Before (and since) I got my diagnosis, I have heard many classic one liners, mostly from unaware doctors and therapists, to explain why *in their totally unqualified opinion* I couldn’t possibly be autistic. Some are funny, some are down-right offensive, and most are– soooooo common!
Feel free to share the ones you’ve heard in the comments below.
“You can’t be autistic because….”
* You have a degree.
The number one reason I can’t possibly be autistic is this: because I have a degree. In fact the more qualifications I have, the less possible it is (in many doctor and psychologists’ eyes) that I can be autistic. I find this deeply offensive.
Yes, apparently, being autistic means I cannot be intelligent or able to achieve a degree from university. Hmm. What about Temple Grandin – PhD!?
* You are female.
According to some doctors, being autistic is a male only issue. This is such ARCHAIC knowledge. Autism is a human condition, not a male-only issue. Plus, err… must I remind you: the most well-known autistic is Temple Grandin.. a female!
* You can talk.
Shock horror, I can talk! Not all autistics are mute, mofo.
* You look normal.
I am not sure about this one…. but I think the doctors are referring to the distinct dysmorphic facial features seen in Down’s Syndrome. While autism and Down’s share some characteristics, the facial features are rarely shared.
* You are sociable.
Lol! This was the most embarrassing to hear. I wanted to scream, “I’m fucking pretending!”, but instead said something polite… I think I said, “mmm well, not always sociable”. Yep, there’s pretense and coping; but there’s also that I genuinely do enjoy some people’s company. I think autistics are typecast as these sad awkward loners, but you know, some of us do make friends, have lives, chat with people. Just because I love to laugh and be with my small group of friends every so often doesn’t actually make me “socialable”, nor does it make me “anti-social”.
* You have a relationship.
I hate this. The idea that autism (or any mental health condition, for that matter) means that for some reason we’re seen as less able or less willing to want LOVE. It is true that some autistics are not interested in romance or sex, but similarly, some of us are! I adore having Z. in my life, and I feel so appreciative of the connection we share. Having a love-relationship matters a whole lot to me, and my autism shouldn’t mean I do not deserve that…
Any more out there?
Share your WTF “you can’t be autistic because…” reasons, and who said it to you.
All at once, those noises that previously were manageable are now too loud, those smells are too much, and you are crying, frustrated, and cannot make sense of much of anything….
Oh no, is my autism getting worse?
First things first: Autism is a neurological condition with no cure. You cannot “get better” from it, nor can you really “get worse”. What is happening at these key times is glaringly simple (which is why I think we overlook it so much).
Getting “better”? — That’s your coping strategies in action.
Getting “worse”? — That’s a sign of autistic burnout.
What is autistic burnout?
Autism is diagnosed by identifying a set of differences in behaviour, learning, and self-expression… these are defined as “deficits” by (the majority of) society. As such, we autistics begin to learn new skills and techniques to manage in the world, to cope, to find calm and to “fit in” or “be seen as normal”.
Many people on the spectrum, young and old, have personalized techniques that help them cope in daily life. Some things we learned from teachers, parents, caregivers, friends, or from reading books. Other things we learned from our therapist, doctors, or by observing other people. All the strategies we employ to manage in our world are *learned*.
The thing is, when an autistic person is exposed to prolonged stress, they can (like most stressed people) forget how to think…. and this causes “autistic burnout”.
While a non-autistic having a moment of vagueness while stressed may reflect, ‘well I can still manage and not feel burnt out’– To them, I say this: YOU ARE NOT AUTISTIC. Essentially, autistics need extra energy, extra focus, extra inner-calm in order to manage in the world, so when autistics get stressed, they lose all that “extra”.
Autistic burnout = when you’ve been stressed and you lose your ability to cope.
It feels like your autism is “getting worse”.
It feels like a sort of depression.
It feels like being stuck.
It feels like you are doing nothing right anymore.
It feels…. SHIT
Here is a helpful infographic:
If you are feeling like your autism is “getting worse”, fear not— you are not regressing, or slipping. You are just stressed! Take a moment for you. Find calm, find space and set your boundaries clear (say NO). Look after you…. and slowly, I promise, you will start feeling like your usual self again.
