Executive Functioning Blues

Today, as on many days, there is too much to do.

I put the items into a list. I categorize the list: Work Stuff (my job), Other Work Stuff (things I have promised to do that are also work, but I don’t necessarily get paid for them), Home Stuff (chores and bills), and Phone. Phone goes at the top of the list, then the bottom. Get it over with? Put it off until I forget or find it doesn’t matter anymore? Or just move it around? Phone goes to second on the list. There are a number of items under Phone and this is a problem. If I get to the first item under Phone today, I’ll consider it a victory. I realize that one of the Phone calls will be of an automated nature. I make that one right away, but it doesn’t count. I highlight it anyway, but I know better. I toy with the idea of sorting the rest of Phone into the three other categories, according to what the call is about. No, Phone deserves its own place in the Purgatory of the list, third place out of four.

Not that the order makes the slightest bit of difference. Within categories it may, but then I may just pick the quickest item so I have the opportunity to use the highlighting tool at least twice today. I start with one of the two spreadsheets under Other Work, this is due first. Completing it will necessitate phone calls. I can’t put them under Phone, they have to stay here. I grab the house phone from the kitchen counter and put it on the desk so it will be here when I’m ready. I notice in my browser tab that I have mail. I’ll just take a glance. This looks important, an email sent to my entire workplace!

Uh-oh. This is not good. A local autism society is requesting that my workplace participate in some sort of autism walk. There is a puzzle piece on the page. There is a breezy suggestion about who should head up the efforts, and the person named is a friend of mine. I check the autism society’s website to see how they have described the event. Although it has been publicized as a Missing Piece March, it seems that it will be more of a festival, with games for kids and information booths. I click through the site, and find no mentions of devastating diseases or burdens on society. Hmmm…the event itself is described as a place where autistic kids can be themselves without being judged. Barely a mention of the existence of adults, and of course no questioning of why autistics can’t be themselves everywhere, but I’ve certainly seen worse. On to the links page.

This is where I find problems. Big problems. Judge Rotenberg Center is listed as a “resource.” I start composing an email to my coworkers asking them not to support this organization's event. But then I start thinking that I should really be writing the autism society instead. Coworker email goes into drafts folder. While I am writing the autism society contact, I start to think that maybe I should ask for a booth at the event to promote…okay, let’s say in their language…awareness…of issues adults on the spectrum face. I know that this means things like being tasered for sitting alone outside a bar, being excluded from jobs, facing all sorts of discrimination and harassment, etc., but maybe the way I am asking sounds less threatening. Is that honest? Is it honest enough? I don’t know so I add a line about neurodiversity. But what will this person have heard about the word, so I add a definition: "Neurodiversity is part of the general idea that human beings should have human rights."

What am I thinking? A hot summer day spent in a field with noisy kids and exasperated adults to pass out brochures and display posters that will possibly just make people angry? More emails are arriving, possibly coworkers asking about the event. What do I think? Is this bad? Is it like Autism Speaks? and I don’t yet know how to tell them and I still haven’t sent the first email saying let’s not do this thing and no I do not want to stand in the hot field all day to be vilified but should I? Should I? Another mail goes into the drafts folder and the spreadsheet is still waiting and it is noon here already and everyone knows I don't work as well after lunch, but Look! I have practically written a blog post which now needs editing and I might as well post it, since I will soon be too tired and frustrated to bother.

One thing has to be done for sure. I write the autism society and explain why the link to JRC needs to be removed.

The phone goes back to its base. Maybe tomorrow…

Dear Abby, Is He Human?

Jasper is 24, autistic, and has a girlfriend. A visitor to the home he shares with his parents notices that Jasper has a mark on his neck that might indicate he and his girlfriend may be (now or soon) having sex. The visitor is concerned. She expresses her concern by suggesting to Jasper’s mother (in Jasper’s presence) that she might want to consider having him “fixed.”

I found this recent installment of Dear Abby through FWD. Read FWD’s response here. Jasper has been diagnosed with Asperger syndrome and ADD. Dear, dear Abby, rather than letting the busybody have it, suggests that if Jasper’s mother is interested in maintaining her friendship with the Bigoted Busybody, she should let her know that Jasper’s counselor has said that things might, eventually, work out okay for Jasper.

