A Label on Functionality Labels

Note that this article contains a discussion on functioning labels, medical bias against autistics, and similar topics in the autism community.

One of the most common questions I get when I mention being autistic is “So, you’re really high functioning?”

Yikes.

As I’ve mentioned before, functioning labels aren’t really my thing – or most of the autistic community’s either. There’s been a shift from functioning to support levels, or simply just saying what the needs are for each individual person (my personal preference).
I personally think functioning labels are rather harmful – not only for autistic people, but their families too.

When you’re too ‘high functioning,’ you’re denied supports you desperately need simply because you’re not “bad enough” in people’s eyes. And when that happens, we are at risk of becoming the statistics: mental illness, homelessness, lower life expectancy. You’re denied a voice in the autism community because ‘you’re nothing like my child’ – although there will always be a difference between a five year old child and a young adult.

When you’re too ‘low functioning,’ you’re denied the autonomy that you so rightly deserve. The assumption lies that you are unable to experience life – no love, no voice, and that you’re a burden. You’re denied a voice in the community because “you don’t know what’s best for you” and to not “bite the hand that feeds you.” Calling someone “low functioning” is cruel and dehumanizing, and expectations for their quality of life are set low.

Autistic people deserve better than this, no matter where they are on the spectrum.

For families, the harm lies there too. These functioning labels hurt everyone, not just the people on the spectrum.

If your kid is “high functioning,” it’s a ‘discpline issue’ or a ‘your kid isn’t really autistic’ to the quiet yet outright denial of services such as IEPs and behavioral intervention plans in schools. You read in horror of how your child could become one of those statistics from above, and you are judged because your kid “seemed fine yesterday.”

When your child is considered ‘low functioning,’ you’re painted a horrible picture of their future. You’re (wrongly) told that your lives are over, and that they’ll end up institutionalized. Your child will be less likely to receive life-saving medical care such as organ transplants – all because their quality of life is seen as less.

Let me describe to you two separate scenarios of how autism can present itself:

  • In the first scenario, we have someone who you would consider quite independent. This person can speak somewhat eloquently, although they might seem a little “odd.” They live alone, make their own appointments, and are involved in several different things that keep them very busy. They have the occasional meltdown, but otherwise are seen as not having too much trouble. A schedule is absolutely necessary to keep them grounded, and they have a special interest that they are happy to share about constantly – which can cause some social difficulties.
  • Within this second scenario, this person is seen as needing high support. Professionals have said they are not suited to independent living whatsoever, and their paperwork says they have “severe limitations” that keep them from living an average life. They are unable to drive, have to be prompted to eat and use the restroom, and are often non-verbal when overwhelmed. They have self-injurious behaviors such as hitting their head, severe picking of the skin, or scratching. It’s also difficult for them to communicate where they are hurting and sick until it’s too much to handle. They rely on scripts for all interactions in order to communicate, and phone calls are very difficult for them. Social events are extremely draining and hard to properly navigate.

Now, it’s pretty to simple to see which person is considered high or low functioning, right?

Wrong.

In case you hadn’t picked it up: both of them are actually me.

I’ve had several digs made at me by people saying I was too “high functioning,” and that people who are “low functioning” wouldn’t agree with the concept of neurodiversity. (Fun fact: yes, they do.)

I’ve had people tell me that my autism is obviously not a disability, because it doesn’t significantly impact my life – or that I was given the wrong diagnosis.

Considering I was in neuropsychological testing for about SEVEN hours, I think the doctor’s evaluation might have a little more weight compared to the person I’d met about five minutes ago.

I may look like I know what I’m doing, but almost 9 times out of 10, I’m doing what we call “masking.” If I was able to freely be myself, I’d be much more outward with my autistic behaviors. I was trained from a young age what was considered appropriate vs “too weird.” As a result of not being able to exhibit these behaviors, my mental health deteriorated. I threw myself into my academics and special interests instead.
By the time I hit high school, burnout was a huge worry for me.

