Recovery Time

Double the Downtime

 

Dictionary:
Autism/ND – Denoting anyone with autism or Neurodivegences
NT: Neurotypical, not autistic
Spoonie: an umbrella term for chronically ill, disabled, and neurodivergent people

 

Hi, I’m HB, an autistic teen and advocate for neurodivergent and disabled folks like myself. Welcome to my blog, thanks for reading! Today I want to talk about recovery time. It’s the holiday season as I write this, which means life is busier than ever. We all need downtime to recover but spoonies of all sorts tend to need more downtime than Able-bodied NTs. I’m talking about my personal experience and how I manage my time.

 

Why do spoonies and neurodivergent folk need more recovery time? Because doing stuff takes a lot of our limited energy. For me, processing power, how much sensory input I can tolerate, and how much effort I can put into peopling, and my physical limitations, bad knees, asthma, combine to restrict how much time I can be out, and dictate how much, and what sort, of recovery time I will need.

 

How much recovery time do you need? This will, of course, vary from person to person but I tend to need equal to twice as long as the thing was. So going out for an hour means up to two hours of downtime. How much recovery time I need is dependent on several variables. If I enjoyed the event, how much time I had to prepare, if I used my tools well, and how much processing power it took. If I used my tools well and enjoyed the event I might only need an hour of recovery time (from the one-hour event).

 

What does recovery time look like? This varies hugely from person to person. For me, recovery time is often as minimal and as much positive sensory input as I can get. This often looks like rocking in bed with the lights turned off, or only a lamp on. Listening to music I like. More generally, recovery time for (introverted) spoonies is often no people, safe space, minimal effort, and things we love.

 

What happens when I don’t get recovery time? Ultimately meltdown. I cannot push my body. My neurology tries hard to protect me from harm and pushing myself into unpleasant situations definitely counts. What if I get some recovery time, but not enough? I’m still likely to have a meltdown and guaranteed to have a bad time. I often struggle more with temper and executive function if I don’t get enough downtime.

 

So, what do I want you to get out of this? I want you to understand why we need so much recovery time, why we can’t simply push through it. The world is not designed for Autistic folks. We have to work twice as hard as you to do “simple things” it only makes sense we’d need some extra recovery time as well.

Attending a Concert with SPD & Autism

Dictionary:

Autism/Autie/ND – All similar term denoting an autistic,or otherwise neurodivergent individual.

NT – Neurotypical, an individual without autism or other divergences.

SPD – Sensory processing disorder, a condition that affects ones ability to properly interpret sensory information.

 

I have now attended not one, but two concerts. Both were very fun and overall enjoyable experiences that I would do again. That said concerts are not at all a sensory friendly environment. Today I want to talk about why I want to go to concerts, how I prepare for them, who you should go with, and what a concert looks like from an autistic perspective.

 

Why would I, someone with SPD and Autism subject myself to the sensory hell that is a concert? Bright – often flashing – lights, loud sounds, nasty smells, bad air, lots of people, all sounds like a recipe for overload. But it’s not. I adore music, music is a huge stim of mine, it keeps me from meltdown, and aids in my recovery when I do have a meltdown. I want to attend concerts for the chance to see artists I love, and hear music I cherish.

 

How should someone with SPD/Autism prepare for a concert? I would first of recommend bringing as little as possible. Bag checks are not fun. If at all possible don’t bring a bag, or if you do chose one with few or no pockets. What to pack? Earplugs/Noise cancelling headphones/Ear defenders. Small stimmy thing of choice. Ticket. Card/Cash. Portable phone charger. Alert ID (if you have one) and any other medical gear (ie inhaler, epipen). Aside from physically preparing with a pack list and wearing clothes you are comfortable & confident in you should mentally prepare yourself. I like googling the set list so I know what songs will be playing. Prepare yourself for the bright lights, people pushing past you, loud sounds, etc. Be ready to stand for a long time, if you are broken like me and need to wear a brace, or bring another mobility aid then do. Don’t do much the day of, and certainly don’t do anything after if possible.

 

Who should you go to a concert with? Someone, anyone, don’t go solo, bad idea. More specifically weather you choose a family-member, friend, or caretaker the person you go with needs to know about your conditions. They should be willing and able to help you if things go wrong. They should also be someone you can have fun with, who will enjoy the concert as much as you do.

 

What does a concert look like from an Autistic/SPD perspective? I’m gonna preface this with a I dont know what NT’s see. So if some of this is the same then great i dont care. Not all Aspies/SPD’s are a hive mind so this won’t be the same for everyone. That said, lets get into what I experience.