“Every man has his secret sorrows which the world knows not; and often times we call that man ‘cold’ when he is only sad.” ― Henry Wadsworth Longfellow
Photo by Gratisography
It has been hard to write recently due to the pervasive sadness that has moved back into my world. I find it difficult to explain what happens, but let me try. My depression is like a quiet underlying existence in my life. It becomes a challenge to manage because it is predictably unpredictable. When I feel good, I know it will be short lived, for I know the cloud of depression will return– but when?– I do not know. And so, I try, like most people I guess, to enjoy my happier times and embrace the world and get shit done… but then suddenly the cloud returns and envelopes me. When the sadness is here, my ability to complete tasks, think more coherently and be a better person in the world– that shrinks, and I’m left this shell of my past self, putting on a smile, lifting on foot in front of the other to walk and force myself to go out, go shopping, get out of bed, or– WRITE.
The Diagnostic Statistical Manual of Mental Health Disorders (DSM5) explains depression is a mood disorder whereby the individual experiences “either (1) depressed mood or (2) loss of interest or pleasure. Additionally, individuals suffer five or more of the following symptoms during the same 2-week period:
1. Depressed mood most of the day, nearly every day.
2. Markedly diminished interest or pleasure in all, or almost all, activities most of the day, nearly every day.
3. Significant weight loss when not dieting or weight gain, or decrease or increase in appetite nearly every day.
4. A slowing down of thought and a reduction of physical movement (observable by others, not merely subjective feelings of restlessness or being slowed down).
5. Fatigue or loss of energy nearly every day.
6. Feelings of worthlessness or excessive or inappropriate guilt nearly every day.
7. Diminished ability to think or concentrate, or indecisiveness, nearly every day.
8. Recurrent thoughts of death, recurrent suicidal ideation without a specific plan, or a suicide attempt or a specific plan for committing suicide.
To receive a diagnosis of depression, these symptoms must cause the individual clinically significant distress or impairment in social, occupational, or other important areas of functioning. The symptoms must also not be a result of substance abuse or another medical condition”.
(Wow, that’s just depressing to read. Thanks DSM!!)
I could write a long lament here about things that suck about depression, but I think it’s kind of self-explanatory, especially after that DSM descriptor! What I will do here is give you some tips and ideas on “Getting Shit Done” when you’re depressed. May it’ll help you (or me?) today.
Tips to get shit done
1. AIM FOR COMPLETION, NOT PERFECTION
Ok, so you have something that needs to get done. It’s a high-priority task. You have work due, you want to pick up a creative activity, you need to buy toilet paper at the store, or perhaps you just need to eat something healthy today. Plan to complete the ONE task, and “just do it”. This is not about perfection; it’s about completion.
With depression, focus becomes harder. Decision-making becomes harder. And worst of all, your critical voice becomes louder. Accept that you may not perform to your best, but give yourself a little leeway. You’re depressed today, and that means completion is good enough.
Aim to complete one task today, and give yourself permission to feel a tiny bit of pride over that.
I understand it’s hard to do that, because you feel all judgmental about yourself. I know that when you’re not depressed, you’re like a wildfire of activity– you get shit done! However, today you are depressed. Today is where you are right now. So just for now, let it be. Just for now, do one task to completion. Just for now, breathe and be okay with completions. Yaye, you did a task. That’s really great!
2. GIVE YOURSELF SOME STRUCTURE
While most of us autistics like structure and routine anyway, when we get depressed, all that structure can go out the window. Like, for example, I used to get up every morning between 8-9am and make myself breakfast, listen to music and dance in the kitchen, before attending to my day of tasks ahead. Now I’m in bed till 11, 12 or 1pm… sometimes 2pm and I often forget about breakfast, don’t listen to music or dance, start-and-not-finish tasks, or just find myself staring blankly at the wall for hours on end without noticing the time pass.
Now, I’m NOT saying that you must now get up at 8-9am to have breakfast and alike, because that’s my schedule. What I mean is that perhaps you should aim for getting up at the earliest end of your current wake-up cycle (for me, this would be 11am). Set your alarm clock, and put a plan into effect. Follow this plan, and substitute your own wake-up time and tasks, as indicated by the square ([…]) brackets.