How many kinds of wrong do you see?

Here, I’ll get you started.

1. (Bigoted Busybody) Presuming to know what is best for a person with a disability.
2. (BB) Talking about a person as if he were a household pet.
3. (BB) Talking about a person as if he were not in the room or capable of understanding.
4. (BB) Promoting eugenics.
5. (Mom) Throughout the letter, calls BB her “friend.”

6. (Fill in the blanks.)

There is a lot of talk in the autism “communities” about who has the right to speak for autistic people. What this usually means is something more like who has the right to speak up for autistic people. I wonder what Jasper has been taught to believe about himself and his rights as a human being. He is a man, not a child. Not a pet. Had I been in his place, I would not have been able to respond verbally. At his age, I most likely would have broken a few things. I would have howled in pain. I make animal sounds sometimes, but still, I am human.

When autistic people are spoken about by charities, parent groups, spouse “support” groups, television, movies, magazines, and newspapers daily as if we were a burden, behavior like this becomes more common. Under what circumstances would a parent of an adult without a disability feel the need to ask an advice columnist whether this might be a good time to tell the offender to shut the hell up and get out? I can’t imagine.

The Incapable Man

I

Incapable of returning love. In the Philippines, in Mandaluyong City, a party is held to celebrate the telling of the story. He is forty-four. The book was his mother’s idea and she conveyed the story to its authors. A party is held in lieu of a wedding. This man will never be married, incapable as he is of returning love. The article telling the story of the party for the biography of the man who will never marry, who is incapable of returning love, is filled with references to unconditional acceptance. Unconditional love. The value of autistic people is mentioned. Someone is trying.

I read the story. I read it again. I think about it for days, I can’t let it go. Incapable of returning love. People have said things about me; more often, I have seen things. In their eyes, like a mix of confusion and anger, compassion and pity. There may be a word for this mix, but I don’t know it. These looks happen far less often than they used to. After all, I have had 50 years to learn how to make myself understood.

II

“Andrei paints, reads, plays a portable organ and xylophone. He has the comprehension of a second grader, but paints like a pro.”

The story says so. What is music, what are painting and poetry made of? Not only talent, not just skill, but emotion and comprehension are components.

Growing up, the arts saved my life, over and over. This is not hyperbole. While half of the bookshelves in my room filled with volumes on death and suicide, no one seemed to notice. Placing objects in a room is not considered standard communication. The other shelves contained books of modern and contemporary poetry and art. For years, these were my closest friends, quietly agreeing that nonstandard ways of communication held value. “So much depends /upon/ a red wheel/barrow/ glazed with rain/water/ beside the white/chickens.” This poem was much like the way I talked, the way I thought, and this poem was important. Evocation of the Apparition of Lenin was important. Rothko’s paintings meant something to me. Pollock’s did. Not something translatable. I was not alone.

III

I turned 50 last month. A party was held. I invited some of the people I care about, as many as I could afford to entertain, as many as would fit into the room. I designed invitations, shopped, prepared food, arranged activities and music. Other people helped too, assisting with the last minute food preparations, and designing an elaborate menu of mocktails to go along with the mid century theme I had chosen. Still others helped by keeping the party social, remembering the things I tend to forget, the introductions, the place to hang up the coats.

Placement of objects in the room was intended to communicate. To explain in words what the styles of the late 1950’s through early 1970’s mean to me, I would risk being tedious and dull. Do you really want to hear why I think that Noguchi table represents the malleability of hope in the face of mortality? Or that the starburst clock, encompassing at once the tragedy of Hiroshima and the promise of space travel, makes an eloquent statement on humanity’s relationship to technology? The party offered an opportunity to paint the picture wordlessly. To show it. To share something about myself with the people I care about, to have them enter a place in my imaginary world. By which I mean real.

IV

“The book talks about the ways in which an autistic child is accepted and nurtured with unconditional love despite the dam of a mental handicap separating him from others.”

