Whether autistic or not holidays can be times of great stress. For those on the autism spectrum there are many more challenges. Below are some insights from Kimberly Gerry-Tucker.
By Kimberly Gerry-Tucker
Alteration in Routine
How can we manage? How can others be accepting of this sensitivity? Holidays can be exasperating for everyone, of course, whether one is NT (neurologically typical) or ASD (aspergers, autistic, HFA). This post is my POV, as it pertains to my own diagnoses of aspergers, dysthymia (a hard to treat depression), anxiety, introversion, and lifelong selective mutism (SM).
There is an insistent piercing prolonged beep-beep-beep sound that goes off in McDonalds when the fries are done. It makes it hard for me to focus on eating in that environment. I unconsciously hold my breath, wince, slow down my chewing, widen my eyes. I mention this grating beep-beep-beep because a similar silent, yet just as persistent “alarm” siren sounds in my brain when any change looms, no matter how seemingly small.
Around the holidays, people stop by unexpectedly, party invites are made, impromptu gatherings are scheduled, work environments change the routine, relatives may even come from afar to stay in the home. Strangers are suddenly chattier and more gregarious. Or one may be expected to stay in relatives’ homes for prolonged periods or even overnight. ‘Insistence on sameness’ and ‘inflexibility to changes’ are terms thrown about by professionals all the time. Unless you are autistic, I think it is hard to fully grasp just what this actually means. I LOVE my circle of family. It sustains me, but changes in routine still crack me like an egg. I don’t wish this to be true, but it is.
For me, routine and sameness are my life preservers,
helping me to feel afloat and safe in a world which is always
unpredictable, confusing, everchanging.
The ocean with its rogue waves and high winds; storms at sea that kick up waves and disturbances with such verocity that the ocean surface is like a washing machine; this is how it feels to be plagued by anxiety. For me, routine and sameness are my life preservers, helping me to feel afloat and safe in a world which is always unpredictable, confusing, everchanging. Methodical unvarying routine is a soothing balm for anxiety, but holidays change things up. Even trips to stores for routine items become louder, more crowded, and in many ways intolerable. This is when the life preserver of routine feels suddenly looser, more unsafe, in danger of falling away and so I hold on tighter.
Holidays are stressful for anyone (even pets) and stores present landmines to navigate (I have never ‘done’ Black Friday). Bumping into strangers, an increased expectation for small talk, trying to tune out a dozen conversations in a crowded environment, and navigating cramped spaces when one is prone to clumsiness are real concerns. Sensitivity to unexpected loud noises, florescent lights, and other sensory input can be difficult on an ordinary day, but the holidays present all these challenges- tuned up.
So, how can an NT help an autistic person cope with alteration to routine around the holidays and how can an autistic person deal with it? I am not going to give you the usual helpful diatribes: do yoga, stay positive, meditate, get with nature somehow, eat healthy, make time for yourself, play with animals, partake in your interest, get exercise, yada yada and more yada. Although these things probably have merit. What I will say is this: An autistic person is more likely to cope, when they know what’s coming. Anything unexpected is going to trigger a response. Got a guest coming? Thinking of dropping in? Give advance notice. Like maybe weeks. Sure, some changes are so sudden as to be unavoidable. If this is the case, validate the autistic person’s reaction, it won’t do anyone any good to downplay or tease the person if they’re having a negative reaction.
Maybe the autistic person has a stim item (I know a girl who always wore shirts with fringe during get-togethers and a boy who needed a certain bolt to toss repeatedly). This doesn’t require negative commentary from the observer, simply accept this as part of who your autistic friend/family member is. It may be a necessary coping tool. Also, if there are going to be people the ASD person is not familiar with, let them know ahead of time. Understand and be understanding of transitional periods. Just like Spring is a transition between cold weather and hot weather, and Autumn is a transition period between hot and cold, understand that an autistic person needs Autumn or Spring moments, time to adjust to the switching of one task to another, particularly if it is sudden and unexpected. If the autistic person disappears, don’t assume something is wrong, it may just be decompression time. What I’m saying is, don’t be vigilant about getting an autistic person to conform to how you think they should be, be patient, be you and let them be them as well.