Today, I will get up [at 11am], make and eat breakfast, then complete my ONE task [write the blog]. After that, I will give myself permission to feel a tiny bit of pride because I completed the one task I really wanted to do today.
Losing structure creates additional problems in many autistics; our routine is in place because it reduces anxiety, acts as self-soothing, and having this plan helps us to be motivated and ‘get shit done’. When we know what to expect from the day, it is easier to manage our emotions associated with the upcoming activities.
3. MAKE NATURE A FOCUS
There is a lot of research (studies here, here, here to name a few) into how spending time in nature can alleviate or reduce feelings of sadness and depression.
I know some of you hate the outdoors. I am not suggesting you go camping today, or sunbake. All I am suggesting is that you spend a little time in nature. Here are some ideas on how you might bring nature into focus today:
Go for a short, 10-15 minute stroll, passing trees and shrubs. If you like, it can be a stroll to your local cafe, to buy a coffee/ tea. Perhaps touch the leaves as you pass, or smell a flower.
Find a comfortable place outdoors and take 10 minutes to just watch the insects or birds. Look for ants or spiders or bees; magpies, crows, cockatoos, parrots– whichever you like and is around you. Watch them go about their day, think about them, what they might be thinking or doing, and reflect on how they behave.
Take a 10 minutes to walk through your garden and pluck 3 weeds. Should you feel inspired to weed some more, or snip the hedge, do so. Allow yourself to be with your garden.
If you have an indoor garden or plants, take 10 minutes with your plant. Look at it, explore its leaves, the colour, shape, and feeling of it. Consider if it needs any support (water; sunshine; bug sprays; harvesting; pruning). Take some time to give it what it needs…
For winter or rainy parts of the world, take some time to sit on your balcony, or at an open window and watch the outside. Listen to the rain, look at the clouds, observe the trees in the wind, feel the coldness on your breath and skin. Take 5-10 minutes to look, listen and ‘be’ with nature.
It seems the breathing-in of fresh air, movement of the body, reflections of the ebb and flow of the seasons, on how nature and trees continue growing in spite of obstacles, and the experience of being in/ around natural environments is calming to the mind and balancing to mood.
Photo by Tookapic
There’s just 3 possible ideas to help you get better focused and motivated when you are experiencing a downward turn. I don’t know about you, but I’m feeling quite positive having just finished writing this blog… and having reflected on those 3 tips. I’m now going to make another coffee and look at some of the other work I need to do. Maybe I can complete TWO things today? *hopeful*
The dictionary defines stress as “a state of mental or emotional strain or tension resulting from adverse or demanding circumstances”, and for autistic individuals, stress is one of the greatest challenges to living life well.
Research shows autistic people have a higher stress-response and are more susceptible to stress disorders than their neurotypical counterparts. A combination of childhood adversity and heightened sensitivity to emotions, hyperawareness of the environment, and interpersonal challenges with others create the space for stress to grow.
Autistics find it hard to “let go” of a stress-response; their bodies hold the stress-response longer, meaning that they need to be more mindful of stress-reduction activities, and become aware of how stress affects them.
Stress Response – What it can look like
Stress can lead to a range of sometimes vague symptoms– some that overlap with “just being autistic” and some that overlap with mental health conditions, like depression.
WebMD gives this handy list-
Emotional symptoms of stress:
Becoming easily agitated, frustrated, and moody
Feeling overwhelmed, like you are losing control or need to take control
Having difficulty relaxing and quieting your mind
Feeling bad about yourself (low self-esteem), lonely, worthless, and depressed
Physical symptoms of stress:
Upset stomach, including diarrhea, constipation, and nausea
Aches, pains, and tense muscles
Chest pain and rapid heartbeat
Frequent colds and infections
Loss of sexual desire and/or ability
Nervousness and shaking, ringing in the ear, cold or sweaty hands and feet
Dry mouth and difficulty swallowing
Clenched jaw and grinding teeth
Cognitive symptoms of stress:
Forgetfulness and disorganization
Inability to focus
Being pessimistic or seeing only the negative side
Okay, so how do you know if you’re experiencing stress-symptoms rather than just existing in this world with autism, or having the flu or something?