Burnout is what happens when we autistics “mask” our traits and try to blend in with neurotypical people. When this happens, it can have disastrous effects. It can even  manifest itself in depressive episodes or mental breakdowns. For me, I feel incredibly run down and my depression becomes severe. My brain will hyperfixate on suicidal thoughts, and it’s not a state of mind that anyone should linger in. Add in the chronic pain/illnesses, the past trauma, and the hectic environment of college life – it’s easy to see why this is a problem. Sometimes I’m out of commission for a few days due to this mixture, because I know I can’t overextend myself or I can’t function at all. Over time and ~15 years of intensive therapy, I’m beginning to slowly build up coping skills and how to demonstrate more resilience.

People don’t realize just how much energy it takes for me to not curl up away from all the noise and people in public. Sometimes it’s too much, and I still break down crying. I had to learn how to play my part in this impromptu play-piece that everyone else appears to have memorized the script for. Because I learned how to be the human equivalent of a chameleon, I have the ability to “fake it” until I can get out of the situation.

When you have to grow up quickly, you learn ways to simply survive your current situation – and suffer the repercussions later.  It is exhausting to go through the motions, as if mentally checking off a list for each interaction:

  • Make sure to fake the eye contact; lip read, or stare at eyebrows if you have to.
  • Which script template should I use for this? Are they asking about classes or my cat?
  • Was that sarcasm? What’s in the context to tell me so?
  • Does their face actually mean that they’re happy or are they just tolerating me?
  • Wait, was that their name? I can’t remember what they look like.
  • Don’t make that squeaking noise. Don’t script something out of context. Don’t mention that thing that you just really LOVE because they reminded you of it.
  • Was that socially appropriate to mention? Oh NO I MESSED UP.
  • Ignore the light, ignore the sound, pretend your head isn’t hurting, ignore the pain from the tag.
  • Keep the noise cancelling headphones away; they’ll all say you’re incompetent.
  • How much longer can I take before I start crying and need to go hide in the bathroom again?
  • Do they actually like my existence, or do they secretly hate me? What am I doing wrong this time? How do I FIX it??

All of this rushes through my head with nearly every conversation, and it can be difficult. When I go non-verbal, my brain is just too tired to continue. It’s hard to make sense of anything, and my mind seems to have forgotten how to do words.

All of this to say: yes, some of us need more support than others. It’s a spectrum for a reason, and we all experience our autistic nature differently. We’re diverse, and we are all part of a great web of neurodiverse society.

Even so, referring to us as “functioning” degrades us as if we were machines – not human beings with our own emotions, thoughts, and ways of processing the world. It hurts not only us, but those around us, too. We need acceptance, support, and understanding. It’s not a race to see whose kid has it worse or which “Aspie” is more likely to be a savant. Functioning labels make this worse.

Based on that, I’d easily label the concept of functioning labels as harmful.

Each of us has our own unique struggles, strengths, and abilities. All of us on the spectrum have value and can make a positive impact in their world. Even the smallest act of kindness creates ripples and waves, and perhaps just the fight to exist and thrive in our society is revolutionary in itself.

I’m autistic. No more, and no less.

The Case for Identity-first

[Note: this post is specifically in regard to the autism community.]

“You are required to use person-first in this class. Otherwise, it will affect your grade.”

 

I am autistic, not a person with autism.

I don’t “live with” or “suffer from” autism.

Autism isn’t a roommate that eats all the leftovers from my fridge, or a cursed plague rained down upon me from the sky. It’s not a death sentence, a condemnation to a life of loneliness and disastrous consequences.

The only thing I’m “suffering from” is the lack of acceptance and respect.

Autistic isn’t a bad word.

It’s an operating system, a lens from which I experience the world around me. It’s how I enjoy each moment, embracing my own existence in a way that many others do not. It’s not a disease, no matter what anyone says.

Neurodiversity is necessary in this world, and autistic people are not less for being themselves. All of us have value – the happy flappers, those who use AAC, those of us who can hardly remember to feed ourselves half the time (shout out to my schedule chart and phone reminders). Our lives might look a little different than yours, but that doesn’t mean it’s any less meaningful. Being autistic means I can be lost in the same musical pattern for hours. It means feeling joy so intensely that all I can do is flap my hands because the excitement over seeing a butterfly is just far too much to contain inside.