 

So, set up, I wore earplugs the whole time because I know that sounds can be a big trigger for me. Even with the earplugs everything was loud, I could feel the sound of the music in my chest even with the distance I had. I love that feeling though, the sound of the music in my bones. I’m photosensitive, bright and flashing lights are a no. So at concerts I often have to close my eyes to deal with the pain of lights. Yes, the light is painful, causes me pain, I think it looks cool, but it still hurts. I am an easily distracted kind of hyper-aware human, so during songs when everyone has their light out I cannot keep visual focus on anything. I also happen to be a good-memory kinda aspie so I do in fact scream every word to every song. That is when I have the power to speak, sometimes during concerts I’ll lose my speech for a few minutes my brain too busy processing everything else going on. I can’t have everything, I cannot, watch, and sing, and stand, it’s overload, too much for my brain to handle so I choose things to give up. Dont sing this song, sit for this song, close my eyes for ten seconds. But it’s an adrenaline rush, my hyper-aware brain gets high off all the input it’s getting. (that’s not science but that is how i feel) but, with every high there is a low, I crash as soon as I leave the venue. I want deafening silence and my safe-space, and sleep.

 

Attending concerts is a great big balancing act. But for me its worth it. I’m a normal teen after all and who doesn’t want to see their favorite artist live? I hope I provided some insight as to why I want to go to concerts, how I prepare, and what they look like for me. Maybe this will help some of you. As always if you have any questions, or feedback please leave it in the comments, I really appreciate it!

The Importance of Diagnosis

The Gift of Diagnosis or Knowledge is Power

 

Dictionary: Not necessarily the “true” meaning of words but rather how they are used in the context of this blog.

 

  Autism/Aspie/Aspergers/AS/Neurodivergent/ND/PwAS: all of these terms while having slightly different meanings refer to Autism, basically “not NT”. PwAS in particular denotes a person with an official autism diagnosis

 NT/Neurotypical/Allistic: A person who does not have autism, an individual whose brain or neurology is typical “normal”

 FM: Short for Family Member

 

If this is your first time reading NDD, Hello! Welcome to my blog. My name is Hb, I’m a teenage aspie trying to educate the world about neurodivergence. Today I have a guest with me, one of my IRL friends and a fellow aspie J. So because there are two voices here, and font changes are annoying to read we will denote who is speaking with initials.

 

H: Like this!

J: Hello there!

 

H: Before we get too far into singing praise to official diagnosis let’s dispel the big diagnosis myth. ‘Having a diagnosis can make you more autistic.’ Bullcrap. People don’t become more or less autistic you either are or you aren’t. You may perceive people as becoming “more autistic” as the freedom of diagnosis allows us to be more comfortable with ourselves. Leading to us exhibiting more autistic behaviors because we now know we are not crazy. Like, hey it’s okay if you need to flap, that’s normal (well relatively normal :p)

Now J and I had very different diagnostic journeys. So we’re each going to share about the steps of our journey. From our self-image and struggles pre-diagnosis to how our diagnosis has helped improve quality of life.

 

H: Pre diagnosis I often felt left out. As though I had missed a day of school where they taught social skills, and communication. I was tired all the time, and never had enough social energy.

J: I wasn’t diagnosed until a little less than a year ago, and for a while I didn’t even know what Autism was. During elementary school I think I was somewhat aware of being different – and looking back I was definitely bullied – but I was never really engaged enough with the world to process it all. Looking back, the early years of my life feel very detached and I never really knew why.

 

H: I had a lot of support during my diagnosis, and in fact sought out my diagnosis independently. My mother (the OT) had been dropping hints for years and it was only around 15 that I sought diagnosis. My mother helped me self diagnose before the official diagnosis. Both she and I were very glad I finally came to my senses.

J: My little brother, who is about ten years younger than me, was diagnosed when he was four, and I began to learn about Autism just to understand him. As I learned more about it, I began to find many things that I seemed to personally relate to, and I brought up the idea of diagnosis to my parents. They were going through a lot at the time, and were somewhat dismissive of the idea for a while. It wasn’t until more recently (and through much urging from H’s own mother) that they became more open to the idea and finally scheduled me an appointment. By the time I was finally diagnosed I was probably the least surprised of my parents and I.

 

H: I was officially diagnosed in December of 2017. Again my family, my mother in particular, were very supportive. My mum and I filled out a bunch of paperwork and went to a psychologist. We talked, I did some tests and a few hours later I was formally diagnosed with High-Functioning Autism. I have fancy papers and everything. We were very happy to receive this news. Apparently we’re the first people my psych has seen high-five at receiving that diagnosis.

J: While there was a bit of hesitation beforehand, after my diagnosis my whole family was very accepting and embracing of the news. I got the diagnosis itself in August of 2017, and may have been a little celebratory myself upon the confirmation.