There are some key stressful life events that can shake you– like moving house, getting a new job, death of a loved one, falling in love, or the birth of a baby… but other things can also rock your boat. Good things can be stressful, as well as bad things. EEK!
I think the key is to look BACK. I mean, defining whether we are in a current state of stress is not exactly easy. So, look back at your week or month or few months you’ve just had. Defining whether you’re stressed is necessary, because you can’t start looking after yourself unless you know what’s wrong.
Write a list of what’s happened in the past week/ month/ year. Take the past week, per day describing key events, or a per week, or per month. Look at what happened. What events took place? This will help you see the truth of what is happening. I find analyzing your experiences really helpful to figuring out what you need to change them.
Notice your productivity levels. What are you not getting done, that previously you could easily get done? Are you way behind on your work? Another factor is change. Have you recently changed something big in your life, like made a new friend or let go of someone toxic? Also, consider your moodiness. Are you having more bouts of ups/ downs? Do you find yourself in more fights with loved ones over small and pointless things?
Just note these elements… and if you decide YES, I AM STRESSED, then go about changing that. Find your equilibrium again; get out into nature; take space; immerse yourself in your special interest; take a self-care day (or week!); ask for help; see your therapist or doctor; exercise; meditate.
I think I am stressed.
At the time, I didn’t think I was stressed. But now I am looking back on this year so far, I can see I was stressed in each month, and hell- I still am stressed now!
In the beginning of the year, my narcissistic mother told me that by Christmas I’d homeless because she has decided to WITHDRAW FINANCIAL SUPPORT and move overseas. She said I am stealing from her, that I need to be taught a lesson, and that I am undeserving of help (she also thinks my autism is a made-up disorder and completely untrue). See, from 2004, she decided that I needed to receive a small living allowance which she said would enable my independent living. So, I moved out of home, and she paid me a small weekly amount so that I could live a modest existence outside the family home. Her initial idea was that I’d find work and she could cut down my allowance till such a time I was completely independent.. however, whenever I started to earn money, she would refuse to cut my allowance, and then later used her gifting of the allowance as a way to blackmail me… ahhh the trials and tribulations of a narcissist! At the start of this year she made it clear that she was not going to continue giving me financial support and that when she left Australia, I would just have to fend for myself.
In February, I found out I GOT INTO UNIVERSITY to do my PhD topic and was really excited about that, but soon found out that I needed to PAY FEES and I couldn’t really afford it. Mum refused to pay anything, although she encouraged me to do this degree and said she’d pay for it. So, that sucked. Then, when I started my course, I also discovered that my SUPERVISOR IS ABSENT, and that he was rarely available or, it seemed, interested to give any support in the writing of my thesis. Such a disappointment. I’ve actually been seriously considering dropping out of university because of this situation…
In March, I started dating a friend, but as it turned out, he was depressed and had some strange sex trauma from his past, so our ‘relationship’ if you can even call it that, did not really progress beyond a few cuddles– even though he talked about being together, he was completely disinterested in intimacy and well, we broke up after a number of weeks… which really was blessing, because I was QUITE DEPRESSED by then.
In June, my mum forced a visit upon me where she spent a great deal of the time criticizing my life, picking on me, and joking about me being homeless. I realized that HAVING A NARCISSIST IN MY LIFE is not a good thing.
In July of this year I got a PAID JOB, one that I got totally by myself; my first ‘real’ job in 10 years- I was now being employed by someone else, paid a wage that more readily suits my qualifications and experience. I also got a NEW BOYFRIEND, someone who is really into establishing roots together.
In August, I had an unexpected condition which really required that I GO TO HOSPITAL, and I was very emotional about it because my recovery would take a long time. Later in that month, I also learned my MUM HAS CANCER. And I had a minor CAR ACCIDENT, but it totally shocked and shook me. When I heard about my mum, I just did not care. Her physical illness made her even more selfish, even more demanding, even more critical of me and my life… and she did not give me any emotional support in my situation. She told me I was a bad child for not wanting to quit my job and ditch my university to be with her. She cut off individual payments of my living allowance because I was apparently not being loving enough to her, and that really hurt me financially. August was the month that made me question whether my mum even understands the concept of love.
