New Year~ aka, That Post Where I Talk Difficulties in Goal Setting

Hello folks! This is a more informal post than usual, so your patience is appreciated and I promise I’m working on a post more typical of my blog for sometime later this month! [Note: contains some mention of abuse and PTSD.]

I have a big goal this year- the same goal I had for my Birthday, and for Rosh Hashanah: write more. I enjoy writing, and I enjoy the feeling I have when I hit publish, and yet I write so rarely. Part of this is executive dysfunction, part of this is depression, and part is anxiety. Lately, I often find myself using the excuse of “well, if I’m doing so well right now, I ought to use that exclusively on work stuff!” any time I have more than a few minutes of good processing power in me. (In fact, when I’m done with this post I’ll probably work instead of doing any of the zillion things I should be doing for myself, being as how it’s technically winter break. Oops.)

If I have to quantify this goal- because I’m really trying to train my brain to think in SMART goals as well- I’m aiming, as always, for 12 posts minimum in 2016. I hate quantifying my yearly goals though. When I fail, there’s this wave of “not okay” that comes over me. Back when I did weight related rather than action related goals, this would trigger an eating disorder behavior of some sort.

But the big thing is really PTSD related. Any time I fail at anything- even something small that other people aren’t really bothered with- I have Rick’s voice in the back of my bead going, “If you weren’t so smart, we’d lock you away.” “We should lock you up, you are worthless.” “I don’t know why we bother keeping you at home.” On bad days, it leads to a dissociative episode. And really, this is usually UTTERLY disproportionate to the stimulus that triggered it, because that’s how PTSD works. Having a spelling error pointed out at the wrong time has lead to hours long episodes- I still work, in fact that might be all I do other than cry and repeat bad mantras, but it’s still there. I’ve had larger episodes that have faded in and out over a week. It’s ridiculous, really impacts my ability to behave professionally, but it’s also uncontrollable. I’ve gained the ability, slowly and over time, to make it more something that can be hidden behind the computer screen (thank you telecommuting- there’s no way I could last in an in person office at this point.) But even that doesn’t always work, because of the nature of a dissociative episode makes it even more difficult to conceptualize what works in a reasonable turn around. It, in short, sucks.

There are other general goals I have too, but they are perpetual ones that I always have. Leave the house at least once weekly, preferably more often and under my own steam but once with help satisfies it. If I don’t, the agoraphobia sets in heavily. It becomes increasingly difficult to leave, particularly under my own steam. Even my ability to call anyone on my very short “safe” list gets smaller. (Currently, the safe list is my parents, siblings, niece, eventual-BiL, and best friend.) And while I’m not always successful- thank you mix of mental health wackiness and chronic illness- It’s something I continue to try to work on, with no end in sight.

Speaking of, one of the things I’m going to aim for today? Walking to Sheetz in my town. (I made it to one of the pubs last night, though I got out before the NYE celebrants started showing up en mass.)

Heavy pale red headded femme in a Tardis Dress, Tardis head band, lots of makeup, and steam-punky jewelry in a pub

Here I am around 7pm New Years Eve about to leave the pub I made myself go to to fulfill my goal. I had the bouncer take this so I had a picture of the dress on me. [image description in alt text]

Try to work on phone phobia is another perpetual goal. This week, I actually called someplace to order food- and it was a big deal. I’m going to call my best friend, who it’s become harder to call, when I’m done with this paragraph. (Thank you new year for the scripted calls you make possible.) This aspect of my mental health disabilities is a particularly disabling one, both personally and professionally. Some of this has improved as people in general get more comfortable with ascribing meaning to online interactions. Some of it I’ve developed accommodations for myself, though the willingness to implement those accommodations is hit or miss, even in the cross-disability community. People just don’t get that I can speak on a webinar or scripted/semi-scripted telecast but can’t handle an actual phone call with ease. It’s an entirely different format to execute for me, but it’s still a struggle.

This is a thing that I’ve decided to work on- even though it’s disability related, and even though I still try to implement my accommodations. Sometimes it feels even more difficult, because too many people don’t get that the ways you are disabled fluctuate depending on a lot of- and sometimes difficult to identify- factors. But it’s something that seems an area that I want to work on, which is reasonable to work on, and which comes with many opportunities to celebrate small steps and have it understood by my fellow phone-phobics and phone-averse people as to why it’s worth celebrating, and why it’s worth working on. I don’t know if I’ll ever reach a point where the phobia is completely gone, or where I don’t need any accommodations sometimes, but I do hope that I can get to a point where I can still grit my way through the times where people aren’t willing to work with me about it.

(Aside: AH VOICEMAIL. What a glorious invention.)

I forgot one thing! And this is for you too! There’s an Instagram challenge that Two Thirds of the Planet is instigating this year called #365dayswithdisability! Just post a picture of your disabled self/life every day with the #365dayswithdisability tag on Instagram (or twitter, Insta is kind of hard to access if you don’t have a smart phone!) My personal Instagram is @nicocoer if you want to follow me!

Anyhow, I hope this post made you think about your own difficulties with setting and completing goals. Feel free to share those- or even just your new years goals!- in the comments below. Happy 2016!

Autistics Speaking Day 2015: Appliances Talk

I don’t have any great topic to talk about that I’m up for assembling today, so I’m going to write a bit about some of the household appliances that are important in my life, and ones that are helping me live a better life.

Last weekend, my Oster Kitchen Center (which is a stand mixer that can change out parts to be a food processor, or a blender, or…) died. Specifically, the motor burned out.  This mixer has been an important part of my life for the past few years, and I have a strong emotional attachment to it. It was the perfect mixer- two bowl sizes, including a huge one, set so that it can mix even the smallest amounts of egg in the bottom. Able to handle dough and meringue, it was a great treasure for me, a dear friend.

The Oster came from my mother for my birthday a few years ago. She’d gotten it from a yard sale barely used- the woman’s grandmother had given it to her for her wedding 20 years before and it had mainly sat in a cupboard for most of that time as the woman wasn’t a wiz in the kitchen. My mom picked it up for something like $30; a good mixer with a dough-tolerant motor today is several hundred dollars, and that’s without the attachments. (Turns out that kitchenaide considers making bread for your family once a week is “commercial level of use” according to the reviewers who have reached out to their customer service on the more recent models.)

I formed a strong emotional attachment to the Oster. It was a friend to me. Just seeing it in the kitchen and knowing I’d be using it over the weekend would give me a smiling feeling. They say  that autistics might form “inappropriate” emotional attachments to objects but not people. I say it depends on the objects and the people- if the people in your life don’t know you well or don’t accept you but your object is predictable, then of course you will have stronger attachments to objects than people. I have a number of decent people in my life who try to get me that I have an attachment to, but there are also objects that are my “friends,” that I have bonded to emotionally.

The Oster and I were making meringues all last weekend. We were practicing them- my mother is gluten free, and I wanted to try using meringues for her birthday on the 27th. (Happy 50th birthday to my mom, BTW.) And then Monday I started on our final product: cute lids for the custard pies that would spell out “50” over two pies. On the second custard of 4, the mixer stopped halfway through adding the air to the egg whites. I tried the breaker box. I tried unplugging and plugging back in. I even tested the outlet. But it was the Oster’s Motor.

