Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Category: Life Skills

Alexithymia: I Don’t Know How I Feel

exeter flowers

[image description: some white flowers, species unknown, in a graveyard in Exeter, Rhode Island. Image copyright Sparrow R. Jones]


When I was a child, my mother would angrily ask me why I had done or said something and I would respond, honestly, “I don’t know.” This response did nothing to relieve her anger because she couldn’t conceive of someone not knowing why they behaved the way they did, so she assumed I was lying and just didn’t want to incriminate myself by revealing my true motivations.

 

Sometimes now, from a distance of decades, I can explain my behavior. Time, experience, and an increased vocabulary have helped me to understand my younger self better and be more well-equipped to communicate my childhood thoughts than I was at the time.

 

But just as often, I still have no idea why I did or said the things I did because I still have so little connection with or understanding of my emotional life, both in childhood and today.

 

I have a condition called alexithymia. The name comes from Greek roots: a-, meaning ‘without’, lexi, meaning ‘words’, and thymia, meaning ’emotions.’ Without words for emotions.

 

That’s a pretty good name for it, because that’s pretty much what it is. I do have emotions — quite strong emotions, in fact. Much stronger than I wish they were. But when I try to understand what I’m feelign or why I’m feeling it, I am at a loss.  I can generally tell you (sometimes after pausing to do an internal assessment first) if I’m generally feeling “good”  or “bad.”  I can usually put words to the emotions that are painted in very broad strokes: happy, sad, angry. But that’s about the limit of my emotional vocabulary.

 

To me, emotions are like storms at sea.  They are mysterious and unpredictable. I feel like I can go from zero to furious in 0.4 seconds because I am unable to see all the intermediate shades of emotion along the route to furious, so when I finally arrive at that destination, it feels to me as if it came out of nowhere.  I think it often seems that way to onlookers as well, because my Autistic style of emoting is not always very easy for people to understand.

 

I regularly get feedback from others who have interpreted my “contented”  as “distraught” (it’s called “resting face,”  people.  Mine apparently has a sad/angry tone to it, so I have learned that I have to intentionally add artificial smiles to my face if I don’t want others to accidentally mis-read me as dangerous and unapproachable.) I’ve also gotten feedback from people who see “nervous”  or ” anxious”  when I am actually “energetic and happy.”  It’s called stimming, folks…..it’s not always a sign of anxiety in people with my neurology. Ironically, I have been riddled with anxiety but when I discuss it with someone who doesn’t know me extremely well, they think I’m exaggerating because they can’t see the external signs of anxiety they are accustomed to reading from non-autistic people’s body language.

 

I try my best to live in the deep waters beneath that stormy surface. Meditation helps a lot.  My role model is Mr. Spock from Star Trek.  Vulcans have emotions but practice meditation and other rituals from an early age to learn to control their emotions rather than allowing their emotions to control them.  I work hard to replicate fictional Vulcan emotional training as best I can in my frustratingly non-fiction  human life. Sometimes it even works.  I get better at it as time goes on. But I still “lose it”  on a regular basis.  It’s a work in progress.

 

A 2016 article in Scientific American says that 10% of the general population has alexithymia while 50% of Autistics have alexithymia. I have seen other sources estimate higher numbers, but 50% is a good, conservative estimate.  My reading indicates that alexithymia in the non-autistic population is very oftne the result of an emotional trauma.  No one (to my knowledge. If you know of a case, please share it in the comments) has studied whether Autistic alexithymia is the result of emotional trauma (which wouldn’t surprise me, since growing up Autistic in a non-autistic society can be intensely traumatizing) or whether it’s part of how many of us are wired.

 

The difference — autism with or without alexithymia — could explain many of the differences among Autistics, for example, it might be part of the explanation for why some of us (like me) avoid eye contact while I’ve met lots of other Autistics who report having no trouble at all with making eye contact with others.

 

Having alexithymia (and some states-of-being that seem closely connected for me, such as a very low level of body-awareness) means that when I figure out that I am feeling bad, I have to play detective to try to understand why I am feelign bad and what, if anything, I should do about it.

