Note: spoons in this context refer to energy available to use in a given day. I am very fond of what’s called the spoon theory, and I use it often to help describe how I’m feeling.
In the beginning of college, I developed something I called the ‘Spoons Board.’
As my roommate and I were both autistic, we knew we had to come up with something to make things easier. Living with other people (even your best friends) is hard, whether neurotypical or not. To help with our communication and gauge energy levels (spoons), this board was often used.
This allowed us a central station to leave notes, check each other’s schedules, and understand how the other person is feeling that day.
As I have difficulty with reading emotions, this was a really big thing for me. Dealing with chronic illnesses: energy is even more a factor for us.
Underneath was my communication board, something we would use when either of us went non-verbal or when I was having trouble with my hearing (I’m actually deaf in one ear).
I didn’t really have much planned for the post; I just wanted to share something that I found to be an incredibly useful tool!
Have you ever had the feeling of walking into a room and having completely no idea what you’re supposed to do next? It’s remembering that you’ve forgotten, but not knowing what.
Or, have you ever had so many tasks that you get too overwhelmed? A task so daunting you decided to go for a lie down instead?
That’s something many autistic people have every single day.
One of the things that is quite difficult for many autistics and neurodivergent people is something called ‘executive functioning.’ It’s the mental processing involved in making decisions, multi-tasking, organization, and getting started on tasks. It’s not exclusive to autism, though. It happens in people with ADHD, cognitive impairments, and even mental illnesses such as chronic depression.
One of the most significant issues with executive functioning is the assumption that the person is lazy. This is often the case when the person is a teenager- especially as teenagers are often known for their laziness! However, it can actually be detrimental to accuse the person of laziness. Many times, they already are frustrated with the difficulties of executive functioning. The scolding, in turn, can exacerbate stress on the person and cause greater difficulty in functioning.
Of course, we can be lazy too. It’s okay to be lazy sometimes; relaxing is a perfectly healthy thing to do! That’s another topic altogether.
Someone who struggles with executive functioning may have difficulty with organizing tasks. If you give them several instructions at once, they may feel overloaded and overwhelmed. They may even have trouble remembering what you told them. When this happens, they may not be able to do them at all – or only one or two. For myself, I have sat in my floor for two hours because I was trying to process my tasks for the day. My brain has to pick each step apart so I can fully grasp it, or else I become overwhelmed significantly.
Visuals and Schedules
I actually have several post-it notes around my room to remind me of important tasks, as you can see below.
Some of these things are processes I’m actually quite good at, such as looking after my Leia Lyta. This is because cats are mostly self-sufficient, and I tend to prioritize her anyway. Cats don’t let you forget.
Other things are things I need reminders on – like brushing my hair or taking my meds. Lately, I’ve had a bit of an issue of remembering food. My body isn’t really registering it as much as it used to, which is probably not a good thing. I’m not the only person who has trouble with that, though. It’s nice not being alone, at least. Because of that, I keep Ensure drinks on hand to try and keep my nutrition stable.
(Tip: if you or your kids have issues with this sort of thing, nutrition drinks are the way to go. They’re actually not that bad once you find the right flavor for you.)
If you’re more picture-oriented, a “First, Then” board or visual schedules are also very useful. When my brother was first diagnosed, that was often used in the household. We had a really nice binder with lots of different pictures, and it was great. It helped him transition more easily, and it helped prevent frustration a little more. I secretly wanted one for myself, to be honest! We used them when I volunteered in the CDC classroom as well, and they were fantastic.
For myself, I’m in the process of making several visual schedules for my dorm. I’ve got one for my morning routine, and hoping to finish making the rest soon! It might seem a little childish, but it’s really helpful to have a visual prompt and simplistic list of steps to keep me on track in the mornings. It helps me live a more independent life, which is actually something that I have trouble with.
Another big help for me these days is technology. Phone alarms and medical apps are a lifesaver, and serve as good reminders. I’m considering getting an app for visual schedules for myself too, but all the nice ones seem to cost a bit.
The alarms go off at specific times. Some are reminders for medication, while others are for eating. I use the medication app so that I can remember whether or not I’ve been taking them correctly during the past month.
Of course, even a medication/pill box can be useful – especially if you forget easily. Sometimes even a chart can come in handy!