 

H: Having a diagnosis is amazing. Everything sort of slots into place. The realization of “Oh i’m not a broken neurotypical, I’m a perfectly fine aspie.”. It helps you realize why you can’t do everything ‘normal people’ can, gives you permission to be kind to yourself and not always push for NT levels of functioning. It allows you to learn more about yourself, like why I had so much trouble with social cues. Provides an explanation for why you are the way you are, why the lights are loud (spd), why I have to tap my pencil and bite my hands (stimming).

J: For years I didn’t know why I was the way I was, and it always led me to feel there was something wrong and to try to find ways to “fix” the way I was. Learning about Autism and receiving my own diagnosis felt like this huge burden lifted off of my shoulders. I wasn’t wrong. I wasn’t broken. I was just different. And that was something I could embrace. Ever since, I have felt far more comfortable in my own skin and I have had the ability to focus on the actual difficulties Autism has brought into my life. Instead of worrying about fixing some of my weird social quirks or “obsessive” interests I can instead focus on finding ways to deal with my stutter or self-regulation. My diagnosis has helped me both in validating myself and in taking control of my own life, and without it I think I would still be in that state of detached confusion I was in for so, so many years. That revelation of being okay has profoundly changed my life

 

H: Having a diagnosis allows me to be comfortable in myself. To explore explanations for why I am the way I am. It has opened me up to the amazing community ND people have with each other. Provided explanations for every aspect of my life, and fuels my dreams. Don’t hold back diagnosis from the autistic in your life. Having a diagnosis is will make a positive, radical change in the way autistic people live and see themselves.

NT is OK

The NT in my life

This blog is inspired by the lovely “Why Johnny Doesn’t Flap” page/book.

Names in the blog have been changed to protect the identities of those being spoken about.

 

Dictionary

Satire: the use of humor, irony, exaggeration, or ridicule to expose and criticize people’s stupidity or vices, particularly in this blog to expose the silly perspective allistics have on aspies.

Sarcasm: the use of irony to mock or convey contempt.

**From this point on the tone of this blog is entirely satire**

Allistic/NT/Neurotypical: A non-aspie

Autism/Autistic/AS: Terms referring to a person with Autism

Idiom: a group of words established by usage as having a meaning not deducible from those of the individual words (e.g., raining cats and dogs,)

Hyperbole: exaggerated statements or claims not meant to be taken literally (e.g., she ran at the speed of light)

 

Pretty much all of my blogs up to this point have been about myself, my experiences as an Autistic person. But that’s not really fair is it? We haven’t hardly mentioned Allistic folks! They have valid struggles too. Now obviously I am not Allistic. However I have an Allistic sister so I am completely and totally qualified to write about all Allistic people.

 

Most of you are probably unaware that my sister Lily is NT as she passes so well. You might even be able to say she has special interests. But that’s getting a bit off topic, before we get too in depth here I should probably explain what Neurotypicality is.

 

“Neurotypical” is a type of neurology like Autism. However the NT brain is very different than an AS one. For example nearly all NT’s are without special interests! Instead they have more varied interests they are less dedicated to, making it much harder for them to perfect any one thing. NT’s also have poor communication. They often use figures of speech such as idioms and hyperbole which can be quite puzzling. Why NT’s feel compelled to use these untruths we aren’t quite sure.  However researchers at totallylegit place are currently studying this phenomena you can check out their research at http://www.forrealresearch.org/notsatire.  In addition to this figurative language NT’s will often outright lie to “protect others’ feelings,” and just plain lie without reason, very often they lie by omission.  NT’s also have subded sensory systems. Which often leads to struggles with properly identifying stimuli.

 

Now getting into Lily. We’ve known Lily is Allistic since she was two. However we have opted not to tell her about this diagnosis. We think it’s best to wait until she shows interest in learning about Neurotypicals.

 

Living with Lily can be a real experience.  She doesn’t have a routine and often tries to diverge from the family routine. Things like not wanting to eat at mealtimes,and postponing hygiene rituals. As an Allistic, Lily needs lots of input, especially socially. Lily often gets together with other Allistic friends. They talk about seemingly meaningless things for hours, constantly changing the topic. Of course none of these social events are planned at all.

 

Because of Lily’s neurotypicality she has an obtuse sensory system. She can’t differ smells or sensations as well as Autistic people. This does affect her everyday life, she has no qualms ruining clothing walking through mud or puddles. She often wears too many scents because her olfactory sense is dulled.

 

Lily has trouble with touch. Allistic people feel the need to touch other people frequently. This is something we work on with her, constantly reminding her that most people do not like to be touched so frequently. Lily also, strangely, finds comfort in light touch, which is highly uncomfortable for most people.

 

Lily is also over-expressive. All of her emotions show on her face all the time. This is called an ‘over active affect’, something common in allistics. She expects other people to express as much as she does and has trouble deciphering normal affect. She has said that many peoples’ faces look ‘flat’ in their absence of such large emotes. We have tried to teach her about normal affect but she really struggles in learning “small” expressions.

