Executive Functioning, Friendships

One thing that is said often about people who are autistic is that we abhor change. This, for me, is true in some respects. Emotionally, I don't mind change; I actually enjoy it to some degree in that it keeps my life interesting. In other respects, however, it plays hell on my life because it makes it very difficult for me to accomplish anything. Routine, for me, is critically important for my productivity and disrupting my routine can be disastrous.

Take, for example, housework. I have a great deal of difficulty working in a "slightly messy" environment because the line between "clean enough" and "needs cleaning" becomes too blurry for me to conceptualize. In response, I will allow the area to become a complete sty before I become so frustrated due to my inability to live in the environment that I engage in a frenzied purging, cleaning spree to restore my environment back to the way it should be: I restore my system returning everything back to exactly where it belongs. It becomes easy enough to maintain this system because it becomes easy enough to recognize when something is amiss and I'll be capable of correcting it.

Should something disrupt my routine, however, such as a bout of depression or stressors from some other source prevent me from properly attending to my duties things can become highly difficult. That counter top which used to have a special place for every single item no longer has the same rules to it. I am no longer able to become upset that my father's coffee mug is in the wrong position or that the garlic humidor is misplaced. A new system must be generated: this is difficult and this tends to lead to neglect.

This is the crux of the problem. I'm either able to obsess over something or completely ignore it. I have enormous amounts of difficulty finding a middle ground. Having extremely strict routines or systems allows me to obsess over more things without them completely dominating my entire life, at the risk of having my routines and systems disrupted.

This is one of the reasons why I worry about living alone sometimes. My routines and systems are very fragile and having someone around to nag me really does help me overcome situations where my routine has broken down or when my system is disrupted much more easily than I would be able to do so on my own. I worry that without the occasional nag I'll fail to be able to correct a broken system or routine in time to prevent it from impacting my other systems leading to a cascading failure in my personal life.

It's not that I'm lazy, although I often feel lazy. I am extremely hard working when it I have an intact schema. It just takes a little bit of help for me to maintain a schema under stress or depression when they tend to change and fall apart.

Managing relationships are another area where I have difficulty in this regard. As long as we have a routine or system I can maintain a friendship but, because people are unpredictable often finicky, I find it extremely difficult to maintain my systems and my friendships fall apart. It becomes much easier when my friends "nag" me by calling me if they miss me or by running into me often because we work or live together. Of course, other people often seem to interpret this kind of neglect as a sign that I don't really care about the relationship when it in fact is just because I don't have a system and that's what happens when I don't have a system.

... I'm also probably struggling with a great deal of anxiety when deviating from my system in a social situation which further compounds the problem in ways usually don't occur with things like dishes.

Instant messaging programs have saved my life socially. Being on my buddy lists means that when you get on your client I'm able to see you log in and that acts as a "nag" for me to reach out to you. It's become so important in my life that not having an instant messenger has become synonymous with an inability for me to develop a meaningful and long lasting relationship with said individual. It's a system and it tends to work well.

To compound my reliance on instant messengers I find phones extremely anxiety-producing and difficult to navigate so I end up avoiding them if at all possible.

This is executive dysfunction in brief, or at least a significant part of it. This is the part of autism which most people fail to understand or acknowledge because, to the outsider who only casually knows you, this is very difficult to observe. Yet, it is real and, for me, it is the most significant point where I need support when it comes to being autistic.

Where I've Been

I've been quiet for quite some time here. I really apologize for that! I really don't like leaving this place neglected it's just that I've been so busy this last month that I haven't been able to find the time or the mental calm to really sit down and write something thoughtful. So, I thought, it's better to write nothing than to write something that's not well thought out.

The good news is now I have lots of time on my hands and plenty of ideas on things I want to write about. So I will!

So you guys know what's been going on and why I've been so quiet:

I was one of the chief people behind planning and executing my department's convocation ceremony. This, I have to say, was easily as much work as my actual classes, especially in the final month or so. It was enormous, lots of people, faculty, tickets to be sold and tracked, money to be accounted for, facilities and services to be negotiated and contracted, dissatisfied people to attend to, ticket shortages... It was a lot of things to handle and a lot of work. It was also very rewarding and something I can put on my resume, which is good.

I've also been spending a lot of time helping people study biological psychology. This was also a lot of work but it helped me really cement my own knowledge of the subject as well as boost a lot of people's grades... significantly, which is good. It also opened doors to me with regards to a position as a teacher's assistant, which is very good. I need to finalize some details with that.

Of course, with all of that going on something had to give. That meant that all those essays and papers which I ought to have been working on for the last month got pushed off until after convocation which meant a huge scramble and around-the-clock work for over a week, which was hell. Even then I didn't get everything done on time, partly because I just had to prioritize one paper over another and partly because especially under stress my memory gets faulty and I forget things, like entire essays. Everything turned out okay in the end, though, which is also good.

Then I fell asleep and slept for days. I'm still on the verge of constant fatigue and I probably will be for some time.

