Wednesday, December 7, 2016

Autistic Inertia: An Overview



Sparrow R. Jones
unstrangemind.com

Image description: a photo of the Mason Dixon line from
about 20 miles away, taken by Sparrow Rose Jones at
the Maryland/Pennsylvania border near
Clear Spring, Maryland on October 4, 2016
I was talking with my boyfriend yesterday about autistic inertia. I was describing how it affects me and bemoaning the fact that it’s so clearly a real thing that exists but I never see researchers or educators talking about it -- just us Autistics. We know it exists, we know it’s a real thing, but it’s not in the official literature and no one is researching it.

After I described it a bit, my boyfriend remarked upon how similar it sounds to what people with Parkinson’s experience. Upon reflection, that didn’t surprise me too much since Parkinson’s is linked to dopamine and I’ve read autism research that talks about irregularities in dopamine and seratonin in the autistic brain. He did a little searching and found a study using Parkinson’s medications on autistic people that reported little improvement. But he also remarked that if the researchers weren’t specifically looking for improvement in autistic inertia, they may have missed some of the effects of the medication.

I promised my boyfriend that I would send him some links to things fellow Autistics have written about autistic inertia. At the same time, I realized it’s been a while since I updated my blog and so I thought I would just share the information here in case it’s helpful to more people than just myself and my amazing boyfriend who is always so willing to go out of his way to understand me better.

The first thing I ever read about autistic inertia was Anna Sullivan’s handout from her presentation at Autreat 2002: Inertia: From Theory to Praxis. Sullivan talks about the different manifestations of inertia and her descriptions make it clear that inertia is not one single thing. From what I can see, there are elements of executive dysfunction, of low energy/hypotonia, and of being out of touch with one’s body and emotions. And this is just the beginning, from what I can tell. One thing Sullivan doesn’t mention, though, is the idea that inertia is a difficulty in “changing gears.” You will see the professionals talking about “gear changing” issues sometimes and that’s a part of inertia, although not all of it.

Also, Sullivan doesn’t mention that inertia in autistics is not dissimilar to Newton’s inertia, in that not only do we have difficulty starting things if we’re stopped but we also have difficulty in stopping things if we’re started. As I told my boyfriend yesterday, when I start researching for a paper, I have a hard time stopping the research and starting the writing. So I will end up with enough research material for seven papers before I ever manage to make myself stop researching and start organizing my material and writing it out. It does mean that my papers tend to be really good since I know far more than I end up putting in writing. But it also means that it doesn’t matter how early I manage to start working on a paper, I will always be scrambling to finish it at the last minute.

Something very important that Sullivan points out is the unevenness of skill sets in autistics. That is, an autistic person might be able to do something easily one day but run up against severe inertia with the same task on another day. Autism isn’t something constant and steady-state but rather something variable, more like multiple sclerosis, fibromyalgia, or lupus. What we can do one day, we can’t do every day. What we can’t do one day, we might be able to do on another. This, in my experience, has been one of the hardest things for people around me to grasp. People seem to expect some sort of constancy and consistency in the people around them and I’m just not able to provide that steady, constant level of skill and ability. Some days I easily “pass” for non-autistic while other days I am quite obviously Autistic, no matter who you ask.

Sullivan ends with a suggested reading list. Since the article is older, one item on the list might be supplanted with a newer book. Sullivan lists “Punished by Rewards” by Alfie Kohn but I might recommend also reading (or reading instead) “Drive: The Surprising Truth About What Motivates Us” by Daniel H. Pink.

Sullivan mentions a posting from Kalen and it’s really good so it should be on the to-read list as well: Inertia: by Kalen. Kalen writes about inertia from a more Newtonian perspective, including both getting stuck within a task as well as getting stuck trying to do a task. Kalen also mentions how disabling inertia can be in a person’s life. It was a relief for me to read someone else describing inertia that way because it has certainly prevented me from doing many things I really wanted to do and it’s hard not to feel lazy or inadequate about one’s own inertia without the proper understanding of what it really is and what it really means.