Sure, being autistic means shirt tags that feel like cacti pricks. It means intense fluorescent lighting, a rush of voices in the room that leaves your head swimming. The constant desire to know where my limbs are for grounding, the need for a human guidebook. It means feeling like an alien in a world that isn’t quite suited for my functioning needs. It means that I’m not really supposed to live on my own, that friends and others check on me regularly to make sure that I’m eating and looking after myself.

That doesn’t make me any less. Instead, it makes up my existence. Living in itself is full of positives and negatives; being autistic is the same.

We exist in our own way, and we deserve to exist.

If you need person-first language to remind you that I am a living, breathing human-being, we have an issue.  By enforcing the use of person-first, you immediately make the assumption that my disability makes me less – and something that you have to separate me from in order to have any worth in your eyes. You imply that I am broken, but you’ll try to make up for it by calling me a person first. At the same time, you completely contradict my entire identity and tell me that my voice does not matter.

Working with children with disabilities in the future, my kids will not learn this.

My future kids are going to be loved. They’re going to learn that their disabilities make them unique, a beautiful boost to the natural diversity of humanity. They will learn that they are full of value – not despite their disabilities – but with the inclusion of them. I will teach them that their differences are needed in the world. In my home, office, or wherever I work some day, they will never need to feel ashamed of their existence.

In the community center I volunteer in, I take the same stance. Every single autistic child that enters that building is a precious soul who needs to be cared for and shown how important they truly are. The same applies for teens and adults, too. They are facing obstacles at every point of their lives, and we are all surviving in a world that doesn’t really take us into consideration.

In the meantime, I still have things to do.

It would appear that my opinion as a disabled person is not always valued – especially in this area of study. It’s ironic how something so nice-sounding is actually incredibly dehumanizing. I have to be honest, the requirement made me feel medicalized and as if my community doesn’t actually matter.

It makes me feel like only the “professionals” get a say, instead of the people I am meant to serve in the future. I’m struggling through college for a reason: to help future disabled children and adults to take pride in who they are and love themselves. Part of that requires to respect their community’s wishes and their disabilities. If we teach our children that they have to be separated from their disability, doesn’t that further the stigmatization? Being a good advocate requires nurturing our kids, not to make them feel negatively about their existence.

It made me feel humiliated when the class was asked to explain why “an autistic person” is obviously wrong – immediately after I had mustered up the courage to speak up and say we prefer that. I cried after I left, because I felt disrespected and my experience as being a part of the autistic community didn’t count. It was as if my autistic voice didn’t matter, and conveyed the constant, overwhelming societal routine of ‘shut up, we know what’s best for you.’ It reminded me of all the times I was told I was broken and the world doesn’t think my words have any value. Of course, the professor meant well – person-first has been pushed on people for years. 

I sent the professor several links to studies, articles, and stances to back up my feelings. The next class, he actually took the time to explain to the class how there is a movement for using identity-first. The fact that he listened absolutely astonished me, and he’s been a fantastic professor all semester.

Still, we have a long way to go.

Most people are rarely as understanding as my professor was.

We fight so hard to be accepted and to be able to exist in the world. When autistics speak, few actually seem to listen.

If my voice isn’t good enough, maybe some of the following voices are:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5545113/ : ‘The use of person-first language in scholarly writing may accentuate stigma’

https://www.thinkinclusive.us/why-person-first-language-doesnt-always-put-the-person-first/ : ‘Why Person-First Language Doesn’t Always Put the Person First’

https://autismwomensnetwork.org/failings-person-first-language/ – ‘The Failings of Person First Language’

http://www.autism.org.uk/about/what-is/describing.aspx – A link that describes studies and information.

https://musingsofanaspie.com/2014/06/18/the-logical-fallacy-of-person-first-language/ : ‘The Logical Fallacy of Person-First Language’

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3519177/ – ‘Person-first language: Noble intent but to what effect?’

http://aspitude.blogspot.com/2009/03/autism-first-language.html – ‘Autism-first Language’

http://doodlebeth.com/identity-first-language/ – A very informative comic

https://twitter.com/doodle_beth/status/899553495292026880 – informal Twitter poll that may be of interest.

https://www.eurekalert.org/pub_releases/2017-08/osu-sad082817.php#.WaSLL_syUzg.facebook – Disability pride and its effect on self-esteem.

http://www.autismacceptancemonth.com/resources/101-3/ways-of-thinking-about-disability/identity-first-language/ – Identity-first

As always, just keep stimming.
Especially when they tell us not to.