A close up of a pink meringue in a bowl under a mixer

I was devastated. I kept on with making the pies without the meringue, but I kept crying any time I stopped for more than a few seconds. I’m still grieving the Oster, if I’m honest, but a lot of people don’t understand that. The next day my mother let me borrow her standing mixer, but it’s not the same. the beaters don’t reach the bottom of the bowl so you can’t let it take care of things while it beats stuff. it’s harder to add things to. It’s just not the same as the Oster. And it’s not built for the level of baking I use to sooth myself.

I love baking. I love the experimenting and the building of it. I enjoy testing and developing my skills, and the Oster let me do that at a level that matched me. I might only bake on the weekends barring special occasions, but I bake a LOT on those weekends. I make my own bread, I make cakes, I make pies, I try new techniques. Now… I don’t know. It’s more economical for me to get a bread machine and a mid range mixer than a mixer that can handle bread dough regularly. I’m wary though. It will never replace the Oster for me. It won’t be the same. My heart is sick just searching. (And that doesn’t add in the food processor, which I’ll also need to replace since I use it. I have another blender, though.) Rest in machine heaven, my friend. I miss you every time I step into the kitchen.

A white Oster Kitchen Center with the Mixer part attached

The other appliance I’m going to talk about today is my Panda Washer/spin dryer.

I currently live in a second floor apartment. My joints and balance are screwy, so I walk with a cane so that when I fatigue I don’t turn my knees or ankles. I can’t carry large objects up and down the stairs very well or very consistently. Since there’s no laundry in my apartment, I’d also need a way to get laundry to and from my place to the laundromat.

Realistically this meant paying my brother to do laundry for me when it was convenient for him. He tries hard, but I couldn’t exactly be sure I’d have enough clean clothes to get me through if I had to travel. I’d periodically end up having to do laundry in my bathtub, let the laundry drip dry inside of the shower curtains, and hang the laundry all over my place. While not a huge deal to have the laundry hanging around, sometimes for a week before being dry, it’s hard to do laundry by hand.

Then a little apartment washer came through my social media feed. While a little bit pricier than I typically spend on things, it was a small fraction of the cost of a full sized washer, and it had a spin dryer. I ended up talking to my payee person and had him arrange things so I could have enough spending money the next month to purchase one.

My model is a Panda Small Compact Portable Washing Machine (6-7lbs Capacity) with Spin Dryer.  It’s more work than your typical washer but it’s a life saver. Here are the steps I follow:

  1. Making sure that the drain hose is in the sink and the drain switch is set to wash, fill the tub with the fill hose. The fill hose attaches to the sink faucet on one end, and drapes into the wash bin in the other. The fill time is about 5 minutes?
  2. Add a TINY amount of laundry soap. I’m serious, it needs hardly any.
  3. Close the lid and set the timer to the appropriate cycle length. The longest is 15 minutes, and I usually just set it to that to be certain, though it could be as low as three minutes for undergarments.
  4. When the cycle is done, switch the drain switch to drain. This takes about 5 minutes. You can optionally wring the clothes or if you have only one garment in there (like I usually do) you can throw it in the spinner while the wash tub is draining.
  5. Wipe down the wash tub, clean the lint trap and re-secure it, switch the drain switch to wash, and fill the tub again.
  6. Close the lid and set the timer to the appropriate length of time for your rinse cycle. When it’s over, double check that there aren’t suds. If there are you’ve added a little too much soap to the wash cycle and it will need another rinse. If so, repeat steps 4-6 until there aren’t suds.
  7. Drain the wash tub, and put a garment at a time, two max, in the spinner. It will spin out a lot of the water, so you’ll have something that is just damp and can be hung any where without worry. I have washing and spun something one day and been able to wear it the next.  The longest spin cycle is 5 minutes. Make sure that the load is balanced. If it is, after it is up to speed it will be very quiet. If it continues to shake, the load is unbalanced and you need to re-position it.
  8. Hang the spun clothes on hangers someplace where it can dry. There will probably be lint involved, so if you are wearing them to work or other important places, invest in a lint roller?

It is a lot of steps, but it’s a thousand times better than hand washing everything and now that my laundry is caught up, I have less of a stressor. It also is helpful for autistic reasons. I can wear literally the same dress every other day and have it be clean, instead of buying two of the same dress on sale. I can wear exactly whichever of my clothes I want when I want.

If you have easy access to a regular washer/dryer, you probably won’t understand the sheer relief I have right now. (You should probably keep with those if you have access to them- the amount of work involved can be overwhelming for people used to modern washer/dryers.) It is amazing.

small white panda washer next to my bathroom sink. It fits easily into the space and the drain hose points into the sink. The lids are closed and you can see the dials.

The down side is that I can’t wash my blankets in it. It’s not big enough for the spinner to fit the whole blankets. But it can handle individual sheets and all of my towels, and all of my dresses that can be washed in a washer. Another issue is that the drainage hose can seep a little, but it’s not enough to be a huge issue- I just have a towel there that I change out periodically and it’s fine, but buying a washer mat would also work.

You also need to keep a dish towel nearby to wipe down the lid and control panel in between tub fulls. I don’t actually count this as a downside, but some people might. The reason is that the control panel needs to be kept dry.  I had a week where the spinner timer was on the fritz because it got wet, but as soon as it dried out it was as good as new.

I also run a whites or empty cycle with bleach once a week to keep it clean and mold free. I let them soak overnight in the bleach.

So that’s the Panda washer. It has really helped me with my stress levels by making one major task less overwhelming and less unpredictable.

a red circle cross out symbol, crossed out by the same symbol facing the opposite direction in a spectrum of colors, with the words “Autistics Speaking Day 2015 participant”

Read other Autistics Speaking Day 2015 posts! Or submit your own Autistics Speaking Day 2015 post!

AASPIRE, the Healthcare Toolkit, and Why You Should Participate.

Hey everyone, I wanted to share about the AASPIRE Healthcare Tool Kit. This will be a pretty targeted post, but I think it’s pretty important.

AASPIRE is the Academic Autistic Spectrum Partnership In Research and Education, and they use Community Based Participatory Research (CBPR or PAR) to bring Autistics and academics together for research benefiting Autistic adults. This means that they believe that the Autistic Community needs to be equal partners to the research about them with the academics. Additionally they focus on quality of life issues for Autistic adults, and prioritize the concerns of the Autistic community in selecting what research to do and how to do it. Basically, they are working on a model that should be standard but sadly isn’t when it comes to research about us.

Over the past couple of years AASPIRE has been looking at healthcare access for Autistic adults. The first study that they did looked at our healthcare experiences, comparing and contrasting them to the results of not only non-disabled people but also allistics (non-autistics) with disabilities. As some of you might expect, the results were distressing- Autistics regularly have worse experiences and access to care, including preventative care, and more Emergency visits than the other populations surveyed.  Based on this information AASPIRE researchers publish a paper called “Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-Community Partnership” in the Journal of General Internal Medicine. There was also a follow up with 30 Autistic adults for some more in depth questions about access to care, accommodations, and other details. They have a page on their site with more details about this and links to several formats of the above mentioned paper.

From there, AASPIRE started on developing a toolkit around healthcare for Autistic adults and our supporters to use. This study is currently still running in phase 3- more on that in a minute- but the goal is to develop a toolkit that will help us get better healthcare- have a better understanding of our own care, have more successful visits, and better access to care. Part of this involved generating a customized report that they or you could send to your General Practitioner/Primary Care Provider to help them understand what is needed to make sure you are getting the healthcare that all of us deserve. It ranges from access information to information on the sort of support you need to follow up on your aftercare.