 

I have developed a sort of check-list to help me navigate the experience of being embodied.

 

First I have to figure out if I am in need of my checklist. Here are some of my warning signs that I’m not functioning optimally:

 

  • I am screaming
  • I am crying
  • My body is shaking
  • I am obsessively going over unpleasant past memories
  • I am spontaneously (meaning I am doing it during my personal time, not as research for something I am writing) conducting Google searches  on topics related to unpleasant human interactions and how to cope with them
  • I am dizzy or experiencing some non-typical (for me) cognitive difficulties
  • I have lost the ability to speak
  • I find myself unwilling to go someplace or do something I either enjoy or know that I need to do in order to keep my world intact (like the tax office or the social Security office)
  • I am not sleeping (or sleeping too much)
  • I am not eating (or eating too much)
  • I am constantly thinking bad thoughts about everything the people around me are doing

 

These are my main warning signs that I need to run a self-diagnostic check.  If you have similar difficulties to the ones I discuss in this essay, you might want to write out your own list of warning signs.

 

My diagnostic checklist starts with medical emergencies and works its way down from there.

 

  • Check my blood sugar
  • Check my temperature
  • Assess whether I need to use the bathroom (strange though it may sound to those who don’t experience this, I am often unaware of physical needs unless I specifically direct my attention to the body I live in and focus on the physical sensations it is experiencing.)
  • When did I last sleep? Am I sleep deprived?
  • When did I last hydrate?
  • When did I last eat?
  • Am I experiencing an emotion? Try to discern whether it is mostly anger or mostly sorrow. Continue to break it down from there, looking for physical clues.

 

A book I’ve found helpful in this last task is: The Emotion Thesaurus.  It is a book for writers and it includes descriptions of the physical things that happen to the body when experiencing 75 different emotions. I would love to have the emotion body responses turned into a deck of cards I could carry in my pocket.

 

The only emotion cards I’ve ever seen are profoundly unhelpful for me because they just have things like photographs of human faces experiencing feelings (useless for me as I can’t read feelings from a photograph) or even worse, cartoon drawings of emotions.  I need the body experience descriptions like in the Emotion Thesaurus to help me identify the emotions my body is having.

 

Usually by this point in my checklist I’ve found my trouble.  If not, I just try to do what I can to mitigate the damage — isolate myself from others, be kind and nurturing to myself, try to dive beneath the surface if I can and if I can’t, I try to wait for the storm to blow over and the sea to become calm again.

 

I wish I had more to say about emotions and alexithymia, but I’ve pretty much hit the end of what I have on offer for this topic.  If you’ve read my blog for very long, you’ll realize what a statement that is, because my standard blog essay is twice the length of this one.  Struggling with emotional lability and alexithymia has been the battle of a lifetime for me and I sometimes wryly joke that I’ll finally get it figured out when I’m lying on my deathbed at 120 years old.  Things do seem to be getting better, though. My 40s have been much better than my 30s.  My teens and 20s were such horror shows I’m amazed I survived them. I predict my 50s will be my best decade yet.

 

If you’re a parent and you’re struggling with your child’s emotions, you might feel like life is punishing you, but I’m here to tell you that the real hell is the one your child is living through.  I know it’s hard to be gentle and understanding with someone who yells and throws things, hits and bites. But I’ve been that person for a lot of my life and gentle understanding is exactly what we need most.  Help your beloved person learn how to trouble shoot and do self-checks.  Help them learn how to decipher and name emotions.  Help them find emotional management techniques that work for them.

 

Don’t get upset if they reject meditation or breathing techniques.  We’re all different and some Autistics get *MORE* anxious when they try to use these tools. Don’t be afraid to try medications but work to avoid “drugged zombie”  as a chosen result.  It might be easier for people around us when we’re doped out of our emotions, but it’s not good for us.  Vow to only use medication that enhances an Autistic’s life and coping skills, and never use medication or dosage levels that operates as a “chemical straitjacket”.   Our responses to medications are often non-standard so be prepared to experiment with much smaller (or much larger) doses than other people need.  For example, Temple Grandin recommends using only a 1/3 dose of anti-anxiety medications when prescribing for Autistic people.

