Signposts

On Tenterhooks– In a state of uneasy suspense or painful anxiety.

I most think of tenterhooks in the middle verse. Being Bipolar leaves me with a sense of anxiety because I know that, even though I’m medicated, a depressive or a manic episode can show up at any time, with little warning.

The thing about being depressed is

That it slowly and sneakily tells you that

There is only one way that you can go.

Depression’s signpost has one direction

And that is down.

The thing about bipolar disorder is

That it convinces you that there’s no middle ground

And that ricocheting is your reality.

Bipolar’s signpost has two directions

And that is high and lows.

The thing about life is

There are more than one or two ways to be

And so many of them are good.

My signpost has an infinity of directions

And they are waiting for me.

How To Meesh Redux

My blog name, Stimtheline, was created to reflect the fact that I walk, and frequently cross over, the line between Autism and Eating Disorders. I spent almost two solid years in Eating Disorder treatment, and for the first year, we didn’t know that I was Autistic. Once I was diagnosed, everything about my treatment changed, because your typical one size fits all Eating Disorder treatment just does. not. work. for. me.

My first time in treatment after the Autism diagnosis, my wife created a document called How to Meesh for my team, which included a psychiatrist, a therapist, and a dietitian, so they’d have a better chance of success in working with me.

I thought I’d share it with you, as it’s a kind of interesting look into my brain, and it also shows how much eating disorder treatment needs to be altered to ensure the success of autistic patients.

How to Meesh

Meesh is very literal.  She will take the most literal meaning from anything that is said to her, and does not catch many non-verbal cues or implied intent.

This means:

  1. Please try to speak in complete sentences or phrases. She gets easily lost when someone talks for an extended period of time, or does not make a clear point.
  2. Be blunt /get to the point – She does not catch subtle hints or direction.
  3. Please be prepared to ask a lot of questions! Meesh does not often volunteer information, and does better with directed questions, and help making plans or lists.
  4. Please Listen! If something is bothering Meesh enough for her to bring it to your attention, she will be very frustrated if she feels like she wasn’t listened to or heard. One of the things she has worked on since her last ERC stay is “using her voice” but she still has a very hard time expressing how important things might be to her. (Jess will reach out if Meesh has tried, but there is a problem that isn’t being addressed)
  5. If you want her to do something, she needs you to clearly tell her your expectations.
  6. Tasks and goals that are general or broad tend to confuse her, she needs them broken down into individual steps or actions, otherwise she will not understand how to do what is being asked.

WORDS MATTER!

“Are you willing to?” Instead of “Do you want to?”

Meesh will respond to the literal meaning of words like “want to” or “willing to”.  This often means asking her the same thing multiple times, if someone starts asking if she wants to do something (this generally has implied intent), but you will get a better answer asking if she “will” do something, because she rarely feels that she “wants” to do things that she finds unpleasant or tedious.

“Experiments” instead of “Challenges”

We have found that rather than talking in terms of “challenges” to behaviors or meal plan changes, Meesh responds really well to “experiments” and the idea of setting up a scientific-like approach to trying a new strategy or approach a couple of times and reporting back on the outcome.

“Impressed” instead of “Proud”

Meesh does not seek much approval from others, and she has a negative reaction to people who congratulate her or tell her they are proud of her for things that she doesn’t believe are actual accomplishments, like doing things that are part of her normal daily expectations from her team.

Signs of overstimulation:

  • Stims like rocking, shaking head, saying “no no no no no”
  • Jumping at every noise (hyper alert)
  • Can seem completely unaware of her environment.

 

First Line Solutions:

  • Leaving the room if a group of people is too noisy or otherwise contributing to her sensory input in a negative way.
  • Music through her headphones.
  • Ice pack on chest or neck.

If first line solutions aren’t enough:

  • Dark quiet room
  • Weighted blanket or lap pad (she has a lap pad with her)

If Meesh isn’t given the opportunity to avoid overstimulation, she will have a meltdown, which can involve crying, yelling, extreme sensitivity to touch and sound, and can possibly result in self harm.

For Meesh – Anxiety and Overstimulation are sometimes linked.  If her anxiety levels are high, she has a tendency to be more sensitive to sensory input, and can become overstimulated.