Kalen describes inertia as “a combination of attention shifting and motor planning difficulties” which definitely resonates with my experience. There are times when I am only able to act by willing my body to perform and just as many times when I cannot get my body to perform, no matter how much will I exert. When I lose the ability to speak, I can think about the sounds that I want to create. I can think about the ways my mouth and throat and lungs move when I generate those sounds. But I cannot will my body to speak. It is as baffling to me as it is to those around me, but I can think the words -- I can even type the words -- but I cannot speak the words when I am in a state of “speaking inertia.” Just as there are times when those around me feel I might never shut up, there are times when it seems I might never speak again.

Kalen offers a few suggestions for how to work with or around inertia, warning that not all suggestions will work for all people, nor will a suggestion that works sometimes for someone work every time or in every situation for that person.

Aspergia Jones writes about the idea that autistic “special interests” might actually be a form of inertia in her blog entry on her site, Letters from Aspergia. She talks about inertia as a sort of “stuckness” and mentions how much more we Autistics tend to get overtaken by “ear worms” -- music stuck in the head. Or movies stuck in the head. Or anything stuck in the head. I have gotten stuck on a word or phrase and ended up repeating it over and over. In my opinion, yes, “stuckness” is inertia, whether it’s being stuck on a special interest or stuck on song lyrics or just stuck.
In the original version of this blog post, Aspergia Jones posted a comment:
Thanks for the link! You’re right, very very little is written about autistic inertia, even though it really is A Thing -- personally, it can be more disabling than the social stuff. I think the research tends to concentrate on the things about autism that are a problem for or seem weird to neurotypical folk, like stimming and differences in social interaction. Things that affect us deeply but don’t affect those around us -- like sensory/motor stuff and inertia -- get a lot less press.
Although, just as with every other aspect of autism, it is easy to assume that all difficulties trace back to an autistic trait even when they don’t. On LiveJournal, ChaoticIdealism writes about Autistic Inertia and Sleep in a way that makes it clear to me that they are living with Non-24-Hour Sleep-Wake Disorder and assuming it’s actually a manifestation of autistic inertia. I can really relate to that since I originally thought that my own Non-24 Disorder was actually Autistic Burn-out. (That’s a whole different blog entry, but you can read about autistic burnout in Amanda [now Mel] Baggs’ excellent essay Help! I seem to be Getting More Autistic!)

Ali/Eliot writes about inertia and perseveration as two sides of the same coin in his blog entry, Stare Up at the Sky. He talks about how difficult it can be to make decisions -- everything from big decisions like buying a new laptop to little decisions like what to eat for lunch. He talks a bit about how his partner, Kitty, does thing to make it easier for him to eat regularly and make other decisions.
This blog entry is no longer available. In the original post of this blog entry, Ali wrote a comment:
The post you’re referencing of mine is a couple of years old, and my thoughts haven’t drastically changed so much as refined a little. Inertia and choice paralysis (which isn’t a term I used in that entry but I think is self explanatory?) also happen for people who are perfectionists -- and I’m that, too. The basis is entirely different, at least in me. Autistic inertia is most of what I listed in the post originally: needing external or internal prompting to begin or end a task (or part of a task), where task is a value-neutral word for any possible thing you could be doing. The perfectionist inertia is more about the choice paralysis: you can’t pick which option because one of them will be the wrong option or at least not optimal, so until you have all the data ever you’re stuck. I think my long example in the post about laptop purchasing is actually more related to perfectionism than to autism.
There’s overlap between the two, but thinking about them as separate things has helped me sort out what I can consciously change (the perfectionist stuff) and what I can’t or find very difficult to change (like remembering to eat if I’m distracted). And it’s been almost like there’s inertia about my inertia: when I can handle the perfectionist stuff, it makes it easier to brain together some of the physical inertia or get the song I’ve had stuck for over a week out of my head.
Andrea has a few tips on how to battle inertia in her blog entry Coping With the Inertia of Task Paralysis. But, as a commenter points out: “Great ideas, Andrea, but how the heck am I going to remember to do all that? I have a hard enough time remembering to remember and now I’m supposed to remember the reminders for remembering? Help! I’m trapped in an infinite regress!”