There is also a daily habit app called ‘Habitica‘ that can be quite useful! I don’t use it anymore because they changed the format (did I mention my frustration with change?), but it’s still a good tool to look into!
Planners and Organization
As for daily planners and organization, I have several methods. My main calendar is through my phone, per the typical college student’s life.
Many people prefer to go “old-school” and make lists. Some find it easier to write in an agenda or personal calendar. It’s all a matter of preference, honestly. I find that writing things out also helps, as having a concise monthly view can make scheduling a bit easier. The only downside is how overwhelming all the information can be.
Some people even prefer wall calendars or desk ones. I use different ones with mostly the same information. It helps me remember, but it also gives me a rough idea of how my day is going to go. With this information, I’m much less likely to have a meltdown or get too stressed during the day.
Things such as worksheets and executive functioning handouts are also incredibly useful. I went over some of them when I did the executive functioning workshop a while back. The best part is that you can use them to work out complex situations – or simply just to get a better understanding on how to keep your brain motivated and in tune with your daily activities.
If you want any of these resources, just send me a message and let me know! I can usually find printable things to help. I’d post them here, but I don’t know if I’d get in trouble for copyright issues. Let me know and I’ll do what I can to help you! I also have located slideshow presentations with more in-depth information included if needed.
Now this is the content I signed up for. Allow me to utilize this special interest for the next few hours.
A while back, I hosted a Stim Toy and Fidgets Workshop at our local community center for the Autism Society of East Tennessee.
Behold: the Table of Stimming.
Okay, it’s not actually called that. It’s just a table, but I digress.
Before I get into what all these objects are, I have to address stimming first.
Stimming: By textbook definition, stimming is self-stimulatory behavior. It’s repetitive physical movement, sounds, and movement of objects.
By my personal definition: it’s like breathing. It’s calming when I’m stressed, enjoyable when I’m having fun, and it’s just what I do (hence the blog name, of course).
There’s three main reasons for stimming:
This is when things are just a bit too much. A good example of this is when I’m in a loud room, and start rocking. Now, to the neurotypical person, I look a little ridiculous – a 20 year old girl rocking and flapping back and forth.
But to me? When I’m overwhelmed, this is what’s going to get me around a meltdown or through it. I’d rather people judge me than put my own comfort and stability at risk.
Sensory Seeking This is probably best described as your kid running through the Wal-Mart aisle and touching every single pillow in sight. Fun fact: I am the adult who does the same.
It just feels so great. One of the perks of being autistic is that stimming is the best. It’s a way to experience the world around you more deeply than others do, and enjoying it even more so. People might not understand why I will touch EVERY fake plant visibly on display, but that’s okay. I’m still going to touch that fake moss and squeak.
Expression The best summary I can give: happy flapping!
When I’m excited, I always squeal and flap my hands. It’s just a way of expressing my joy about something. Contrary to popular belief, autistic people do have feelings. Sometimes, we may feel things much more deeply than neurotypicals do.
An example would be when there’s news about one of our special interests. When I received a message from the creator of Babylon 5, I squeaked so loudly, rocked, and flapped my hands for a full five minutes. There was just so much energy and excitement that I couldn’t contain it. It happens.
Of course, it can go the other way too. Similar to self-regulation, stimming can be used as an expression of fear or distress. My friends have learned to tell the difference between a ‘happy flap’ and a ‘oh no the world is ending please help’ flap.
Now, let’s break it down a little more.
There’s seven main types of stimming. For the purpose of the workshop, I narrowed it down by combining 6 and 7.
Taste: chewing and licking
Proprioceptive: knowing where your body is, grounding
Vestibular: movement, spinning, and swinging
Where do stim toys and fidgets fit into all this?
Stim toys and fidgets are objects that are used to help autistic and neurodivergent people focus and cope with the world around them. Sometimes they can be used to re-direct negative/painful stims to something better.
[Pro-tip: in most cases, don’t prevent your child from stimming. Less meltdowns = a happy household for everyone. That said, if the stims are dangerous to either the autistic person or those around, definitely re-direct. Find out what works for them, and encourage safe and healthy stimming.]
Now, let’s go through each of these.
At the end of the post, I will post links for where you can get these types of things relatively cheap, as well as ideas for making your own! (The Dollar Tree is a perfect place for fidgets). Most of these belong to the community center and were donated by an autistic-run business called Stimtastic! The rest are my own personal ones.