Autism vs. Anorexia

Autism

  • Sensory issues with touching foods that leave anything wet or sticky on her hands when she is unable to immediately wash it off. (This makes sandwiches and wraps challenging). This also leads to her using her napkin to clean hands after each bite if she is trying to use her hands.

 

  • Foods with “grainy” textures are very problematic – for Meesh this means foods like applesauce, couscous, gritty sauces, multigrain bread.

 

  • If the food (in treatment) is not what is scheduled, she will refuse to eat it, or melt down, possibly both.

 

  • Repeated foods, meaning having the same thing twice on the same day, is very difficult for her, even when not struggling with the ED.

 

Eating Disorder Related (there is overlap)

 

  • Some of the food related rigidity is ED related. However, she does have a lot of texture related preferences that are more Autism. If she’s talking texture, it’s less ED related.

 

  • Precise attention to time of meal. She will only allow a 15 min variation from the “scheduled” start time of a meal at home, or she will skip the meal.

 

  • Obsession with the idea that food “artificially affects her weight” because food has mass, and by eating it, she is adding that mass to her body.

 

We implemented these during my last stay in Higher Level care, and it was incredibly successful! I left Higher Level care in August of 2016, and I’ve been completely Outpatient since March of this year. Recovery with Autism is still challenging, but I’m stable right now, so my team is happy. And so am I!

I’m basically an Autism and Eating Disorder expert at this point, so if you ever have any questions, please contact me, and if I can’t help, I can help you find it. Eating Disorders are serious business, and there are more than just Anorexia and Bulimia. Binge Eating Disorder and Avoidant Restrictive Food Intake Disorder (ARFID) are just as deserving of help and recovery.

The National Eating Disorder Association (NEDA)

BEAT Eating Disorders

4 Autism Stereotypes I fit and 4 I don’t 

So if you missed my Monday post, let me fill you in. In a one sentence summary, I talked about the harmful effects of stereotypes, and the importance of positive representation. I’m a little biased I suppose, but I think it was a pretty good essay. In writing it, it got me thinking about which autism stereotypes I fit, and which ones are definitely not me. It was actually really interesting. If you’re up for a session of introspective self awareness, I highly suggest it!

Do Fit:

1. Autistic people can’t live independently: The last time I lived alone was my first semester of college, all the way back in 2005. To say that it went badly was an understatement. I spend most of my time hiding under my bed, I forgot to eat, and I had to drop a class because I just plain couldn’t find it. Thank goodness I met my wife that first semester. Even when we were just dating, she had an innate talent for recognizing how she could assist me. She’s been called my interpreter to the world, and I think that’s one hundred percent accurate. But still, my caseworker has advised her not to leave me alone for more than 24 hours. If everything went exactly to plan, I’d be fine, but if something went wrong, if my routine was messed with, we can could end up in a position where I forget to eat or go to the bathroom. I’m working on independence in Occupational Therapy, but right now, it’s not my strong suit.

2. Autistic people sit in corners and rock: Ok, so it’s not always in a corner, but I am totally a rocker. Interestingly, I have different rocks for different things. If I’m rocking side to side, there’s no need to worry, because it usually means I’m just bored. If I’m rocking front to back though, that’s problematic. It means I’m overstimulated or that I’m about to melt down. Luckily, there’s are several people who can interpret my rocks and intervene if necessary.

3. Autistic people connect more to animals/object than people: Ask my wife to tell you the story of the time she threw away my shoe-box. It was early in our relationship, and she hadn’t yet experienced all of the autistic quirks that I come with. She threw away the box from my new shoes, and I sobbed. For two hours. I felt so guilty that they might think that I didn’t believe they could live up to their potential. So clearly, I experience hyper empathy with inanimate objects. And it’s not just your standard ‘my stuffed animals have feelings ‘ (they do!), even statues and cardboard boxes have feelings. My favorite street sign’s name is Oliver and I say hi every time I pass him!

4. Autistic people don’t make eye contact: So there are a lot of people who would say that this answer isn’t accurate. That I do make eye contact. In fact, they saw me do it last week, and am I sure I’m really autistic? I know I’d break their tiny little neurotypical hearts if I told them that every time they think I’m making eye contact with them, I’m just staring at the bridge of their nose. This knowledge might destroy their fragile little minds. All this being said, I can make eye contact. But it’s not intuitive, and reminding myself to do it every 10 seconds takes up a lot of energy. It’s also a bit uncomfortable for me, so I only really do it with people I know really well. Since they know me as well as I know them, they don’t find the sporadic eye contact weird. They’re just happy that it’s genuine.