 

We love her anyways. Neurotypical or not Lily is family. We help accommodate her needs, teach her about autism and allism. We support Lily as best we can, hoping that one day she will be able to live a full life in autistic society despite her allism.

Coping Coins

Or my take on the spoon theory

 

Dictionary: Not necessarily the true meaning of words but rather how they are used in the context of this blog.

Neurodivergent/ND/Autisic – Words to denote someone who has Autism.

Shared Language – refers to people developing understanding amongst themselves based on language (e.g. spoken, text) to help them communicate more effectively.

Spoonie – Is a term that generally refers to chronically ill, or otherwise disabled people.

Sensory Seeker – A person that desires/needs a lot of sensory input to be happy.

Sensory Avoider – A person who dislikes sensory input and needs little input to be happy, too much input can be upsetting and painful for sensory avoiders.

Stimming – refers to self-stimulatory behaviors. Repetitive actions autistic folks use to self-soothe / regulate.

SI’s/Special Interest(s) – refer to a specific subject that an autistic person is very interested in / dedicated to.

Meltdown – A meltdown is a period of time where an autistic individual becomes overwhelmed and loses control of themself to a degree.

 

Shared language is vital to helping us understand one another, it bridges the gaps between different perspectives, neurologies. Today I am going to give all of you some more shared language to hopefully help us all better communicate. This is my take on the spoon theory, which i’m sure most of you have heard of, if not here’s a quick refresher; The spoon theory was created by Christine Miserandino to help explain to her friend what living with lupus – a chronic illness -was like. In her spoon theory Miserandino uses spoons to represent the limited energy people with chronic illness have. While typical, healthy people start the day with a nearly unlimited amount of spoons, Spoonies start the day with a very limited amount of spoons, doing anything costs spoons, and when you run out of spoons you are done, you can’t do anything else.

 

Now, I do consider myself a spoonie, but not to the degree my mother does. I am disabled yes, but not chronically ill. The spoon system doesn’t work quite right to represent my energy levels. Hence ‘Coping Coins’ a system that like the Spoon Theory represents energy levels, but not for the chronically ill, Coping Coins helps represent the energy levels of neurodivergent people. Now, let’s actually get into this Coping Coins system why don’t we.

 

With Coping Coins you receive an Allowance each day, your Allowance is representative of how much energy you have each day. Each person receives a different Allowance, and Allowance can differ from day to day. Unfortunately you cannot spend your allowance freely, it comes pre-budgeted with little wiggle room to re-budget.

 

In this metaphor ‘Budgeted’ means that I cannot simply use my Coping Coins freely. There is an amount budgeted to each of the different areas of coping. So I will have some budgeted to dealing with sensory stuff, some to dealing with change, some to dealing with eating, some to social stuff, and so on. Each person’s Allowance is Budgeted differently and how Allowance is Budgeted can change from day to day.

 

Costs. Different activities cost different people different amounts. I’m a sensory avoider so it costs me nothing to use cutlery to eat my food, but a sensory seeker who wants to feel all the textures of their food spends 50 cents to use cutlery at mealtimes.

 

Saving Up. You can Save Coping Coins, coins don’t carry over from day to day, however you can intentionally spend time resting, and doing low-cost-high-reward activities (like stimming and SI’s) to try and save up some Coping Coins

 

Exceptions. Sometimes things don’t cost as much as they normally do. If using other coping strategies, ie listening to music, noise cancelling headphones, stimming, and similar things, the cost is reduced. The cost of activities involving special interests is typically reduced by at least half, many neurodivergent individuals can better cope with many things when their special interest is involved.

 

What happens when you run out of Coping Coins? Short answer: You can’t cope any more. Long answer: you can attempt to cope for a short time through stimming, but running out of coping coins eventually leads to meltdown / shutdown.

 

In review we established what Coping Coins are, how they can be used, and what happens when you run out of Coping Coins. Hopefully that was helpful to you in some way, gave you some shared language to use with the NDD community at the very least. For some examples of how different people use Coping Coins check the comments, where I provide examples of three different autistic individuals and show how they spend their Coping Coins in everyday life.

Background Music

The blessing and curse.

 

Dictionary

Autistic/Aspie/AS/Neurodivergent/ND: All words I use to denote a person on the autism spectrum

Allistic/Neurotypical/NT: A person not on the spectrum

SPD: Sensory Processing Disorder

Hyper Awareness: Being hyper-aware of the surrounding area.

 

In today’s blog I’m talking about background music twice over. I’ll discuss how I use music to block sound and how ambient music makes it hard for me to listen. These topics have so much overlap it seemed only right I put them together.

