to end up with the Aspie DX. Oh,

well, I'm not going to complain even though I know how inaccurate it

is. My boyfriend has an Asperger diagnosis *and he even had a

language delay.* There is this unscientific practice (I think it

was Tony Atwood's idea) that if the Verbal IQ is higher than the

Performance IQ, one should get the Asperger DX. It's very silly,

especially because the IQ test I got in April 1997 showed a higher

Performance than Verbal IQ—the difference that I took the WAIS-R then

and the WAIS-III now, and they took out Object Assembly from the

Performance section, and that was by far my highest score in that

category. However, my Verbal IQ has really shot up. I've been

fascinated by examining my IQ test scores. American children are

more tested than any other children in the world, and as a result, I

have Achievement Test scores for every year except one from first

grade through eight grade. I know I took some others, but I don't

know where they all are. I was especially fascinated by the fact

that, in 1st grade, I had very high Math skills (84th percentile) but

by 6th grade, they had plummeted to 17th percentile. I consider

myself rather bad at Math, and my SAT scores were more than 100

points away from each other even though I intensively studied for the

Math section and did not study even one moment for the Verbal section

due to time constraints. Also fascinated, is that for the longest

time my Language Expression lagged behind my Language Mechanics by

about half, even when my Language Expression shot up to 97th

percentile. Then, all of a sudden in 8th grade, all my Language

metrics are all really high, 97th or 98th percentile. Since the very

low maths scores in 6th grade (I had C/D in math throughout

highschool, normally a D, despite A's and B's in many other

classes). I think the shift came because I decided in 7th grade that

I wanted to be a writer when I grew up. I later changed my mind, but

I started writing at least one short story every week for over a

year. I'm sure all this practice is what made my language expression

suddenly catch up.

One of the interesting things about my evaluation was that I brought

in a list of things to remind me to say all the things I wanted to

say. I didn't even get to get my list out. It was all taken up

first by just a few questions to establish that I had banged my head,

pulled my hair, stimmed with my hands (I brought in 5 early childhood

photos to evidence this), and if I had a language delay (I told him I

was echolalic but Mom doesn't really remember if I talked on time as

she seems to have lost track of an entire year). Interestingly, Mom

decided to start giving me a lot more info just after the diagnosis.

She told me that, as an infant, I would often spend an entire day

crying. She remembers my older sister leaving for school, with Mom

rocking me and singing to me, and when my sister got home, she was

*still* sitting there, rocking me and singing, unable to quiet me all

day long. Other times, she'd be so tired of all the crying that

she'd just stick me in my playpen where I'd be safe and walk out of

the house to get away. In considering this, I realize this is

probably partly why many Autistics don't realize that talking is for

communication. It makes perfect sense; babies cry, and someone pays

attention and meets their needs. Autistic babies cry, and no one

realizes what their needs *are,* so there's no meeting them. Later,

because they're not used to their vocalizations resulting in

communication, it simply does not occur to them that, hey, this voice

thing? You can use it to advocate for your needs! I went to a

summer camp for `at risk' children and I came back echolalic and

unable to communicate. I was also self-harm stimming, which I had

not done in many years, and they had to stick me in Special Ed for

the first time. This was the summer before 4th grade. One of the

teaching tactics they did was to ignore me when I asked a question,

and to praise other girls who were doing as they were told and not

asking questions, each time I asked something that they couldn't tell

was related, or even if it was to ask for additional instructions or

clarification, as they'd asked me to repeat what was said back to

them to make sure I understood it (suddenly, echolalia means

comprehension?!?!). So they awarded me the Most Improved ribbon, I

was unable to even acknowledge the presence of my parents when they

picked me up, and it took over 2 years for me to recover. I really

want that place shut down before they hurt someone else. For what

it's worth, at least my parents really knew something was different

and wrong and this later helped me with my self-diagnosis. Well…I

had already self-Dxed at that time, so it merely backed me up.

My mouth fell open when I asked my mom a few days after the DX why

she was nicer to me than she had been in a long time. She

said, " It's because I found out you're Autistic. " I was stunned

speechless. When I regained linguistic ability, I said that I didn't

think anyone in my family would put so much importance on formal

diagnosis…*my sister is doing a post-doc for a PhD in Clinical

Psychology and has diagnosed dozens of people with Asperger Sydrome

and has run a Teen Aspie Social Networking group as well as working

with Autistic clients on one on.* If *she* says I'm Autistic, that's

good enough for me. I would think after all that schooling, she'd

know what she was talking about. I was under the impression our

mother simply believed her. Not to mention 95% of self-Dxed ASD

individuals are, in fact, on the Spectrum.

One of the fascinating things to me was when he told me to list words

beginning with a certain letter, but not to list any names or

places. I sat there making glottal stops for 48 seconds before

something finally came out. *He triggered my aphasia!* I was really

impressed. But then he went and decided that all these Autistic

symptoms that do not fit into the Aspie criteria couldn't *possibly*

be Autism because my Verbal IQ was in the 99th percentile. Clearly,

I'm on the Spectrum as my Performance IQ was in the 66th percentile.

But rather than actually diagnose me with Autism, they had to add

brain dysfunction of the right temporal lobe. Yay! I find it

endlessly amusing. It was specifically mentioned that one of the

things that made me Aspie was that, though I had the disparate IQ

scatter and I met all these criteria, *all of my abilities were at

least average* despite some neurological things being in

the " impaired " range. Even though there's no " must have some mental

retardation in some category of functioning, " they're operating as if

there is. *Even though* he triggered my noun aphasia! I don't have

it with proper nouns, apparently. I told him about my aphasia,

linguistic scrambling, what normally triggers it, et cetera. It's

true that my loss of speech typically will last for under a minute

(as in his test, 48 seconds), but it's still a problem. Despite all

his, " Oh, no, it's still not Autism " thing, he gave me a Global

Assessment of Functioning of 49 of 100. So, I'm a mid-functioning

high-functioning Aspie. Weird.