Crescent Sun

Today, as everyone knows–even those who aren’t into astronomy–the United States was in the path of a total solar eclipse.

Where I am, in Ohio, wasn’t in the path of totality, and I didn’t have the wherewithal to travel into that region and see the eclipse properly. But even here, there was a partial solar eclipse to see.

There had been speculation that a cell phone camera in selfie mode might work, but my old phone camera’s resolution wasn’t good enough and the camera couldn’t handle the extreme contrast between the sun and the sky around it. I had tried to get to the library, hoping they might have some eclipse glasses, but I’ve been too busy trying to get a job to make it there. So, having no other solar viewers, I used my cell phone as a very dark mirror and looked at the reflection. Since the cell phone’s glass surface reflects only a very small percentage of the light that hits it, this worked nicely and I was able to see a partial solar eclipse for the first time since the 90s.

Being the practical sort, I also used the slightly cooler patch of midday to go to the store and buy some apples and nectarines. In the lobby of the store, several employees were looking out a heavily tinted window at the eclipse, glancing at it and away like I do when I have to look at something that’s too bright. They were handing around a pair of sunglasses which, when combined with the tinted window, made the sun bearable to look at. I stood with them and talked for a few moments. Nobody thought I was weird for caring about an eclipse. There were astronomy terms being thrown around casually. Nobody asked about names or made eye contact.

Little moments like that make me wonder whether neurotypicals are really so different from us. They were standing around, talking about science, sharing tips to make sensory input less painful. On any other day, only autistics would have done that. Today, I guess we were all a little autistic.

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“You’re a wizard, Harry.”

My you’re-a-wizard moment:

“Lisa, I really think you should be evaluated for autism.”

The speaker was a psychiatric nurse-practitioner with a grown-up autistic son, and she recognized the same traits in me. I was about twenty-three years old.

I grew up with a mother who worked as an occupational therapist, sometimes with autistic children, and she didn’t want me “labeled”. She thought that because I was smart, I couldn’t be autistic. When I screamed because of a scratchy sweater, or drew hundreds and hundreds of identical trees, or lost it because my schedule changed and no one told me, I was told that I was a bad, rebellious, strong-willed child who needed to learn to obey. When I needed to wrap myself in bandages to feel the pressure, or practiced piano for hours on end, or got fascinated with astrophysics at the age of twelve, she didn’t seem to notice how unusual that was. When I had no friends, she took no notice. When schools started asking for me to be evaluated, she changed schools and eventually home-schooled me entirely. The worst parts of my childhood come from the men she married or lived with—men whose idea of parenting was using a child as an outlet for their anger. She thought that they would teach me discipline and teach me to obey.

Eventually, I escaped home, graduating high school at sixteen and starting college soon after my seventeenth birthday. The college I went to, Pensacola Christian College, was a college in name only; it was unaccredited, cult-like, and barely Christian however much it insisted that it was more Christian than anyplace else. It was a totalitarian environment that regulated my every move and somewhat compensated for the fact that I could not yet take care of myself. At the same time, my roommates noticed that I did not take showers very often and behaved in unusual ways.

At eighteen, I left and transferred to another college, Cedarville University. This was a real college, and actually Christian. It was at that point that I started to have problems. At Cedarville, we were expected to take care of ourselves—schedule our own days, get ourselves to class, keep ourselves clean and fed. This would have been easy for a typical young adult to do, but for me, it was not yet within my skill set. I tried harder and harder to take care of myself, and failed more and more often. My grades dropped from perfect to near-failing. I started to resort to self-injury to keep myself in a sort of emergency state. But eventually I just burned out. I was hospitalized for severe depression. Cedarville University expelled me for “being a danger to self or others”. With help from a social worker, I rented a room, but when I was hospitalized again, my landlord evicted me, and I had to sleep on a friend’s couch for a summer (I had, by that point, learned how to communicate enough to make friends, if my friends initiated most of the social contact).