Dysautonomia Awareness Month!

Make noise for turquoise!
Actually, maybe not too much noise. I’m in a bit of a quiet mood today.

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Dysautonomia: an umbrella term for medical conditions that cause a malfunction in the Autonomic Nervous System (Dysautonomia International).

The ANS is what controls automatic functions in the body – such as breathing, temperature regulation, heart rate, and blood pressure. Dysautonomia isn’t actually as rare as people think it is, but it’s not very well-known either.

I have a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome (POTS, for short; don’t worry, I’ve heard all the jokes).

POTS is when the heart rate increases by 30 beats per minute (bpm)  – or 120 bpm – upon standing. Some may have a decrease in blood pressure, but overall it usually stays the same or even skyrockets. Many people with POTS may faint (syncope) or experience pre-syncope, where they feel as if they’re on the verge of fainting. Dizziness, fatigue, excercise and orthostatic intolerance, headaches, and nausea are some of the common symptoms also seen. However, each person may have slightly different symptoms. Some people with POTS function relatively well. Others are affected significantly, and it can difficult to cope with.

I’ve been treated for POTS for over a year now, and my cardiologist recently ‘reconfirmed’ it this past summer when they did a 21-30 day heart monitor.

For me, this means that I have significant orthostatic intolerance and other problems. I’ve often fainted, although I tend to struggle with pre-syncope or collapse more because my body just doesn’t want to stay upright. When I stand up or walk, my heart rate skyrockets. It’s not uncommon for my heart rate to be 140 bpm after I transition from sitting to standing. That in itself can be very stressful. However, POTS isn’t limited to a high heart rate. My blood pressure also goes up as well, which is a bit of a nuisance.

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An infographic detailing all the various symptoms of POTS. There’s a lot.

In general, my body also has trouble with regulating temperature, migraines, severe fatigue, and blood pooling. Insomnia, nausea, and chronic pain are also typical for me. I also have problems with GI and absorbing vitamins, but that’s something we’re still working on figuring out. There’s always some sort of medical testing going on.

Heat and exercise can also make it worse. Like I said before, I’m not great with temperature changes and I can’t stand heat. I used to tolerate heat extremely well as a child, but now I can’t deal with it at all. Exercise is also difficult, especially considering just standing up gets my heart rate into the higher levels. Swimming is supposed to be very good exercise for POTS patients, but I haven’t been able to make it to the pool yet this semester.

Basic activities such as cooking and simply walking is exhausting for me. This combined with my executive functioning skills sometimes means I’m just too tired to make food or make it to class. If I do make it to class, my brain fog can create difficulty concentrating and comprehending – something that makes my mild neurocognitive disorder worse. Currently, my ability to function is comparable to someone with congestive heart failure. As for quality of life, it’s considered to be similar to patients on dialysis for kidney failure.

This also means that when I get typical illnesses like the cold or flu (I call it getting “muggle sick”), I’m out of commission a lot longer than I normally should be. My body doesn’t handle it well, and even a simple virus can land me in the emergency room.

I end up in the ER a lot due to complications of it, especially when I’m not able to drink enough fluids (no, seriously; I’m supposed to go through a lot of Gatorade). Amusingly, I was in the ER last night due to a viral infection that exacerbated a lot of problems with my POTS – severe dehydration being one of them.

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Taken literally last night at 1:00am. Getting a bag of fluids intravenously due to dehydration – and looking very grouchy too.

