Ah, it is that time of year again: Christmas. There is so much to enjoy about this festive period, yet – being autistic, it can also be hugely exhausting.
Managing your energy levels during this busy time can be a delicate balance act, however you can enjoy the celebrations and take care of yourself.
You can get involved and still honour yourself. It’s just a case of being self-aware and giving yourself what you need.
If you find Christmas often leaves you tired and worrisome, this post will help ensure you do not end up running on empty.
1. It’s okay to say NO
Just because people are inviting you out does not mean you have to say yes. Saying No is self-care. Make sure you build some breathing space into your calendar to allow some time to re-energise yourself. You can block out hours or days if need be. If anyone asks about your days off, you can say “I know myself. I need time for me” — then no-one really can say anything more on the topic (because this is about respect).
2. Find moments of quiet
During parties and other gatherings, make sure you give yourself little quiet moments here are there to catch your breath and pause. Develop awareness of how you feel and give yourself breaks when you need it. You may like to focus on external sensations at first (is my heart beating faster? am i shaky? do i feel sweaty?) to gain some sense of your feelings, then ask yourself “do i need some quiet?”.
3. Be gentle with your body
Christmas is a time of indulgence and temptation. I am not about to suggest that you should give up all the delicious goodies and treats. Just maintain your energy levels in balance by getting enough sleep, drinking lots of water, walking a bit, and eating a few greens. Treat yourself, but remember your body needs kindness too.
4. Enjoy yourself
This holiday season is for everyone, so turn it into something that feels right for you. If you want to spend an afternoon curled up on the couch, then do it. Whatever your traditions or bah-hambug-ness, the origins of Christmas are about coming together and shining a light on the darkness, so if your togetherness is you and a book, and your light is quite literally a lamp, that sounds fine to me! Do what you need this festive time; take control and do things your own special way.
Original text taken from ‘Pocket Christmas Survival Guide’ booklet which I designed for my group clients in 2016, “A is for Aspie”. I hope this guide helps everyone it can!
When you catch a glimpse of your potential, that’s when passion is born.
— Zig Ziglar
Photo by JESHOOTS.com
In autism, one of the diagnostic criteria is to have “Highly restricted, fixated interests that are abnormal in intensity or focus”, with “Deficits in social-emotional reciprocity, restricted to sharing of interests”. While this may sound like an affliction, it actually means that autistics will likely have a ‘special interest’ at expertise level.
I understand that some autistics hate the label ‘special interest’ as they feel this too narrowly defines their passions. I am using the term in this blog post to indicate that which you love to be involved in; that thing which makes your heart sing, which you know a lot about, and enjoy very much. For me it is: research (any topic), gardening, colour-matching, and teddy bears.
Benefits of cultivating a ‘special interest’
The obsession autistics have with their ‘special interest(s)’ means that they, unlike typical individuals, will quickly become experts in their chosen fields. They will spend hours researching, reading, immersing and involving themselves in this interest, even at the expense of other tasks. Yes, not eating because you’ve hyperfocused on researching your interest may sound bad… but it also highlights incredible FORTITUDE, which is a unique and amazing quality to have.
There are 3 main benefits of having a ‘special interest’–
Expertise — Your dedication to your chosen ‘special interest’ shows determination and focus. You are an expert in your topic.
Sharing — Your focus on your ‘special interest’ means you can make friends with others also fascinated by that topic.
Connection — Your passion towards your ‘special interest’ can be harnessed for internships, employment, or options for volunteering.
Having a ‘special interest’ in something can have a positive impact on social interactions and friendships (as you can find others with the same interest and connect over that) AND they can be marketable skills.
If you adore butterflies and moths (lepidoptera, for those playing at home), you study butterflies, read about butterflies, seek out butterflies, and talk about butterflies, you will have immense knowledge of butterflies. While not all people will appreciate butterflies as much as you do, there are some who will. For example– museums, zoos, scientific institutes, research centres and academic conferences– at these places, people will love you and respect you for your love of butterflies.
How to reach others with your ‘special interest’
Having a passion for something is great, but you must get yourself out there, and let people know! Perhaps you have talked to your family and friends already and feel a bit dejected that they are not as passionate as you… but fear not! Here are some other ways to reach people:
Start a blog chronicling your interests, and post a link to the blog on social media
Write articles on your special interest, and submit them to your local paper or autism organization (include a note to the editor when you do this)
Study your interest formally, by going to college or university
Volunteer in the area of your interest (search online to find groups or businesses near you)
Add your special interest to your resume, with a blurb about your research into the topic, how long you’ve been researching it, and why it inspires you
Create your own magazine, e-zine, or website dedicated to your ‘special interest’
Start a business (or charity) to sell your expertise, or immerse yourself in the topic while also giving to others
Visit conferences dedicated to your special interest, so you can talk to researchers in the field, share your knowledge, and learn more
Seek out jobs that embody your ‘special interest’ and apply for roles
Attend social groups associated with your interest, or start your own
Post on forums or reddit, and discuss your interest with others
Whether your passion is butterflies, IT, trains, classical Latin, neuropsychology, dogs, Minecraft, colour-matching, knitting, electric cars, or even 15th century buttons, there is always a place for you in the world. Your ‘special interest’ matters!
I highly recommend autistics to see themselves not as afflicted by “restricted interests”, but to be inspired in their expertise and connect. There are others out in the world who will embrace your knowledge and thank you for sharing 🙂
“Self-care is never a selfish act – it is simply good stewardship … anytime we can listen to true self and give the care it requires, we do it not only for ourselves, but for the many others whose lives we touch.” ― Parker Palmer
These are some divine pancakes I had for breakfast recently at my local cafe… Photo by me!
One of the key ways that I manage my well-being with autism, by keeping anxiety and depression levels low, is taking myself out on dates. I do not bring anyone with me on these dates; I am simply focusing on ME.
I know for many, the idea of going on a date alone seems ludicrous, but it can actually be extremely liberating and exceptionally calming. Being alone does not need to be unbearable or a sign that you are a “weirdo” or a “loser”. Hey, most of us autistics choose to be alone on a regular basis! I know you have a favourite outfit, a favourite cafe, a favourite meal, a favourite book to read… So pick yourself up, get outta those PJs and go on a self-date!