In September, I was still recovering from my operation, and I TOOK LEAVE FROM UNI, quitting one of my subjects.
In October, I decided to cut off all contact with my mother, and that was really freeing and beautiful for me because I could now finally be who I am without hearing constantly how wrong and bad that is. Yet, in all the amazing good, not having her occasional financial support has made it pretty hard as I now have these insurmountable FINANCIAL STRUGGLES, especially with health insurance, rent and bills — these things cost so much! At the end of October, I also experienced a strange tightness in my chest and inability to breathe… I had a severe ASTHMA ATTACK, and now I’m taking asthma medications, despite never having had asthma before; I’ve acquired it as an adult, and it sucks. In late October-early November, I experienced choking in the middle of the night; had it not been for my partner waking me up, I’d probably be dead. Frightening stuff!
Now it’s November and I am behind at work. I am behind with my thesis. I have been fighting more with my partner. I have neglected seeing my friends. I am aware that I have been more forgetful than usual, struggled more with focus, had more aches and pains, felt more overwhelmed, felt more lost, found it harder to self-soothe, and had greater anxiety. I am stressed.
My stress comes from the fact that I didn’t accept I was experiencing stress
I let myself get stressed and did not address it when it was happening.
Not all is bad. I am getting support NOW. And that’s the take-away, here. No matter when you notice it, seeing and accepting your stress is the way to reduce it.
Being autistic means we might totally miss the signs of stress brewing, and sure– we’re like stress-magnets, but we can find balance again once we’ve identified the problem as, well: STRESS.
If you have an autistic friend or partner and you see their lives getting hectic and full of stressful life events, remind them to breathe, take time out and de-stress. We’ll appreciate your kindness… and, as you may know, a calm person is a productive and lovely-to-be-around person. 🙂
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.
Parents with autistic children ask me: “Why can’t my kid focus?” “Why can they focus on one thing and not others?” “How do I get them to give all school subjects equal focus?”.
Adults on the spectrum ask, “Why can’t I get motivated to do [subject/ work]?”, “Why I am terrible at sticking with something?”, “How do I stop procrastinating?”
All these questions point to one thing:
I know. As soon as someone says your kid (or you) have “focus issues”, there are raised eyebrows and accusations of other conditions, communicated in a derogatory fashion- “do you have ADHD?” or you get comments like, “You seem a bit bipolar”.
Don’t be confused here. The “problem” autistics experience is not that they lack the ability to focus, but rather that they are continuously hyper-stimulated in their ability to focus.
Remember, we autistics experience the world at full-volume: 100%.
The “problem” about focus
If something is interesting, everything and everyone outside that laser-focus is ignored. At school, that means autistic kids may ignore the teacher; you may ignore your boss or your parents… This also happens to me in my love relationship a lot. I get so involved in my work that I complete exclude my partner. I ignore SMSes, calls, and when Z. is in the house, I can shut myself off from him emotionally. It’s not malicious. It’s simply that everything outside the focus loses importance. This laser-focus can make autistics seem to “disappear”. The interesting thing is the focus. Nothing else. Then after a number of hours your autistic will reappear and are starving because the focus has replaced the need for food, or they are exhausted because the focus has replaced the need to sleep. Eh, I digress.
To neurotypicals (people not on the Spectrum), consider autistic-focus like this: You know when are “in the zone” and you get loads done? That special kind of experience doesn’t happen much, but when it happens you feel great. Now, imagine being “in the zone” all the time. You can get heaps done, but also by the nature of being “in the zone”, you will reject everything outside of your focus. Now, imagine that everywhere you look, you see everything with that “in the zone” ability. What do you focus on? What do you choose to do?