I’m sure there is much more out there on autistic inertia, but the above is a fair introduction to the topic. Please do discuss this in the comments! I really want to hear from anyone and everyone about inertia, whether it’s personal experiences or scientific (or even pseudo-scientific) theories. This is a topic that needs to be understood much better than it is and right now we are the ones hashing the ideas out. It’s up to us to figure out what’s going on and what to do about it.

Thanks for reading and I look forward to hearing from you all!



Republished with permission from unstrangemind.com.

Author's note: This is a re-blog of a post originally made on January 2, 2013. It has been slightly edited for grammar, clarity, and availability of external links, but not for content.

Wednesday, November 23, 2016

Never Again: Why The Incoming U.S. Administration Is Dangerous For Autistic People (And So Many Others)

Sparrow R. Jones 
unstrangemind.com

“These are dangerous days / to say what you feel is to dig your own grave.” -Sinead O’Connor

Sparrow R. Jones
[image: Portrait photo of a white person with short
dark gray hair, glasses, and a maroon button-up shirt.]
I blame myself.

I should have campaigned more strongly. I should have written about the political landscape and how it affects disabled people in general, and Autistics and those who love us specifically. But I have always been told that one shouldn’t talk about politics, sex, or religion in polite company. I’ve already broken the sex talk taboo so many times over that I was reluctant to tread on religious or political ground.

And I didn’t really think he would win. I honestly didn’t. Everyone I’ve spoken with who voted against him has said the same thing: we didn’t see this coming.

Wow, were we ever wrong. Donald Trump won the election. Please forgive me for not talking about politics before. I can rationalize that choice all I want, but I really have no excuse: I spent ten years at university studying political science and associated topics (history, applied economics, psychology, sociology). As a former educator in political science, I had a responsibility to talk about what was happening. Of course I couldn’t have stopped a Trump presidency single-handedly, but I regret not trying harder than I did.

Not only was I intimidated about the social norm against talking about politics, but I was intimidated by Trump’s bully tactics. And, I confess, I was intimidated by the response to Trump from the broader liberal community. I felt like I got repeatedly thrown under the bus to provide traction in the political mire, and I feel like I’m still being thrown there now that things have reached a crisis point.

Since the election, I have been seeing lots of people who voted for Trump (including my own blood relations) calling for us to unify under our new president-elect. Don’t worry: I am not going to ask that of you. The same people who are beckoning to us now are the ones who railed against Obama for eight years. Remember all their dissent and anger? Yet somehow they pretend not to understand why we are angry and frightened now.

I am going to ask for unity among all of us who are so vulnerable in the face of a Trump presidency. I do not believe this election is “business as usual” for the United States. As an adult, I have lived through every presidency from Ronald Reagan forward, and I have never felt this to-the-bone level of fear at the election of a new president.

I am going to just go there and say it: the voting populace of the United States has elected a white supremacist who is sexist, homophobic, ableist, transphobic, xenophobic, bigoted and a shameless liar, and who could propel us into the next world war, the next civil war, or both.

There is a saying: “history repeats itself.” George Bernard Shaw pointed out that, “if history repeats itself, and the unexpected always happens, how incapable must Man be of learning from experience.” Philosopher George Santayana left us with his most famous statement that, “those who cannot remember the past are condemned to repeat it.”

It is my firm belief that history is repeating itself at this moment.

My training as a political scientist and my Autistic skills of pattern recognition have combined to make me realize that we are in the process of repeating what happened in Germany of the 1930s. I already know what you’re going to say: you’re going to accuse me of violating Godwin’s Law. I have three things to say in response to that:
  1. Godwin’s Law merely says “As an online discussion grows longer, the probability of a comparison involving Hitler approaches 1.” In other words, the longer people talk online, the greater the likelihood that Hitler will be mentioned. There is no implicit judgment in Godwin’s Law. Just because this discussion is reaching a comparison involving Hitler more rapidly than any other discussion I have taken part in before -- excluding one graduate class, CMP 4481, Rhetoric of Hitler and Churchill, which pretty much ‘went there’ in the catalog description before anyone ever opened their mouth -- does not mean that the comparison is unjustified. Which brings me to the next point:
  2. Citing Godwin’s Law can be a way to shut down someone who is making an unjust comparison to Hitler, but it can also be used to try to shut down someone who is pointing out an unpleasant, frightening, or offensive truth. I believe those who will be tempted to fling Godwin’s Law at me over the things I am about to say are not ready to hear these words. Their citation of Godwin’s Law reflects more on them than on me.
  3. Back in December, Godwin himself said, “If you're thoughtful about it and show some real awareness of history, go ahead and refer to Hitler when you talk about Trump. Or any other politician.” So, with Godwin’s blessing, I will proceed.
If you know anything at all about how World War Two went for minorities -- racial, ethnic, religious, sexual, the disabled -- you will understand why I am terrified, and why I am saying right now that we have to band together, all of us. We need unity. Not unity behind our new president, but unity against the human rights violations that our President-elect shows every sign of bringing to us in full force. Hitler took power by declaring a state of emergency, due to violence. The Reichstag Fire Decree and the Enabling Act gave Hitler the same incredible amount of power that Donald Trump could easily pluck like the low hanging fruit it is, by pointing to current protests as a violent danger to the State, and declaring Martial Law.