I take myself out, once a week, on a “self-care breakfast”, and it really relaxes me. In fact, I’ve just come home from my weekly breakfast (see pic below!), and considering I had to locate a new place, walked 33 minutes to get there… and 33 minutes back home… I’m actually feeling pretty good I was able to do that!! And get something nice to eat.
Today I had the Big Breakfast, and it was pretty good 🙂
These self-care dates give me a chance to be in a special place outside of my house where I can enjoy the food I like, the environment I like, get to talk to a few people, and I can also “people-watch” or write in my journal.
Self-care dates are SELF LOVE!
Self-love – yuck?! I guess you might hear ‘self-love matters’ way too much, and think this is all happy-clappy stuff. But it’s true. See, self-care is that act of nurturing and caring for yourself; that act of loving yourself. It’s not a selfish action, but a selfless action…. for being able to give yourself kindness means that you can actually be an amazing light and power to all others around you.
Self-care is defined as any activity you do which promotes positive outcomes for your personal health and well-being.
If you’re wondering if you need to start a self-care regime, I’d go out on a limb and say, YES YOU DO. So many of us just don’t do it. Perhaps you give to others all the time, and at the end of the day feel drained and unable to be kind to others? Maybe you just keep promising yourself to book in a massage because you have such a bad backache, but it never happens? Or you spend lots of time working or playing computer games, and then neglect yourself, by forgetting to eat, shower, sleep? Taking some time out to just be with yourself can be so positive for your life.
Ideas for self-care dates:
Self-care breakfasts at your favourite cafe (breakfast time because there are less people in the cafe!)
Sit on a park bench and write in your journal
A trip to the art gallery (on weekdays, to avoid the crowds!)
Watching a movie
Having a massage or pamper day
Learning to dance, rock climb, paint, or ???
Go for a walk in nature
Self-care activities are not over-indulgent (it’s not about eating an entire chocolate cake every day, or spending half your wage on pretty clothes or gourmet foods!); self-care dates are measured, planned, and allow for an external (outside of your home) calming space where you can just be YOU.
Self-care dates improve your life…. How?
Something to look forward to – Even when everything sucks, you always have your self-care breakfast! I love going out to my local cafe, where they understand my behaviours and patterns, accept my teddy bear who sometimes accompanies me, and allow me to just be myself. I go there and I know everything will be okay.
Builds confidence and self-sufficiency – The first time I went out, it was scary because I had to find a new cafe, talk to waiters, and interact with other people. But over time, I found myself more confident in my abilities and more comfortable to just be myself. Going out alone also made me realize I am a lot more capable than I thought.
Expands your horizons – Over the past few years, I took myself on activity dates, where I learned how to dance. This was totally out of my comfort zone, but it was something I had always wanted to do. By doing it more and more, I began to cope better managing my anxiety in groups, and I even met some fun and lovely people.
Try new things – Whether you’re trying a new breakfast menu item, or giving rock climbing a go, when you take yourself out on self-care dates, you will become more adventurous. The key with your self-care days is not to force yourself to be that which you are not… but as you take days just for you, you may find that the “salmon croquettes with poached eggs” might inspire you more than your usual fried eggs on toast…. or that going out to the art gallery may be a new adventure, rather than just walking by the river… Trying new things because it was your own idea? Fabulous!
Promotes quiet-time and self-reflection – Sitting alone with an empty chair across from you can be confronting, but it is also calming. There are no expectations when you are alone. You can simply sit, drink a coffee and reflect on life. Being alone on self-dates allows a space of quiet reflection. You can go for a walk in nature, and think. Sit and think. See an art show, and think.
Makes you a better “dater” – You may not be taking yourself out on dates in order to be a better spouse, but going out alone certainly teaches you some preliminary skills for dating. You know what it is like to be with yourself, you understand the rules and happenings of a cafe, you know how to order, and you also should have a good idea of what kind of place you like! You’ll also be more confident in yourself, and you’ll hopefully also now be relaxed about your clothes/ hair/ makeup.
Teaches financial management – When you take yourself out on dates, you’ll quickly learn that you need to make sure you have a budget, and that you need to stick to it. I’ve set my self-care breakfast dates to a strict budget of $40 per weekly outing. That gives me enough money for one elaborate breakfast meal and two coffees. If I want more, too bad; that’s the budget. This is the amount I can afford. I also learned to manage my weekly money better, because if I splurge elsewhere, I am unable to go out for my breakfast!
Allows you to find yourself, like… really, deeply, completely – I’ve mentioned it above a few times, that going out on these self-care dates gives you a chance to get to know yourself better, build confidence and try new things… and all of this gives you space to figure out who you are, what you like and dislike, what you can tolerate, your triggers and your coping mechanisms. By being out in public with yourself, you learn both the glittering edges of human kindness (they remembered my favourite coffee! they saved my a favourite table! they told me of changes in the menu! they waved to me in the street! they knew I needed lots of space today!) AND your own experience (when is it time to leave? what upsets me? how do i calm myself down when change happens?)
Give yourself a chance to experience a regular self-care date! You deserve it! 🙂
I am listening to what you’ve just said; I am are paying attention; I am trying to communicate the “right” way.
I am trying so hard; but communication is difficult for me. Let me try to outline some of the difficulties I face…. and as I write these, may it be noted that my experience is simply that: mine. Not all autistics are alike. Also, take note that while I say these things are challenging for me, they are not life-threatening insurmountable issues. I have good relationships with others: friends, colleagues… I can communicate with others and I enjoy chats and connections. I live independently and am not “plagued” by these issues. But they are still present. I still experience difficulties. I am not an invalid; but I so have some difficulty.