As you might guess from my interest, I’ve participated in these studies. I love working with researchers who share my ideas about what research about us should look like, and quite frankly I believe that this particular line of research can help a lot of people. With the Healthcare Toolkit, though, it also provided me with a tool that may care team is actually using. When I gave copies of my report to my MH case manager (who used to be a supports coordinator in the ID/DD system I believe she said), she told me that she wished a lot of her clients had or had had things like it. I had her forward my report to all of my specialists which as I have plenty of health issues is a good number of doctors, some of whom I see a lot less often than others. So far, it’s gone ok.

I’d like to encourage people to participate- your feedback helps them figure out how tools like this could be better, and it provides you with a decent report about what sort of supports and accommodations you need to get the most out of your healthcare visits. Participating can have an impact on your healthcare visits depending on your doctors and who you send it to. It can also help the people who support you in your healthcare, if you need that sort of support, support you. I have my mother support me at a lot of the more complicated healthcare visits I have, and to my first time at a new doctor, so I think the fact that I need that kind of support on there (I think- I did it in late October) but that I am still capable of understanding my care helped. For example my case manager now asks if I need her to come with me any time she schedules an appointment for a new doctor. At my new PT’s they understood right away, either because of a copy of the report OR because of the information that my case manager conveyed from it.

If you are interested in participating, I encourage you to check out the information they have available. You can participate if you are either an Autistic Adult of some sort or if you are a major support person for an Autistic Adult. Make sure you fill out the survey after- you DON’T have to actually visit your doctor to take the survey afterwards. I thought so at first but I was informed by one of the lovely researchers that I didn’t need to have filled it out to take it. In return for your participating, you can get either a $30 Amazon gift card or check after you fill out the above mentioned survey.  I really appreciate that compensation even though I’m someone who participates in these things both because I believe in the goals of this particular research and because participating in research- be it for a scientific study or consumer ones- is a hobby of mine. I know others of you don’t share my hobbies, but between the compensation and the fact that you are getting a free tool to use about your healthcare is, I think, something that could appeal to people who don’t have the same hobbies.

I really believe in this project and I really want it to succeed, and the more people who participate the more significant the information that they get will be.

Lists and doing them sadly

[Content: Mentions of Depression, of Partial Hospitalization programs, and of the feelings/enjoyment/good at charts?]

One of the exercises I learned as a kid about depression involved making a list of the Things I Enjoy Doing. There was also the Things I Am Good At list, and the These Faces on the Chart Match My Feelings Today list. There were lots of other ones, but I’ll stick to these ones because they are the Alternative Coping Mechanism lists.

When I was in a partial program, the day would begin with listing the feelings off the chart of faces on the wall, and this would happen at several points during the day- usually at any transition. Part of it was to track our self assessment, but it was also supposed to help us identify our feelings more accurately, and learn what the facial expressions were for them. If someone showed an emotion “wrong” the teachers would demonstrate “appropriate” ways of showing emotions. If someone chose emotions that flagged their depression screens, we’d have to add an extra thing to the “Things I Am Good At” list. I’ve also seen it listed as a “Strengths” list. Every day, we’d have to come up with 3 things we were good at. It was passable to repeat the same things most days (which I did- I did the same for the face charts most days) though coming up with new ones was a “good sign.”

If I remember correctly, my charts usually looked something like this:

Mood: Apathetic/Ambivalent

Savannah is good at:

    • Animals
    • Reading 
    • Art

I seem to remember a lot of “Ambivalent” on my sheets after a staffer explained what it meant. And I could list off those “Strengths” half asleep by the end of  my time in the partial program.

A lot of time was spent on the identification of “appropriate coping skills.” We had lots of sheets and stories on the differences between passive, assertive, and aggressive responses to things, but like several of the kids in the program I found practicing them difficult- I could repeat line by line the “assertive” response I was taught at home, but if it was my mom’s second husband this was a “behavior” and “manipulative,” so what was the point?

The other was the “Things You Enjoy List.” It was basically supposed to be a list of things you liked doing so that if you began to slip into a depressive episode then you could look at the list and do one of the things to remind you of good feelings- or at least put off the omni-present gloom of a depressive episode for a little while. At the time, my list was essentially as follows:

Savannah Enjoys:

    • Playing with animals
    • working with animals
    • reading
    • doing art

Seeing as how this is basically a re-wording of my “strengths” list, I think that I had quite a few frustrated staff trying to figure things out. I had a dog, maybe more, at home at the time (my pet timeline and my treatment timeline aren’t ones I have attached to each other to be sure,) and I sometimes would volunteer with the support of my Theraputic Staff Support at a local hab aide riding facility. (Though I think that might have been after the partial program…) Since they were trying to teach me social stuff too, having me go read to myself in the corner wasn’t exactly feeding into the treatment goals that had been developed, and there’s only so many times I go from group art session into hyper focusing on my own project to completely miss the group part before they throw their hands up in the air.

The one exception was in the summer when an additional word was added: “swimming.” We would “field trip” once a week if we were there during summer sessions, and usually it would be to the pool. While there was some supervision, it wasn’t close enough to tell the difference between playing with other kids and playing in the midst of other kids in the pool. I lined up in lines to jump into the deep end more because of knowing that if I didn’t the life guard wouldn’t let me jump in at all. But as the pavement left my feet and I plunged into the pool, it was heavenly.

I get why they made us do these lists. One of the things that always ends up on the “things to help with your depression!” lists is “do something you love/a hobby.” And it’s good advice- unless your depression manifests itself by making even things you love unappealing. You know that you really enjoy super heroes, or crime shows, whatever, but when you scroll past them on Netflix or Hulu none of them seem interesting, nothing appealing. You got a whole big stack of Forensic Anth style Crime novels, but starting that first book seems … unsatisfying. You have a massive knitting project that you loved when you started, but you went on hiatus and now that it’s been a while you can’t remember why you enjoyed it.

At least, that’s what it’s been like for me for a while. It’s pretty much horrible- I love being able to invest myself in something I love, completely zone into it for hours and hours on end. I like to hyper focus, to learn a ton of facts that only seem important to me, to have access to knowing everything about such and such a thing, to watch every episode, read every book, listen to every song in a completest fashion. And a lot of times when I’m depressed, it robs me of that. I can’t even get started on binge reading the Tudor book I picked up a few months ago and was so excited about.

For a while, I was working on this by baking once a week regardless of if I felt up to it or not. This worked best with cookies- They are pretty basic to make, but you can also make them as complex as you like. I’m a pretty good baker according to the people I feed, and when I complete something there’s a tiny pop of having completed something- almost like the feeling of gaining experience points in an RPG.

So I know that actually following through can help stymie a depression spiral. The problem is actually following through on doing things. And when impaired Executive Functioning mixes in, identifying those things in the moment is just that much more difficult.

So I’m going to do a bit of a sad list here of things I know I enjoy, but which I might forget about. I want to take this idea that was used a little awkwardly for me in a treatment setting, and rebrand it as my own and as an assistive tech of sorts. If you are reading this and want to join me, feel free to do so whatever way feels worthwhile for you.

