Saturday, December 10, 2016

How to Avoid More Cruel Injustices Like the Alex Spourdalakis "Involuntary Manslaughter" Verdict

Shannon Des Roches Rosa
www.squidalicious.com

Alex Spourdalakis
[image: Smiling white teenage boy
with shaved dark hair, wearing
a coral colored tank top.]
Alex Spourdalakis was brutally murdered by his mother and godmother three years ago. Somehow, those women were allowed to plead guilty to involuntary manslaughter* and will likely be released with time served -- even though they had been planning Alex's killing for a week.

As reported by Matt Carey at Left Brain/Right Brain:
"When they carried out their plan, they poisoned Mr. Spourdalakis with sleeping pills. When this did not work quickly enough, the mother and caregiver stabbed him. Not once, not twice, but four times, including two stabs to the heart. When even this proved not fast enough, the mother and caregiver slit his wrist. Slit so deeply that reportedly his hand was nearly severed from his arm. When Mr. Spourdalakis finally passed, the mother and caregiver turned the knife on the family cat. After cleaning the knife, they returned it to it’s place in the kitchen. The mother and caregiver then took large doses of sleeping pills, the method they had just found to be ineffective in the murder of Mr. Spourdalakis."
Legally twisting this onslaught of murder attempts into a involuntary manslaughter plea is shocking and disgusting, not to mention extremely worrying as a precedent. But that is what happens when our society is allowed to paint high-support disabled people like Alex (and like my own son Leo) as burdens rather than fellow human beings, and their parents as victims.

We need to keep the focus on the actual legal victims: The disabled people who get abused and killed. We need to speak out about Alex deserving the same justice that autistic teenager Issy Stapleton was given after her mother was sentenced to prison after trying (and failing) to murder her, as related by attorney Sam Crane:
"it’s really going to be very dangerous to [Issy] — and to many other people with disabilities — if the court sends the message that we should just expect abuse. That her disability is so severe that she should just expect to be abused by those around her because they are so stressed out. And that’s basically what it would mean if the court were to say that the abuse simply was a natural result of caring for a person with a disability."
If we want to prevent future tragedies, we need to challenge the status quo about the value of disabled people's lives. We need to speak out about the huge, huge chasm between understanding that parenting is hard when neither you nor your child have the resources you need, and justifying the murder of dependent disabled children. As I wrote after Issy Stapleton's mother tried to kill her,
"If you identify with a murderer rather than a murder victim or if you become upset when people criticize parents who hurt or kill their disabled kids, then maybe it's time to think about how you found yourself in that dangerous mind space and start making changes to help you, your child, and your family."
We also need to speak out against autism misinformation and pseudoscience, given that Alex's mother rejected all kinds of legitimate supports for Alex due to Andrew Wakefield and his band of fellow quacks convincing her to embrace pseudoscience instead.**

Another needed action: speaking out, and to, our community's families who are susceptible to crisis, so they know that they are not alone, and also know what their options are:
"Being in crisis is not the same as being a failure. Nor is it a personal failure to admit you and your child need help. So we need to work past fear and misinformation, and get educated about what our support options are, both during emergencies, and in general. Misinformation can lead to tragedies, as when parents absorb media-propelled myths that it more understandable for a mother to try to kill her child than to call Child Protective Services (CPS) on herself if she's thinking about harming that child. These dangerous myths sometimes persist because parents don't actually understand the role of CPS in protecting both children and families, nor are they aware of emergency services or rights-based services that were always available to them, if they'd known or been told where to look."
We need to help parents understand that there are usually reasons why high-support autistic people are aggressive or self-injurious, often communication-based or medical reasons. And as Dr. Clarissa Kripke says, we need to do our best to accurately observe people's life circumstances, and change them for the better:
"We cannot manage behavior in the context of unacceptable lifestyles. If someone’s situation, their social environment, the activities they’re doing, the people they are with, their physical environment is unacceptable to them, then that is the problem that we need to fix. For example, if they can’t be in the room because that air conditioner is too loud, and causing them such discomfort that they feel like they’re going to melt down, the solution isn’t to punish them, to yell at them, or to tell them they’ll be strapped to that chair if they don’t stop their behavior -- the solution is to turn off the air conditioner, or, if that’s not possible, to move to a different environment. The problem isn’t always obvious. Often, it isn’t anybody’s fault."
Finally, we need to heed what autistic people themselves say about what it feels like to be in crisis, as Brent White and Lindsey Anderson recently discussed:
"It’s important to remember that when someone is struggling, they are not being “bad” or trying to do something to you personally -- even though it can feel like that, especially if they’re screaming at you or making you angry."
None of these actions or understandings will bring Alex back. None of them will get him the justice he deserved. But if you help counter all the misinformation and ableist social attitudes that contributed to his death, with resources for helping autistic people and their families live better and safer lives, hopefully that can help prevent future tragedies.


*I am not linking to any news articles about the involuntary manslaughter verdict, as every one I've seen justifies Alex's murder on account of his disability. These articles are are easy to find online.

**For more information on how the autism huckster Andrew Wakefield pumped Alex Spourdalakis's family for adoration and publicity, and then left them far worse than when he hijacked them, please see Matt Carey's review of the resulting hoaxudrama Who Killed Alex Spourdalakis.

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.