The psychiatric nurse-practitioner who finally told me I was autistic didn’t surprise me all that much. I knew what autism was; I had studied it and noticed how much the traits matched what I knew about myself. I had mentioned it to my mother, and she had said in an off-hand sort of way that I would have been diagnosed with it if she hadn’t insisted that I not be labeled and taken me out of school. But it answered a lot of questions for me.

Suddenly, I knew why my sensory system jangled from things that everyone else seemed to ignore. I knew why I was completely unaware of social drama. I knew why it was so natural for me to fidget, rock, fiddle with small objects, flap my hands, and make up words. I knew why I focused in on details, why my obsessions were so strong that I forgot about anything else.

Learning that I was autistic changed my life. On life’s journey, everyone else had been issued a car to drive—some faster than others, but all working on the same basic principle. I’d been given a speedboat, and I’d been trying to make it move along the highway where everyone else’s vehicles were. I hadn’t been making much progress, and I’d been damaging my boat. Learning I was autistic was like being told, “You aren’t meant to be on the highway at all. This boat is meant for the water.”

I was evaluated, and several professionals agreed I had autism. I had neuropsych testing that showed some serious weaknesses amidst my seeming “high intelligence”. I had career evaluations that showed I had aptitudes for science, writing, and detail-oriented, organized work in general. I re-enrolled in college at Wright State University, which has a good disability services department and gave me the intensive assistance I needed to succeed as a student. I switched to a psychology major, because I loved learning about the human brain, and graduated with a respectable 3.5 GPA.

Now I’m looking for work—work I can do, that fits my skill set and aptitudes. I’m autistic and I’ll always be autistic, and I’ll always be different; I’ll always be disabled. In a world full of highways and not too many rivers, there are places I just can’t get to. But in the end, if I get the sort of job I want—research assistant in a neuropsychology lab—I’ll be able to contribute my skills and abilities to my community, the way I was meant to do it. I am autistic and I was meant to do things in an autistic way; working against that for years only gave me grief. Working with it is really starting to bring me joy.

Cole Hartman

Reposted from Autism Memorial, because I think it’s important.

Name: Cole Hartman.
Died: August 4, 2013.
Age at death: 8.
Cause of death: Removed from ventilator, given Fentanyl overdose.
Location: Los Angeles, California, USA.

Details:
Cole had Fragile X and autism.

His father found him head-first under water in the washing machine and called paramedics. He had stopped breathing, but they were able to revive him and put him on life support at the hospital, where he remained alive but in a coma and on a ventilator.

Although Cole was not brain-dead, doctors encouraged Cole’s parents to remove life support so that Cole’s organs could be transplanted. In a situation like this, organs cannot be transplanted until the patient’s heart has stopped, so the doctors hoped Cole’s heart would stop quickly so that his organs would not degrade. His parents agreed to terminate life support, and the ventilator was withdrawn.

But Cole kept breathing. The anesthesiologist, seeing this, gave him an overdose of Fentanyl, a strong opioid which can stop breathing even in healthy people when given in high doses. After this overdose, Cole stopped breathing and died.

A coroner’s investigator specializing in child deaths made sure that Fentanyl was listed as a contributing cause of death on Cole’s death certificate.

Editor’s note: We would like to stress the differences between Cole’s death and that of the vast majority of organ donors in the United States. A brain-dead organ donor has no living brain tissue; there is truly no hope for recovery when the brain is dead.

But Cole was not dead. He had sustained a brain injury, but his brain was still working. He had spent only four days in a coma before doctors wrote him off as a lost cause, probably influenced by his Fragile X. It is impossible to tell in only four days how much function someone with a hypoxic brain injury, especially a child, will recover in the long term; yet doctors insisted, as though they could know, that Cole would never wake up.

Had Cole survived, he might have been severely disabled; but he was never even given that chance. As a child with a disability to begin with, doctors seem to have seen him as not worth trying to save.