Need for Harmony
In my experience (lived, observational and working) with autism, it seems many autistics view their relational world as a system which needs to be harmonious. The need for internal harmony is exceptionally important. This homeostasis need, or striving for ‘universal balance’ means that autistics tend to create structures within their world that bring order and maintain calm. By the way, this is where the desire for routine comes in. Now, the issue of focus is such that autistics often have difficulty prioritizing stuff. Our internal harmony needs always come first. Internal harmony needs are not to be confused with basic human needs. What maintains harmony in our own individual worlds is a completely personal and transitory experience.
The problem with getting outside-world things done (like meeting a deadline/ doing schoolwork/ getting to an appointment on time) is that the need for internal harmony takes precedence. Given enough time, however, outside-world things do get it done. Deadlines, generally, are frustrating to most autistics because of these focus issues. That is– No autistic likes to be told, “you MUST [be somewhere/ do something]”. That outside element of “must” is horrifying. If we create our own rules, it’s universal law and internal harmony, but if the rule or demand comes from outside, therein lies the challenge! (Consider theory of mind)
“We are doing something very intensely, but to the outside world, it seems like we’re doing nothing”
This inner world/ outer world struggle is something that autistics continuously re-evaluate. For example, autistics are sometimes misinterpreted as “doing nothing” or being distracted over “pointless” things. Rather, we are doing something very intensely, but to the outside world, it seems like we’re doing nothing.
The outside world (neurotypicals) do not see what we see. So, quite understandably, if I were to I spend a whole day at home, micro-adjusting the pillows on my couch, most people not on the Spectrum would view that behaviour as A) crazy; B) a waste of time; C) pointless; D) incomprehensible. However, in the autistic world, that intense pillows-adjustment has now enabled me to maintain inner-world homeostasis. By maintaining my inner structures, I can now spend a measly 3 hours working on an assessment, where I write 5,000w in perfect academic prose. Tell another autistic this, and they shrug – it’s normal. Tell a neurotypical and they don’t know what to do with it.
Basically, the need for harmony is such that the internal balance comes first. Now, the assessment might have a deadline, and it might be important in some external outside world kind of way… but in my internal autistic world, there cannot be balance in the Force until the pillows are adjusted!
Strategies to improve focus
If you want an autistic to stay focused, then you have to make the desired topic of focus the ONLY focus. It’s hard to stay focused on someone speaking to you when they are wearing glittery earrings and the light is dancing all over them. It’s hard to stay focused on the teacher if there is a spelling mistake on the board. Equally, it’s hard to feel inspired to start something if there are other distracting things in your immediate environment. You may find this is precisely why most autistics like to study in complete silence, in a cocoon of comfort…
What I hope you might gain from this article is that though focus issues might appear to manifest in autism, they are not permanently debilitating. If you absolutely must complete a task, a key way to manage or hone focus is to rationalize the situation, or create new rules for prioritizing things.
How to manage “getting focused” when you feel–
· I CAN’T BE BOTHERED
Is there something about the task that you can find interesting? Maybe it’s the way of working, or the systems you’ll use to find the information, or perhaps you can rationalize that by learning more about the topic, it could become interesting.
· I AM ANNOYED THAT I HAVE TO DO [THE TASK]
What makes doing it annoying? Maybe it’s a good idea to rationalize on the usefulness of completing this task. Will completing the task advance your schoolwork, get the teacher/ your boss to appreciate you more/ get you closer to finishing your study? Remember, you can always create a voodoo doll of that stupid teacher and poke it with pins to take out some anger whilst completing the task 😉
· I FEEL IT WON’T BE GOOD ENOUGH
Ahh anxiety-time! How about gently reminding yourself that your version of perfect is far exceeds anything the average person can even conceive. Bolster confidence. Say “you can do it; it’s great”, or simply, “I am fantastic, and everything I do is fantastic”
A lack of focus is not inherently bad.
You just learn to go with the flow, accepting the knowledge that things will be completed in their due course. If you ditch topics or abandon jobs, don’t worry about it so much. Essentially you have gathered all there was to learn about it at that moment in time. We can always go back and try it again!
I think it’s good to always always always remember that being autistic is not a disorder (quite apart from the diagnosis label). If anything, being autistic is a “bringing-to-order”. Being autistic makes you different, and while it brings inter-relational challenges, they are not insurmountable.
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.