Something I struggle with is the management and flow of a balanced conversation. As a child, I had so many issues with conversations, and all my behaviours were extremes; now I *think* I’ve improved dramatically… In conversation, I struggle these main issues:
Turn-taking: Wiki defines this as “a type of organization in conversation and discourse where participants speak one at a time in alternating turns”. While I (as an adult) understand the concept of turn-taking, and I know that you need to wait until one person has finished their sentence or thought before speaking, and that we need to listen to understand (not just to reply), I still have trouble knowing when I am supposed to reply. If it’s an interview type experience, I realize when the question stops, I’m meant to answer. But in a social conversation, I am told by a couple of my non-autistic friends that I interrupt them, have monologues, and give too much information ALL THE TIME. I don’t think I do that. But I guess I do? My issue is this: 1) How am I supposed to listen to your thoughts, process what you mean, and contribute in a thoughtful manner, while also continuing to listen to your next sentence, and your next sentence, and your next sentence? 2) How am I supposed to remember my comment while you talk? 3) When am I supposed-to or allowed-to ‘jump in’ or take my turn, with my comment? For me, I don’t have definitive answers to any of these 3 questions. If I am trying to do point 1, I either forget my comment, forget the meaning and context of the topic we’re discussing, or I forget what you’ve just said. If I am trying to to do point 2, I cannot hold my comment and understand what you’re saying at the same time. If I am trying to do point 3, I often end up interrupting because I can’t read the flow of the conversation.
That being said, I love conversations that flow.. and I CAN have them. I have amazing, flowing, fun and interesting conversations with my autistic friends. We jump around, come back to the point, jump over there, come back to the point, jump over there, and there, and there, and back… One person talks and talks and I listen and listen. Then I talk and talk and they listen. We build upon our thoughts and ideas, and we develop a bond in conversation. It’s invigorating.
Also, when I have therapeutic conversations with clients, turn-taking is easy for me. It involves allowing silence, holding the balance between the client talking, and me calmly adding a challenge or remark. The focus of therapeutic conversations is client growth; it’s never about me. I find the rules of therapeutic conversations very clear. But, not so with social chats that I have with neurotypicals.
Banter: I’m not sure where to start with this one! I find banter very difficult to do right. The Oxford Dictionary defines banter as “the playful and friendly exchange of teasing remarks”. In Australia, banter is seen as a common way to make friends. Um… What now? You want me to tease you, in a friendly way? To me, teasing is that horrible nasty unkind and frightful expression of words and actions made to demean and hurt the other party. To me, teasing is not nice. So how am I supposed to tease in a nice way? What is allowed? What is not allowed? How do I know if the other person experiences my teasing as friendly? I have tried banter, and often I am told that I went too far, or said something inappropriate, or was hurtful, unkind, or otherwise WRONG. Another thing I am told I do in banter is that I do not laugh along with everyone when they are picking on me. Well, banter means that people can say unkind things about me, then smile, and then say it meant nothing? In psychotherapy, in a therapeutic conversation, a teasing word carries weight — there is no such thing as ‘playful teasing’; there’s just irritations expressed covertly.
Sarcasm and Jokes: I love being sarcastic and making situational jokes, witty quips, or drawing amusing comparisons between things…. but if you do it, I’ll probably be lost. If we’ve been friends for over 5 years, I’ll probably be able to read you… but anything less, and you’ll probably mystify me! I have been advised that my autism makes it hard for me to understand the thoughts and feelings of others, and that my autism creates information-processing issues for me, so I cannot identify certain parts of language, and its subtleties (Yep, flirting was always hard for me!). I wish I could know when you are being sarcastic or innuendo-y. Generally, I will not clue into your sarcasm unless you specifically say, “I’m being sarcastic” or “just joking”. Generally, I will not understand your innuendo unless you’re specifically referencing a previous time we used that analogy, or unless you add naughty face emojis, or say something like, “boom-chicka-wow-wow” after. In terms of formal jokes, I suck at these. I often remember the punch line, but not the joke story… or I remember something funny but cannot explain it clearly. Another thing I struggle with is the understanding of YOUR jokes. I often ask for clarification, to figure out the reasons why you may think something is funny…. and even then I still may not understand the joke. Sorry, I know this sucks. I hate it. I wish I could understand your jokes, especially seeing you laugh so hard over things.
I think backwards, or to say that another way: I think from the bottom-up. This is a classic part of autism. The typical (non-autistic) approach is to start with the large categories and expand into the smaller parts. That means you build a big picture first, and then fill in the details, like this:
“Cutlery” (concept), and from there you can add “knife, fork, spoon”. These are all types of cutlery.
“Computer” (concept), and from there you can add “Apple, Dell, Asus, PC”. These are all types of computers.
“Doing good for humanity” (concept), and from there you can add “sustainability, be kind to each other, make peace, recycle, donate to charity”. These are all ways you could do good for humanity.
But I don’t see the world in that kind of order. Instead, I start with the details, and then move out. I view the world similar to an AI trying to identify objects.
I start with the details, and then move out.
A demonstrative example is this: When I see something walking towards me and you say, “that it is a cat”, I see something with stripes, short hair, has a certain gait, and is small. Now I think of a cat as a thing which has stripes, short hair, has a certain gait, and is small. But, tomorrow if I see another thing which is black, long haired, and is small, I won’t immediately assume it’s a cat unless you tell me it is. If you tell me this black thing is also a cat, I now can create a category, but still it’s not a complete category with immediately applicable objects and rules for categorization. If I see another fuzzy creature of similar constructs, I may not be able to correctly identify it as a cat. To you in all of this, the catness of a cat is obvious. To me, it is not. Now, while this is a basic example and one that pertains more to the experience of being an autistic child, the overall gist is that I see details first. Over time, using more examples, more experience, more clarifications, I can create the concept of “cat”… but I do not immediately see “cat”.
A more “adult” example is understanding how mechanisms work. Just because I can untie a shoelace, unclasp a sleeping bag, and undo a bike helmet, and untether a rope, does not mean I can identify or understand how to operate other clasps. Yeh, I’m intelligent, but my brain doesn’t immediately process things in categories and similar concepts in this way. My brain doesn’t order things like yours does, so I get lost. It will take me many, many, many, many, many times to develop a category, and even then, when the category is broad (like mechanisms) I may still need help learning how to identify and work with this item.
Neither of us is “right” or “wrong”; we just think differently.
This issue of backwards/ bottom-up approach also relates to how I acquire skills. Maybe you have shown me how to use the DVR player, but that skill does not immediately and automatically transfer into my understanding of how to use an XBOX, or to the notion of selecting items on a screen, or to using remotes in general, or how to remember menu titles and categories. For you, this will be automatic learning crossing multiple platforms. For me, it’s a long process… and a slow one at that. I will look at each new item and each new activity with complete wonder, trying to figure it out.
Again, let it be noted, I am not stupid. I just don’t think like you do. I think bottom-up. You think top-down. Neither of us is “right” or “wrong”; we just think differently.