Don’t fit:

1. Autistic people don’t have friends: I considered myself very lucky because I’ve never experienced bullying. Or if I have, I didn’t realize that’s what it was. This is a viable option, I’m not the most observant when it comes to social stuff. But as unaware as I am about socializing, I have always had friends. Granted, I’ve never been the one to start the friendship. The pattern in my life has been, an outgoing and extroverted person decides they want to be friends with me, and initiated contact frequently enough that eventually it becomes part of my routine, and a friendship forms. On top of being extroverted, many of these people have a talent that I wish more people had- the ability to accept that my social skills are atypical and my connections hard won, but they are still good. It may be difficult to be my friend sometimes, but there are upsides too.

2. Autistic people are savants/intellectually disabled: For whatever reason, people have a tendency to think that autistic people have either very high IQs, or very low IQs. The idea of an average autistic is almost as much of a white whale as the idea of an autistic adult. This sort of makes sense to me. Autistic people are only of interest if there’s something different about them. Which is totally unfair to those of who haven’t been given the Hollywood treatment. Autistic savants are rare, and are not even a little bit like the one’s shown in movies like Rain Man. And intellectual disabilities have been separated from developmental ones for decades now. Essentially, some people do have both, but a majority only have one or the other. I test well (the tests are mostly puzzles, and I love puzzles!), but my IQ doesn’t measure my social abilities, my ability to live independently, or my mental health. This is a problem that diagnostic professional are still working on, but since we won’t get any new changes until the DSM-6 comes out, we’ll just have to advocate for ourselves.

3. Autistic people have no sense of humor: In my opinion, very few autistic people fit this stereotype. Even if someone’s humor isn’t exactly your standard fair, it’s still considered humor! That people said, some types of humor are more accessible than others. Sarcasm can be hard for some people, not just autistic people either! It require tracking and recognizing a lot of different communication queues, which takes time. There’s definitely been times where I realized something was sarcasm 15 minutes after the fact; it took me that long to put it all together. I definitely use humor in my day to day communication. It often makes more sense to me than small talk and other types of interaction. Not to mention, making someone laugh is a really good feeling! Especially with people I know really well, being able to target their sense of humor makes me feel connected.

4. Autistic people are suffering- I am not suffering. No matter what certain organizations would lead you to believe. Are that parts of autism that are painful? Yes. Frustrating? Double Yes. Confusing? Triple Yes. But those aren’t autism things, those are life things. And when I say these things, there are always people who will pop and and say “Well you don’t count. You’re not one of THOSE people with autism (note the use of person first language. Ugh.) You’re not one of those poor souls who can’t speak or communicate of wipe their ass or love their poor suffering parents. They think this because they’re not looking at this from a neurodiverse viewpoint. Speaking is not the only way of communicating, and I can only speak from my own experience, but when I need assistance with things, it doesn’t feel like suffering. It’s just the way things are. Some autistic people may feel like they’re suffering. And that is their experience, and it’s a thousand percent valid. But I’ve been the way I am for 29 years, and my life is my life. It has its ups and downs. And downs don’t necessarily mean suffering. At least not for me.

 

Being Represented

 Anyone who’s ever turned on their television has already been influenced by autism stereotypes. From Rain Man to Sheldon Cooper to Dr. House, for whatever reason, writers seem to pick the same few autism symptoms, magnify them, and then use them as their character’s only defining traits. Its infuriating. Because the majority of people know what little they know about autism from TV and movies, and if all the autistic characters they’re exposed to are basically the same, then it makes sense that they’ll assume that all autistic people are the same. That these fictional characters claim to represent all of us. And I don’t think I’m alone when I say that I’m not ok with the way that I’m being represented.

They say if you’ve met one autistic person, you’ve met one autistic person.

Stereotypes exist for a reason. It’s easier for our brains to group things together to make them easier to understand. I get that. I feel like I’m guilty of it sometimes too though. Am I stereotyping neurotypical people when I use the same scripts on all of them? When I run my Polite-Self Program, am I a bad person for not evaluating people individually? I hope not. I know that it’s impossible to never stereotype anyone, ever, and that some stereotypes are more harmful than others. I believe the majority of autistic stereotypes are harmful not only to autistic individuals and the autistic community, but to neurotypical people too, because by making assumptions about us, they miss out on interacting and connecting with us as individuals.