This is about helping you. It isn’t about making others feel better about your depression/anxiety/etc. It’s about having a tool to help yourself. The things you write down only has to be things you enjoy, and as long as it isn’t harming others it doesn’t matter what it is. If it’s flapping and rocking for hours, that’s fine. If it’s meowing in your room, that’s cool. This is about you and what might make you feel good, not any one else. Yes, you may want to have a safe, private area to do them (you don’t want to harm people or subject yourself to undue risk/the law) but they are still for you. You can do them in whatever tense you like. I’m doing third person partially because of familiarity, and partially because I want to break off the connection between writing about my care plans in third person and leaving them in the control of service providers and staff who might or might not have my best interest at heart.

Things that Savannah remembers enjoying that she might forget:

  • Baking things. Savannah likes baking things. Cookies are easy.
  • Cooking for other people. This sadly requires other people, as cooking for herself is a different set of brain ordering and decision making, so Savannah rarely makes complex dishes just for herself.
  • Going to the coffee shop to write. Savannah likes the coffee shop and the people there, and even though Savannah is nervous about actually interacting with people who aren’t on her “safe” list outside of advocacy contexts she does like being around people in small to moderate amounts when non-scripted interaction isn’t needed. 
  • Writing. Savannah likes writing, but she can’t get started much of the time because of her Executive Functioning issues and/or self-consciousness. 
  • Savannah likes throwing things when she is frustrated. Savannah has soft things that she can throw in a room safely, so that she doesn’t harm people or objects in doing this when she feels she needs it. 
  • Savannah likes Earl Grey Tea, especially in the Star Trek Mug. The steps in making EGT are: 1) get out cup 2) get out tea bag 3) put tea bag in cup 4) put water in electric kettle 5) turn kettle on 6) wait 7) electric kettle clicks off 8) Savannah pours water over tea bag 9) tea steeps 10) add a little almond milk 11) drink tea. 
  • Crime novels. Savannah can either read them or listen to them on audio book from the library. Savannah has a big stack of Patricia Cornwell books to read. 
  • Sci-fi and fantasy stories. Savannah likes sci-fi and fantasy. Even though she is tired when the TOR.com newsletter comes, she should try to remember how much she enjoys the short stories in there. 
  • Savannah likes vocalizing. This is not the same as talking, but can including singing. Meowing, purring, beeping, meeping, and screaming all are examples of vocalizations that make Savannah feel better. (The screaming is better for up at Her mom’s house in the woods though.)
  • Savannah likes the recumbent bike. It doesn’t put stress on the joints the way that other equipment does. But Savannah both has difficulty getting to it, and has a hard time seeing it as a priority. She also needs to be careful not to over do it, especially when she has stuff to do the next day.
  • Savannah likes certain TV shows. This includes, but is not limited, to: Doctor Who; Law & Order (various incarnations); Criminal Minds; CSI (NY or Original); Bones; Agents of Shield; Sleepy Hallow; Project Runway; Castle; Eureka; Warehouse 13; Numerous genre stuff that the BBC puts out; regency-ish period dramas; American Pickers; Oddities; and so on. 
  • Savannah has a lot of youtube channels she watches. She does like the science ones a lot, but she needs to remember that she also likes the non-science ones she’s subscribed to, so maybe she should watch some of those beyond vlogbrothers and weezywaiter. There’s nothing wring with liking the science channels, but Savannah is often pleasantly surprised when she follows through watching the other channels too. 
  • Savannah likes genre movies. She often forgets about watching them because they seem like more energy than they really are. It is okay is Savannah doesn’t remember what the movie was about later, too. It’s okay to turn it off half way through if Savannah decides it’s actually bad and it’s not about trying to watch it like normal people. It’s ok to get distracted and wander off while the movie is running. 
  • Remember: Savannah particularly likes watching Super Hero Movies, Period Dramas, and The Decoy Bride. It’s okay for Savannah to watch Captain America or any movie as many times as she likes as long as she gets her work done and she falls asleep before sunrise. 

Okay, that’s my attempt at an undated and more useful to me list. What does yours look like?

Why Privacy Matters

… even when you are willing to disclose.

Tomorrow, Friday, April 26th, 2013 there is going to be a hearing about HIPAA. Well, that’s not exactly accurate- it is about HIPAA for those with psychiatric disabilities or seeking psychiatric care. But no, this isn’t an entirely accurate description either. It is about how some people truly believe that those of us who receive psychiatric care and have our HIPAA rights respected are somehow a threat to public safety.

They believe this even though our providers are mandated reporters, people who have an exemption for threats of violence to others or one’s self. They believe this even though we are more likely to be victims of violent crime than to commit it. They believe this even though when we report on the violence of others, our voices and experiences are discounted.

They believe us as such a huge threat, despite evidence to the contrary, so much that they won’t even be having any of us at the table as they talk about taking away our rights. That we aren’t able to be truthful, competent, or able to speak for ourselves to such an extent that Representative Murphey has gone on air with his belief that we would be incapable of testifying and that the most important conversation is one about parents and families’ experiences.

Those of you who follow this blog just for the Autism angle might recognize that sort of language. It’s the same sort of language that made our fight last November to get Autistics on the panel of another hearing so important, and that makes our objections to how we are portrayed in the media so necessary.

I’ve heard from some corners of the autism communities that the issue at these hearings isn’t about us, or that some of the efforts that autistics (and ASAN) are doing around this hearing are somehow conflating “mental Illness” and autism. Setting aside the fact that in some places autistics without ID are only able to access supports through the mental health system, and setting aside the fact that some of us have additional disabilities that happen to be in mental health, I still have to disagree. These are the same issues that we face, the same ways our voices are invalidated and our societal consent voided.

Even where we aren’t also people with psychiatric disabilities (and a number of us are, either by birth or because having society tell you you aren’t worthy tends to be traumatizing) , we should be giving our solidarity to the people who are fighting the same fights. And we are fighting the same fights against ableism, albeit from slightly different angles. We have a stake in this too- because ableism isn’t just actions. It is systemic. It impacts all of us, though often in different ways, regardless of our exact disability. There’s a reason we need a cross-disability movement, and the strength we have in supporting each other is just one (important) part of it. There is a song that goes, “None of us are free if one of us is chained,” and you know what? There is a certain amount of truth there.

There is also, of course, the fact that co morbid mental health disabilities or not, many Autistics will be served through the mental health system. The sort of policies this hearing may engender often don’t care if you are receiving services for mental health. They only care about what the services you are receiving are classified as.

I personally am multiply disabled. I have multiple reasons to care about this issue, and that is just reasons that have only to do with myself. There are even more when I think about the people around me.

I am someone who is all about disclosing. I’ve talked, in the past, about topics that are very personal and are too much information for some people. It’s ok if you aren’t comfortable with that, but I have done it for a reason: for every time I’ve had a comment or email expressing concern that I’ll disclose details of my life, particularly as it relates to medical care, I’ve received one if not multiple telling me thank you.  Because they? They don’t feel safe disclosing and it has left them feeling isolated.

And that’s the thing, isn’t it? That people don’t feel safe, or comfortable, and they feel that way for a reason. it is the same reason that disclosure is currently a political act: because the negative consequences can be so great. People regularly face discrimination when they disclose, particularly when their disclosure is about a highly stigmatized disabilities. There is a reason both psychiatric disabilities and autism are on the list of such disabilities that the Department of Labor’s ODEP put out- people unfortunately are still fired or even denied a hire on the basis of disability, even though it is against the law. Housing, too, can be riddled with discrimination, leaving affordable and safe housing harder and harder to come by.