Visual stim toys are often ones that we sit and watch. Similar to sitting in the living room and watching the ceiling fan, it’s just soothing and enjoyable.
You’re most likely familiar with the fidget spinner: watching it spin can be mesmerizing for some people. Another example is the old favorite slinky. Watching it move back and forth like waves can be very stimmy. Spinning tops and whirligigs also have a similar effect (for the record, you can get these at the Dollar Tree).
My personal favorite types of visual stim toys are liquid and glitter movements. In the picture, I only have one example. When you turn it upside down, the liquid moves and bubbles.
Other visual stimming suggestions:
Kaleidoscopes, lava lamps, glitter jars, glow lights, I-Spy tubes: all of these are really nice and stimmy. I recommend glitter/calming bottles – especially as you can make them yourself!
Websites sometimes can be very good for visual stimming as well. Your kids may already be looking at videos of slime or gifs of bubbles/other things on YouTube, tumblr, or even Instagram. I like to put on videos of fish swimming in reefs and hook up my laptop to the television. It’s really nice.
The first one shown on here is the bag of marbles, as I call it. If the name doesn’t give it away, it’s literally a glasses bag filled with glass pebbles that I bought at the Dollar Tree. It makes a very nice rattle noise that I’m fond of. The red pop tubes are very noisy, but the sound is fun to listen to. I have a blue one of my own that I like to maneuver into different shapes. The Jacob’s Ladder is fun to watch as it descends when flipped. (If you haven’t seen one of these in action before, look on YouTube. It is the best.)
Other auditory stimming suggestions:
Beans/rice in a can, clicking pens, meditation/ambient noises, mp3 player/repetitive music, music boxes, stim toys that click. These are all different examples that are also considered auditory.
Alternatively – if you or your kid isn’t fond of noise, noise-cancelling headphones are always a bonus. I use mine sometimes, and it’s great. (If you’re worried about being judged: no one important will care. If they’re judgmental, you don’t want them around anyway).
The tactile stim toys are some of the easiest to find, hence the large amount here. Play-Doh and Silly Putty both have a similar purpose, and are nice to fidget with. I prefer the Silly Putty myself, because it doesn’t leave a residue. The puzzle ball is good for both stimming, as well as being a slightly less infuriating version of a Rubik’s Cube. The red tangle is nice for when you’re stressed and your fingers are extra fidgety. If I’m using my tangle, I’m probably very stressed.
The orange fuzzy catepillar, yellow fuzzy duck, and the spiky balls are all really helpful if you like that certain texture. The spiky balls are a bit more solid, and may not be the best thing to step on without shoes. These and the poppers are also actually useful for dermatillomania and trichotillomania (skin picking and hair pulling/plucking), which can be common in autistic people – myself included. The green alien and the marble fidgets are good for manipulating with your fingers, and are nice for practicing your fine motor skills (especially as mine are kinda awful).
The squishy pandas, stress ball balloon, and blue packet all have a similar purpose for fidgeting. There’s a little resistance when squeezing, but not enough to frustrate you.
Other tactile stimming suggestions: Fluffy/fuzzy socks or comfy blanket, heated soft toys, spinner rings, slimes. Be creative!
Bonus picture: the stress ball balloons I made for my friends in my high school’s CDC classroom.
These are my own personal chewing stim toys. I have a significant habit of chewing on my shirt collar all the time. These have been very helpful in keeping me from ruining shirts! The biggest concern with these is keeping them clean, and making sure that the material is non-toxic.
Other taste stimming suggestions:
I like to keep sweets in my bag – especially peppermint or spearmint. It’s actually rather calming. I also keep crackers/pretzels with me, but that’s due to a medical condition. Remember that choking hazards are a concern, and if that’s a big worry for you, supervision is definitely necessary. There’s also flavored chewables, but I don’t have experience with those.
I actually got this from an Essential Oils workshop that we had at the community center. Now, this isn’t always going to be great for autistic people – especially with scent sensitivities. Keep in mind that strong scents can induce migraines or sensory overload for some people. As well as that, some people have asthma, cystic fibrosis, and other lung conditions – which don’t always mix well with scents.
