That Diagnosis Thing

We took Morgan to the neurologist yesterday. Morgan is almost four, and he doesn't talk. He knows number words and he'll sometimes say "uh-oh" but otherwise, no talking. He also has a lot of repetitive behaviors and a lot of social problems like no eye contact and etc. His pediatrician immediately mentioned autism.

The neurologists said he seemed "too social" to be autistic. I wanted to take them and shake them and go "this is a really really good day." I wanted to tell them about my brother's fiance once mentioning that she'd "never seen Morgan happy." I wanted to mention that, yes of course he handed you the marker when you asked for it, not because you said "give me the marker please" but because you put up your hand and beckoned. I didn't, though, just said "yes please" when they offered to send him to an autism specialist along with the blood tests and MRI.

Well, whatever. They didn't spend much time with him and they're not specialists. I am not opposed to all the tests, as I like to be certain about things; I just don't appreciate unformulated hypothesis based on limited data. It grates and annoys me. And then, of course, I ran into all the reasons I don't want to go see anyone about myself: I mentioned how my mother had said I'd fit Asperger's criteria when i was a kid and the doctor said "well, you're too social to have Asperger's." I only spoke when I had to, I hesitated to shake hands, I avoided eye contact with a vengeance. Being able to answer questions a doctor asks is being too social to have any problems?

I know I shouldn't get hung up on it, but it bothered me all day. I don't know precisely what's going on. It's possible Morgan doesn't have autism, although I'm not sure how when he evidently meets all the criteria except that he was "a little too social" on one of his best days. But the way he experiences the world is not "normal," and the same goes for me. 

I said I'd elaborate on why I self-diagnosed, and I've decided to go down the list of diagnostic crteria and address them each:

A.Qualitative impairment in social interaction, as manifested by at least two of the following:

(1) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction.

I have trouble with eye contact, and I'm told by my fiance that I often don't have much facial expression--he thinks I'm bored or upset a lot, when I'm actually perfectly happy. I'd say that your significant other not seeing any facial expression or body posture counts.

(2) failure to develop peer relationships appropriate to developmental level

I have very few friends. I go to school and out once a week to a social group with my fiance, but in terms of the sort of friends that one "goes and hangs out with," maybe one? And I've always been this way.

(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
 

I often don't care much what other people think of things. I'll share things with people because I know they care, or because I want their opinion, but I mostly do this on, say, Facebook. Which is to say, over text where I can dump it and forget, not with the talking and making sure I have updated every new person on every new thing and AMG WHY DON'T YOU PEOPLE JUST READ FACEBOOK. I have to think to remember to tell my mother how school's going, and I don't know why I should care what's going on in the lives of most people I know unless it's something really big like a baby. I tend to skim Facebook statuses for things that are interesting or funny or big.

Facebook is wonderful. Text, no talking, I can deal with it when I like, and if people are particularly vocal on it I don't ever have to drop a line to find out what's up; I already know! Except that the people who I most want to keep in touch with don't update very often. (Brother-of-mine, I'm looking at you.)

(4) lack of social or emotional reciprocity

I have been told, repeatedly, that I have this problem. I don't really know how to maintain friendships. Emotional reciprocity... I didn't think I had issues with that until my fiance told me he feels that way. Oy.

B.Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following: 

(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

I want to find aliens and talk to them. If I can't do this, or try to, I literally do not know what else to do with my life. I also will hyperfocus on one thing, like a game or a book series or a TV show, for days or weeks at a time. Mostly these are science fiction things, having to do with aliens or some sort of semi- or non-human monsters. Also, space. I like space. A lot.

(2) apparently inflexible adherence to specific, nonfunctional routines or rituals

My routines and rituals are functional, thankyouverymuch. They help me focus and/or calm down, and mostly they help me impose order on a completely chaotic world. I did stop the weird routines, for my fiance's sake. My life has also become more chaotic than I like to think about. I think I need to go back to the routines.

(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)

I try to hide this. I do. I rock a lot and hide it by listening to music. I twist my fingers, I play with my hair, I have a lot of compulsive habits. I jitter a lot.

(4) persistent preoccupation with parts of objects

I don't understand this one. Why aren't parts of objects interesting? Gears on a bike, say, or spinning wheels... I can't explain it, really. I get what they mean but I don't understand why it's worth noting. I can hyperfocus on one tiny, tiny part of an object and be fascinated by that one thing... but who isn't fascinated by those super-up-close images of things? Really? Is it just me and a few others?

C.The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

I have never held down a job for more than 6 months. I am struggling in school, badly, despite learning the material rapidly and well when I sit down and apply myself. I have very few friends. I will forget to eat all day, or shower, or do laundry. I can't do dishes or fold laundry and I'm not sure why. Normal, everyday life is so chaotic and overwhelming that I will literally forget what day it is without a calendar. So, uhhh... yes.

D.There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).

This is just Asperger's vs. autism, which they're supposedly removing in the DSM-V, but yeah, I was talking early even, 10 months. I love words and language--I'd argue language is just my other obsessive area of interest alongside aliens. Figure out how to communicate with extraterrestrial life, remember?

E.There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.

I don't know about "age-appropriate self-help skills" as I have a lot of issues in that area but that could be 1) depression partly due to life being so damn hard to figure out or 2) Asperger's and autism having more overlap than the DSM-IV admits to. Maybe they'd call it "high-functioning autism" instead. I dunno.

F.Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia

I don't know about other PDDs, but I don't have Schizophrenia. Other PDDs though, well... falls into the same place: I'm on the spectrum, regardless.

And yet, because I can pull myself together and follow the rules well enough to talk to a doctor, I'm "too social" to have an ASD. I don't know, am I wrong here? I doubt it, really... And yet, I'm too worried that I'm "wrong" to join a Facebook group for women with Asperger's. Silly, I know.