 

Lets start with one of my coping mechanisms. Music. I’ve been using music to block ambient sounds for a long time. This is different than the way noise-cancelling headphones would help. The words of the song, the tempo, the notes, it gives me something to focus on. Helps keep my hyper-aware brain busy. I can still hear people talking when I have my headphones on. But not as well as without them. Yet, its worth it.  I can’t hear the conversation of those people over there. The hum of the lights, the squeaky wheel, or most ambient noise. My focus is on the music. I also use this tactic to distract from unwanted sensations. I wear earbuds when I go to the dentist, or doctors, to help distract myself from people poking and prodding at me.

 

But background music isn’t always wanted. If i’m having a conversation. Listening to a talk, lecture, lesson, or something else that needs my focus to process. Background music is not something I want. Unfortunately for me it has become common to play background music in most stores, restaurants, and other establishments.

 

This adds another layer of noise I have to sort through. SPD and Hyper Awareness already make listening hard. I have to sort through ambient sound. People talking, moving, the sound of lights, plumbing, AC, adding ‘background music’ on top of that it’s a lot. Overwhelming.

 

Now, here’s something I don’t talk a lot about. How I get ‘inspiration’ – the ideas – for my blog. Usually something happens to spark a post. I get called out on stimming so I write a post on it. I remember that I have SPD and listening is hard so I write a blog about it.  I want to share the story that sparked this post. I work in children’s ministry at my church.  This past Sunday I was running tech for the classroom. Our speaker had asked me to play a song in the background so I did. As I was trying to follow along with the lesson I realized how difficult it was for me to hear what the speaker was saying. The music was distracting me. A reminder that my brain is wired differently.

 

NT’s can filter out background music and ambient sound. “Tuning it out” or “Ignoring it” aren’t options for me. The wires in my brain are crossed, signals get mixed up and turned around as I try to listen to everything.

 

So what’re you supposed to get from this? You’re supposed to learn (or realize) that listening when you have SPD and/or Hyper-awareness is hard. That a tactic we use to help can also make things more difficult. That while you might not notice something, it might be nice, or slip your mind, we (the SPD peeps) certainly will.

High Functioning is no Fun

High Functioning Is No Fun

 

Dictionary – the meaning of words as they are used within this blog post

High Functioning: An individual on the Autism spectrum who functions/passes well in our

Allistic/Neurotypical society

Low Functioning: An individual on the Autism spectrum who does NOT function/pass well in our Allistic/Neurotypical society

Allistic/Neurotypical: A non-autistic “normal” person

 

Hi let me introduce myself; my name is Hannah, I’m a high-functioning Aspie who enjoys educating people. Because I am high-functioning (among other things) I pass quite well as Neurotypical. However, this is not necessarily a good thing. We often hear about the struggles of low-functioning aspies trying to be understood and accepted. Being high-functioning has its own unique set of struggles. Those high-functioning struggles are what we will be talking about today.

 

Let’s start off with establishing that function level is not equivalent to intelligence, awareness, or severity of autism. A low functioning person may not be able to express what they want despite knowing and understanding full well. A high functioning person might have quite severe autism and just be very good at “hiding” it. Every person is different, don’t assume things just based on how well someone functions in Allistic society. This post is in NO WAY meant to devalue the struggles less functioning/non-passing people face. This post IS meant to shed light on the struggles this particular (and I’m sure other) high-functioning/passing aspie faces!

 

“Oh I never would have guessed” – Passing too well and the assumption you do not need any help/modifications. Let me tell you no matter how good I might be at reading social cues and finding hidden meaning, stimming prettily, Eating like a “normal” person, and dealing overall. I still have to think about that, it’s hard work. But because I can “always” do those things nobody thinks I might need accommodation or help; and I don’t want to seem needy or get labeled or put Autism in a bad light so I almost never ask for those accommodations or help in public.  

This is one of the reasons my recovery time is twice my doing time; speaking of recovery time.

 

Recovery time, alongside being aspie I am also introverted (which is fairly common in autistic folks) so in addition to typical introvert recovery time, I also have aspie recovery time. Because I pass so well as both an NT and decently as an extrovert (some of that is because my social boundaries are wonky but that is another topic) while I am out in the world there is, usually, little indication of the stress it is causing and how hard I have to work. Even enjoyable events I plan to go to are stressful and a lot of effort, because of this I need about twice the events time in order to fully recover. Unfortunately for me, the world won’t stop demanding my presence for a few days or weeks while I chill out.