Some of us love smells and others loathe strong scents. I like this one, but I can’t smell it for too long. It’s nice to smell when I’m getting a little stressed, though.
Other smell stimming options: Candles, scratch-and-sniff stickers, aroma diffusers, scented markers, and other things. Remember to use caution with scents, as inhaling smells for too long (or smelling the wrong things) is not a good thing. Breathing is far better than sniffing candles. Always use discretion and be safe!
Proprioceptive and Vestibular
The main objects shown in this image are more focused on proprioceptive/pressure stimming. The three weighted animals are helpful to carry around, as they’re relatively small. The hacky sack is fun to switch from one hand to the other, and can be comforting.
My favorite is definitely the weighted wrap, though. I take it with me to classes, and also took it with me when I travelled internationally to visit my fiance.
Other proprioceptive and vestibular stimming suggestions:
For proprioceptive, one of the best things I can recommend is a weighted blanket. I’m underneath mine as I’m typing this! It’s very comforting.
For vestibular: swings, trampolines, spinning chairs, and crash pads are all really nice things that can be nice. I can’t really handle vestibular things as much due to medical reasons, but I know my little brother loves it.
So where can you get these?
Check your local Dollar Tree and get creative! Art supplies (especially things like pipe cleaners and the decorative marbles) often can help make great items to stim with. You can also get supplies to make a sensory bottle with from there, or stress ball balloons ( a tested favorite!)
stimtastic.co – autistic-owned, inexpensive, selection of chewies and stim toys!
Getting a diagnosis. Seems fairly straightforward, right?
You take your kid in to see the doctor, the doctor refers them, and then – voila- diagnosis time!
At least, that’s what people always assume. Me, not so much.
I was always a “weird” kid growing up. I took things literally, constantly asked questions that everyone somehow already understood, and was bullied often. My lack of social awareness was obvious, but it was just marked as being “quirky” or “a little different.”
Of course, my literal brain made for some laughs growing up.
Well-versed in the world of Sonic the Hedgehog, Underdog, or whatever else I was stuck in, I was always happy to share information I had gathered.
My classmates, however, were a bit less than thrilled. My social skills difficulties became more obvious as I got older, as other girls seemed to be surpassing me in that department. Furthermore, I didn’t care about my appearance like other girls did. I wanted only comfy and sensory-friendly clothes, hated doing my hair, and honestly didn’t care at all.
My social problems became a bit more obvious when I hit middle school, especially when I only ever talked about Doctor Who and other science fiction.I honestly didn’t know when it was acceptable to talk in groups, and often interrupted people simply because my brain had trouble keeping up – something I still struggle with.
After my brother was diagnosed with autism during that time, that also became a special interest. I delved deep into what the autism spectrum was comprised of. I read up on IEPs, studied different types of therapies available, and tried to be as knowledgeable as possible. Ironically, I didn’t realize I was autistic; I occasionally questioned the possibility, but put it away because I assumed diagnosis could only happen as a kid. I was wrong.
I’ll spare you the smaller details and go forward to age 18.
It started with my friends and my college roommate, who pointed out that I might be on the autism spectrum. I was intrigued with the idea, as I hadn’t really given it too much thought. As I met with a new therapist at the time, they suggested that I may very well be on the spectrum. Therefore, we continued treatment under the assumption that I was. I acquired a weighted blanket, began using stim toys, and started learning new ways to cope. However, I was often deterred from getting an “official” diagnosis. There are a lot of barriers to getting evaluated as an adult, ranging from financial situations to significant bias based on gender, race, and common misconceptions about autism. I was also told that there was no point to me getting evaluated, as there were no resources really available for me and I was too old for it to matter anyway.
Finally, at age 19 / almost 20, I somehow managed to get an appointment with a neuropsychologist. As many autistic adults know, this is not an easy feat. It can be difficult to get referred when you’re an adult, and even more so when you’re female-presenting. While I was mostly there due to cognitive issues, the doctor also decided that he wanted to evaluate me for autism. If I hadn’t been there for other medical reasons, I may have not gotten the chance for evaluation at all!
I was in testing for over 7 hours, and was so exhausted and overwhelmed. I also learned that I had to wait a month to see my results, which caused a significant amount of anxiety itself.