The coming administration is dangerous for Autistics and other disabled people (and our families) for many reasons, including Donald Trump’s openly mocking a physically disabled reporter, and calling Deaf actress and activist Marlee Matlin the R-word. He has repeatedly demonstrated a lack of respect for the dignity of disabled people at a level rarely seen outside of grade-school bullies.

Although one of Trump’s campaign promises was to preserve Medicare, Medicaid, and Social Security, he has already chosen advisors who want to bury those programs. Sam Clovis is on record as supporting privatization of Medicaid and Social Security, a move that would leave the door open for moves like Texas and Alabama have already made: removing access to Medicaid for poor families that earn more than $3,629 for a family of three. John Mashburn also wants to cut funding, and has specifically targeted families with disabled children. Mashburn accused parents of children with neurological disabilities of “gaming the system” and claimed that 53% of children on SSI are not really disabled because they are not physically disabled. Have no doubt that the coming administration wants to take away your Autistic child’s benefits. Eleven percent of children receiving SSI benefits are Autistic, 21.4% have other developmental disorders, and 8.9% have an intellectual disability. These are the children John Mashburn wants to target.

The coming administration is dangerous for People of Color because: Trump has repeatedly made so many racist statements I can’t even begin to include them all here. He criticized the Judge who presided over the Trump University case, saying Gonzalo Curiel wouldn’t be fair because “he’s a Mexican.” (Curiel was born in Indiana.) As part of his stance against immigration, Trump repeatedly said most Latino immigrants come to the United States to rape people and commit other crimes. Trump was one of the most prominent “Birthers,” who questioned Obama’s citizenship and right to serve as President -- typically a ruse to cover their rejection of a Black man as President of the United States. Donald Trump has been sued twice (1973 and 1976) by the Department of Justice for refusing to rent apartments to Black people. Trump has a long history of complaints against him for mistreating Black employees, and in 1992 he was fined by the New Jersey Casino Control Commission for racist practices. He even managed to insult and stereotype Blacks and Jews at the same time when he said, “Black guys counting my money! I hate it. The only kind of people I want counting my money are little short guys that wear yarmulkes every day.”

In February, Trump refused to condemn the KKK and their former Imperial Wizard David Duke for endorsing his presidency, claiming he didn’t know what the CNN moderator was talking about, and that he had no idea who Duke was -- a statement that has since been proven to be a lie. Even if Trump really does oppose the KKK, how can we trust a candidate who has garnered such heavy support from white supremacist organizations, with a prominent KKK leader telling a television reporter that “The reason a lot of Klan members like Donald Trump is because a lot of what he believes, we believe in”?

Donald Trump’s presidency will be dangerous for Muslims because Trump has promised to build a registry of U.S. Muslims. Recently it was announced that the incoming administration believes such a registry would be a Constitutional move, based on the court precedent of the Korematsu case that defended the Japanese internment camps during World War Two. While Dani Alexis brilliantly shreds the use of Korematsu as grounds for a Muslim registry the fact that Trump is so heavily targeting all Muslims makes him a threat.