To help function better, I use a wheelchair to help get around campus and places where standing is constant. I’m hoping to eventually get an electric wheelchair to help me get to class, as collapsing on my way to Writing class isn’t going to do me any favors. I’ve already missed quite a bit (between POTS and other illnesses, everything’s been a mess), so fingers crossed that gets approved soon. If it does, I could even do my exercises in the pool! It’s all about fatigue, brain fog, and not passing out, honestly.
I do use a cane if I’m in a cool, flat small environment with lots of chairs. My balance is really terrible (yay for three mild TBIs and vestibular issues), so I have to have some sort of mobility aid anyway. All of that said, it’s extremely important to keep up leg muscle strength. Deconditioning can make POTS so much worse, and that’s definitely something I try to work on. I personally hate having to rely on my chair, but it also allows me to do more – and to save energy so I can use my cane later!

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Me sitting in my wheelchair and hugging a dog during a volunteer event at the animal shelter last spring.

I also eat lots of salt and drink Gatorade, as well as wear compression tights. The salt and Gatorade are good for blood volume and hydration. The compression tights are great for the blood pooling and swelling, but they are also the worst thing ever for sensory problems. Typical, really.

There are some conditions that many people with POTS also have: Mast Cell Activation Disorder, Ehler’s Danlos Syndrome, and Gastroporesis. I’ve not been diagnosed with any of these personally, but I have several friends who have.

There’s no cure for POTS, unfortunately. I’ve been referred to Vanderbilt for an appointment with the Autonomic Dysfunction clinic, so it’s more of just a waiting game at this point. One of my friends recently went, and I’ve been told good things about it!

While POTS is supposedly “rare” according to Google, it’s probably far more prevalent than what people expect. A lot of people are diagnosed with anxiety first, because doctors don’t always have experience with it. Dysautonomia itself is definitely not rare, especially considering all of the different forms it takes! Not only does it encompass POTS, but it also includes Neurocardiogenic Syncope (NCS) and Multiple System Atrophy (MSA).

If you want to know more about Dysautonomia or POTS itself, there are a few really good websites:

http://www.dysautonomiainternational.org

https://www.dinet.org/

http://www.potsuk.org/

If you know of any others, feel free to let me know and I’ll add them!

Explaining Autism: With Cats

Most of us have heard the saying “All cats are autistic.”

Usually it’s meant as a joke, but there is a hint of truth to it. I see a lot of behaviors in my cat that I recognize in myself. In explaining what autism is, I’ve found referencing the difference between cats and dogs to be a way of highlighting the statement of “Different, not less.”
Of course, the usual disclaimer applies: autistic people are not animals. We’re human beings. That really should go without saying, but life experiences have told me that some people need reminders in regards to our humanity.

First, meet Leia Lyta:

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A tabby cat with green eyes sits on a purple rug. She’s holding a red catnip toy.

Leia Lyta is my emotional support animal here at the university. I have PTSD with dissociative/derealization episodes, chronic depression, and a lot of other conditions in addition to my autism.  Her purpose is to help keep me stable and comforted. She also gives me routine; I have to feed her, clean the litter box, brush, etc.

Anyway, she’s going to help me explain autism. No, seriously. Stay with me here. It’ll make sense.

What is Autism?

Autism is classified as a developmental disorder, a neurological variation. 1 out of 68 children are expected to be diagnosed with autism. The predominant theory is that it is caused by genetics (considering both of my brothers are also on the spectrum, I quite agree).
People on the autism spectrum are all quite different, but there are some similar characteristics that we all share. This is where Leia Lyta comes in.

Sensory

One of the most significant traits of autism is a different experience in terms of sensory input.

We are often sensitive to light, sounds, touch, and other things. If we are startled or overwhelmed, we will react accordingly. This could mean fight, flight, and other biological responses to distress.

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My cat hiding in a paper bag with her tail poking out. She was startled by our neighbors’ music.

Sometimes different things can help with sensory regulation: weighted blankets, fidgets, and other things of this nature. Self-stimulated behaviors are what we call “stimming.”

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Leia loves to snuggle on top of my purple weighted blanket.

Stimming is just one way that we relax when we’re overwhelmed. We also do it when we’re happy, too!

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Gif of Leia kneading because she’s happy. The caption says “Making biscuits”

Autistic people love to stim, especially with stim toys and fidgets. They help us focus and regulate our senses.

Funnily enough, Leia also enjoys fidgets herself – but mostly just because she’s curious.

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Gif of Leia playing with my fidget spinner.