That Cole’s kidneys and liver were transplanted has become a focus of the investigation. However, it is important to remember that it is not organ donation which causes these deaths; it is the belief that doctors who treat critically ill disabled people are “wasting their effort” because we are “not worth saving”. Most critically ill disabled people who are denied treatment in this fashion are not candidates for organ donation. The doctors who decide to terminate life support are not given credit for any lives saved with the deceased person’s organ, nor are transplant teams typically affiliated with the hospital where the donor dies. The specter of killing the disabled for their organs has not become reality in America. However, denying medical treatment to those who could survive, because they have a disability, is a daily reality.

Organ donation saves lives. This editor urges everyone to sign an organ donor card, but also to have a serious talk with loved ones, urging them to advocate for you if you are ever incapacitated, and not to allow themselves to be convinced, as Cole’s parents were, that your life will not be worth living. If you are still afraid that an unscrupulous doctor might kill you for your organs and do not want to sign an organ donor card, I recommend arranging for body donation for medical student education or research as an alternative. We all die, and it’s sad that we do; but at least we can do some good on our way out. Rest in peace, Cole; you deserved better.

References:
An 8-year-old was taken off life support, his organs donated. Now, police are investigating
Los Angeles County coroner’s findings in Cole Hartman death
Use of drug probed in Los Angeles organ donor’s death
Police Investigate Death of 8-Year-Old Boy Whose Organs Were Donated at UCLA Medical Center
Police investigate claims dying boy was purposely given an overdose

Job Search

It’s been almost a year since I graduated with a BS in psychology from Wright State University. It was a long road, but in the end, I made it, mostly thanks to the WSU disability services department and the intensive support they offered me. I don’t think any other school could have done it. To be honest, I don’t think that WSU disability services would have thought they could do it, either, if they’d known ahead of time what it would take. I was always getting the rules bent for me, special arrangements made, people calling in favors and drawing on their connections for my sake. Somehow, people kept seeing me as somebody who could excel in school. In the end, I did, though not nearly as well as I hoped I would. I never got that biomedical engineering degree I wanted to complete, and I only had a 3.5 GPA. But I graduated. I learned a lot. I had some experiences, especially during my lab internships, that are irreplaceable.

The past year has been difficult. Within a month, I missed going to classes. I had to do something with my life; so I doubled down on my work for the autism memorial and for ASAN’s disability day of mourning web site. I don’t know whether I’m imagining it, but lately there have been more and more homicides of disabled people. I’m falling behind–there are dozens of names waiting to be researched.

This year has also been taken up by searching for a job. As a disabled person, I’m eligible for “Opportunities for Ohioans with Disabilities” (formerly Rehabilitation Services Commission, formerly Bureau of Vocational Rehabilitation), which seems to love paperwork nearly as much as it loves changing its name but nevertheless offers some decent job-search assistance.

The trouble is that the jobs I’m looking for are so very specific. My sensory system is easily overwhelmed, so I can’t do a job that involves noise, bright lights, smells, or chaos of any sort. I need an extremely orderly work environment. I can’t drive, so my options are limited to within two miles of my apartment, or on the one bus route I’ve learned how to use. I have a psychology degree, and I want to do research; but for that, I need a master’s or doctorate. I need reliable hours. If I work more than part-time for low wages, I end up losing Medicaid, so I need a job that will offer health care regardless of my multiple pre-existing conditions.

It’s been a year now, and hundreds of job applications later, I still don’t have a job. With help from M., who comes in every week to help me fill out applications and search for more possibilities, I’ve managed a couple of interviews. M. is getting frustrated, and so am I. He says that my main problem is anxiety, that I’m so afraid of failure that I slack off and don’t try to get a job. I respond that this is not an irrational fear; I’ve had a dozen jobs in the past, and always failed at them despite doing my best. Often times, I burned out and ended up sliding straight into depression. So with that much failure under my belt, is it really so surprising that I’d be afraid it’ll happen again? M. suggests a job that involves working full-time as a receptionist, and I point out that I don’t think I can sustain that kind of social interaction for eight hours a day. Or he suggests a job that’s a ninety-minute bus ride away, and I point out that the last time I tried that I ended up thumping my head against the window and wishing I could jump out onto the highway.