Even disclosing in the medical community has negative consequences. This past month, we had a prominent, multiply disabled, autistic voice who had to fight medical discrimination to have a life saving procedure. So, too, do people with psychiatric disabilities find their medical needs and wishes challenged. I cannot begin to count the number of stories I’ve heard in which people I know, either personally or through my advocacy, whose medical conditions were ignored or even blamed on their having had a mental health diagnosis. Either way, they faced a denial of timely and appropriate medical treatment, not because of a lack of disclosure between professionals, but because the stigma is so great that when we disclose even medical professionals have their judgement clouded.

Just as other people with disabilities, people with psychiatric disabilities have our abuse and murders excused as treatment. Our families feel justified, or at least are told they are justified, in abusing or being complicit in the abuse of us. After all it isn’t just Autistics being shocked at the JRC– young people with psychiatric disabilities are also sent there. Indeed, there is a whole industry around sending young people with psychiatric disabilities away to isolating and sometimes dangerous camps.

I am someone who takes the risks that comes with disclosure, but no one should have the choice to take those risks taken away. It has far too dangerous a set of consequences to take consent to disclosure away from the people whose privacy it would expose. Far too dangerous to take away the right to privacy of a group that must rely on privacy in order to both get support and to avoid discrimination.

I would encourage all of you to sign the petition that ASAN has written calling out the chairman of the committee for excluding the voices of people with psychiatric disabilities in a hearing that could very well threaten their rights. If you are in DC and are reading this in time*, please try to attend the hearing, even if you just end up in overflow**.

Our privacy, even if we chose ourselves not to keep it, is a right that no one should be taking from us. Talking about doing so, let alone having that discussion without us, is reprehensible.

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* I’m sorry I didn’t get this out earlier. I tried, but kept getting stuck on the endless examples that can be found of both how we face discrimination when we disclose, and how the language that is being used to justify the lack of People with Psych disabilities is used to justify other miscarriages of justice.

 

**I personally cannot make it- not only because it’s out of my budget to go to DC last minute, but also because tomorrow I have to go face the housing system to prove I deserve to keep the voucher that makes being not homeless affordable. So please, if you can, go; there are many of us who would like our voices or at least persons represented, but cannot make it ourselves.

Autistic, Allistic, Neurodiverse, and Neurotypical: Say what?

Coming into the neurodiversity movement, there are some terms that a new person might not be familiar with. I’ve been seeing a lot of questions about some of them, and some misunderstandings about them as well, so it is perhaps time for writing something on these terms.

If you are reading this blog, I’m assuming that you know what Autistic means in a general way. Some of you might still hold some misconceptions about autistic life, but I believe that to be a part of the learning process. You are reading Autistic voices either here or on the blogs of other Autistics, hopefully learning from it, and that is what matters.

You’ll notice that I use “autistic” rather than “person with autism” throughout. This is intentional. The basic idea is that my being is autistic- the patterns my brain form thoughts in, the essentials of the way I perceive and learn from the world are autistic. Autisticness is, for me and many others, an essential part of what makes me, me. Saying I am “with” autism denies this reality.

There are many brilliant writers who have addressed Autistic vs person first language in more depth. Jim Sinclair, one of the Autistic community’s elders, wrote a piece in 1999 on the issue which you can read on Cafe Mom. Many others have echoed and expanded upon Jim’s thoughts since then. Lydia over at Autistic Hoya has written a number of posts on identity first language vs person first, including “The Significance of Semantics: Person-First Language: Why It Matters” which ends with a list of links to other writers on the issue.

Some people’s constructions of how they phrase their identity are very personal, others political, and a good number both. I have multiple disabilities, and have a mixture of phrasing for myself. My own preferred construction is “Autistic with anxiety/chronic pain/etc.” When I expand that beyond ability it gets more complex, but I will leave it at this because eventually listing every part of my identity, regardless of relevance, becomes a metaphorical rabbit’s hole.

Allistic, on the other hand, means “non-autistic.” (Some people use “neurotypical” this way, but I”ll get to why I disagree with that usage in a moment.) That is all it means. It doesn’t mean someone is intrinsically better or worse, and it doesn’t indicate ally-hood or opponent-hood. It just means that someone is not autistic.

Allistic is a term that members of the autistic community came up with. While the earliest mention I can find (Zefram, Fysh.org, 2003) is constructed to work in a parody, the word construction makes a lot of sense. So much so, in fact, that Zefram’s work isn’t known to many community members now using the term. In Zefram’s postscript, it is explained that the construction is based on the way that the word “autistic” is constructed:

The word “allism”, invented for this article, is intended to precisely complement “autism”.
It is based on the Greek word “allos”, meaning “other”,  just as “autos” (in “autism”) means
“self”. […]

This explanation of “allistic”‘s construction continues to be in use. As some might note, the relative constructions of “autistic” and “allistic” are not dissimilar to the relationship between the words “transgender” and “cisgender.”  Even if the alternative was developed to suit the needs of politically charged parody, allistic is linguistically a more accurate term than some of the alternatives.

Neurotypical is often used interchangeable with allistic, but I would argue that it isn’t actually interchangeable. Neurotypical is short for “neurologically typical”- within the typical range for human neurology. Obviously it wouldn’t make sense to say that someone with definitively atypical neurology was neurologically typical just because their atypicality wasn’t that they autistic. Indeed, the Neurotypical/neurodiverse terminology has been adopted by certain segments of the Mental Health consumers/survivors communities for this very reason.

On-going usage aside, from what I recall the initial usage was one that is synonymous with the current “allistic.” However, between the acceptance of autistic cousins (those who aren’t autistic but who have similarities, including those with ADHD) and the penetration of the term beyond the initial communities it swiftly became used more diversely. Eventually, the more diverse (and in my mind accurate) usage meant that a more accurate term for non-autistic was needed. (Which brings us back to Allistic!)

Neurodiverse can have two meanings depending on what it is talking about. When referring to individuals, it simply means that the individual(s) in question have neurologies that are neurologically atypical. AKA, that they aren’t neurotypical. Generally speaking this usage is not used to just talk about Autistics, but is inclusive of other people whose neurology is atypical.

When discussing a population sample, though, it can mean that the neurologies represented are diverse. In this usage, the people in question include more than one type of neurology, and may even include members with individually typical neurology in some instances. This is the less common of the two usages that I’ve seen, though.

I hope that this was useful. For those interested in more information about the origins of certain aspects of autistic culture, I recommend you read Jim Sinclair’s History of ANI, which documents the early days of the autistic culture movement through the establishment of Autreat.

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Personal note: I’ve been a bit distracted so far this month and have had issues coming up with something to write for here- while at the same time, preparing for putting things out elsewhere later this month. That I haven’t done much writing here so far this April hasn’t sat well with me, so I figured it was time to do another terminology type post. This isn’t the best post I’ve written, but it is what I have for you today.

It Goes All Ways

Content: ableism, internalized ableism, mention of hospitalization and depression, mention of denials of reproductive justice to people with disabilities. 

When I was 20, I did not love myself.

I was tired. I had been in and out of hospitals, been under the care of providers hopeful that a pill would fix my brain. I had been told repeatedly that there was something “wrong” with me. That there were somethings it wasn’t “right” for me to do.

I had moved back home, having had my stint trying to be what I thought an “adult” was fail. A lot of my plans had failed: I’d been so unsuccessful at maintaining a home that I became deathly ill; I hadn’t sought out the support I needed at college, and had to drop for lack of funds; and I couldn’t get a job. I saw myself as incapable enough that I wouldn’t be able to kill myself, and went to the hospital again. Case management was better this time than they had been in the past. They were involved, and we worked on a self care plan.