 

Remember how I mentioned “Pretty stimming” back up there a minute ago. Please let me elaborate. The fact that Autistic people stim generally is pretty well known. I think there are two types of stims “Pretty stims” like stim toys, slime, music, visual stims like paint mixing etc. Then there are “Big stims” I think the main difference between pretty/accepted stims and other stims is the size, playing with a stim toy is small “Big stims” Like rocking, flapping, making noises like “tktktktktktktk”, and even self-harming stims like hitting are all big or loud actions. Unfortunately for me, generally the most soothing stims (for me when I am upset) are “Big Stims” – which makes sense, the bigger the dose of pain meds the more pain fades – like rocking and flapping, hands over ears. The need to stim is fairly constant in social environments, the bigger the stress of the environment the bigger stim I need. Much of my recovery time is spent stimming big. I am definitely afraid to “big stim” outside of a select few safe spaces. Even with “pretty stims” I can get looks or be asked to “put it away/sit still/turn off your music”. I want people to recognize that doing these things helps me succeed in my environment, not distract from whats happening. (Stim Jewelry / Other Copes) 

 

Forgetting. I have a pretty darn good memory, and my brain works quickly to retrieve information. So it always shocks me when NT’s forget I have autism. No, really this happened, more than once. I guess it is because I pass so well and they think they misremember or are confused and eventually forget. It’s a hassle to have to explain myself over and over again to the same people – not that I won’t I will as many times as needed – this also lowers my trust in them to uphold any accommodations I ask for as I believe they are likely to forget.

 

Courage to “come out”. Now I tell people i’m autistic left and right, no big secret here. That is because generally I am in safe enough spaces and have a good supportive community. However every now and then I think “why mention it at all?” I mean I’m not asking for accommodation, they forget so quickly so what’s the point in educating them, truly it seems like a waste. But again and again I tell people because over and over I am told that things like this blog helps people better understand their kids and themselves. That I give them courage.

 

In conclusion High-Functioning is no fun. It’s a lot of hard work but I wouldn’t change a thing about myself. The rest of the world on the other hand; I want people to recognize that just because I need accommodations doesn’t mean I am less, or should be treated like a child. I want people the recognize that just because I can do something once doesn’t mean I can always do it. I want people to recognize that I might “look” neurotypical but that is far from the truth.

I swear I’m listening

Why I don’t make eye contact.

Dictionary – not necessarily the true meaning of words but rather how they are used in the context of this blog

Neurodivergent/ND/Autistic/Aspie/AS – all different terms referring to a person with atypical neurology.

Allistic/Neurotypical – a person who’s neurology is typical “normal”. A non-autistic person.

 

Autistic people have difficulty making eye contact. This is a fact. In explaining why this is I must dispel two of the Great Autism Myths; Autistic people can’t empathize, and Autistic people can’t understand body language. As you probably guessed by my addressing these things as myths, autistic folks can feel empathy and understand body language.

Let’s take care of the easy stuff first. Autistic people, myself included, CAN understand body language, it just doesn’t come naturally to us as it does for Allistic people. Through my 16 years of people watching I have learned how to understand body language pretty darn well. It simply takes a bit of effort for us to process body language, to figure out what exactly it means. “Autistic people can’t feel empathy” – now pardon my language here – Bullcrap. I’ve found that autistic people often over empathize. It’s just hard to deal with my emotions, much less other people’s.

 

So why won’t I (and other aspies) look you in the eye? My reason for not looking you in the eye isn’t just that it’s distracting, it’s intense. It has been said that “The eyes are the windows to the soul” I agree. So much emotion happens in people’s eyes. So I can look you in the eye, but I probably won’t process what you say. So I look elsewhere, somewhere that lets me focus on your words. Where is that? Well it depends how emotional you are. I may be able to look at your face, or even make eye contact if we are having a low emotional conversation. But if we are having a conversation with big emotions involved I probably have to look at my hands, or the floor, or the wall behind you, or anywhere but your face.

 

I swear I am listening to what you say. I know it doesn’t always look like but I am. So give me the opportunity I need to properly listen to what you are saying. That means not bugging me about eye contact. That might mean repeating yourself so I can process what you are saying. That means not demanding an immediate response, giving me time to understand what you said. To put together what you said with the tone of voice and body language. I swear I’m listening, I’m just looking elsewhere.

Trying to relate, please DON’T

Trying to relate, no thanks

Dictionary

Aspie/Autism/Autistic/AS: I use all these terms to refer to people (usually myself) on the autism spectrum

NT/NeuroTypical: A person whose brain or neurology is typical, aka “normal people”

Dyscalculia: A math learning disability

Stim/Stimming: “Self stimulatory behaviors” or stimming is common in autistic people. Generally stimming happens when the person is very happy, or upset. There are many ways to stim, i.e. rocking, flapping, spinning, singing, going tktktktktktktktktk or a thousand other things.

Meltdown: Meltdown is what happens when an autistic person is overwhelmed. During a meltdown, the person is in high distress. They may lose the ability to speak, cry, become violent or a number of other things.

Before you skip reading this because it’s so long, NT folks, don’t try to relate to autistic folks by saying, “We are all a little autistic”. You don’t do the things I do. You don’t have the struggles I do. Quit it and let me educate and advocate.