M. also has this really annoying habit of telling me “not to label myself”, that he doesn’t believe in labels, and that he sees me and says, “If you hadn’t told me, I’d have no idea you had autism.” I know he means well, but I wish he would stop acting like “you don’t look autistic” is a compliment! It’s not. Autism is a part of my identity. It’s a fact. I don’t feel flattered if you tell me I don’t look autistic; I feel like you’re trying to erase or dismiss a part of me.

That “natural”, NT-style interaction you see? That’s not instinct; that’s years of hard work. I’ve worked my butt off to learn to communicate neurotypical-style during job interviews, and M. acts like that’s something I can just manage anytime I like, without much effort. I am autistic. I am properly autistic, properly disabled, and I am not exaggerating. It’s not just some little quirk that can be ignored because I’m “so smart”. I need a job that fits me, or I am going to fail again, just like I did the first dozen or so jobs I tried.

Other than that, M. is actually a decent caseworker. We’ve found a lot of jobs that might fit me; it’s just that everybody wants experience, which I haven’t got. Lately, my top pick has been pharmacy technician, something that appeals to my detail-oriented nature and desire for order. I’ve also been looking into tutoring jobs. I’ve been applying for every laboratory technician job I can find, of course.

And writing….Yeah, there’s writing. The trouble with writing is that I have no formal experience, despite being quite good at it. I recently got Top Writer on Quora, which is an endorsement I didn’t expect until I got it and someone told me it meant being one of the best few hundred among millions of contributors. But how do you put that on a resume? You can’t say, “People on the Internet like my writing.” Nobody thinks that’s significant. They still don’t understand that the Internet is part of the real world.

In other news, I recently finished Neurotribes, which is a history of autism and includes the history of the neurodiversity movement. It’s odd to read about the history of things I lived through. I wasn’t in on the foundation of neurodiversity–I’m no Jim Sinclair or Mel Baggs–but I’m definitely in the second generation, the people who were first to join the neurodiversity movement when Wrong Planet was still a niche web site and the Ransom Notes campaign was pissing us all off. I’m starting to see, more and more, the things I and others were talking about years ago becoming part of autism culture and leaking out into the mainstream. There’s even a fidget-spinner fad. Who’d have thought it?

It seems the autism rights movement is really coming into its own. I feel like we’re at that stage where the Deaf community was when they signed, “Deaf President Now!” at Gallaudet. I just hope we can survive the coming four years, leaving nobody behind, without losing our pride and sense of community.

Do people with Asperger’s take things literally?

Q: Does everyone with Asperger’s take things literally? Because I don’t. Well, I think I don’t.

A:

I think you just did, actually.

Asperger’s does give you a tendency to take things literally, but you wouldn’t typically expect to see someone respond to a phrase like “One bird in the hand is worth two in the bush” with a comment about the value of poultry—not unless they had a particularly big problem with metaphors, or unless you were talking to a child.

The more typical “taking things literally” has to do with focusing on the denotative meaning of what has been said and ignoring the connotative meaning.

In this case, the statement you were evaluating was probably this:

People with Asperger’s take things literally.

The denotative meaning is this: If a person has Asperger’s, they take things literally. You responded to this by protesting that you do not, in fact, take things literally every single time; therefore, because there is an exception to the rule, the statement is false.

The connotative meaning is this: Asperger’s and taking things literally tend to be associated with each other. There may be exceptions and technicalities, but it’s a general tendency.

Notice the logical, concrete, absolute way the denotative sentence is phrased. This is the way people with Asperger’s (and autism in general) tend to think; we like to stay away from ambiguity when we talk, and we don’t perceive ambiguity in the things we read or hear. Any given statement has only one meaning—or at least, we wish it did.

Most of us think that way, because most of us have this cognitive autistic trait that predisposes us to concrete, logical, and black-and-white thinking. Some of us don’t, because there are exceptions to the rules. You may or may not be such an exception.