“What about having kids some day?”

I told her I didn’t think so. I feared. I feared that I’d be incapable as some people assume about people like me. I feared that I’d be stuck in a cycle of hospitalizations, and that having a kid would mean they would lose their mother every two years. I feared that I wouldn’t know how to get support— I certainly didn’t know then what my needs were well enough to articulate them. I didn’t even have a strong enough concept of disability to think of it in terms of supports. I just feared, and I hated myself, and I pushed both of those feelings away by ruling out the possibility. I told her no, and refused to engage in that discussion.

People like me aren’t just told these things. Some of us, like the poor and People of Color, are or were forcefully or coercively sterilized in procedures we didn’t want to consent to. Some of us were denied even the knowledge that we had something to consent to. Some of us are coerced with them, denied a valid choice. We are lied to about our health, about our ability. We have our lives reduced to a gene, to things not to want our kids to inherit. We are told that having or keeping our own kids is by definition abuse. We are even sometimes ordered to go directly against our choices, or threatened with those orders. Our attempts to speak back are often co-opted by groups we may or (as in my case) may not believe in. The idea that we might even be sexually active in a way that might lead to us being parents is even seen as remote.

To be clear: I know plenty of people who have chosen not to have kids.  They made a choice to be child free, of their own free will. It’s fine if they stick to it, and it’s fine if they don’t.

I don’t consider my choices when I was 20 about kids to have been of my own free will. My responses were societally coerced. I had so much self hate, self doubt, and fear that I had internalized that I didn’t feel like I even had a realistic choice. I thought that the choices open to me were to abort or put a child up for adoption. I had been told for so long that someone like me would by default be a bad parent, or an incapable one. So I felt like I had to reject the very idea of having kids when it was offered as a part of my future.

Around this time, I became more active in disability rights work. I’d been doing advocacy since I was very young, but hadn’t connected with the larger disability rights movement. I started writing and believing in disability rights, coming to identify as a person with disabilities rather than hiding them where possible. I even, at one point, had a friendship end because the other person kept arguing that people with intellectual and/or developmental disabilities who need supports shouldn’t be having kids. I believed that People with Disabilities had these rights.

I just didn’t believe in them for myself. I had spent too long in choices dictated by fear and internalized ableism, and uprooting that is a long process that never seems to be over.

About 5 years ago, my younger sister found out she was pregnant. She was 16, and it wasn’t intentional. She was presented with her options— I know, as I was one of the people who went over them with her— and she chose to carry and keep her child. I won’t go into too many details about her pregnancy other than to note that yes, the hormones that come with pregnancy interacted with her disability (she has Traumatic Brain Injury). But she made it through, and the actual birth was relatively easy. My niece was born, and was and is gorgeous.

My sister has had the support of our parents and other family members in the 4 years, almost 3 months since my niece was born. I watched (and helped be a part of) the supports that she needs to be a successful parent.  During this time, I became less and less afraid to ask for supports and accommodation, and slowly gaining the words to communicate and to define what my needs were. I also was becoming aware of the “wants” that I had been avoiding thinking about because they didn’t seem reasonable.

I realized that I would like, someday, to raise a child. I began to think about what I would need to have in place to be the sort of parent that I want to be.

There are some problems, though, that I’m more worried about than others. I have some reproductive health issues that sometimes, but not always, result in infertility. It is treated through a combination of medications that includes Hormonal Birth Control. The reason, in fact, that I’m not currently passed out in my shower or vomiting in pain due to this condition is because of those pills. It raises questions, both about how I’d be able to handle/treat my health conditions when trying to have a child, and if I’d be able to birth the child my self. I’d like to, but if I’m not there are other issues involved.

Fertility treatments can be harder to get when you are disabled.  While it is against the law for a healthcare provider to reject someone on the basis of disability, this type of provider can reject someone for personal reasons. The Office of Technology Assessment of Congress did a survey of artificial insemination providers, which is one of several options in infertility treatment. They found that a large percentage screen for psychological, developmental, and chronic health issues when doing tests to decide on treatment recommendations. For example, 79% screen against hypothetical patients with serious genetic disorders. Another study found high rates of doctors deciding against treatment for or rejecting hypothetical patients with various disabilities, including past suicide attempts (around 40% answered likely to turn this group away) and bipolar disorder (34%).  Adoption, too, is more difficult.

And this is just in the seeking to have children portion of things. Even if my health issues have not impacted my ability to have children, biases against parents with disabilities result in higher inappropriate removal rates, unfounded reports, and evaluations that are not built to accommodate the adaptations that a parent with disabilities may have established. The Family Law system is simply not designed in a way that accommodates people with disabilities. (Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children from the NCD has several chapters on these issues.)

I continue to think about supports, as well as the sort of environment I’d want to raise children in. I know that I’d need a partner dedicated to the family we would build. I’m good with kids, even babies, but I do need times where I have breaks to restore my stress, anxiety, and frustration levels. An involved partner would help with this. I might need alarms and reminders, but these are things that are more an more on the market for any parent. I personally want to raise my child in a Jewish home, with a Jewish co-parent. And, of course, for our family to be one that is highly pro-disability rights.

I want to have children. I want to raise children. Even though I’m frightened. Even though people will challenge if it’s a right I, and people like me, should have. Even if it’s not going to happen for a while. Even though it will mean needing different supports than I need right now. It doesn’t negate the fact that I’m pro-choice any more than it would for any other person wanting to become a parent. To me, it is about choice— about choosing the option that is right for me, myself, rather than having my choices about my body and my life made by someone else.

This is a choice that I’m wanting to make and someday follow through on— and finally, it’s of my own free will.

I Was One of the Scary Kids

Content note: ableism, stigmatization of Autistics and other PWDs, the Sandy Hook shooting

I didn’t want to write about the shootings at all. I knew a number of people (who I’ll link to throughout this post) and organizations would be posting and writing, working to counter the inevitable stigma fail that would happen. I even was keeping to commenting on the links of people I care about, people who I know and who I want to have these sorts of discussions with. Then, it happened. I’ll leave the critiques of the post gawker promoted to others, but I feel obligated to make a comment about some of the assumptions it is based on and promotes.

That comment starts with a declaration: I was one of those scary kids.

It’s not some great proud thing to say. It’s a truth, a truth that when I reveal it makes people behave differently. Admitting that you were a “scary kid” means that people heighten their bar of behavior for you even more than a simple disability disclosure does. It makes even normal responses to threatening situations take on a sinister light to others. Telling someone to back off goes from angry to a threat. Pushing away someone who feels entitled to your body becomes violence rather than defense from it.

It makes people suspicious. It makes people question your ability to accurately report crime, abuse, or health concerns. When you are a former scary kid and let people know, they don’t want to hire you in meaningful positions — or sometimes at all — they don’t want you living in their buildings, and they don’t want you learning at their schools. Your opportunities are curtailed. You are told all the things you will never do.

All of these are true of having certain disabilities to begin with, but when you add in a confession of having been one of those scary kids it is heightened.

I was a scary kid. It makes me sad, but only because I actually don’t like scaring people, though I often can’t tell.

Before the age of 14, I was the sort of child that service providers recommend parents to place in a residential setting — that is, juvenile mental health institutions. Parents were — and are sometimes still — encouraged to relinquish them to the state, who would willingly pay for this kind of care. My mother fought it, and demanded community based services and the training my providers needed to provide it. But she was pressured the entire time, and when I was reviewing her records last year I found boxes of pamphlets and packets that she was given to encourage my placement in those settings.

