Neurodiversity and Operating Systems

Admit it, you want this bad ass mofo kicking alien butt in your game, too.
Admit it; you want this bad ass mofo kicking alien butt in your game, too.

Steve Silberman said in his book Neurotribes, “just because a computer is not running Windows doesn’t mean that it’s broken.” I’ve seen the comparison before, but I can’t remember where. According to the analogy, neurotypical people run Windows. Some artsy types run iOs. But autistics? We run Linux. It’s just as good as the other two, but fewer people use it, and therefore, it’s less commonly accepted.

I’ll take it a step further: autistic people, when trying to appear neurotypical, are running WINE. For those who don’t know, WINE is a Linux program that allows you to run Windows programs. However, there is a cost. You require more memory and processing power to run a program in WINE than you would if you ran a regular Linux program, or, if you ran that Windows program in the Windows operating system.

Oftentimes, I am that computer trying to run Windows programs in WINE. For the most part, the programs work, but they might be a bit slower. Sometimes, if I try to run too many Windows programs at once, I might crash, and need time to recover. Usually, I can feel this coming on, and try to retreat to solitude in order to reboot.

I’ve been thinking of this a lot lately, while trying to play XCOM2 on my desktop computer. While it doesn’t run WINE, the Steam game loading program acts in a similar manner in that it pretends to be a Windows machine in order to play some games. I noticed that I was having trouble loading one of the most fun functions of the game, the character pool. I’ve had a couple of friends create badass versions of me that I’d like to have running around in my game.

After fiddling around with files for hours, I gave in and installed Windows outright.

I’ve often wished, and tried, to do the same to my own brain. To train myself to forget about being Linux-y and install Windows, so I could run it all the time, and have access to all the cool stuff the rest of the world has.If only it were so easy. It turned out not to be that easy for my computer, either. After a couple of days, the display blanked out, and nothing, short of reinstalling Linux, seemed to work.

(Yes, I know the analogy is flawed; Windows is not WINE, and in most cases you can have a machine dual boot with both operating systems. On my machine, each OS failed to recognize the other OS, and I had to format in order to install them. However, that would mean splitting your hard drive into different partitions, so… )

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Autism and the Measles Vaccine Debate

Really, there is no debate. As Neil deGrasse Tyson said, “The good thing about science is that it’s true whether or not you believe in it.” My opinion, which is based in decades of scientific research by people way more qualified than I am, is that unless you have a compromised immune system, have an allergy to a vaccine’s ingredients, or have some other contraindication based on actual medical science, you should get your ass vaccinated. On time.

I know this is an unpopular opinion in some circles; I’ve lost friends over my resoluteness in this matter. When people cite Andrew Wakefield, my response has always been this:

“Even if vaccines did cause autism, I’d rather my kid be autistic than dead.”

My recent discovery of a decades-old autism diagnosis does not change my mind one bit. And it looks like I’m in good company. Sarah at The Archipelago wrote about the very topic of autism vs. measles. She took the words right out of my brain. I wouldn’t be surprised I’ve said exactly the following at some point:

Vaccines don’t cause autism. But even if they did, is being like me really a fate worse than death?

Please read it, no matter which side you’re on.

Link: The Archipelago – I’m Autistic, and Believe Me, It’s a Lot Better than Measles.

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Unpacking The Diagnostic TARDIS

TARDIS door sign
TARDIS door sign – h/t doctorwho.answers.wikia.com

Moving house is like stepping into a TARDIS. As you find all the stuff that’s been crammed into your rooms, you start thinking that your house might very well be bigger on the outside. Also, finding papers and mementos from times long gone feels like stepping into a time machine.

*Whoosh*

In 2014, I started seriously wondering if I might be autistic. The thought had occurred to me before, but I thought that:

  1. Autism can’t be accurately diagnosed after a certain age.
  2. If I were autistic, surely the multitude of therapists/psychiatrists/neurologists/psychologists/social workers would have picked up on it sometime in my childhood.
  3. Trying to use autism as an excuse for why I fail at life is deeply insulting to bona fide autistic people.

But what about that special nursery school I went to when I was a kid? I went back there last year, and there were definitely kids on the spectrum there.

I decided to ask my mother if the nursery had given me a diagnosis back then. My mother said that she was told I had “autistic traits.” She mentioned that, while packing things up for the move, she came across some of my evaluations from that time.

I found the box in the garage.