“Oh we all have a bit of autism” is one of the worst things you can say to an autistic individual (or their family). Let me explain why. First, let’s establish that what you may have is one or two autistic traits. Not “a little bit of autism”. I’ve been told that you are trying to be nice, trying to relate. Yeah please don’t. It’s belittling. I feel mocked. What you say may be “Oh we all have a little bit of autism,” but what I hear is “Your sensory overload, your meltdowns, your stimming, it’s not valid.” what I hear is “Oh shut up nobody cares” what I hear is “I’m uncomfortable, let’s talk about something else,” I hear “Your confession, this risk you took is worthless, you should have stayed quiet,”. In the past, I’ve just shut up when someone says that to me, but that needs to change, that’s why I’m writing this blog.

I’ll break it down for you.

Telling people that I have autism is a risk. I risk them mocking me, abandoning me, or discrediting me. Out of those options, I think the last is by far the worst. I’m high-functioning that makes it hard to get a diagnosis in the first place. I’m fairly sure that if my mother wasn’t an Occupational Therapist I probably wouldn’t be diagnosed. So when you say “we’re all a little autistic” you’ve just invalidated me. You discredited all the struggles I’ve had to get my diagnosis and be able to say “Hey, I have autism”. You made me regret the risk because whatever your intention, all I can think is “They don’t care, they don’t believe me”. So no “I never would have guessed either” because, no you wouldn’t, I already explained that, got a whole blog for you here.

When you say “we all have a little bit of autism” my brain is quick to respond; “So you have meltdowns? So you have sensory overload? So you have to rock and flap to calm down after a room got too loud? So you spend too much time deciding if events are worth it if you even think you can go in the first place? So you spend twice as long recovering as participating? So your brain goes a million miles an hour and you struggle to slow down enough to listen, to interact with NT’s? So you ‘obsess’ over precious special interests that nobody will ever listen to you talk about? So you have to constantly self-advocate and struggle? So you have to decide if this is normal or an Aspie thing? You have autism?”. But what comes out of my mouth is “No”. When you try to relate like this all you really prove is that you don’t understand. Oh and I don’t want your pity either, no “I’m sorry” here, I’m proud of my autism and the perspective it gives me.

“I think we all have a bit of autism,” You say. I can see that you are uncomfortable. I can read social cues. Y’know what, I don’t care anymore. You’re uncomfortable? How do you think I feel when people use “Autistic” as an insult? (have you done that? Is that why you’re uncomfortable?). How do you think I feel when a room full of NT people are talking about the autistic community, no input from aspies. How do you think I feel in this touch-based culture when I really would rather not be touched. I’m uncomfortable all the time, society is designed for you. So just be uncomfortable for five minutes while I try to educate you.

“Isn’t everyone a bit autistic?’ You ask. You don’t care I can tell. You don’t understand what this means, you must have some warped view of what I experience. I’m not a savant, hell I have a math learning disability. You are the reason I don’t tell people.

So please don’t try to relate. If I’m telling you it’s for a reason. Probably so I can advocate. Maybe I heard you use autism as an insult and have decided to set you straight. Maybe I just want you to know. Perhaps I’m defending myself. Whatever the reason you should respect me.

Other things you should not say when someone tells you they have Autism include…

“I’m sorry” – What for? I’m not. I actually like how my brain works, I don’t want to be NT.

“I never would have guessed!” – Again Masking… yeah I was just trying to protect myself from judgment.

or “You look so normal!” Yeah, mhm, and you look so NT. What do you think an Autistic person should look like? Should I wear ear defenders? How about my “I’M AUTISTIC” tee, would that work?

“Oh my (insert relative/friend) has autism,” – Now you can say this, it just shouldn’t be the first thing, you are making it about you. You can say it later in the conversation… maybe.

“So are you really good at math?” – savantism is rare, and I have dyscalculia so nope. This also makes it sound like you think I’m a dog, not cool. I don’t do tricks.

“Wait what’s that?” – Okay, you can say this, just maybe do it more politely “I haven’t heard of autism, could you explain it to me?”

“I knew it!” No, you didn’t not unless I’ve told you before. Stop it, you didn’t know, you just thought I was strange. Even if you did it’s belittling.

“Okay Hannah, so what SHOULD I say then?” I hope you asked. Let’s see….

Things you CAN say when someone tells you they have autism

“Thank you for telling me,” (please try not to sound judgy or uncaring)

“Oh, I don’t know much about autism, can you tell me more?”

“What does that mean for you?”

I really truly would love there to be more positive reactions but I haven’t experienced many. In general the way to have a good interaction with anybody is to be respectful and listen. What the “bad” responses boil down to is people not respecting or not listening to me or what I am saying and the “good” approaches are the opposite people respecting and listening to me and what I am saying.

So take care you’ve been warned no longer shall I hold my tounge with meager responses. If I hear you say something wrong prepare to be sassed, and lectured a little bit. Because the worst thing is when NT’s try to relate.