I suppose one can only do so much. There's only so much one can "work just a little bit harder" before they can't work anymore. At some point, one is going to fail. I suppose what with having executive functioning impairments I find myself goading that threshold far too often--taking on work which I can barely accommodate so that I can tell myself that I'm not "just lazy."

So these last few weeks that's what I've been doing. I've accomplished a lot; I made it through my finals; and, in parts, I came up short. I suppose I should learn a lesson or something from this.

Lather, rinse, repeat...

A Moment In Memory

How do you reconcile murder wrought of bigotry knowing that a person, someone's loved one, has been killed simply because someone else felt that they did not deserve to live simply because of who they were? How do you reconcile the murder of over 179 people, just in the last year. How can you come to terms with the fact that many more never came to our attention? How do you come to terms with the loss of the many more who's lives were so filled with hatred and violence towards them that they chose to end their own life rather than bear the burden of bigotry? How can you comprehend the loss they have left in their wake?

How can one begin to wrap their mind around the hatred that is so intense and poignant that it could result in such violence and tragedy? How can one have faith in humanity knowing that these crimes were done deliberately?

How is this acceptable? How is this understandable?

How can we reconcile the fact that we live in a society where our very identities are stripped from us after death by the police, by the media, and sometimes by our own families? How can we reconcile the fact that this is seen as acceptable and proper? How can we come to terms with a culture where not only are our bodies fit to slaughter but our memories fit to burn?

Nothing we can do can erase the violence and bring those who have been lost to us back to life. Yet, we can fight to make sure they are remembered, as best we can, for the people they were. We owe them this.

Please, take a moment to read the names of those who have died and to pay tribute, as best you can, to their memory.

May their memory cast the seeds of love in their absence.

Hypochondriasis

I saw my general practitioner a couple weeks ago for help with my chronic pain and I was dismissed. In a couple days I'm seeing my psychiatrist and hopefully he'll be able to help me understand what is going on with my neurology and why everything is so esoteric. I want to know what is going on with regards to my body -- I want explanations.

To be honest, I'd be happy with some clinical and institutional recognition that there's something wrong in the first place and it's so frustrating not having this.

I feel that when I sit down on an examination table that I'm sitting down to take a test. I know that there is something wrong with my body: I know that I should not be experiencing serious pain in everyday activities and I know the pain I experience is real. Likewise, I know that my memory problems are as real as my motor problems and I know my motor problems are changing in ways that are inexplicable. I know this to be real yet I feel the need to prove myself when I enter a doctor's office. I feel they will not believe me and that in the line of questioning they are waiting for me to trip up and make a "mistake" -- to tell them something that they feel is clinically suspect or impossible.

I am very afraid of being labeled a hypochondriac. I am afraid because of how many things are truly haywire with my body. I am afraid because of how unsure I sometimes feel. I worry that my communication style and how I perceive my body will be misconstrued as dishonesty or delusion. I am afraid they will not believe me.

I know what I experience is real. I know my pain is not in my head. I know my body jerks, tenses, and tremors against my will. I know that I have memory difficulties and that I have cognitive difficulty with self-care and executive function. I know this is not fake.

Yet at the same time I feel I have so much difficulty communicating what is going on with regards to my body that doctors don't really know what to do with me. I feel that I can't say "I don't know" in response to a question. I feel that if I seem unsure or if I seem too eager to point out something that maybe possibly could be something that is important but likely isn't that I'll seem like a hypochondriac. I feel that doctors expect one thing from me and it's not something I can truly deliver and I feel that because of this I am treated with suspicion.

If I appear fickle -- if I divulge a slew of possible symptoms or things that might be wrong with me it is because I am desperate. I know I am experiencing pathology and that my pain and my mind are not normal. If I seem attention-seeking and spurious it is because I am trying to give my doctors the tools they need to explain what is happening to me.

I am trying to provide the tools they need to provide the tools and the language I need to be able to make sense of my experience. This is important to me.

I am afraid, though, and I wish there were some way I could communicate in a way they understand.

House, Trans 101, and Exposition

I came home tonight and my mother, who is a huge House fan, asked me to tune the television so she could watch her show. It was a marathon so there were a lot of reruns and they were airing the episode where House is treating an intersex boy and there's the whole debacle where the parents are hiding it from him but then it comes out somehow and we have a big expose and generally have a Very Special Lesson to take home from the experience.

I've never actually seen the episode, to tell you the truth. I have no desire to watch this episode. The fact of the matter is I only know about this episode because I read about it through commentary by other people who did watch the episode. The truth is that I feel deeply uncomfortable when shows like House feature people who are like myself in terms of minority status.

Actually, I should be more accurate: I feel deeply uncomfortable when shows like House feature the minority status of people like myself. Fundamentally, when a character comes on one of these shows who is a minority the character itself is never truly the focus nor the point. The character is simply a vessel to showcase whatever makes them "exotic."

This is a form of tokenization and it is inherently dehumanizing not only for the character but for all the people who share the character's master status.