*Whoosh*

Sometime in 1983, as pre-school after pre-school told my parents that I wasn’t following orders like the other kids, it became obvious that I wasn’t fitting in. It was at that point that my mother started taking me to all sorts of professionals – psychologists, neurologists, psychiatrists, to figure out what was “wrong” with me. Diagnoses and ideas for treatment were bandied about. ADHD. Aphasia. Semantic-pragmatic disorder. (In order: hyperactivity, not speaking, early 1980’s codeword for autism.)

Due to my mother’s professional connections as a neurology nurse, I was able to attend a therapeutic nursery school, which, unbeknownst to any of us, specialized in autistic, and very bright children. Whatever they did seemed to work, because a year later, my speech was advanced for my age. That’s pretty much all I had ever been told.

*Whoosh*

I sent an email to one of the neurologists who evaluated me in 1983. She was also affiliated with the nursery, and the hospital where my mother worked. I asked her if she remembered me, and what, in today’s terms, my diagnosis would be. Autism? Asperger Syndrome? Something else entirely?

I recall you were one of those children who have autism features when young who “recover” and do very well, although they may still have mild social or other behavioral issues….Indeed today you might have been labeled Asperger syndrome or high functioning autism, labels that no longer exist in the [DSM-V]

At the neurologist’s suggestion, I posed the same question to the director of the nursery.

We felt at the time that you were on the autistic spectrum. You would not have been diagnosed with Asperger’s because you had a delay in your aquisition of language and that didn’t fit the diagnostic criteria….What made us feel that you were on the spectrum was not your language delay – that alone would have been considered a communication disorder.  It was the way you used the language that you had socially…. Also you didn’t naturally pick up on how to engage and socialize with other with others – particularly with other children.  This also involved picking up social cues and developing social reciprocity.  Kids who are not on the spectrum, even if they are language impaired, pick up these social skills without needing to be taught directly.

All this leads me to wonder: why didn’t my parents know all of this?

*Whoosh*

In 1985, we moved from Brooklyn to a bedroom town within an hour of New York City. This meant I had to go to a new school. Because my original school wasn’t accredited (something I didn’t learn until recently), I had to repeat first grade. I already felt different because I was in suburbia, but now I was left back! To make things worse, they were going over stuff I already knew! Sure, I didn’t know how to tie my shoelaces, but I knew how to tell time on an analog clock, I could count up to 99 using my hands, I could read and write and do all the math that the other kids were just learning. In fact, there were things in second grade that I’d already learned in Brooklyn. On top of that, we were the only Black family in our neighborhood. There were other Black kids in our school, but they were bused in from the other side of town. And they thought that I spoke funny. My parents assured me it was because the other Black kids were American, while I had Jamaican and Nigerian parents.

*Whoosh*

Back to the director of the nursery:

You did a lot of “scripting”  or repeating short chunks of language that you heard from people, from TV. from books, etc. …You also had “prosody” which was not typical.  That is, the “melody” of language.  This is difficult to describe unless I imitate it for you.  It’s a kind of sing-song quality, which by the way, you don’t have any more.

Could it be that kids thought I spoke funny because… I actually did speak funny? I learned to speak by repeating what I heard on TV, the radio, and other people. I often didn’t fully know the meaning of what I was saying. But hey, Mom and Dad know best, right? Since I was the only one that didn’t fit in, and I was the only one who was half-Jamaican, half-Nigerian, and all Brooklyn, surely those must have been the reasons why I was so different.

Director again:

You also had a lot of anxiety and had difficulty regulating this.  Some of this was due to the difficult home situation, mainly involving your dad.  I remember being told by your mom that when your father would beat your brother, you would wait outside to give him a tissue, in an effort to make him feel better.  This kind of stress would be difficult for any child, whether or not he or she were on the spectrum.

So, while being neurologically different from my peers, this was happening. As I got older, I started getting beatings as well. Notice that I say beatings, not spankings. I got spanked as well, if, for example, I stole my father’s coins to buy candy at the stationery store. But I’m talking about whipping out (pardon the pun) a belt, or a piece of baseboard molding and hitting wherever my father could reach. I’m talking about riding in the car with him and suddenly getting popped in the mouth for not answering a math question correctly, or quickly enough. Or forgetting my homework. Or forgetting many a thing. I remember my father standing over me as I practiced playing a song on the organ, and him hitting me if he thought I was getting sloppy, making too many mistakes. Never mind that we’d been sitting there for hours on end. Or if my handwriting wasn’t perfect. A letter might be too large, or it might have gone below the line on the paper. I’ve ruined composition books because the force of his hit caused my pen to cut through multiple pages. Of course, that was reason for the beatings to continue.