The Low-Down on Autism

The Low-Down on Autism – and what I know about NT’s (Hannah Edition)

Dictionary: Not necessary the true meaning of words, but rather how I use them.
Neuro-Divergent/Autistic/Aspie/AS: these all mean different things but I use them interchangeably when referring to myself and others on the autism spectrum.
Neuro-Typical/Allistic/NT: A person whose Neurology is typical

I’d like to think I know a few things about Neurotypicals. Mainly because I like to think I’m pretty good at masking. In order to act like someone you tend to have to know how they think. To be accepted you have to know the correct way to act.

I know that Neurotypicals expect eye contact when you speak with them. I know most Neurotypicals – especially in the church community – expect a physical greeting, anything from a handshake to a hug. I know that Neurotypicals expect facial expression and body language to match emotions. I know that NT’s can talk about anything. I know that too many NT’s don’t understand Autism.

It’s not really anyone’s fault. But when 1 in 68 people are diagnosed with Autism of some form it’s a good idea to be educated. There aren’t many excuses not to be; we live in an information age. Additionally, many autistic folks (like myself) and their families strive to educate people

So in an effort to help us all be kinder, more educated people. Here is “Hannah’s Low-Down Autism” or “Things I wish NT’s new” In the form of a Top Ten list. Because I like lists.

One: Every. Autistic. Person. Is. Different.
If you’ve met one Autistic person, you’ve met ONE autistic person.
Just because I know one NT I know all NT’s right? No. So why would that be true for autistic people?

Two: Autism is not an illness
Don’t campaign for a cure, campaign for awareness and acceptance.
Autism is not an illness or a disability it is a different ability.

Three: Autistic people are more than the diagnosis
Too many times “They have autism” is the main descriptor, this is bull. People are not one thing, they are many things. Little Johnny is not “Oh he has autism, be patient with him,” Little Johnny is “Oh Johnny loves cars! He’s so attentive, he can listen while he’s playing,”

Four: Special Interests aka A deep knowledge
I don’t know why it is that is (NT)Suzy over there loves horses and she’s a normal kid who “Knows so much about horses, my little equestrian” Whereas (AS) Amy over there who loves horses is “A bit obsessed, all she ever does is read horse books”. Listen if someone can tell you everything about a subject I’d say they possess a deep knowledge of that subject, not that they’re obsessed. You don’t tell an English professor that they’re obsessed with English, do you?

Five: We have emotions
Wow, shocker, I know, but like the majority of people, autistic folks have emotions. Crazy I know, you know what’s more crazy, often we can feel emotions more, relatively, intensely than NT’s. We simply express emotions in an atypical fashion – that is to say differently than NT’s. A happy Aspie may not smile, rather they might rock or flap.

Running off of that…

Six: Love
There is a ridiculous idea that autistic folks cannot feel or express love. Bullcrap. We can feel and express all sorts of love. Familial to Romantic to Platonic. We just might show it differently.

Seven: Sensory Sensitive
Most Autistic folks have some form of sensory sensitivity. This is because our brains and hence the rest of us are wired differently. For me, touch (tactile) and sound (auditory) are the most sensitive. Little things like a strangely textured tablecloth, a stray hair, ambient music, or any of a thousand other things can be quite distressing for us. And enough of these things might lead to….

Eight: Meltdowns
Or the failure to cope in a world that wasn’t designed with Aspies in mind. Whether mild or severe, implosive or explosive most Aspies have experienced some form of meltdown. Even the high functioning ones like me! Meltdowns are different for each individual – remember #1 – and can happen at anytime. Meltdowns are really frigging distressing, so as a general rule of thumb if you see someone having a meltdown you should not touch them, and instead ask them how you can help, giving them lots of time to respond. What helps one person might only upset another person. Language can be hard to use during meltdowns.

Because meltdowns suck we have….

Nine: Flappy hands are happy hands
Stimming; self-stimulatory behavior is a coping mechanism which helps Neuro-divergent folks focus and calm. There are many kinds of stims: verbal, auditory, tactile, kinesthetic, and visual. There is no right or wrong way to stim. Many Neuro-Divergent folks are bullied or mocked for their stims which is disgusting; especially because stim toys are becoming more popular in NT communities. (stim jewelry / other copes)

Ten: Sarcasm and Jokes
Fun fact – see #1 – some of us can actually understand sarcasm and humor. It might be different than NT humor. I have no clue where this “Autistic people don’t understand jokes or sarcasm” thing came from; not everyone understands every joke; not every sarcastic tone is heard as sarcastic. I frequently employ both sarcasm and humor in everyday life.

So there is the low down on autism; I hope you feel more educated now. There were so many other things that could have gone on this list but I felt there were the ones that I needed to share. If you have any questions about this blog (or any other blog of mine) I am happy to answer them, just ask!