 

I hope something, anything, I’ve written here is helpful to you.  I’d love to see a lot of discussion in the comments section.  This is a topic I’ve struggled so hard with  that I feel inadequate to even address it at all.  But it needs to be said, so here I am saying it.  Be well, gentle readers, and may your emotions ever serve you rather than the other way around.

 


edited to add:

A linkback from another blog that linked to this post included a link to an alexithymia questionnaire that quanitifes one’s level of Alexithymia.  I scored 149, “high alexithymic traits.”

 

The other blog entry is: Can you name all those emotions?
And the emotion blindness questionnaire is: Online Alexithymia Questionnaire

Don’t Call Me a Self-Advocate

This is a re-blog of a post originally made on February 11, 2013.


a boy and his cat

[image description: a black and white photo of a transmasculine person snuggled in his sleeping bag on a cold morning, interacting with his cat who is also snuggled against the chill. Photo copyright 2016 Sparrow R. Jones]

I don’t self-identify as a self-advocate.

Oh, I am a self-advocate in that I seek to fill my needs and (most of the time) am able to ask others to help me get what I need. I am a self-advocate in the sense that is usually meant when goals are set for an Autistic that include the goal of helping the Autistic person learn to navigate systems, ask for what they need, explain their autism to others, and so forth. There is nothing wrong with self-advocacy and I strive to be a self-advocate and to encourage others to do the same.

But self-advocate is not my self-identity. I am an advocate. I am an activist. And so are most of the Autistics I notice being called — or calling themselves — self-advocates.

I’m not writing to try to tell others how to self-identify. I believe everyone should have the autonomy to self-identify as they see best and the rest of us owe them the respect of calling them what they have identified themselves to be. It is a cornerstone of human dignity to be able to say, “I am this,” and have others respect you as such. I will cheerfully call anyone a self-advocate who chooses to identify as a self-advocate. And I don’t judge or seek to diminish those who choose that identity to describe the outreach they do. It’s just that it’s not my identity.

I do think I understand how this term came to be so widely used. Our allistic (not autistic) allies were advocating for us (the best ones were doing so by doing what Kassiane calls “signal boosting”— that is, repeating our message for those who will only hear the words if they come from someone of a different neurotype) and so they came to be called “advocates.” Someone noticed that Autistic people were advocating as well and they decided there should be a special word so people knew that the words (or art, or music, or performance) were coming from an Autistic person themselves. Digging into the pre-existing autism terms, they came up with self-advocate and ran with it.

The problem is the term is dismissive. It is demeaning. It is en-small-ing. It is infantilizing. And it is wrong — we are advocates, not self-advocates, when we do and say the things we do and say to try to make the world a better place for all Autistics. That’s the key there: all Autistics. We are not self-advocating; we are advocating for our entire tribe.

It shouldn’t even feel natural to call us self-advocates when we come forth to speak and write about how Autistics are treated, what Autistics need, what Autistics deserve. I ask you this: do all of these sentences sound natural and right to you?

  • The Reverend Dr. Martin Luther King Jr. was an important African-American self-advocate.
  • When Rosa Parks refused to sit at the back of the bus, she was engaging in a bold act of self-advocacy.
  • During Vietnam, Buddhist monks became self-advocates by setting themselves on fire.
  • The SDS was a student-run organization of political self-advocates.
  • The National Organization of Women regularly engages in self-advocacy surrounding issues of importance to women.

Do you begin to sense why I have issues with the term “self-advocate?”

When I started Googling to see if I could find other Autistics who were not pleased with the label “self-advocate,” I was not surprised to see that I am not the first person to take issue with this label. The first page I found belongs to Corina Lynn Becker, who writes, “In my opinion, self-advocacy is asking for a glass of water. This is not what I do. I am not asking for my human rights; I am demanding them, not only for myself, but for the rest of my community.”