And if I didn’t like something, and dared to complain, or show anything other than blankness? The beatings would continue until my morale appeared to improve.

At this point you might be wondering, “why didn’t you ask for help?” I did, many a time. I cried for help so many times, that I learned not to bother anymore, because nobody would listen. When it came to the word of a child with known behavior problems versus a respectable-looking professional upper middle-class gentleman, well, I wasn’t believed. At one point, the police threatened to arrest me if I called them one more time. Sometimes, I regret not making the call, not begging them to put me in jail. My father would threaten to have me put in a mental institution. After a while, I asked him to please put me there, as I couldn’t imagine being in a worse situation. He told me that I’d end up in a foster home and get sexually abused, and at least he didn’t drink, use drugs, or sexually abuse me.

No, he didn’t. That would have left physical evidence. My father was many things, but he wasn’t stupid. He was also very careful to make sure he didn’t leave any lasting marks, though I had many a busted lip when I wore braces. Except for the time he knifed me in the back, because I accidentally cut the leather of the organ bench. I still have that scar, but by the time I realized that what he did was so incredibly twisted, it was too late to do anything about it. CPS asked me questions and took pictures of it, but nothing ever came of it. My father probably explained that away as well. Emotionally disturbed child and all.

But the point is, I never got a break. I took abuse from my peers in school, and abuse from my father when I got home. My mother worked at nights, so she didn’t know the half of it. Her days off were spent either sleeping, or arguing with my father. My brother got the hell out of Dodge once he went off to college. Dad tried his hand at manipulating him from afar, even going so far as to make sure my brother had no money for textbooks. After that, my brother couldn’t take it anymore, and kept his distance for a few years. My father tried to convince us that my brother didn’t come back home because he’d joined a cult.

Eventually, my emotional disturbances landed me in therapy. None of the therapists or evaluators seemed to suspect autism. At least, not that they told me. Instead, they all tried to patiently explain that, due to the cultural and generation gap between me and my parents, I had to learn how to deal with the hand I’d been given. My parents even got family friends to evaluate me, and… nothing. I spoke to one, a school psychologist, recently, and he said that I showed signs of depression and hyperactivity, but would have been extremely reluctant to label me autistic, because he didn’t think labels were really that useful.

I’ve notice that a lot. Professionals seem to want to decide for me whether or not I’d find a label useful.

During college, I had a full evaluation done, because I suspected I had ADD (ADHD, if you will). The psychologist said that I didn’t have ADD, I just  needed to be motivated. She said my IQ was “above average,” but she wouldn’t tell me the score, because she didn’t want me bragging about it. At the time, I was flunking out of college and suicidal. In my mind, I had absolutely nothing to brag about.

*Whoosh*

Last week. I’d looked up local therapists who claimed to specialize in autism, and went for an initial visit. I told the therapist a bit about my childhood, and how I’d felt ostracized and isolated. Her first reaction was that “African-Americans tend to keep to themselves.”

I then had to explain that my parents were immigrants, and that both Jamaicans and Nigerians generally value community and familial bonds.

Once again, a therapist had tried to explain away my difficulties with the color of my skin.

I hear that both women and people of color are underrepresented in the autistic community. I have to wonder how much of this is due to professionals making assumptions about race and gender, and what we can do about it.

At least I’ve figured out the first step: to make sure people know we exist.

Hi, I’m Dee. I’m Black. I’m a woman. I’m the child of immigrants. I’m a mother. I’m autistic. And I know there are more people like me somewhere.

Try not to be afraid; you’re probably not as alone as you think you are. We’ve just learned to be quiet and submissive, or we’ve just been talked or shouted over. It’s okay to shout back.

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The Cycle Continues – Adventures in Early Intervention

Baby A
Baby A, at his first birthday party

My son, we’ll call him A, is sixteen months old, yet he doesn’t speak any words. He babbles, and sometimes says things that are almost words, but they’re not quite real English-language words. Otherwise, he’s a big, happy, and healthy baby.

I’ve been worried for a few months now about A’s lack of words. My mother kept saying, “at least he’s trying to talk; you didn’t do that when you were his age.” Sure, but I also didn’t talk until age four. I wanted A evaluated, just to make sure. I’m living proof of the benefits of early treatment (I don’t say Early Intervention, because interventions for kids under age 3 didn’t exist in my day). I decided, however, to wait until A’s next well-baby checkup.