Fast forward to January of this year. My results were sent to my university’s Disability Services, as I was overseas visiting my fiance during Christmas break. I went into the office and quietly asked for my paperwork to make copies of. As I had no idea what was on them, I waited anxiously for the staff member to bring back my copies. As I was handed the intensely detailed report, I tried to hide the mixture of anxiety and anticipation that was building up. I went outside the office and nearly squealed as I read the report. I did a checklist in my head as I read each result.
“PTSD? Yeah, that’s accurate. Already had that diagnosis anyway.
Mild Neurocognitive disorder? I guess that explains a lot.
Persistent Depressive Disorder? Oh, this replaces the MDD. Good for accuracy anyway.”
And then- my heart started racing.
“Autism Spectrum Disorder”
With three little words, you wouldn’t think they would have such an effect. I mean, I had already referred to myself as autistic. I was already mostly convinced I was probably on the spectrum. I had even written a previous blog post (since deleted because I didn’t like the format) to detail my realization of being autistic.
Yet, three little words on a piece of paper made me stop in my tracks.
My first instinct was to flap my hands excitedly, as I had waited so long for this moment.
Nearly 20 years, I had constantly thought I was broken and weird. I had several days where I thought I was simply useless and somehow defective. After my original discovery of considering being autistic, I had so many days where I wondered if I was just a terrible person – and everyone was wrong about me being on the spectrum.
Seeing it on a piece of paper gave me so much validation, and I felt almost vindicated. All those times I was called derogatory names, told I had no common sense, and that I was a “social idiot”: I was not those things. I was autistic, and it was my own normal.
My second instinct was actually anger. I was angry that it had taken so long for my neurodiversity to be properly noted, and that I spent my entire childhood struggling when I could’ve had more. I was frustrated that both of my younger brothers were diagnosed at 2 years old and that I had somehow been missed. I was angry that I had spent so many years in therapy and yet they just thought I was “quirky” and “a little weird.”
I was distressed that society wanted to ‘cure’ me of my differences, and that the world did consider my neurology a burden. I was upset at myself for not recognizing that I had it, and for not pursuing the possibility when I had the occasional thought that I might be on the spectrum. Most of all, I was afraid that this could be used against me in the future. I’d heard horror stories of autistic parents having their kids taken away only because they were autistic.
My third instinct is probably the most important one: relief and the feeling of belonging.
I felt so relieved to know I had reasons for being the way I was. I often get discouraged, especially in social situations, sensory overload, or when I go non-verbal due to stress. I was so pleased knowing that I wasn’t alone in what I was dealing with, and knowing that I could be able to find local resources. I realized that I did belong to a larger community, and that maybe everything would really be okay. I went back to my room and immediately started researching groups and organizations.
Fast forward to today:
I’m preparing for my third year in university, and I’m back to making my spreadsheets. There’s a cat sleeping on my toes. My room is once again covered in post-it notes, reminding me to eat and brush my hair.
Papers are everywhere, as I now have a volunteer position with the Autism Society. I have been appointed as the Teen and Adult Social Scene Coordinator, which is very exciting for me. It was a bit of a surprise, as I had only went originally for an adult support group! My autistic nature makes it difficult sensory-wise, but it has quickly turned into a special interest in itself. One of the perks of autism is the hyperfocus on something I am way into. Community service is something I love to do and being autistic, it seems a perfect way to make a difference.
I have realized that my ability to get an official diagnosis is actually a bit of an oddity when it comes to adults, especially in groups that are often underrepresented when we talk about the autism spectrum. There are so many variables that impact the ability to get a diagnosis, and I am quite lucky to get diagnosed. So many others never actually get that chance.
I am told that there is nothing between.
You are either one end or the other.
There is no middle ground.
“You don’t even look autistic,” a stranger tells me.
I spend the next day observing myself.
I check my facial expressions. Am I supposed to not smile?
I check my hands. Do my fingers not look autistic enough? How would that even look anyway?
I check the mirror. What am I supposed to look like?
I chew on my shirt without thinking and go to my bed.
Maybe I should allow myself to stim in public more, I think to myself. I allow my hands to flap happily, and rock gently to feel better.
I don’t like pretending to be neurotypical anyway.
“Why are you doing that?” snaps the campus street preacher, clutching his bible as he wonders how to cast out a demon. He has no idea what autism is.