(By the way: In that last paragraph, I’m displaying the same sort of literal thinking, the need to define everything precisely, by being specific about the fact that not all autistic people have that particular autistic trait.)

This can make us good at logical thinking; it can make us good at math and science because we are naturals at picking apart the implications of a hypothesis and stating things very precisely, which is necessary to solve both math and science problems.

On the other hand, it can make us annoying because we are always noticing the exceptions and technicalities in a situation (“Saying ‘the sun, moon, and stars’ is redundant. The sun is a star, too. So you should say ‘the moon and stars’.”) It can be a problem when someone promises us something and we expect them to follow through on it, or says something will happen and then we are disappointed when they change their minds, because the original statement was vague and we took it to be concrete (“We should go out for coffee sometime” results in an unwanted invitation; “If you keep doing good work like this you’ll get a promotion for sure” results in disappointment that they were not promoted as promised.)

I think you may “take things literally”, just not in the extreme fashion you may see in young autistics who haven’t had the chance to practice with language much. It’s a more subtle thing in those who are fluent language-users; for the most part, we no longer expect animals to be falling from the sky when someone says it’s “raining cats and dogs”—sure, the mental image comes up, but with experience we learned long ago not to fall for the obvious metaphors. The less-obvious ones, maybe not so much.

From Quora.

Q&A: Dolphin Therapy

Q: Can dolphin therapy be used to treat autism?

A: Dolphin therapy? Ehh. It’s okay, I guess.

There’s no really persuasive evidence for it, but it’s one of those therapies that generally won’t harm the child. Interacting with animals is usually pretty enjoyable, and some autistic people do find it easier to communicate with animals than with other humans. Many autistic people love water, as well.

Of course, some autistics hate water and some autistics wouldn’t enjoy interacting with dolphins. Everybody is different.

Dolphin therapy, like other animal-based therapies (horses, cats, and dogs are popular), can be used to help keep up the morale of an autistic person who’s having problems with anxiety or depression. It can be a source of safe, low-pressure social interaction. Some autistic people just feel better when they’re in contact with an animal. Interacting with animals can lower one’s stress level and make learning easier. That’s not because animals are magical or anything like that—it’s just that having contact with another living creature helps with anxiety and gives you a little more brain space to learn with. Most of the time, autistic people who have a strong response to animals will have an assistance dog.

Dolphin therapy is not useless, and it usually does no harm. Even a typical child would probably enjoy it and benefit from it. The question you have to ask yourself when you go into these expensive therapies is: “Is this the best use of my money? Could my child benefit more from something else?” There are many things that will make an autistic child’s life better, and dolphin therapy is one of many options. Personally, as a child, I would have preferred a cat to a dolphin; I’ve always loved cats and enjoyed interacting with them. And if I couldn’t have an animal, I would have loved to have more books to read.

Q&A: Half-Autistic Brains

Q: Could you have a brain that is only half autistic–like an autistic right side, and a neurotypical left side?

A: Autism is a syndrome—a collection of traits that come together, but without a known cause, or perhaps with multiple causes. As best as I can tell, it’s an emergent property of the whole brain, rather than something like Parkinson’s where you can look at the microphotographs and say, “Ah, here’s how this happened.”

What I mean by “emergent”:

Screenshot_1.jpg

Here’s a close-up shot of a painting. You can’t see what the whole picture is, because there’s not enough information in this bit of painting to tell. In fact, this bit of painting could be part of anything. A boat on the ocean? A mushroom in the forest? You can’t tell. You need more information.

hb_51.112.6.jpg

Here’s the entire painting. It’s done in an art style called pointillism; on a small scale, pointillism is just dots of color, all mixed up together. It’s only when you look at the whole thing that you can understand the image.

Autism is like that. Autism is what happens to a whole brain; autism is the whole picture that comes out of all those little neuronal dots. Even if only half of the brain is different from neurotypical, if the behavioral result is the syndrome we call “autism”, then the whole brain is considered autistic.