Another thing I find really challenging is processing information. While it is definitive that autism causes an information processing disorder in the affected individual, I also have dyslexia issues. I reckon you non-autistics and those without learning difficulties probably don’t really understand what this actually looks like/ manifests as… So, here are a few things I experience that are related to my processing issues; things I find deeply challenging:
Sensory difficulties: Part of processing information for me includes the processing of sensory data. Sensory processing involves taking in information from the surrounding environment through touch, smell, sound, vision, taste, movement, and gravity. I struggle with the processing and interpretation of these sensations in my environment. There’s no wrong with my ears, eyes, skin, or thyroid; my experience is just… I dunno “autistic”? I was born this way.
Essentially for me, everything sits in quite intense extremes, with only a few things in pleasant spectrums. I love colour and see all the gradients of green in a tree; I love texture and see all the groves in a surface; I enjoy touching hedges to feel the textures against my fingertips, or touching blankets and materials to explore softness and pressure…. But conversely, I find the sun BLINDING — like vampire-level blinding. Even when the sun is obscured my clouds, I find it overwhelmingly bright. Hot showers almost always feel FREEZING cold and I get goosebumps, as if my body has no idea what temperature it is. I find a passing truck extremely loud, like it hurts my ears. Or a ticking clock somewhere at night, ticks like a huge drum echoing in my head. Or even hand-dryers in bathrooms — those are LOUD!! I find perfume on ladies or someone’s bad breath TOXIC to my nose, so strong and pungent that I can’t breathe. These are only a few things, but you get the idea. The sensory information coming into my brain is like a spinal-tap 11. It’s a full intense experience set to 100%. Now, I understand in typical non-autistic brains, “filters” exist which stop the extremities of a sensory experience. But I don’t have filters, because I have autism. What I do have is coping mechanisms and outright lying. I cope by wearing sunglasses, blocking my ears, or leaving the location of the smells. I lie by saying I’m not bothered by touch, or I lie by acting like the sun is not blinding me on a cloudy day, or I lie by pretending I feel no pain from loud noises or from intense sensations. And the reason I lie is to appear normal to all of you. It’s not easy.
I walk into things: Part of my sensory experience and my processing difficulties manifest as clumsiness. As a kid, it was sort of manageable, because people forgive you… but now being an adult, it is embarrassing to walk into objects, trip over the (flat) floor, to misjudge the hole of a doorway (and whack my shoulder into it), or to move my hand innocently and knock a cup or -whatever- off the table. When I stand up, I feel unbalanced most of time, as if my feet are not large enough to support my giant body, and it often hurts to stand upright. I see objects fine; I have beyond perfect vision. The problem lies in how my brain perceives my body in space. It’s weird. And I live in anxiety that others will also knock things off the table when they’re talking, with hands waving about. For example, I have to constantly remind myself that my partner isn’t autistic, so they won’t knock things over… but I’m always on guard to catch falling items!!
Slow thinking time: I take much longer to “get” something, and much longer to process what is being said to me. I find it easier to learn by demonstration where I can actively participate in the “doing” of the activity, along with visual cues. Recently a loved one showed me how to use a staple gun. At first the stapler scared and confused me, but my loved one demonstrated the use of the item and let me try it out under their supervision. This activity helped solidify my understanding of how to use the staple gun and reduced my fear and confusion around its use. I also find written materials can assist me and help me understand what is truly being said, but I thrive on the doing of the activity. While this may sound completely learning-styles related, my point is that my information processing time is still slower than yours.
Some things (like visual learning) help, but on average, it takes me ages to learn something because I need to understand every facet of it to learn it. I tend to ask questions to learn; every question possible. See, my brain processes things slowly and methodically, creating full intricate structures of hierarchy determining the place of an object or concept. There are times when I may look at you with a blank stare when you share something with me, or when you give me instructions, but that’s not me being stupid or not listening/ hearing you. What’s happening to me is a processing of the information. I am trying to link together the ideas from what you’re saying to what I know, and make sense of these concepts in the current context. Other times, I may immediately say, “I’m confused” or “It doesn’t work” or “I don’t know”. This usually will irritate you non-autistics. All you see is the outcome, not my intensive desire to process and understand the information, nor the suffering I experience in the slowness of my processing speed. To you, learning and generalizing tends to happen quickly and (most probably) unconsciously/ automatically. To me, it is a slow process.
One good thing though — it may take me longer to learn and to understand, but once I have learned something, it enters my deep long-term memory, and then I will never forget it.
Losing my words: Sometimes when I talk, and sometimes when I write, I lose words. *SOMETIMES* This happens two-fold. 1) I can sporadically completely forget the meaning of words, as if that word was something I have never known. This can manifest as asking you to tell me what ‘table’ means, or with me trying to explain something, giving you only its parts (i.e. “it has four legs, is made of wood usually, flat surface, you eat dinners on it?”); 2) I can say something when talking aloud and unknowingly omit words from my spoken sentence. So, I think I’m saying, ‘Let’s go out tonight for dinner. Maybe to the city?’ and I actually say: “Out tonight to the city?”. It’s not until I get feedback and considerable discussion from the person I am speaking to until I start to understand that what I thought I said and what I said wasn’t the same thing. Losing words is part of my autism. I think it’s called auditory processing disorder. Essentially it’s a brain-related difficulty in processing sound. There’s nothing wrong with my ears! I just sometimes lose words because brain is struggling to gather and classify all the information that I hear.
I see in pictures. I’m pretty sure this is a dyslexia thing, but I have read that some autistics also experience this too. I see my world in pictures, and I want to communicate in pictures. I know, you may look around you and think you see in pictures too, but what I mean is: I find words and numbers just weird squiggles without any real inherent meaning. A picture of a tree means more to me than the word, “tree”. I have learned to use words, but because my primary comfort is pictures, I sometimes lose the words or cannot find a word because I can only access a picture in my mind. I also find I can struggle with meaning of things you say to me, because I’m trying to find associated pictures. I do this especially when the stuff you’re telling me is new or if you’re giving me instructions.