I rock faster and flap my hands close to me. The pitch in his angry voice creates fear, and I move my hands to my ears.
His look of disdain makes me look down. He’s too loud and I don’t like it.
I don’t want to look at his eyes – at anyone’s. It hurts.
“Wow, you’re so clever! Look at those grades and involvement. You’re such a high functioning autistic!”
I went to a service project because my group told me to, and it sounded nice.
I stay up until 3 in the morning with my paper, working intensely after I’d been distracted for two hours researching political tensions on a science fiction show.
I wonder why I’m feeling odd, and then I remember: I hadn’t eaten since I had woken up at 10 am the day before. I got so distracted that I forgot to eat or even get up to use the restroom – again.
I go through the papers given to me by my notetakers. The same song has been playing on my headphones on repeat since 8 pm. I have it memorized; after all, it’s the only song I’ve been listening to during the past two weeks.
I’ll eat when I finish.
“Honestly, I don’t think you’re able to live alone. You’re not great at being independent.”
My post-it notes cover the walls, a mural of bright yellow and blue. They remind me to take my medicines, to wash my hair. They ask if I brushed my teeth and if I remembered to check my calendar. I did.
The floor is messy, dishes are slowly piling up. I call my friend and ask to be reminded how to make turkey bacon again.
My phone goes off, a text reminder from my fiance that I have a class soon, or that I forgot to get clothes out of the dryer.
I make a detailed list, marking each step I have to complete in order to just take out the trash.
I get everything done, even though I am so tired.
“You speak so well, and your social skills are impressive for an autistic.”
I nod quietly and rehearse my next line. My aphasia forgot how to say the word ketchup as I order my dinner. I give up and go without.
Someone asks me my major, and I prepare to recite my script used every time:
” I am doing a major in Sociology with a minor in -” and realize halfway that I changed my minor last month. The script is wrong. My script is not updated.
I catch my breath and do a little cough.
“…and minoring in Special Education.”
I sigh as I spend the rest of the time staring at the floor. I can’t speak anymore. I nod quietly or sign “sorry” instead.
I spend a lot of time staring at the floor around the people.
They know how to talk and joke; I missed the class on how to make friends and keep them.
“Are you okay?” someone asks me at a club meeting.
I’m rocking more violently. The lights are drilling into me. The room is echoing with every individual voice vying to be heard. It’s warm. Worst of all, I forgot to eat all day – again.
My friend calms me down and takes me out of the room.
I go back to my dorm and hide under my weighted blanket.
I am no longer able to speak. My cognitive ability has a short in its wire. The operating system is crashing down.
I am not high functioning.
I am not low functioning.
I am autistic.
My days are high, and my days are low. They’re all different.
I may be independent – but I may not.
It’s not just a line; it’s a spectrum. It’s a giant sphere of strengths and difficulties, and they shift.
The lines zig and they zag, to an almost dizzying degree.
My autism is not mild. Nothing about me is mild.
If anything, my autism is strength. It feels like spice, the kind you expect from a strong cup of tea or coffee. My existence isn’t bland (even if I do only prefer bland foods). No one’s existence is.
I am a fiery autistic. I blaze with the power of thousands of suns, burning through my intensity towards my passions and interests. I shine when I am respected, when I can be myself without fear of invalidation or infantilization. I am bright, in my own way. Everyone is.
My existence is tied in both highs and lows. There is nothing mild about it.
Update: My major is still Sociology, but my minor is now Special Education (non-teaching). However, I am lazy and didn’t want to make a blog post about it.
So, I finally decided to create a blog.
I’d been toying with the idea for a while, but only just now set it up. The idea of finding an outlet specifically for the subject of autism and disability is quite appealing; thus, so begins the blog.
(In the middle of Dead Week at college, because I needed another distraction to avoid final exams.)
My name is Courtney, and I’m a undergraduate student currently studying Sociology and Psychology. I’m also autistic and have several different disabilities, which makes for an interesting college experience altogether.
As there seems to be so many misconceptions about people on the spectrum, I wanted to write about it. There’s a lot of little things and different aspects of life as an autistic, and I think documenting these things may be helpful in illustrating what it’s like – as well as hopefully gathering more acceptance for us.
Not that I actually expect anyone to read this. If anything, this blog will mostly be my little way of coping in a world that isn’t always the most understanding.