I also found her private journals about our lives at that time. These were journals she might only ever show excerpts from to a therapist, but were meant to be private accounts. It was scary for her. I cried when I read them, because it was horrible to realize that I had made my mother feel so horrible and hadn’t known. I had not realized that anyone would have interpreted my behavior in a truly scary way, that they wouldn’t see the same causes that I was reacting to.  But she was terrified in those pages — the ones she never meant for anyone but herself to read. Even in her advocacy work, she wouldn’t say that certain events were from my life, just that they had happened to “a young person” she knows. Even the things that she was terrified about.

In the pages of that private journal, she talks about the times I would charge at or by her. To me, I was desperately trying to escape a scary situation for me. To her, it was a charging at. I would throw things, and at the time didn’t have the impulse control to find soft things in a safe space. I never aimed at people, but to her I just had really bad aim. I screamed, and I said things that made little sense — I was scared and angry and frustrated that I couldn’t articulate it. These were seen as threats. When I was put in a scary situation, I would flail and push to try to get out of it — and these were seen as violence. When she left on trips, I was taken with her because she was worried what would happen if I was left with a babysitter.

Most of the episodes she chronicled for her private memory keeping were ones that she never saw the cause for. So many start with, “I came home from work, and Savannah…” It took me until into my twenties to be able to articulate what happened before — that her second husband had provoked responses and behaviors. How he would tell me I was fat, lazy, and that I would never be competent. How he would threaten me with sending me away.  How he did any one of a number of things that would set off my behaviors. There’s no coincidence that the behaviors dramatically decreased a year after he left- at 14, I even was off medication.

Not all the behaviors were triggered by him — some of them were reactions that I didn’t know how to handle internally. Some of them were because of how my internal state from incorrect prescriptions made things harder to deal with. Some of them were from being unable to handle fear, frustration, and change internally. Change was a big trigger for me, and set off the start of my fear responses. I just didn’t have the skills to handle those states. I would go on to develop them, but I didn’t have them yet.

For me, those times were scary because of the outside world, because of confusion at people’s responses, and because of people using my being a “scary kid” as a weapon. To her, I was scary and she didn’t know and couldn’t predict fully why. She understands it now — time, observation of me growing up and learning, my finally being able to properly articulate what was happening for me in those times.

My mother doesn’t regret keeping it private, between her and her private journal or her therapist. Today she was at  a consumer and family advisory for our behavioral health managed care organization (BHMCO). They read that gawker article, and my mother was appalled. She has scary stories about me, but the idea of sharing them in a way that associated them publicly with me was a horrifying violation of privacy and good sense to her. She was struck by the negativity of the piece, of the author. And she noticed how it relies on and perpetuates stigma, and jumps to conclusions.

Having been one of those scary kids is scary.

It’s not scary in and of itself. What made it scary to have been one is what people assume based on it — and what they assume when you don’t disclose.

I’ve had people try to justify things from the JRC’s electric shocks to denying someone an integrated learning environment, to defend seclusion/restraint to “therapy” induced injuries and even deaths using my fellow former scary kids as their reasons. The kids with “significant disabilities.” The ways that other people saw my behaviors — things I didn’t know at the time- are the same things I hear from people trying to justify violence and isolation towards kids and adults with disabilities.

They also project forward to futures that are inaccurate, contributing to the problems that us scary kids face when we grow up. They say we will become criminals, or will commit violent crime, that we will be a danger to society. That we are “sleeper agents” of mass murder. They say that of course people who have had such and such a diagnosis, especially when you are also a scary kid, will do certain things or will never do other things. That we couldn’t successfully ever live on our own, that we’ll never graduate, never hold a job for long, will never have successful, healthy relationships. That we are doomed. And while not all scary kids have mental health disabilities (and not all kids with MHDs are scary kids), those who have developmental disorders with the right behaviors are lumped in.

When I- and others who are autistic, have Mental Health Disabilities, or both — talk back with truth, we are denied. When we talk about how having xyz diagnosis doesn’t mean we will do stuff, when we point out that we aren’t mass murderers, we are shut down. When we talk about how yes, mental health reform is important but that it shouldn’t come out of stigma, coercion  and false equivalence, we are told that we are calling other scary kids lost causes. When we point out that we don’t have enough information, we are dismissed. When we disclose, we are called too close to the issue. Even when our mothers join us.

In reality, only 5% — or 1 in 20 — of those in jail for violent offenses entered jail with a diagnosable condition. The other 95% did not present as diagnosable on entry. Most of those with diagnosable conditions are there on non-violent and drug offenses, including a number of which are a symptom of a lack of supports rather than their conditions themselves. Some estimates place the rate of Mental Illness at 50% of the inmate population, and yet only a very small percentage are there for violent crimes.

In reality, these impressions of us make us targets of crimes. People with “Serious Mental Illnesses” are more than twice as likely to be a victim of a violent crime. We are targeted for sexual assault, particularly if we are or are seen as women. We are likely to feel stuck in abusive relationships, or to have people use our diagnostic status as justification for abuse. And that is just the violent crimes  — we are astronomically more likely to be victims of personal theft, and 4 times more likely to be victims of property theft.

In reality, the stigma and stereotypes that people are promoting mean discrimination in employment, in housing, even in healthcare and courts. It means having people turning their backs on friendships and relationships when they find out, even if you are relatively stable now, even if you have the supports that make it irrelevant. It means people leaving if you have a setback that they would stand by someone without your diagnostic history for.

It is facing stigma, or hiding from it, sometimes at great cost. I certainly made a lot of poor choices based on trying to hide having been a scary kid, even when I wasn’t hiding having Mental Health Disabilities.

Being a Scary Kid isn’t certain doom.

They told my mother and I that I would never graduate high school and I’d never get into college. Some speculated I’d need to live in a group home or a more intense, and that I’d never live on my own. Some thought I’d get sucked into crime based on my psych history alone. Some said I’d off myself before I turned 18, 21, or 25.

I graduated high school — my siblings, the non-scary kids, dropped out and either have or are working on their GEDs. I even aced a number of classes, and other than my last semester (which was sucked up in depression) was pretty much tops. I’ve had some unsuccessful attempts to live on my own in the past, but those had to do with daily living skills more than being scary. Right now I’m living relatively successfully on my own, even if it did follow a period of homelessness. I did get into college easily, even if I had to drop out for a mix of financial and ADL deficit reasons. I’ve never been in jail.

I celebrated my 25th birthday in August. I am alive, and though my health isn’t the best I am surviving and working towards my own personal wellness.

I have little in common with the things they assumed. My scary is now just the normal stigma that any of us, autistic, with mental health disabilities, or both, face. I do struggle, but not in the ways that were assumed when I was a scary kid.

Being a scary kid is just that — having behaviors that scare people when you are a kid. It doesn’t mean you have a particular diagnosis or neurotype. It isn’t predictive of being a mass murderer or anything else- heck, a lot of the people who are mass murderers, diagnosed with something or not, didn’t reach the heights of being “scary kids” when they were younger. Not scary the way I was, or others were.

When I point out to try not to link scary kids to criminal violence, particularly of the mass murder sort, I’m not saying that services and supports aren’t needed. I’m saying that they would be even if we never had a massive violent event. I’m saying none of us are doomed, if only we combat stigma and prejudice at every chance, be it ableism, racism, or classism that we are talking about.