When we are called self-advocates, it is easy to ignore what we say about the current generation of children who are growing up Autistic. “oh, she says some very important, provocative things! But my child is different. My child will never speak or drive a car or get married. She is not talking about my child; she is a SELF-advocate.”

No, we adult Autistic advocate are not like your child. We are not like your child because we are not children; we are adults! You cannot automatically tell what our childhoods were like by just looking at us or hearing us or reading our writing. Calling us self-advocates is the easiest way to disregard something you don’t even know.

When we are called self-advocates, it underlines the myth that we have no empathy by positing us as activists who are only advocating for ourselves. Because how could an Autistic advocate for other Autistics? Without empathy, we must only care about our own personal situation, and especially not the lot of those we will never meet. (That, in case you didn’t realize, was sarcasm.)

Sure, I write about myself. I write about myself a lot. But my stories are offered up as case studies, as examples. I advocate more for other Autistics than I do for myself. When I first re-opened this blog, I wasn’t sure what my focus was. Over time, my focus has become very clear to me and it is to do whatever I can to protect the children and to help them grow up strong and free with happier childhoods than I was able to have and healthier adulthoods than I have ended up with. I don’t write to change my world. I doubt that much of what I write can change my world. My chance has come and gone; I write to change the children’s world and to do what I can to build a better future for autism and for the Autistic. This is not self-advocacy. This is activism.

Another Autistic I found writing against the idea of being called a self-advocate when one is actually reaching out in advocacy for all Autistics is Neurodivergent K. She writes: “Allistic, enabled people are considered the default for anything and everything, so when someone like me-autistic, disabled-does something on my own behalf like every other adult in the world it’s seen as so damn special and cutesy that they decide they need another word for it. A word, I may add, that implies that what I have to say is not as important as what “real” advocates have to say. I’m just talking about myself, you see. They’re doing the really real work, for we need the great allistic savior! We’re cast as sidekicks in our own movement.”

K suggests that it is the allistic advocates who need the special term, not us Autistics. She says they can be allies or parent-advocates while we take back the word “advocate” for ourselves. I agree with her. Or just call us all advocates, for that matter, because why does there even need to be a separation? If we are all doing battle to improve conditions for Autistics (and have no doubt that if we improve the world for us, it will improve for everyone. This is how it has always gone in the past when an oppressed group finally won the fight to be viewed as fully human beings) then we don’t even need an “us vs. them.” We are all advocates. We are all activists. We are all struggling to be part of the solution.

 


Important conversation on this topic moved from the old blog:

Posted by chavisory on February 11, 2013 at 10:36 am 

I’ve always been uneasy with the term and couldn’t really put my finger on why…this post captures some of it. There’s an implied condescension…indeed, like we aren’t the “real” advocates. And it creates an illusion wherein a lot of parents can think “My child can’t self-advocate because she can’t write like these people can, so these autistics are a fundamentally different group of people who have nothing to do with my child’s needs and I don’t have to listen to them.”

And also I agree that I’m not primarily advocating for myself–I have an education, I have control over my own life, I’ve more or less successfully carved a little niche in the world for myself–I’m standing up for other autistic and neurodivergent people to be treated with respect and acceptance, and for other children today to be thought of as capable and having rights and as being future adults and not eternal children.

What I think of as “self-advocacy,” when I was a kid was just called “standing up for yourself.” Funnily enough, no one liked it when I did it back then, either.

Posted by Zr on February 12, 2013 at 10:20 am  

Apparently,
Autistic people are “self advocates”, Neurotypical people are “advocates”.
Autistic people have “special interests”, Neurotypical people have “interests”.
Autistic people have “special needs”, Neurotypical people have “needs”.
Autistic people have “splinter skills”, Neurotypical people have “skills”.
Regardless if it’s the same thing(s) in both cases.
Madness.

 

Autistic Inertia: An Overview

Mason Dixon Line

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

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.

Autistic Inertia: An Overview

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 & 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 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!

How Having Savings Saves You

emergency fund

[image description: a red fire alarm box that says in emergency break glass but inside the glass instead of a handle to pull for the fire alarm there is a stack of hundred dollar bills.]