If you want to help me understand something, use visual cues. Like, draw a picture of it, or show extreme emotions in your face, or EXXX-AAA–GGGERR-RATE your words. If you mumble your response or just say something over and over the same way, I’m not going to suddenly understand. Paint a picture for me– literally! 🙂
No idea what you mean: My catch phrase should be, “What?!” or “Huh”, because I say it a lot when in conversations. It’s not that my ears don’t work, or that I am not listening, or that I am ignoring you. What’s happening is that the information is not coming through in my brain in a correct fashion. It’s not you; and it’s not really me… it’s my brain. I can’t change this. It’s my brain! So, not always, but sometimes, you can be talking to me, and the way my brain processes that information appears to me as if you’re either speaking gibberish, or that you are saying something which you are not. I can hear a sentence you’ve said with key words missing (you say, “Don’t put the spoon in the sink” —and I hear ‘Put the spoon in the sink’), or I can hear it as if you are saying a jumbled sentence (Spoon in the put don’t sink). If the sentence does not make sense, I will question you about it. While that sounds easy to deal with, sometimes it can cause big problems. Like, there’s a huge difference between DON’T do something, and DO it. If a word is missing and the sentence still sounds normal (like “Put the spoon in the sink”), I’ll just do that (i.e. put it in the sink). But when I act on what sequence of words my brain translates your words into, then what usually ensues is the other person saying that I am not listening or that I’m acting out. I’m not a bad person, or a distracted person, or even a selfish person. I am simply acting based on what my brain is letting me hear. I cannot control what my brain lets me hear. It’s frustrating, but its my brain! I also know that I cannot live my whole life questioning every single thing said to me, so I must believe that I am hearing some things correctly… or you’ll go nuts, and so will I!
As before, if you want to help me with this: to hear things correctly, then paint a picture for me. Show me. Illustrate what you mean is something other than words.
Following instructions: Similar to losing words, or not knowing what you mean, I struggle with following VERBAL instructions. There’s something about hearing instructions that confuses me. Even simple basic spoken instructions can confuse me. My autistic brain does not let me hold in mind multiple steps of a greater task. If I have it written down, then no problem; I can read the steps and perform them as instructed. But if you say it to me, then I can’t do it. It sucks, but my brain won’t let me retain that information. For example, if you wanted me to wash the clothes and you said, “pick up all the clothes on the floor, take the basket to the laundry, detergent is in the cupboard on the left, you know the one next to the towels, then wash everything but the socks” then I may get to the laundry and totally forget the rest of the instructions. I’ll come back to you and say, “I can’t remember what I was meant to do” or “I’m confused”, and that probably will irritate you. It’s not that I can’t follow instructions, or that I’m not listening/ hearing, or that I’m trying to inconvenience you. It’s simply that my autistic brain isn’t allowing me to process this information in this way. Similarly, had you said a shorter instruction, “wash the clothes, detergent is in the cupboard on the left”, I may still get confused. I can’t help this. My brain makes it really difficult to process instructions, especially when verbal/ spoken-word. My coping mechanism is to write down steps, make lists, stick lists on the wall, or to repeat the steps you just gave me back to you. I know this probably annoys you. But I am trying.
Reading — OMG, reading: You may have noticed by now that I’m pretty good at writing. I am also reasonable at reading. I write ‘OMG, reading’, because reading for me is not exactly a fun activity. I know most of you, even some autistics, love to read. But for me, reading is hard. It has always been extremely hard. As such, I rarely read “for fun”. Reading words for me, is like seeing a page of scribbles and having to consciously remind myself that I can actually understand these symbols; that these symbols have inherent meanings. Yet, I am reasonably good at reading and writing because if I misunderstand or misread something, I can re-read it. Or re-write it! In fact, I re-read my work over and over and over again. This is why I am great at editing. I also spent considerable time in my youth developing my observation and detail-focus skills to hone my writing skills. I realized I needed a way to communicate effectively, and I figured out that I could make writing my forte! So, because I am used to misunderstanding and misreading things, I am alerted by incorrect shapes to words, bad spelling, poor grammar, missing words or letters, and where meaning is lost. I also read out loud. When I read out loud, I hear the words in my head and I hear what is wrong, while seeing (reading) what is wrong. With conversations in person, I cannot see the words, or re-read the words, or reflect on meaning… because the spoken word is said and then it just disappears. So, reading is hard for me, but I much prefer it to hearing speech as I find it easier to convey meaning and thought when I have a chance to confirm the particulars.
Obviousness: This is something I want to include in this section because I often hear from angry non-autistics claiming that my lack of knowledge or understanding on a topic seems strange because the thing they have described to me is “so obvious” or “so logical” or “so clear”. Um, well, I think nothing should ever be considered “obvious”. For something to be inherently obvious would mean that every single person in the world would understand it, and I reckon if “obviousness” was true in our world that we probably would never have disagreements or wars. I get it — you’re frustrated that I’m not doing what you said, or that I am not understanding what you said… And I know in many situations, you will think something is inherently obvious, and that perhaps most of the population will also think it is obvious, logical and clear… but it is not “obvious” to me. I’m pretty sure my difficulties around understanding your “obvious” statement or instruction is linked to my information-processing disorder, coz I’ve tried to understand. I want to understand you, I desire to do so. I’ve focused on you, I’ve listened to you, and I may have even taken notes… I am intelligent, I am learn’ed, and I can do and achieve so much, so if I can’t understand you when it’s “obvious”, there must be something else at play!
Something else I find a challenge is expression. I know this is a big part of communication. I have quite a bit of difficulty reading others in a non-therapeutic setting. In therapy, I shelf all my own experiences and feelings, so my focus is on the client. I see the client, I listen to the client, I connect with the client. The client takes all of my attention. This way, there is significantly minimized chance of misinterpretation, mishearing, or an incorrect ‘reading’ of the client’s emotional state. Because I am hyper-focused on the client, I am in their world with them, working with them… I can see group dynamics and individual emotional states in the therapy room. But when I am in a social setting, expressing my feelings and thoughts in a balanced equal manner, where the focus is between the people in the social setting/ not directed solely on one person (i.e. the client in therapy), then I struggle with expression.