I don't much like that. I don't like something that is part of who I am exposed and put on display for the entertainment and benefit of people who are not like myself. It's just wrong. Even when the shows generally get things right and treat the issue with appropriate deference it feels violating. Fundamentally, placing difference on a pedestal for the benefit of the normative is nothing more than a glorified, modern day freak show.

... and it makes me feel like a freak.

... and the surreptitious glances in my direction to see how I'm responding don't help.

This is not, of course, to suggest that popular media should refrain from portrayals of minority characters. Certainly there are portrayals of minorities where the character is developed and a person in and of themselves. The difference is that they are characters who are minorities rather than just vehicles for 'exotic' characteristics.

~~

I actually feel that this is a large part of why I feel uncomfortable with regards to trans panels and other educational events where people of minority status get together to educate the majority. Too often I feel that these events are ultimately serving the privileged with regards to satiating their curiosity. I honestly do not feel that people are as ignorant as we assume they are and certainly if they had a mind to they could easily do the research to come away with at least the level of education they could ever hope to receive from a half-hour panel. Instead, I feel that the people on display are too often treated as objects of curiosity and, as such, not as individuals.

I've been thinking maybe how we could do better with regards to educational panels and I've been thinking that the best way to do it would be to focus the education not on the people's minority status and their life experience, which seems to be what invariably happens, but on the way that the people of the majority interact with minority persons. I feel that doing this takes away the voyeuristic factor which is so problematic while at the same time centering the discussion on the audience and what they need to do to address our problems.

~~

Anyway, this whole thing is still something that I'm working over in my head so, of course, thoughts if you have them!

To Remember Our Fallen

November 20th is Transgender Day of Remembrance. For those who don't know, Transgender Day of Remembrance is a day for mourning the death of those who have fallen by violence within our community because of who they are -- simply because they were like us. It is a moment for us to remember and to memorialize those who have died. It is a moment where we can come together to read their names as best we can. It is a moment for us to remember the real victims to the faceless violence that takes countless lives every year. It is a solemn and powerful moment.

It is for us.

If you need to understand how sacred this day is you need only think of the countless trans people who have lost their families. Who will mourn the death of the faceless transsexual killed in a hotel room? Her family has left her long ago. Who will mourn the death of the young woman who's parents wished was a son? Will her life story be edited and revised to erase who she was? Will hatred and bigotry slaughter her memory, too?

Many of my dearest friends: If they were to die would their epitaph be their own?

This day is not for you. It is for ours.

With that in mind, please read this announcement from the Diversity Center in Santa Cruz:

Transgender Day of Remembrance

Please join us for this poignant, meaningful and FUN event. We will feature trans-related artwork, trans-health information with Planned Parenthood's Dr. Jen Hastings, speakers, music, spoken word pieces by Lex - all in addition to a candle-light ceremony honoring the names and lives of those we've lost to the violence of transphobia.

Additional information with more specific, exciting event details will be posted here soon.

I am beyond words. To describe this sacred day as "fun" or "exciting" is repulsive to the extreme. I have no words to express how violent, how cruel, it is to so trivialize the deaths of our slain.

This is disgusting and it is not alone in the attempt by many to gentrify our Day of Remembrance. I am tired. Our slain deserve to be remembered with dignity and reverence. Their requiem should not be a sideshow in a pride event.

This is for them. This is for us. This is for their loved ones.

HOW DARE YOU try to take this away!

Reclaiming Love

I want to take a moment when others might be quiet to tell you something. I want to tell you about love. I want you to understand. I want you to be able to feel what it means to me to fall in love. I wish you could experience with me how deep and powerful loving another is for me. I wish I could share the happiness and joy love brings to my life. I wish I could share these things so you might understand.

I want you to understand that I fall in love.

I want you to be able to see my love for what it is. I want to challenge the stereotype that people like me are incapable of feelings like mine, that when we talk about love we merely mean horny. I want to share with you so you will understand.

They say it is different for us. More often, I feel they simply believe it so. They see our feelings as alien and because they can not understand nor identify with it they fail to recognize it for what it is: love.

I want to share my heart with you because I want you to understand so you will be able to comprehend as I do. I want you to be able to know my love like I know it.

When you look at me, when you think of me I want you to know me as a woman who falls in love.

~~

I felt I had to write this. It's a terrible thing that I should have to feel that I need to reclaim and defend something so basic and fundamental to my humanity as the ability to love another. Nonetheless, I do feel the need.

Sometimes when I think about the way we are thought of as tragedy I think of what they say about how we cannot love like they can love. So much their perception of our worth is tied with our ability to love. When I think of this and imagine how we are tragic because we do not love like they love I feel -- I remember falling in love and I remember sharing my heart and becoming one. If this is what they mean when they talk about tragedy -- if this is what they mean to destroy when they talk about wiping out autism it scares me. It scares me because what I see is the desire to destroy something beautiful: our love.

I want to love, I want all of my brothers and sisters to love. I want generations of my people to be able to experience and to feel as I do.

That is why I fight.

This entry is part of Autistics Speaking Day.