Welcome to the new, permanent location of my blog. I own this domain and have, effectively, done the online equivalent of moving out of the dorms and into my own place. What better way to celebrate than writing what I’m about to write about financial independence.

I’ve written a good bit about preparing your children for the world. It’s especially important if your child is Autistic to prepare them for the world with specific advice about how the world works. So often, we need to have things spelled out for us. We need step-by-step plans. We need to get a peek into the future and know what to expect. I know some of my Autistic friends are great at spotting patterns and protecting themselves, but I, as you probably already realize if you’ve been reading my writing for more than about two minutes, was not so lucky. I learned a lot about how abusive the world can be and I learned it in what they call the School of Hard Knocks. I’m still learning it. I still get knocked up against pretty hard by a difficult world.

Being on disability, I’m not permitted to have savings. I’m going to explain to you now why that is so dangerous. It’s going to scare you. It should scare you. I hope it scares you into action. The ABLE Act  is great and will help a lot of people, but there are restrictions (and that’s why I wrote last year about the importance of saving every scrap of documentation of disability while your child is young.) The ABLE Act is a new law that allows disabled people to have savings accounts (a single 529a savings plan of up to $100,000, permitting donations of up to $14,000/year), to be used for specific purposes, without losing disability benefits. That’s huge and could affect nearly 6 million disabled people, although it’s only begun being implemented in a few states so far. But the catch is that you have to have a disability onset before age 26. And, more than that, you have to prove that date of onset and get the government to agree with your proof.

My age of onset is long, long before age 26 and I have documents from age 19 that prove it…or should. The government has looked at my paperwork, documenting institutionalization for the same disability I’m currently collecting SSI for having, and declared that it doesn’t count.  So I can’t use the ABLE Act to build a savings account to save me in case of disaster and I can’t switch to SSDI Adult-Child benefits (which would increase my income and put me under a much less draconian set of rules than I currently live under on SSI.) I’m working toward becoming self-supporting, but I’m nearly 50 now and still barely earning any income. There’s a strong chance I may never achieve my goal of self-sufficiency and may never live at or above the poverty threshold.

But I digress.

Today I want to talk about why it’s so important to create a world where disabled people are able to have savings. And I want to start with a Reddit thread that’s in the process of going viral.

A friend on Facebook shared this link. I’ll give you the link but I’m also going to summarize it for you because it’s a long link (and I do recommend reading every single comment on it if you do go there. And I do recommend going there. It’s both instructive and amusing–that schadenfreudian amusement of watching an abuser in distress about getting what’s coming to him.)

My Girlfriend Elaborately Made Me Homeless

Here’s my summary of what transpires on that thread: A man hit his girlfriend. She went away for a few days but came back. He apologized. She accepted his apology but lost trust in him (as well she should have.) When they moved from their apartment to a nicer apartment owned by the same landlord, she gave him airy dismissals when he asked about signing the lease and he accepted them because he liked letting her deal with the numbers and money and stuff. She had good credit and his was trashed so her credit got them the apartment in the first place. He didn’t think much of it when he asked about signing the lease and she said, “oh, that’s all taken care of”  or something equally breezy.

Fast forward and he’s getting angry again, they’re having “spats” (his word for it) in which the police arrive to settle things. Then one day he goes to work and comes home to find all her stuff gone and a lawyer serving him a document requiring him to move out within 45 days and not contact his (former) girlfriend. He’s distressed and outraged but can do nothing – she has played her hand well and he will be gone and she will get the nice apartment back and go on with her life minus one abuser.

People are, justifiably, applauding this woman’s bold move. She is, quite understandably, a hero in her own life story and a role model. She got out of an abusive relationship without putting herself at physical risk to do so. There’s just one thing: this smooth and bloodless self-extraction is not available to most people in situations of domestic abuse. The woman had a lot of resources available to her that Autistic adults often do not have. And one of the biggest ones? Savings.

This is why I keep telling you to work harder to extend the ABLE Act. It’s great that it helps millions of people. That’s not enough. This is also why I keep telling you to teach your children how to say no and mean it and back up their no with action.