The separating/dam. What does it mean for a person who does not like being in large groups, who prefers even solitude, to host a party? This is not a rhetorical question. Because I worry that it might mean self-indulgence. In the dominant language. To invite people to try enjoying the things I enjoy, maybe this is not called “sharing” but “demanding” something of people. I worry that it is wrong to celebrate my survival. I worry that it is seen as wrong to communicate in my own language. In the past, I have seen things. I worry. Anything I say or do might be evidence.

More goes on in the minds of others than can be demonstrated or seen. My mind. Andrei’s mind. Your mind. There is a genetic agreement that smile means happy, that tears mean sad. When you don’t see these signs, you may assume that emotions are also lacking. When an answer is not given to a question, you may assume the one questioned does not have the information. Or has the comprehension of a second grader. Or does not wish to communicate with you. The assumption is automatic, yet comes packaged with the opportunity to question. I might have assumed that my family, not reading my signals, wished I would kill myself. That would have been incorrect, though I had communicated and they had failed to respond in kind. We never did speak the same language. And love? I have had to accept over and over that it will not come in the ways I expect, but in the native language of the ones bestowing it. Like Andrei’s parents, like anyone’s parents, I must constantly adjust my expectations. This is not my hardship or your handicap, not a cause for self-congratulation. This is just the hard work love is made of.

Autism Speaks FAIL Deconstructed

Created using Strip Generator

Context

Teacher: An ironic postmodern statement on so-called charitable organizations that appear to offer sustenance while actually impoverishing those they purport to serve. The flame represents potential destruction masquerading as hope, while the diminutive scale references the minimizing of relevant voices. And then there's the medium...

Student: Hamburger???

Teacher: Wax.

Student: Ugh. Something stinks.

Teacher: This, too, is part of the narrative.

Social Skills Video

Defining Terms

Agreement upon the meaning of words can be very useful when engaging in discussion with others. There are dictionaries for this, but sometimes people prefer to make up their own meanings. Other times, since language is always evolving, and since connotations vary depending upon group history and by region, there can be legitimate disagreement over the meanings of words. Some words seem especially vulnerable to being twisted or purposely corrupted.

Please choose any question or questions from this quiz for discussion in the comments section. I may very well choose to post your response and offer my own thoughts on the topic.

1. A and B are members of a self-advocacy community who disagree on several points. A posts a photo of a pig rolling in mud and caption’s it with B’s name. This is an example of:

a) free speech
b) bullying
c) It depends on the context

2. D leaves a comment on C’s blog saying that A is a liar. C elects not to post the comment. This is an example of:

a) censorship
b) freedom of association
c) discretion
d) insistence on verification of possibly damaging information

3. D now posts a comment to Z’s blog stating that B is psychotic and should be killed if she does not stop talking. Z allows the comment to stand. Z is guilty of:

a) nothing at all
b) aiding and abetting a death threat
c) supporting harassment
d) bullying
e) It depends on what country this happened in

4. E posts graphic comments about F’s body. When asked to retract the comment, E refuses. This could be considered:

a) all in good fun
b) a valid expression of male sexuality
c) sexual harassment
d) perfectly acceptable

5. L wants fellow blogger M to link to his blog. M refuses because he does not wish to be associated with some of the posts L has written. M is probably:

a) a spineless coward
b) censoring L
c) exercising free will
d) entitled to associate with whomever he wishes

6. A group of advocates writes a letter strongly disavowing the opinion of another individual who has suggested that anyone claiming to be autistic should be required to provide evidence of diagnosis. The group is practicing:

a) advocacy
b) bullying
c) free speech

7. Several members of a self-advocacy community have objected to a series of false accusations about one advocate and unwanted sexual comments directed toward another. Most of those who have denounced this behavior have been women. This is probably because:

a) they are all lesbians
b) they are delicate flowers, crybabies, can’t take the heat
c) they hate men
d) they are not really autistic
e) some men have not chosen to speak up against the bully

8. Which statement(s) represent(s) the values and ideals of neurodiversity:

a) People with Asperger syndrome are valuable to society and should not be thought of in the same way as those with “classic” autism.
b) Autistic people are not mentally ill, so they should not be subjected to institutionalization.
c) There are more autistic men than autistic women; therefore if an autistic advocacy group has more female than male members, men are being intentionally excluded and discriminated against.
d) People require different types and levels of support, but all are of equal value to society, regardless of diagnosis, and all are deserving of ethical treatment and human rights.
e) Presenting a united front is important to the cause; all autistic people should come to an agreement on what is best for autistics.