Changing Screen Name

Decided to use my real name, despite its relative uniqueness. Why? Well, not much links here and screen names feel silly in a world where most people don't use them. My main anonymity concern is people I know offline that I'm not sure I want to let know about just everything yet, but I doubt they'd go looking for me. And there's probably worse lurking on the Wayback Machine for a dedicated future employer. The Internet is forever, after all.

School may have gone better than I thought! I will probably write a series of posts breaking this and other things down in the next couple of days.

Starting Off, or, What Now?

I intend this blog to be a journal of sorts, a place to write things down so I can sort them out. Of course people can read it, but I'm not expecting many (watch, now I'll be surprised). Anyhow, I'm not trying to write anything interesting or profound to anyone else, just personal things that I don't mind having out in public semi-anonymously.

The anonymous bit is the first thing of real concern here. I am in a state of major flux right now, not really sure which way to go. I've never been anything like "normal." Brilliant, maybe, lots of potential and so on, but it's always been very difficult for me to function in the world. For about a year I've been living with a diagnosis of bipolar disorder, but not only does the medication not help the diagnosis came out of my ARNP deciding after 20 minutes that it made sense. She never dug very deeply into, well... anything much, which I'm starting to realize is par for the course for mental health a lot of the time.

My youngest son is also two days away from being evaluated by a neurologist for autism. Every other professional we've talked to think he likely has it, and he certainly fits the criteria. Autism, of course, has a genetic component, and my mother has repeatedly mentioned that she feels I fit the Asperger's criteria since she started doing research into things on her own.

So... I went and took tests online. I know, I know, they might not be accurate, but I fall deeply within the autism spectrum on every one I've taken. I've been discovering that I actually have a hard time reading facial expressions, that I can't tell tone very well unless it's exaggerated, and that many things I have passed off as reasons I might not be autistic fall squarely into "female presentation of Asperger's syndrome." And I am finding that trying to deal with the world as though I am autistic is helping me head off problems and begin to think more and more clearly.

I am of scientific mind. I firmly believe in Occam's razor: when faced with equal evidence for two or more hypothesis, the simplest is most likely to be true. So which is simpler: a diagnosis that needs stretching to fit and can't seemed to be treated properly (bipolar), or something that people who know me well go "oh yes, that's her as a teenager" that offers coping skills that already work? I'll take door number two.

So right now I'm in limbo. I stopped taking my medication, but now I'm worried about going back to the doctor's office and telling them why. ASDs are hard to diagnose in both women and adults and I think I'm pretty good at "faking" (of course maybe I'm wrong there), so I'm afraid of going to a therapist and being told I'm wrong--and worse, getting in "trouble" for not taking my meds. I'm not against medication--my fiance, who does have bipolar disorder, is so much better even on his not-quite-therapuetic dose of lithium. But lithium carbonate is nasty to the body and the side effects have been making life hell, and antidepressants never seem to really work for me.

I have a lot more to say on all of this: why I've been clinging to medication, why bipolar doesn't make sense, why I think I'm an Aspie. I don't want this to be too long, though, and already I've typed a lot without even getting to what bothers me most. Because, you see, I have no issues with autism. I've known many people on the spectrum, terrific people, who interface with the "normal" world with varying levels of success. Being autistic doesn't bug me, except insofar as it causes me trouble from outsiders.

What bugs me is the thought that all the things I thought I could medicate away might be part of who I am. That maybe the world is too much for me, too stressful, that I won't be able to operate in it without falling apart. I think this because it's happened, over and over again. Maybe, just maybe, dealing with the world as an Aspie will let me get where I want to go. I can't shake the feeling that I'm wrong, though, and that ultimately the career I want will be too difficult to get to, not least because of the social skills required to navigate the academic world.

It's hitting home, right now, because I've yet another bad quarter in school, grades are out tomorrow, I'm not sure if I'll keep my financial aid or not and if I do... can I handle this? Can I do it? I'm not sure. And letting go of this would be hard. What I want to do is specific and it's strong, and there's so little way I can think of to be involved in it without a dgeree. I want to work on SETI, you see. I want to communicate with alien life. Or maybe I want to get a degree in planetary astronomy and find evidence of life in the solar system or elsewhere. I haven't quite decided. But I want to see if someone else is out there. I feel so alone so much of the time; I can't stand to think that this one little planet is the only one ni the universe with intelligent life.

Language fascinates me and aliens fascinate me; I want to study both and figure out how to talk to creatures whose minds work differently than ours. And if I am autistic maybe I'm just what's needed, someone whose brain works differently, someone who could have a different take, help to work out what to say if we ever manage to get a signal through. I've got some ideas on where and how to look that I'm not sure we've tried yet. How can I do this if I can't go to school and get a degree? And how can I convince the schools that I need help, that my year of failure is because I've been doing things all wrong, to please please give me a second chance, if I don't go get that elusive official diagnosis?

I'm not sure what to do, right now. One thing I can do is write, so I do so, and throw the line out there, and pray that I manage to make this work... because I don't know what else to do, if things fall through. I thought medication would fix things, and it just seemed to make them worse, and now... now I'm hoping that tomorrow I get good news.

In the meantime, I go to play video games and watch my younger daughter, who refuses to sleep at the right times, and realize that it's partly me--that part of my fascination with the stars comes from a desire to be awake at night when it's quiet and cool, when the rest of the world is asleep and there's less noise. Normal folk go to bed or turn up the lights at night and ignore the sky and the vast emptiness dotted with light. I used to embrace it, even if I often feared it; now I hide behind walls and lights at night too, and wonder why I have to go to school in the daytime to learn to study the night.