One of the negatives of sensory differences is what we call meltdowns – or as I call them, the absolute Worst Thing Ever. They’re not enjoyable for us or those around us. I know when I have them, afterwards I feel as if I have the flu, hit by a truck, and ran a 5k all in one. I don’t have them as much as I used to since I’ve figured out how to cope a bit better, but when I do have them – it’s not so fun. They’re very scary for me, and sometimes even a little bit messy.

The best way to stop meltdowns is to help prevent it altogether. Being attentive to the autistic person’s needs is the best way. Are they struggling with transitions? Use visual schedules, timers, and other tools to help break it down to make it easier. Is it communication? Try writing, sign language, AAC, or even the Picture Exchange Communication System (at least in the beginning; I’d recommend transitioning from PECS to AAC as they get older). Sensory issues? Be aware of what their triggers are. If it’s bright lights, try dimming them or give the person sunglasses. For noises, try noise cancelling headphones, ear plugs, or give them earbuds to listen to music instead. Have a quiet place that they can retreat to when it gets to be too much.

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This was a couple of days after I’d first rescued my kitty. A very, very messy crate – as Leia panicked when alone, and kicked litter everywhere. I had to give her a bath after this. (Worst idea.)

Repetition, Repetition…

We love routine and repetition – a lot. Echolalia, special interests, daily routines – they’re all typical for us. Several aspects of our lives can be very repetitive. While many may consider this a negative, it gives us a sense of control and comfort. In a world full of surprises, our brains need this stability.

A perfect example would be ‘special interests’ and fixations. We will think about, play, or watch the same things over and over and over.  You might find it a bit odd, but we find it strange when people don’t have them!

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Gif of Leia playing with her favorite toy – a round ‘turbo scratcher’ that she will attack for hours.

Of course, you’ll find that a lot of us love tablets, computers, and television. For some, this is a special interest in itself. A favorite television show, Minecraft, or a YouTube channel – these are all things you’ll probably see some autistic people drawn to.

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Leia is staring at an iPad and watching cartoon fish swim around.

This is also why you’ll find a lot of autistics love science-fiction, fantasy, or other fictional things.

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She enjoys watching Star Trek, especially The Next Generation and Voyager.

We also may like the same food, and might eat it every day. This isn’t uncommon, although perhaps slightly unhealthy (such as when the only thing I ate for months was ravioli). It could be due to the texture, the steps involved in preparing it, or just simply that we love it.

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Moon Pies may not be Leia’s favorite food (she’s not allowed), but she will make a persistent attempt. Very similar to me when I see pizza rolls.

Socializing

Ah, yes. The ‘fun’ part that everyone thinks of.
Typically, our social skills aren’t the best. Some of us are good at ‘masking,’ where we can kinda fake it (I am one of these people, until I hit burnout).

Sometimes our social ‘battery’ is just low and we’re not too interested. Playing and hanging out with others is quite draining! I have to pick and choose how much I can handle.

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Leia also likes to rest after socializing. In this photo, she’s snuggled with a teddy bear and hiding under a blanket.

Other times, we really do want to interact – but it’s just really difficult to understand social nuances and procedures.

A common thing seen in autistic kids and teens is a concept called ‘parallel play.’ This is when we play next to someone; we don’t always communicate with the other person, but it’s still a form of socialization. Sometimes when we’re a little stressed out, it can be good to just sit with other people and do our own thing.

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Leia sitting next to another kitty at my friend’s house. They didn’t interact much that day, other than when Leia started grooming her.

Eye contact is a big issue for a lot of us. For myself, it’s almost painful and definitely uncomfortable. I got away with it as a kid because I would read people’s lips (one of the perks of being hard of hearing). Sometimes we can focus on the conversation and the person much more when we’re not forced to make eye contact.

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Cats aren’t always too fond of eye contact either. Leia is a little distressed at seeing herself in the mirror.

People often think we’re stand-offish because we may not express things the same. We may not always enjoy hugs or like to be touched. Some of us don’t communicate verbally, or we may be a bit ‘awkward.’

Rest assured, we’re just as lovable as anyone else.