All this being said, I know I fit some autistic stereotypes. It doesn’t really bother me, unless people start using it to make assumptions about me. I definitely don’t like that. No one likes that.

So I guess the major question is, when does a common trait turn into a stereotype? I mean the DSM 5 A criteria requires deficits in social communication or interaction. No one’s really going to argue that autistic people have trouble with social stuff. Yet, we don’t appreciate the stereotype that all autistic people are bad at being social. Are socially awkward. Struggle with relationships. I know that I hate it when people mention that I’m good at conversion, so good, in fact, that they’d never have guessed I was autistic! I know enough social rules to know that I shouldn’t reply that that’s not a complement.

I think my problem with stereotypes like these are that people often pick an autism stereotype, and assign that as an autistic person’s main personality trait. I’d love to see an autistic character who had social deficits, but was good at mimicking neurotypical behavior. Watching them figure out scripts, constantly reminding themselves to make eye contact, and collapsing once they are home safe from the exhaustion of it all. That’s the sort of interpretation of stereotypes that interests me!

How about sarcasm? If you believe the media, not a single autistic person in this world understands it. And that is true for some autistic people. Sarcasm is hard because you have to realize the other person is saying the opposite of what they mean, fast enough to be able to pick up on the tone of voice that makes it sarcasm. Most people don’t have to think it out like that, but sarcasm is complicated! Interestingly I’ve also met autistic people like me, who struggle on some level interpreting sarcasm from others, but frequently use sarcasm themselves. Don’t worry, it confuses me too.

I think what I’m trying to say in all of this is that stereotypes suck. And when anyone uses stereotypes to represent a group of people, assumptions are made, feelings are hurt, and everyone loses out. I’m not trying to argue that all groups have something that equates to an (almost) universal experience. That’s what a group is. But I think that framing it as commonalities instead of absolutes helps people see similaries between themselves and others, and facilitates connections. Which, by the way, we can make, regardless of what the media has told you, I think that no matter what minority group a person belongs too, it should be a Right for all of us to be positively represented in our communities and in media.

So writers, directors, producers, get on it. Learn about autism from autistic people. Listen to what we want to see, and let us help you get it right. We’ve been waiting. We’re still waiting. We’re ready. Are you?

Executive Dysfunction: Theme Weeks

Once upon a time, nine months ago, when my little blog was littler and newer, I put up a page called Theme Week Outlines. At the time, I was transitioning out of an Eating Disorder Intensive Outpatient Program, which kept me busy 3 hours a day, 4 days a week. I don’t do well with transitions in general, and especially ones that leave me with a sudden lack of structure. So my team and I started brainstorming ways that I could keep some semblance of structure while I moved to outpatient care. We discussed volunteering, which at that time wasn’t really doable, seeing that I wasn’t handling new situations very well at the time. We tried to plan out a very structured hour by hour schedule, sort of like what I was used to in Residential care, but it didn’t really work well with my home life. Finally, we hit on something that worked. The idea of giving each week a Theme.

And so Theme Weeks were born. After assigned the theme, I had the very enjoyable challenge of finding four activities that fit within in. An outing (which forced me to leave the house), a food (which challenged me to cook, and to try to things), a craft (which was just plain enjoyable, honestly) , and a sensory project (which can really hard, once you get past slimes and doughs and water beads. Also, most sensory tutorials out there are aimed at toddlers).

It was a little rough at the beginning. I over-planned. I overestimated my abilities. I picked recipes that were too hard, or ones that were impossible to succeed at. Remind me to tell you about my Vampire Teeth cookie debacle some time. I did eventually get into a good flow.

Very cool Theme Weeks have included Inside Out Week, Weather Week, Lego Week, Batman Week, and Knitting Week. Batman and Weather Weeks produced some very cool art, during Inside out and Knitting week we had very cool Cake Ball based recipes, and during Lego Week I put together an awesome AT-AT that now lives on my desk.