That was on September 10. The doctor confirmed my thoughts: A’s height’s in the 92nd percentile, his weight in the upper 80’s. He’s very healthy, and on-target with physical milestones. However, the doctor also agreed with me that he should be saying more words at this point. She referred him for a hearing evaluation, to make sure he has no hearing problems, and for Early Intervention.

I was a bit conflicted. Part of me was glad that my instincts were correct. However, part was also sad that my beautiful, happy, adorable son has a delay. What will this mean for A’s future? Will he have as much trouble as I did in terms of communicating, making friends, managing emotions? Worst of all, will the service providers think it’s all my fault? 

I scheduled the hearing evaluation; it’s taking place next month. However, we’re all pretty sure that A can hear okay. He responds to his name (when he feels like it), and goes crazy when he hears me shake his can of puffs.

The Early Intervention place was slightly more complex. The lady who answered the phone was nice enough, and started collecting information. All was well until I told her what town we live in. “Oh, we don’t service [Our Town]; you have to call [Town 25 minutes away].” She then gave me their number. By that time, it was 3:58, and their recording stated that they close at 4:00pm. I left a voicemail.

8:59am the next morning, the Early Intervention office for my town returned my call. They took down the basic demographic information, such as: Name, child’s DOB, pediatrician’s contact info, insurance info, address, ethnicity, father’s highest level of education (but not mine, for some reason), who lives in the home, who will be present at the evaluation. The evaluation was scheduled for the following Thursday (i.e., the day I’m writing this blog).

I started worrying some more: They’re coming to the house. It’s a mess! Is it completely child-proof? What if they find something wrong and call Child Protective Services (CPS)? What if CPS then considers me an unfit parent due to my diagnoses? Will my husband and mother be considered sufficient mitigants, or will they take my son from us? Will they place him with his aunt and uncle? Will he grow up to resent me? My anxiety only got worse after I received a packet in the mail explaining the process, privacy policy, and other stuff.

On Monday, I received a call from Early Intervention. Apparently, I needed to sign the consent form before the day of the evaluation, so we scheduled a meeting for the following afternoon. I believe her title was Developmental Specialist. The first thing she mentioned is that we live so close to the first Early Intervention office I’d called (it’s within walking distance, but is technically in another county). She said that if A qualified for services, it might be worth looking into whether he could go to groups at the closer office, though it’s usually not done. She explained the Early Intervention process a bit, gathered more detailed information (e.g., where my son was born, birth weight, length of pregnancy, reiterating why I suspected he’d need services). She left me with a folder full of papers describing most of what she’d just explained.

On the day of the eval, I cleaned like a madwoman. Well, “dash and stash” is probably more like it. I cleaned up most of the clutter in the playroom to make room for all three evaluators (the fourth couldn’t make it). They administered the Batelle Developmental Inventory, a standardized test which consists of seeing what tasks A could do, such as grabbing objects, standing up from a supine position, waving bye-bye. For some of it, they were able to go by our reports (e.g., his favorite activities). After about an hour, A started getting tired and cranky, so we took him to bed for his nap. The evaluators then started tallying up his scores.

As suspected, A has delays in communication; everything else was within normal ranges. He therefore qualifies for Early Intervention services. I was actually a bit relieved, because I was partially worried that he might be delayed, but not delayed enough for services. Then what would we do? We’d have to pay for any services out-of-pocket. However, since he qualifies for Early Intervention, whatever our insurance doesn’t pay will be paid by the state Department of Health.

They asked if we had any goals for the initial Individual Family Service Plan (IFSP). I said I wanted A to say more words to better communicate his needs. I think the evaluators were a bit surprised by the response. They don’t know that I used to be a service coordinator (for a different population) in my past life.

In a few weeks, we’ll be assigned a Service Coordinator, who will work with us to come up with more goals and details for the IFSP, and to match us with service providers.

It’s going to be an interesting journey, but it will be well worth it once A can start saying stuff!

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Call for Writing and/or Donations for Autism & Race Anthology

Autism Women's Network
Autism Women’s Network Logo

The Autism Women’s Network is producing an anthology of works by autistic women of color. This is a very underrepresented group. If you are an autistic woman of color, please consider submitting your work. No matter who you are, please consider donating toward publishing costs. The project wants to publish with as many accessible formats as possible, without delay.

For more details, please visit the project’s website.

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