The company I keep

Like many other parents around the world, mine warned me that I would be judged by the company I kept. I paid this little mind, believing that what they meant was something more like Stay Away From Those Who Are Different. People somehow less worthy. It took many years to begin to understand the concept of the guilty bystander. How standing next to a bully while saying nothing made me a bully too. It’s a lesson I’ve had to learn over and over. Now I’m learning again.

For three years now, this blog has been connected to the Autism Hub. About half of my traffic comes through the Hub. I have discussed the Hub and the benefits of participation in several conference presentations. I have met good friends through the Hub. It has been important to me.

Here’s the problem. Lately, I’ve become aware that I don’t know what Autism Hub is. I have thought of it in various ways. I have sometimes thought of it as “community” and “mutual support” and “strength in numbers,” when in reality it is probably no more than a collection of links. I no longer know how blogs are added to the Hub. When I joined, I was simply approved by the administrator. Later, I had the opportunity to vote on new admissions. I haven’t had any of those requests for some time now. The email list for Hub members was discontinued a year ago. Several of the writers whose work originally attracted me to the Hub have left. At this point, I don’t see myself as a stakeholder, but as one of many names on a powerful page of links.

The Autism Hub is billed as “The Very Best in Autism Blogging.” This is a statement with which I agreed at one time, but I no longer find it to be true. Maybe it’s just my autistic black and white thinking, but to me this statement from the Hub’s main page means something different from what I have been seeing: "The Autism Hub promotes diversity and human rights, with ethics and reality as the core guiding principals." I think that diversity means more than whatever someone’s diagnostic papers may say. I believe that the term human rights includes freedom from harassment. Ethics is another big idea: “A theory or system of moral values” is one way to define it.

I no longer have any idea what values Autism Hub represents. This isn’t about censorship. I don’t want a list of links telling me what I can and cannot write, and I wouldn’t want that for anyone else. But membership in the Hub is voluntary. It must mean something. A group chooses to link to me, and I agree. In the beginning, I sought it out. I am a part of this thing. That is different from linking done without my own endorsement, which means something only about what the person linking believes, nothing about what I think of that person's or group's ideas.

This isn’t about politics. There are writers on the Hub who strongly disagree with my opinions on some important matters. Some of these people are my friends. They don’t call me names or make crude comments about me. We share at least one common goal, creating a better world for autistic people. I value these relationships I have with people whose values differ from mine. The people I consider my friends are not bullies.

For anyone who has missed it, one or more Autism Hub members have expressed their ethics and support of human rights by defaming, bullying and harassing other autistics. While others have left the Hub or stopped blogging altogether because of this and similar incidents, the offenders remain. The most recent incident has been especially egregious.

And where have I been? I have not written anything here for two months now. There are two main reasons for this. I have been struggling to keep up with my classes, job, and other responsibilities. There are times when I cannot do everything I need to do, and this has been the case for awhile. With summer approaching, I look forward to having more time to write. The second reason is related to conflict within the “community.” I have seen things that have caused me to question my allegiance to groups I have supported in the past; this has been a time of reflection and refocusing. Perhaps this latest instance of bullying on the Hub is the second bookend flanking these volumes of thought.

This is not the first time something like this has happened, and I should have taken a stand long ago. I hereby request that my blog be removed from Autism Hub. It’s not a good fit for me anymore. While I believe in and support freedom of speech for all, I do not wish to have my name associated with statements which intentionally harm people. Sure, maybe, probably, it is just a page of links. But I cannot in good conscience remain there, knowing that my choice to do so might be seen to support one sort of bigotry in the pursuit of ending another. There are enough people out there claiming that all autistic self-advocates are hypocrites. If such accusations make me more vigilant against such failings, so much the better.

To Kowalski, and to all others who have been victimized by similar behaviors in the past, I apologize for taking so long to say this. That was a sort of silence that wasn’t okay.

Readers: If you normally access this blog through Autism Hub, and would like to continue reading, please subscribe to the feed or bookmark me. It is my intention that there will be more things to read here in the near future.