What makes Theme Weeks work for me is kind of threefold. I’ve come to find the planning really enjoyable, even if it’s turned me into a Pinterest fiend. Interestingly my Theme Weeks board gets a lot of hits! It gives me structure to my week, without forcing me to plan out every single thing that I do. So some structure, but not too much structure. It’s a delicate balance for me. Lastly, I get to spend time with my wife (because she likes these activities as much as I do) and I get to produce things that I’m proud of! Sometimes being unemployed can eat at your self esteem, but when I successfully make art that can hang on our walls, food I can share with friends, and crafts that fulfill my sensory needs, it makes me feel really good.

I would highly suggest some version of theme weeks for Executive Dysfunction. Having a small pool of activities to choose from means that I’m a lot more likely to be able to pick one. Also, after a few successful weeks, getting myself to get started on an activity is a lot easier, because I know I’ll feel good after doing it. I’ve also found that after using the Theme Weeks as training wheels for planning, I’ve been able to expand my new skills to be more successful at trying non Theme Week situations.

So give it a try! The Theme Week page is up at the top, with some descriptions, along with a PDF of the planning page I use. If you have any questions, feel free to contact me, and if you end up with any interesting Themes or Activities, I’d leave to hear!

P.S. Is it just me, or does Theme Week not look like words anymore?

Identity: Nothing

When I saw Identity I thought

Well that’s perfect

Identity is all I write about.

But I thought and I thought and I found

Nothing.

I dug deeper and deeper

Through the autism

Past the eating disorder

Quietly skirting the edges of trauma

Then I swam through the murk of Lake Non-Binary

And still.

Nothing.

I can spit out a

Thousand words on fragments of myself

But they won’t fit together

And I can’t get rid of any of them because they’re

Me.

Turns out too many somethings can sometimes look like

Nothing

 

For now I am content with being

able to identify my fragments

 

And know that as long as I have them

My identity will never be

Nothing.

 

 

 

 

6 Word Stories pt.10

So this was super busy, mostly in a good way! I got to engage a lot in not only current special interests, but a past one as well! My local Science Center does pop culture events, and this month was Buffy the Vampire Slayer, which was a hardcore special interest of mine a few years ago. Buffy did a musical episode, so they played it on the Omnimax screen and we did a sing-a-long! I also played Dungeons and Dragons this week, and started thinking about if it was possible for me to play a non-autistic character. Musings on this to come next week. Lastly I’ve been spending a lot of time with my Bullet Journal, to the point where I cramped up my hands. Needle in my hip aside, it was a good week!

 

  • Needle in hip-no clever quip.
  • It’s fun when baking projects backfire!
  • Exciting news makes me bounce!
  • Sing-a-Longs totally count as good loud.
  • Is my D&D character autistic too?
  • Should my special interest cause injuries?
  • Sometimes little kids just get it.

 

Executive Dysfunction

If you were to ask me to pick the most autistic thing about myself, it would probably be a tie between sensory issues, and executive dysfunction. Unlike the sensory stuff, which I’ve always known I experienced differently than other people, I had never heard of executive dysfunction until about two years ago, when I was pursuing a formal diagnosis. I had always thought I was lazy, and unorganized, and an A+ procrastinator until the psychologist interviewing me started asking me all of these questions about how I learned, and how I retained information, and how I motivated myself, and after about 20 more minutes worth of questions, she informed me that I exhibited signs of Executive Dysfunction. Which I promptly went home and googled, because those aren’t two words you hear together very often. After inhaling everything the Internet had to offer, I was immediately relieved. I wasn’t lazy. ‘Smart but lazy’ had basically been my go-to identity for most of my life, but I had no reservations setting it aside. After a week of basking in my new ‘not lazy’ personality, I realized that not being lazy was great, but now that I had a word for what was wrong with me, I should probably figure out what to do about it.

Oh and do something I did. Many somethings, in fact. More than would be humane to tell you about in one post. So my plan is to break it down into a few posts. The first one, you may have seen on the blog already, it’s a page called Theme Week Outlines, and it was one of the first things we tried, and it’s still going strong! I also plan to include a post of Executive Dysfunction Hacks, a post showing how I use my Bullet Journal to keep myself calm and organized, and post talking about how having 3 whiteboards for calendars, lists, and reminders is definitely not too many. I’m slowly learning how to do executive dysfunction things on my own, but I’ve got to give credit to my wife, Jess, for enduring years of questions about how she breaks things down into steps, and how she makes lists, and what do you mean she can decide she wants to do something and just do it?!