The “right” emotional face: I was never taught how to show emotions, or what they look like. So, while I totally “get” some emotions, like smiling or laughing when happy, others are vague to me. I also have a response of crying when arguably crying is not the best course of action to suit the occasion. Maybe I’m over-analyzing this, but I’ve been told I cry too much, too often, and not for the right reasons. Crying is my natural first response to fear, shame, sadness, frustration, shock, happiness and wonder. I can differentiate which state I’m in at that time, but to everyone else, all they see and hear is my crying. Another thing is my face expressions. I feel my face doing all kinds of things, pulling in different ways, but I have no idea what’s going on there. People will often ask me if I’m okay, or what’s wrong, or what I’m feeling, and then look bewildered at my response. I’m not angry or sad — I’m just being me, with my face!
Vocal difference: I think I’m quite expressive in my voice, as I did drama at school and have taken lots of drama courses since. I also sing and have worked to improve my range of vocal expressions. However, I am so often told to lower my volume; the volume at which I speak is apparently often too loud. I talk loudly because I need to hear myself in order to make sure I am hearing it correctly. I guess I could have benefited from some kind of speech therapy as a child, but I never got that.
Look into my eyes: I read recently that you’re supposed to maintain eye-contact when speaking to someone because “we speak with our eyes”. Well, I’m gonna sound super autistic here, but NO, we actually speak with our mouths.
When I make eye-contact with you, this is a learned behaviour. It does not help me hear you or understand you. In fact, during speech and conversations, if I look in your eyes, I actually struggle even more with processing the information given to me.
I’ve also read that people who do not maintain eye-contact during speech have “something to hide” or are lying. Um… That’s not true for me. I just look into your eyes when speaking to you because I have been trained to do so. Yes, like a trained monkey, I perform the behavioural action, but this is not natural for me! When I look at you in your eyes when I talk to you, or you talk to me, I actually struggle even more with processing the information given to me. When I glance away, close my eyes, or turn my ears towards your voice, it’s not me being rude; I’m actually trying to give myself the best chance possible to connect to your words, to hear you without missing anything, and to understand the meaning and context of your speech. I am not the only autistic person who finds this “rule” of having to maintain eye-contact while talking to someone irritating. Many autistics suffer being forced to look at people. Growing up I heard, “Look at me when I’m talking to you!” and “Don’t you dare look away!” Sorry I’m not looking in your eyes right now. I’m actually trying to be respectful by making a concerted effort to truly HEAR you.
It totally sucks, being a minority. No matter what brilliance you have to offer, most often you are left in stigmatization. You’re different, so you’re rejected. We like to tell kids that difference is special and uniqueness matters, but just have a quick look at our world — read the news — and you’ll see, humans still attack each other over difference.
The majority perspective is the “normal” perspective. This is the basis of our modern world: positivist, concrete, systematic, precise, ordered, categorized. While this way of understanding the world has many benefits, it also creates notions of dysfunction (normal vs. abnormal) and behaviours of judgment (acceptance vs. rejection).
If you’re not normal, you’re Wrong.
If you’re not normal, you’re Ostracized.
If you’re not normal, you’re the Minority.
A Gifted Minority
What do I mean by gifted? Well, a definition is: ‘individuals whose skills or talents exceed above-average levels of human performance’. Giftedness is usually correlated with IQ scores (130+), but giftedness can also belie artistic brilliance or talent.
I have gifted talent. My IQ is 143, and I’m a polymath… that is — I don’t really find anything difficult to learn or comprehend. I learn very quickly, and while there are subjects I don’t particularly like, I can do them… and I can do them well. As such, I study always, research everything and I just know a lot about a lot of intersecting things!
So, what are the challenges? Well, most significantly, I think the problem is the majority. That is, here you are in a world which is largely populated with people who are less intelligent than you, less capable than you, and less able to comprehend your complex thoughts. As such, any interaction with the majority is… well… difficult.
An Autistic Minority
Autism is a neurological divergence in typical development. Some areas of functioning may be inhibited, and other areas enhanced. Every autistic person is different, and they experience their autism differently.
I am autistic. So, my way of understanding the world is atypical. What are my challenges? Well, I have executive functioning issues which makes it difficult (at times) to make decisions, I have dyslexia (though I am hypervigilant to try to notice errors and fix it), I may misunderstand a joke, taking someone literally when they were being metaphorical (or interpret something metaphorically, when they were being literal) — that’s always fun! *sarcasm* Yes, I often feel puzzled about social interaction, I collect plushies, and I need sensory soothing objects to bring me peace when the world seems all too overwhelming.
Usually people don’t SEE my struggle because I have learned to mask it. When I am out in public, I spend a great deal of energy pretending to be normal, to fit in, to give an impression of “belonging”. But you know, it’s tiring. It’s utterly exhausting to pretend.
And sometimes, when I’m out in public, I just can’t pretend anymore and that’s when people do see my struggles. I try VERY hard to make sure no-one ever sees my autism. Why? Because when they see me this way, I am treated as if I am stupid or crazy.
I find this is SO much worse when you’re actually gifted and intelligent but you’re treated (by people who lack intelligence) like you’re the one with the problem!! WTF?!
Being different is really hard…Growing up, I was aware that I was totally different to others, with a reasonably high IQ (which, by the way, relative to my family is quite low), but completely unaware of being autistic. Arguably we all exist in this state of “unawareness” of our divergence from the norm until we encounter the norm! In full disclosure, I was identified (by a professional) as autistic in 2015 and I received my official piece of paper ‘proving it’ in 2017 (diagnosis). My point is, as a child and as a teen, and for a giant chunk of my adult life, I was unaware of my autism. Although I had incredible talent, I knew I was bright and capable, I always felt as though I was defective in some way. I didn’t fit in, I doubted myself, and I suffered quite a lot.Something I have noticed since ‘coming out’ as autistic is the prevalence of stigma and discrimination from others. Yes, I have talked about this before on other forums, but I want to express the importance of how it feels to be on the receiving end of some of this stuff. Hearing these comments (even when directed at other autistics) is upsetting. It is part of the struggle, because, well — I care.
When describing my experience as an autistic —
COMMON RESPONSE: You are wrong. I know better.
“No, that’s not autism. You’re just anti-social and rude”
“You don’t have any empathy, do you?”
“It’s called ‘introverted’ — not autistic”
“You’re just not trying hard enough”
“You can’t stick to anything. You’re just too scattered. You can’t do anything.”
I probably don’t need to tell you that hearing these things hurt. Not only are people who speak to me demonstrating their complete and utter lack of awareness of autism, but these statements also place my experience and my identity in the realm of “not recognized” and “not worthy”.