We just have our own ways of expressing affection – just as cats and dogs do! We might not do things like neurotypicals, but that doesn’t mean we’re any less valuable or worthy to love and be loved.

Our brains just work a bit different than other people’s, and that’s okay.

The Communication and Spoon Board

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!

Executive Functioning?

Tools and Strategies

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.

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An edited collage of several post-it notes from around my dorm room. Many cover things such as eating, self-care, and chores that need to be done.

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.

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A small example of a ‘First, Then’ board. This one is from a Vanderbilt ASD module – which of course, doesn’t seem to show any girls in its examples. *sigh*

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.

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A visual schedule listing each step for getting ready in the morning. I made sure the images were cute – a way to make me feel a bit more cheerful as I checked off each list.

Technology

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.

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A phone alarms menu and a medication reminder app menu. The medication reminder app is called ‘Round,’ if you’re curious. I’ve yet to find an app I prefer the most. (Edit: Since I last posted this, there have been several medication changes and additions.)

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!

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A poor quality photo of my medicine box. These are just the meds I can put in there. I may be upgrading it soon, actually.

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.

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A side-by-side view of my two calendars I use to keep up with classes and appointments. I usually only have to put data in one of them and they sync. However, the one on the left (iStudiez Pro) also has the option to include assignments and due dates. 

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.

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My “old school” agenda that I use to keep track of all my events and appointments. Bonus: color coded!

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.

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My wall calendar! It’s somewhat incomplete, as I don’t always remember to write everything on it. Even so, it’s a helpful tool for me.

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.

And as always, just keep stimming!

Stim Toys and Fidgets Workshop: A Recap

Now this is the content I signed up for. Allow me to utilize this special interest for the next few hours, friends.

 

A while back, I hosted a Stim Toy and Fidgets Workshop at our local community center for the Autism Society of East Tennessee. (Fun fact: it’s the best place and I love it. Not that I’m biased or anything.)

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A table with a blue cloth over it. It has several different stim toys, fidgets, and other objects used for autistic and neurodivergent people.

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:

  1. Self-regulation.

    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.

  2. Sensory Seeking

    This is probably best described as your kid running through the Wal-Mart aisle and touching every single pillow in sight. Another fun fact: I am the adult who does the same.
    It just feels so great. One of the perks of being autistic (it’s not all doom and gloom, you know) 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 (reason #35 why  I can’t be left alone in the craft store), but that’s okay. I’m still going to touch that fake moss and squeak.

  3. 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.

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A view from the table. (Told you the center looks fantastic)

There’s seven main types of stimming. For the purpose of the workshop, I narrowed it down by combining 6 and 7.

  1. Visual: sight
  2. Auditory: sound
  3. Tactile: touch
  4. Taste: chewing and licking
  5. Smell: sniffing
  6. Proprioceptive: knowing where your body is, grounding
  7. 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.]

Let’s get started! 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

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Pictured are three slinkies, whirligigs, a fidget spinner, two spinning tops, and a liquid movement toy (with the name blurred out).

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.
Let’s go through the picture here. 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.

Auditory

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Pictured are a soft cloth bag containing glass pebbles, pop tubes, and a Jacob’s Ladder.

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).

Tactile

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Pictured are several different tactile stim toys. A puzzle ball, Silly Putty, red tangle, Play-Doh, fuzzy catepillar, a fuzzy duck, marble fidgets, spiky balls, poppers, a bendy alien, two soft pandas, a blue packet of gel beads, and a stress ball made out of flour and a balloon.

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 the CDC self-contained classroom that I volunteered in during high school.

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Several different balloons with silly faces and ribbon bows. If you make these: remember to make sure no one has a latex allergy!

Taste

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Chewable  jewelry: a flower and a mushroom.

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.

Smell

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A roll-on bottle of essential oils with a pink sticker that says “Peace” on it.

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. 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
(Yes, it doesn’t match the other headings.)

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Image contains a weighted wrap, a weighted hacky sack, and a weighted lizard, crab, and butterfly.

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?

 

Hopefully this can be a helpful resource! If there’s anything that’s missing or misspelled, let me know. (It’s two in the morning, which I didn’t realize.)

As always, just keep stimming. ❤