A frightening development stemming from the U.S. having elected Donald Trump is that his hatred is enabling others who are filled with hate toward various minorities. Stories of insults and attacks from across our country, with the attackers mentioning Trump’s name, keep pouring in because the attackers know Trump strikes fear into people’s hearts. The President-elect, the future leader, is by example instructing his followers as to the type of behavior and language that are now appropriate. He has modeled mocking disabled people. He has modeled rape and abuse of women and children. He has modeled racism, xenophobia, homophobia, transphobia, and more. And we are now seeing citizens act in similar ways, and worse. The Southern Poverty Law Center (SPLC) has reported over 700 Trump-related incidents of hateful harassment since the election. By contrast, the SPLC has recorded only 27 anti-Trump incidents.

I am calling for unity against the incoming administration's assault on everything that has actually made America great. An old saying claims that democracy is two wolves and a sheep voting on dinner. What makes the United States shine is our assertion that sheep have rights. Not that we have  been perfect in recognizing or protecting those rights, by any stretch of the imagination, but the history of the United States has been a narrative of struggle and advance in declaring rights for Black people, workers, children, the disabled, women, and many other marginalized or disenfranchised members of our society. The wolves and sheep may have been voting together, but they have been doing so in a political culture that ideally works to honor sheep’s rights. Trump’s idea of making our country great is to roll back all that progress and put mutton on the menu.

I am calling for unity because I do not currently see it. During the campaigning period, slams against  Trump unfortunately and too often used vulnerable minorities as a cudgels against him. For example, there were the statues that body-shamed him. As a trans man, it really hurt to see how many of my liberal friends were gleefully mocking a man, by mocking his genitalia. Thanks to my connective tissue disorder combined with the current state of technology in genital reconstructive surgery, I will never have genitalia that look and function the way my friends insist the genitalia of a real man, worthy of dignity, should. Do you think people should laugh at me and publicly shame me for that? When I tried to tell my friends how terrible that statue and their laughter made me feel, I was casually dismissed as being too sensitive or not getting the joke. Body shaming is not funny to me, and using it against someone because they are racist, sexist, ableist, homophobic, etc. is not a valid justification -- because vulnerable people are hurt the most by such acts.

Now I am seeing people talking about how “stupid” (or, worse, how R-word) Trump is. This is unacceptable. Do not use intellectually disabled people as a verbal weapon. People are also rushing to declare Trump “mentally ill.” It is also not acceptable to sacrifice our community members with psychiatric disabilities in your hurry to insult Donald Trump.

I went to an anti-Trump protest last Friday night, and none of the signs talked about his ableism. None of the chants mentioned his ableism. We people with disabilities were invisible to the protestors. The only people I see still talking about Trump’s danger to disabled people are usually disabled people. We have been left out in the cold.

As Benjamin Franklin famously said, upon the signing of the Declaration of Independence, “We must, indeed, all hang together, or assuredly we shall all hang separately.” The slogan that unites those in opposition to Trump and the ignorance and hatred he stands for is “Love Trumps Hate.” I would suggest that we put that slogan into action: Factions of hatred are rallying around a powerful leader right now; we must counter by rallying around our most disenfranchised, most vulnerable members.

We must remember to always center those who have the most to lose from Trump’s leadership -- the impoverished who will die without health coverage, Autistics who face having crucial assistance stripped from them, People of Color, LGBTQIA+ people, Muslims, Jews, and more -- in our movement. We must leave no vulnerable person unprotected and unrepresented in our quest for justice. If we do not seek justice for all, we will secure justice for none.

We absolutely must unite. We must continue to remind others who are against all the other threats against the fundamental human rights of women, gender and sexual minorities, People of Color, members of various religious groups, and more that we are part of the team. We must remain sensitive and compassionate toward all the other groups of vulnerable people who are now poised to go through a metaphorical meat grinder. We must stand together against all injustice and we must all fight for each other’s right to live and thrive. It is the only way forward.

We know what happens if we do not fight against the threat of authoritarian dictatorship: history’s lessons have taught us about the concentration camps. More specifically, for those of us who are Autistic or have loved ones who are Autistic, we cannot forget the lessons of Hitler’s “trial run” of the death camps: the Aktion T4 Program. Yes, love truly does trump hate. But love can only be victorious if we enter battle with the cry, “never again!” in our hearts and on our tongues.