Another struggle I experience is that people seem unable to comprehend what I can and can’t do. This is not an issue limited to being gifted and autistic. I’d argue individuals with a variety of disabilities experience this.So often I hear disparaging comments when I am trying to shine, when I have an idea, when I share my abilities, when I talk about theoretical possibilities. In the academic realm, I do have small groups of people who believe in me and who value my unique perspectives. But, alas, in other areas — especially in job seeking — I find people’s small-mindedness ever present.
When describing my gifted ability and my talents—
COMMON RESPONSE: You are wrong. I know better.
“You’re lying about what do you can do”
“No-one can do all of those things”
“You think you are better than everyone else”
“You will never be able to do that”
“That idea is impossible”
“Your knowledge and skills are not transferable”
“This is the way it’s always been done — stop trying to change things”
“You don’t know what you’re talking about”
Being told these things also hurts me deeply. I have arguments against all these points, but now I just don’t share them. If someone has this position about me, then what we’re seeing here is an impasse. I often reflect, one the reasons I live with a quiet pervasive existential depression is due to the fact that the world is full of suffering, and the act of discrimination and disconnection is a human trait. Humans fear difference — it is a survival mechanism, and it is so strong in many many people. When someone shares their ability, and you can’t do that or you can’t understand that, don’t reject them! Yet, people do this all the time. They make assumptions, they judge, they rule you out, they exclude you… And it hurts!In an interview, I once was told: “You’ve done too many things. It shows you can’t commit to anything”. This person described ME as flaky and lacking focus because I have done so many things, and studied so many areas. He didn’t truly see me. This person refused to see who I am, and instead judged me for who he assumed I was.
Strengths: An Improvement-Focus
Is it a gifted thing or an autistic thing that I get extremely bored when I’m not being intellectually challenged? Who knows! But, it’s true: I need stimulating input all the time. I have a need to continually work to improve things.
Improvement matters. It’s about making things BETTER. I am committed to improving myself, to improving my environment, to improving others, to improving the world. Everything has the potential for growth, and it is something that’s positive.I am excited by the aspect of LEARNING, and I enjoy exploring topics and ideas and developing myself as a rich and full person with knowledge in many arenas. I also believe that you can’t really understand something until you do it, so I try to do activities that reinforce my learning in theory… and that means I’ve done a shit load of things.
See Me, Don’t Diminish Me
I have also been told (in response to explaining my challenges), “that’s not a real problem; everyone faces these struggles in life”, and though I recognize all humans experience challenges and all humans receive judgment at times, the plight of an autistic and/or gifted individual is not the same as “all humans”. Being continually given a label, being told that your ideas are wrong, being told that you are incapable or whatever you have in mind is an impossible task — WOW, that’s a way to kill creativity and punish a human. Are we really so draconian?And my wish is simply to be SEEN. Authentically SEEN.
I am capable — just look at what I can do! Just look at my qualifications. Just look at my academic scores. Just look at my experience. Just hear what my teachers think of me. Just listen to my words. Just give me a try. Just believe in me. Just see ME as a person, not as “something flawed”.
In sum, I reflect that being autistic and gifted is hard. It presents conflicting struggles. On the one hand you’re bright, so it should be easy to excel, but on the other hand, you’re restricted by your disability…
Yet, my autism and my giftedness are things I cannot change; these two parts of me that are ME. They are my identity.
Being a minority, I have to fight for everything that I want to do. Yes, I know there are always people worse off than me, and everyone has their own “fight”, but with autism and with giftedness, I am constantly put in situations where I have to prove to the majority that I am capable, that I can do it, that I do matter, that I have something worthwhile to say, and that they should listen. And this is saddening too.
It hurts to be a minority and not be heard. It hurts to be a minority and not truly seen.
With all things, and perhaps this is my nature, I seek to IMPROVE. I want to make things better. I want to grow. I will keep moving forward, keep working on myself, continuing to research topics I find valuable, and perhaps somewhere in that, I will find kindred spirits?
Emptiness. Sadness. Missing out. Not feeling part of it. Yucky. Unpleasantness. Disconnected. Uncomfortable. Not fitting in… but wishing you did. Without friends. Without anyone. Just “without”. Being all alone.
I think there’s a difference between being alone, and being lonely. Although being autistic makes it hard to find the thin veil of this line. I wonder, perhaps loneliness is not so much “being alone” or “to have solitude”, but rather, “feeling unwanted and isolated”?
Understandably, feeling unwanted is an emotion that goes hand-in-hand with autism. As a person with autism, we are different. We are “unwanted” by the typical mainstream society… or at least, that’s how many autistics feel growing up. But, as we are on a SPECTRUM, each person on the spectrum is different. Although we share a common problem (autism-ness), we still have a wide array of different interests, ideas, and life experiences. So some of us may feel variations of this loneliness sensation.
Loneliness has its benefits, and its pitfalls.
In the quiet space of being alone, of having solitude, there is a great deal of space for self-reflection, to be able to see things clearly and create a future plan to explain and “release” ourselves from current issues…
However, being alone also brings out our negative thought loops and overthinking of things. Being autistic means I sometimes experience an issue of “analysis-paralysis” where we analyze ourselves into corners.
I think that’s why having a good therapist is so important. I can be be alone, but see my therapist to air my ideas and thoughts, gain feedback, and see where my thinking is skewed. As an aside, I’ve had a fabulous therapist for the past 17 years and she’s really helped me to not fall into analysis-paralysis when I’m alone. I find my alone times very self-caring now. I find the solitude brings me peace.
How to work on/ work with loneliness
First and foremost, I need to say:
It sucks to feel darkness in loneliness. It really sucks.
But you CAN work on this.
The catch – yes, there’s a catch – is that working on loneliness is like working on any emotional state you perceive as “bad”. It takes WORK. When something feels bad, it is harder to look at, it is harder to work on, to work through…. because, quite logically, it feels bad! Consider this: when you feel good, everything seems easier, correct? When you feel good, being in the world is enjoyable, and things you do are more uplifting. When you feel “bad”, it’s going impact on your ability to stay with it, and to get things done. In a nutshell, that’s depression.