I have a book coming out very, very soon. I don’t have a specific release date, but it’s teetering on the threshold even as I type. It’s called The ABCs of Autism Acceptance, published by Autonomous Press, and I have a whole chapter about the abuse that Autistic people cope with every day. The statistics are so huge, even my jaw dropped when I was researching it and I am hard to shock when it comes to the knowledge that Autistic people are vulnerable to victimization (yes, it’s chapter V in the book. How did you guess?)

Not having financial resources is one of the things (not the only thing, but a huge thing) that keeps us so vulnerable. Even with all my experience and all my knowledge and all my determination for self-determination, I still ended up in a situation in April of this year where I needed the police to come supervise as I left someone’s house to make sure I was able to leave with all my possessions and without being physically harmed. It could have been a lot worse than it was. And I was lucky that I already live in my van because otherwise I might not have even tried to leave, knowing I had no money and no place to go.

In the Reddit thread I’ve linked above, one person wrote a comment in which they included a link to a sort of “choose your own adventure” story about a young professional woman who gets trapped in an abusive relationship and an abusive job due to financial pressures. The story then “rewinds”  and tells itself again with the young woman choosing to build a (pardon the language) “Fuck Off Fund” so that she doesn’t get stuck in a sexually harassing job and with a verbally and physically abusive boyfriend because she has savings. She has a minimum of $3000 savings, which is more than I’m allowed to have. The government would cut off my benefits if I had $3000 in savings and I’m not an up-and-coming young professional so that’s a pretty big deal for me. Here’s the story. I also recommend reading it, even though I’ve just given you a pretty good summary of what you’ll find there:

A Story of a Fuck Off Fund

No matter what you call that savings account, it’s a lifeline. It’s a way out of abuse. Autistic people get abused every day: by romantic partners, by landlords, by bosses, by neighbors, by family, by roommates, by caregivers. The list goes on. We are incredibly vulnerable because we live in a world that has kept us incredibly vulnerable. So many of us live on disability income that functions under legislation that keeps us in a child-like state our entire life, stripping our autonomy and self-determination. Another large slice of our demographic are chronically underemployed, struggling to get by on minimum wage or less — and I’m talking about young people with bachelor’s and master’s degrees in this group. The super-successful among us who get held up as cultural icons (I don’t actually have to name their names, right? You know who I’m talking about.) are the exception, not the rule.

We Autistics deserve something better. We deserve a better life. And we deserve a savings fund. Sure, some people will fritter away their money like the first example in the “Fuck You Fund” article I’ve linked above. But for so many disabled people, for so many Autistic adults, it’s not a case of frittering anything away because we don’t even have it to start with.

When you are preparing your child for the world and preparing the world for your child, think about these things. No matter what future you envision for your child, make sure it’s one with an emergency savings fund and protected access to it — protected from victimizers who would try to take it for their own and protected from those who would try to deny your child access to it in times of genuine need.

And beyond that, educate your child to protect them from abusers. Teach them that no means no. Teach them to own their bodies and money and minds and lives. Teach them to be strong and proud. Whether they’re headed off to college and a career or headed into a life of round the clock support, teach them. These are scalable skills that can be tailored to any life, any life situation. The way I use my skills of self-protection as a traveling vandweller will look different from the way an Autistic university professor uses skills of self-protection and different from the way an Autistic living in a group home uses skills of self-protection, but we can all be taught how to own our power and defend our boundaries and protect our lives from the predators that all of us are going to encounter in our lives because Autistic vulnerability does not respect these apparent differences and strikes hard at all of us.

There is so much more I could say about this, but I have a lot to get done today, so I’ll just stop here. I encourage you all to discuss these things in the comment section. Share resources with one another. Get to know one another. I have a wide variety of readers,  from fellow Autistic adults to parents of Autistic children and parents of Autistic adults to professionals who work with Autistic people and our families in many different capacities. Get to know each other and talk about this important issue and help all of us move forward when it comes to protecting Autistic lives without removing Autistic autonomy and self-determination.

 

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