When I tell you no, I mean that none of us are lost causes.

Mother

I don’t really talk about my mother on here too terribly much- though if you talk to me on facebook or twitter or any of the “social” media I do- especially in comparison to talking about her ex, aka Rick aka her second husband. But there’s a reason for that- because she for her part did well with me.  I’m not saying she’s perfect- she does indeed struggle with some of the attitudes that she’s internalized about abilities and supports- but she was still amazing.

Last fall, my posts about intent, and about how the parent movement tends to erase or drown out Autistics, had one person remark that I was arguing that parents are a part of the problem. Actually, I think it was “are the problem” but . . . yeah. I don’t think parents are the problem so much as that their voices and ideas are too often prioritized of that of the PwD that they are parents to. Indeed, I recently attended a rally full or parents with great intentions- intentions of undoing the cuts to services in my state. But they felt it was okay for them to over talk the time limits when self advocates didn’t, to use patronizing language about their adult children, and to erase the efforts of self advocates with Developmental and Intellectual disabilities around some of the laws that protect our rights. Really it’s a perfect example of what the problem is- that we live in a society where these things are considered okay. But I digress.

History

My mother worked pretty hard at advocating for me in school as a kid. She even got heavily involved in advocacy around service provision, as the county tried to say that I would need shipped to a residential facility (which is an institution for youth, essentially) to have my needs met. My mother worked super hard to keep me at home and in school, even when we were being told that even graduating high school might be a “pipe dream.” (Hint: I’m the only one of my siblings to have graduated HS. My brother has a GED, and my sister is still working on passing the GED.)

She also, during the time that my behaviors were the most difficult until she married her third husband, was the primary wage earner in our household.

But beyond all this, she instilled some of the basic principles that have gotten me to where I am. She respected my wishes and goals about school, and later on- around age 14- about medication. She encouraged me to be involved in advocacy, including asking me to be on my first panel at age 12. But beyond that, she taught me a bit about how it is our civic duty to work for what is just.

 Current

Now she has her own needs disability wise. She can’t do the driving she used to without being in extensive pain. She has to do a lot of self care to stay off of medications. While she supports when and where she can, she actually isn’t able to do as much as she used to. And that is fine- it has to be, if we are living the sort of life that matches what we believe about access and self care and  love.

We are relearning what it means to support each other as our needs change and grow. I’ve had my skills and abilities vary greatly in the past 7 years. I can actually articulate the things that happened to me better, and as a result my mother is learning more and more about what happened when she wasn’t there, and what I’ve tried to communicate but couldn’t in the past.

At the same time, though, I’m not as easily verbal as I was. It takes more effort to say things verbally, even though I have more words and a better grasp for them now. While I don’t pretend I have nothing to say to avoid letting people know Words drop out on me, they do drop out more often. (We think this is because of the amount of stress I’ve been under with housing). I also have had my anxiety around phone use spike.

When I was little, I pantomimed what I wanted when the words couldn’t come, and she thought it was a game I played. Now she knows, and I’ve had a chance to explain that it was never a game on my side. As I got older, if I couldn’t verbalize what I wanted I pretended that I didn’t want or need. Now, I can send her a message on facebook at any time, and she will respond no matter where I am- across the country or across the room.

Over the past year, my relationship with my mother has shifted around, become more complex on some levels and yet simpler on others. Simpler, because we now both know that the standards for communication out in “normal” land aren’t suitable. Complicated, because her roles have changed along side her needs. And while her role shift went smoothly on me being my own advocate, being able to balance asking her for help with respecting her own needs as a PwDs isn’t smooth at all.

In example

When I contact my mom over facebook, for a long time I had to initiate. And then one day, from across the room, she sent me a message asking me a question. It wasn’t a complicated one, it didn’t need an elaborate explaination or links to make sense. Indeed, it was something mundane. But the fact that she was willing to ask it in what is essentially “my” lanuage instead of hers and waiting for an answer? That was pretty amazing.

I love you mom. And not just for your kitten pictures.

I reached out to a number of bloggers to write about mothers, relationships with parents and parent figures of choice good *and* bad, and what it means to express familial (family) love as/with Autistic and Neurodiverse people. I will post links later in the week, but this is both for our community and as a huge mother’s day gift.

 I’d also like to remind everyone that it’s International Autism Acceptance Year (IAAY) April 2012-April 2013, and that all this year, various community members will be doing projects around it, thanks to the organizational skills of Paula Durbin-Westby.

Stimming in Public (and Breaking All the Rules)

I recently put together a video of me Stimming in Public. Regardless of the reception (which has been great!), it has always been intended as an ongoing project for this year.

If you have been following me on facebook, you might have already seen the video I recently put out. In it, I document myself stimming in public spaces during my recent Baltimore, MD and Washington, DC trips, all set to “America” by Orphan Songs. (I really liked the song, and feel so glad that the artist had it up for Attribution and Share Alike use via Creative Commons.)

Some of it was organic- I was there, and happened to think of pulling out the camera on the train, at baggage claim at BWI, and at the Baltimore Waterfront. Others were planned in that I went there with the intent of shooting some video. I spent a long sunny day at capitol hill filming at the Supreme Court, the Capitol building, Library of Congress, Department of Health and Human Services, and the Department of Education. It was both exhausting and satisfying, not just as an art effort but also as someone who was made to feel scared of the potential actions that could be done in the name of these places.

(There are captions at youtube of the song, even if they don’t make it in the embed.)

This, as I’ve mentioned, was never intended to be a one-shot thing for me. I mean, I’m going to be doing the stimming when I’m in public anyways, so I might as well film it in case it does something positive for someone else, right?

Therefore throughout the year 2012, I’m going to be putting together a video of me stimming in public for every major trip. I’ll try to get some interesting/meaningful locations in when I can, but most of it will just be what I have access to since almost all of my traveling is for advocacy events.

Between now and July1st, I know I’ll be going to Harrisburg, PA; Chicago, IL; Seattle, WA; Woodburn, OR; and Detroit, MI. Later in the year I’m hoping to get back to Washington, DC and to visit family in the area of New York, NY; Wallingford and Hartford, CT; Providence, RI; and similar locations. (I’m really hoping on the CT-RI trip to get a chance to film with some people in front of the JRC!)

If I get more things scheduled later in the year, I’ll be filming at those as well. It’s basically an every-chance-I-get thing for filming these. I mainly will be doing them on my own, though I hope as the year goes on to be able to have multiple people in the shots with me. Indeed, I’d love towards the end of the year to have a chance to film a bunch of people stimming together at once. I think it would be really. . .  evocative, to end a series with a community together, when it started with me all by myself. But that’s just a thought, not a plan.

That is the project summary.

I don’t want to act like this is an idea that is exclusively mine. First of all, I’m sure I’m not the first person to think of it or do something like it. Secondly, all I’m doing is filming myself living life as myself, something I hope to have be a reality for all Autistics. It’s scary, but someday it won’t be. Someday I hope to meet young Autistics who were never afraid to stim in front of Authority, who never had to deal with the ableism it can be met with. Autistics who won’t have to make the choice between safety inside of their heads vs safety from people’s bigotry outside of it.

That being said, if you decide to do something similar, let me know! I’d love to see members of our community going out there and doing this if they feel so inspired. I feel like that would be something amazing to see.