I’m hoping to spread these posts out over the next month or two, so as not to inundate you with all executive dysfunction all the time. If there is any interest, I may host a Ask An Executive Dysfunction Superstar type thing where Jess can answer all your weird and random questions. Because I swear, I have never met anyone (not even my occupational therapist!) who is more creative about this sort of problem solving. So please, come pick her brain!

The Buddy Song

So about a month ago, I had a very bad day. All of the things that I usually manage pretty well were just off the charts. Every little sensory thing was bothering me, I was rigid about anything and everything, and I was semi-verbal at best. Not that any of that is inherently bad, but it made me really stressed out. And my wife, well, over the years, she’s learned a lot about the best ways to help me on days like this. And even as overwhelmed as I was, I also held a strong feeling of appreciation towards her. Because she’s awesome. The next day, when I got my words back, I made a declaration to myself. I’m going to write a poem! It’ll be a deep and meaningful spoken word piece, and it’ll say everything that I’m thinking and feeling.

Yeah. So that didn’t happen. It turns out that I’m less of a deep spoken word poet and more of a bouncy rhyming couplets sort of poet. I fought the rhymes for a while, but eventually I gave in. It still basically said what I wanted, and after my wife read it, she immediately declared that it would make a great song. So we broke out the ukulele, she figured out some vocals, and pretty soon, we had a bouncy, rhyming, 4 chord song. Which I never planned to let anyone hear. I bet you can guess how long that lasted.

I ended up playing it at church this morning, during a service about how to be welcoming. I read a poem for a member of my young adult’s group. He is a much better poet than I, but is also nonverbal, so he usually asks someone to read for him. His poem lead into my song well, and I think the two of us did a really good job representing the Neurodivergant Community. I also got to talk to a few parents of autistic kids, which was really cool! Anyway, here’s a video of the song (I’m the one with the ukulele hiding behind the music stand. My wife Jess is the one with the awesome voice.), and lyrics below.

Introduction

Our people don’t realize what they do for us sometimes

They know how to communicate with us

They can tell our happy flaps from our anxious flaps

They know that the blue bowls are only for cereal

They can interact with the world- then filter it for us

They are there when we need them

(And hopefully they feel the same way)

 

The Buddy Song

Do you have your buddy

It doesn’t matter who

What’s nice about a buddy

Is they really care for you

 

Do you have your buddy

Interpreter and spy

Without their information

   You’d be left just asking why

 

Chorus:

Buddies walk through life with you

But you will share things with them too

The ups and downs, the tears and fights

You stick together, wrong or right

 

Do you have your buddy

And do they understand

That being someone’s buddy

Is exploring a new land

 

Do you have your buddy

The one with magic powers

Their wand sends meltdowns far away

They never think to cower

 

Chorus:

Buddies walk through life with you

But you will share things with them too

The ups and downs, the tears and fights

You stick together, wrong or right

 

Do you have your buddy

And do you think they know

That you’re as lost as they are

And you both just want to go

 

Do you have your buddy

A mom or spouse or friend

Yes they love you even if

Your struggles never end

 

Chorus:

Buddies walk through life with you

But you will share things with them too

The ups and downs, the tears and fights

You stick together, wrong or right

 

I can be your buddy

I hope that means that I

Can show you things through my eyes

Things you’d otherwise pass by

 

Chorus:

Buddies walk through life with you

But you will share things with them too

The ups and downs, the tears and fights

You stick together, wrong or right

 

6 Word Stories pt.8

When I wrote a lot of these stories, I was having a really terrible week. (I’m slightly ahead on these, so they’re coming to you about a week late). Navigating relationships are hard enough when you’re autistic, that when a disagreement turns into a fight, there are no scripts to use. Especially when you’re feeling angry and betrayed. I don’t know if this friendship can be saved or not, there’s no previous experience for me to pull from. I guess I’ll just have to wait and see.

  • Hanging out tomorrow, I’m already anxious
  • Plans cancelled. Change sucks, still relieved.
  • I wish I handled stress better.
  • Feeling so betrayed by ableist friend.
  • Why aren’t there guidelines for boundaries?
  • Marriage perks: really great pressure hugs!
  • Committee meetings make me feel dumb.