So, when you feel loneliness, and hence, you feel “bad”, the most most common response is to run away. Fight or flight. Something is hurting me (in this case, emotionally), so I can either choose to fight it (but stay in the emotion) or run away (get away from the emotion). It does, on a very basic level, make sense you want to retreat.
Here’s the tidbit of useful information-
Sometimes it’s okay to run away. Just don’t make a habit of it.
How to deal with “bad” feelings?
It is all about a journey of self-care. Self love, as it were. Now, I know self-love has been absorbed into a happy-clappy new age concept, but it actually sits at the very core of our human psychology. If we care for (or love) ourselves, we are able to give ourselves what we NEED. Self-care is about becoming aware of what you actually need in the moment, not what you want.
For example, when you are out with a group and feel uncomfortable, perhaps what you truly need at that time is to stay. What you want might want most is to run away, but what you need (from a deeper psychological perspective) is to be present in the experience and try to connect with others. It’s also possible that what you *need* is to recognize that you have reached your limit of social interaction and you need to accept that is okay for today. You may want to stay in order to prove to yourself that you can, or because you want others to like you (and think you’ll be judged if you leave early), etc. Do you see how your needs and wants affect each other? It is essential to learn self-care so that you can protect yourself and give yourself what you need.
Sure. I can put my needs first…. but how do I figure out what I actually need?
A good question!
Quite simply, trial and error. In a more complex sense, you will find that more introspective work or mindfulness activities will help you begin to understand yourself better.
Having a supportive therapist is excellent for help with your own inner-journey
By working on ourselves, by loving ourselves, by building a relationship with ourselves, we are able to build meaningful connections with others. And we are more able to manage and understand our emotions.
Specific steps and strategies to manage loneliness
Talk to your therapist about your feelings of loneliness. What happened? Where were you when you felt loneliness? Did you feel any other feelings alongside the “loneliness”?
Become mindful and aware of your “lonely feeling” states. It’s okay to feel a feeling. Be mindful of it. Hold that feeling in your mind, and breathe. Tell yourself, “Hello Loneliness. I am aware you are here again. Welcome Loneliness”. This might be hard at first (like, why welcome something horrible?), but the more you do it, the less power Loneliness has over you. You are in charge of your body, of your mind. Befriend all feelings you have. Loneliness is part of you. Being mindful of the less nice parts of you, is loving yourself.
Act on what you need rather than what you want. When you begin to turn inward (in terms of working on your psychological space), you will learn to love yourself more. You can learn when it is time to stay focused on what you need, instead of reacting or following your habits/ automatic behavior patterns and thoughts. How to do this exactly? Self reflection, chatting with your therapist, reading psychological books and critically analyzing yourself.
Practice self-care by setting boundaries. You’ll love yourself more and you’ll also feel less lonely when you set limits or say no to work, love, or activities that deplete or harm you physically, emotionally and spiritually, or express poorly who you are.
Protect yourself. Bring the right people into your life. Surround yourself with people who support you, encourage introspection and self-growth. If you have experienced a trauma growing up, make sure you talk about it with a therapist. Show yourself a little kindness. What happened to you was horrible; it wasn’t your fault. You deserve a little kindness….
Forgive yourself. Hey, sometimes we forget to show ourselves a little gratitude. We often don’t stop and think about how we may tend to demand perfection of ourselves. We can be so hard on ourselves! Certainly be responsible and take responsibility for your actions, but remember punishing ourselves too much for our mistakes is not helpful. You have to accept your humanness (the fact that you are not perfect), before you can really love yourself. Practice being less critical of yourself when you make a mistake. Remember, making a mistake doesn’t mean you are a horrible person. You are human, so give yourself a break. Forgive yourself for getting it wrong. Accept your humanness. Take note of the mistake, apologize if you have hurt others, and now set your mind to making it right. If you have learned and grown from your mistakes, that is a positive thing.
So why even “love yourself”? What’s that got to do with loneliness?
In short, when you feel lonely and “unwanted”, what you’re really feeling is a lack of connection with yourself. I know that sounds self-help-shitty, but it’s like this: When you have strayed from your strong sense of self, or forgotten to self-care, you’ll start doing things that are destructive. You’ll start feeling that experience of being unwanted and alone, even in relationships/ groups. You’ll have more fights with others; more misunderstandings, more issues…. and you’ll also find your autism “gets worse”.
The fact is, we do not always really love ourselves or care for ourselves. It’s hard to always self-love and self-care. It’s hard for most people, but when you’re autistic, I’d garner it’s harder. Not only do we have life events and stresses, but we’ve got all these other thoughts going on in our head– sensory challenges and taking on feelings, overflowing changing emotions, intrusive negativity, recollections of things other’s have said, quotes from books or films we’ve read, things our friends/ family/ partner has said, our own ideas– all this jumbled stuff to sort out and to choose which is important (which is “correct”?).
Being autistic means I know sometimes I don’t hear things correctly, and sometimes I don’t understand what is meant, and sometimes I can’t interpret your face/ tone/ expressions, so I know I’m already on the back foot in communication. I am acutely aware of my limits.
My loneliness and disconnection from the world and those in it just grows and grows when I deny my own self-care time.
So, I may go to a group, try to get myself “back out there” and then I feel lonely in the group. I feel lonely around my family/ friends/ partner. All this: the loneliness with others is not about them. It’s about YOU. That feeling lonely is actually reflective of your own disconnection with yourself.
When you love yourself, you build the connection with yourself and you self-care with intention and kindness… So, you deepen your connection with yourself, and this solidifies your strong sense of self. In turn, the deeper your self-care focus, the more you can build healthy connections with others.
Beautiful, isn’t it?
Figure out your own self-care plan
When you’re “back to normal”, or working with your therapist, it’s a good idea to create a self-care plan. A self-care plan is as the title suggests: a plan to increase your self-care, something that is manageable and when you do these things, you feel good. This can be a 1 page go-to list, or an essay-length plan. It just needs to be YOUR plan. This is about you.
Think about the answers to these questions, to help you develop your own plan:
What indoor activities lift your spirits?
What outdoor activities lift your spirits?
What music makes you feel happy?
Who do you most enjoy spending time with? Why?
How often (per week) can you give time to your self-care? How long?
How often do you need to see your therapist? Do you have a next-appointment booked in already?
How do you feel when you self-care?
Describe how you know your self-care activities are working for you.