It is not easy trying to hold onto the reins of a runaway horse. Understand that the autistic person feels this way- a lot of the time. Would you throw something in the way of the frantic runaway horse? Or would you allow the person to get back their stirrups, and relax into a rhythm that allows for their own safety?
Like anyone else in the general population, autistics each have their own unique personalities and differences. An autistic can be introverted like me, or extraverted. We can also be prone to oversharing or “telling it like it is” and unknowingly offending people. There could be many co-morbid ‘disorders’ too, like dyspraxia, ADD, depression, and whatever else you can think of. In my experience, there are people who, even if they may be NT, just “get” ASD. Autistics are my people, but these NTs (who ‘get’ autistics)-they are my people too. They are easy to ‘be’ with. Recently I spent the day with a lovely free-spirited NT friend, who happens to “get” ASD individuals and I did not feel emotionally drained at all afterward!
Still, I wondered if my communication was too honest; in some ways. There was a verbal exchange at the farm we visited, that I thought about afterward, and it is an example of ‘telling it like it is’ and wondering in retrospect if I should’ve kept my mouth shut, so to speak. A sheep came running up to the fence and my friend was so thrilled by this that it moved me. She started speaking in an Irish brogue to the sheep:
“Aah, wee lass, how are you this fine day?” My friend remarked that this was awesome; the way this sheep looked so happy to see her; and came running over to her as soon as she saw her… certainly they had a special connection (they did, too- she’s very much an Empath, like me).
I immediately said, “Hmmm, I don’t think the sheep is so happy to see you really. Do you hear that beeping sound? The truck carrying hay is right around the corner and this sheep hears it and knows food is coming. No doubt that’s why she came running at that moment. It’s a Pavlovian response sort of thing.” Well, I’ve just ruined that experience for her, I thought!
‘Zoning out’ or blankly looking into a distant point no one else sees, may not seem ‘normal’ when it presents at a family gathering or holiday party. In a room full of NTs who don’t understand autism for example, this may be seen as odd, or as disinterest when in fact the autistic person is blocking some stimuli to absorb others and no doubt very tuned in to her/his surroundings. Being in a state of deep thought, and introspection in most situations, is just… normal. In my case, it’s probably art withdrawal! What’s more, if the autistic person happens to be around an NT for example, who comments on the zoning out, it is possible that the autistic may feel more anxiety or a feeling of having failed at social interaction when in fact this is a coping mechanism and not an affront to be taken personally.
I have adopted coping tools, copying or mimicking speech patterns that I have observed to be successful for others; and an ability to mask or blend that started when I was just a kid and I knew then that if I did imitations of celebrities my parents would laugh. From an early age, males tend to bond with males through shared activities and females, well, we are expected to form cliques and be especially social, bonding through oral exchanges. A pre-teen especially, ASD or not, usually wants this inclusion. And for an ASD girl, this is at great cost. It’s exhausting to mimic and blend. Imagine the brain in camouflage pattern, I do imagine this often. When the ASD female masks (or camouflages to blend in socially), I imagine that the brain itself changes in color to desert sand tones, urban greys, sage green. I shall have to paint this. 😊 FYI- autistics don’t lack imagination, IMO.
So why mask?
If staying on the outer boundaries of social activity is the usual game plan for autistics like me, the most natural way of being, then why mask at all? Why is it so important to surpass and conquer the challenges that holiday parties or gatherings present? I’m guessing it is an especially human trait to want to fit in, to not seem abnormal this one time, to make connections like others do, and these are the great motivators for masking in my humble opinion. Camouflaging autism is an art that some of us partake in. Isn’t it a shame we feel the need to do this?
Yes and no. I think it is a sign of great motivation and intelligence. On the flip side, in my adulthood, I did finally get an official diagnosis of aspergers but I think masking, camouflaging, and chameleon-like mannerisms which help in navigation of the world, can be some of the reasons self-diagnosed autistics don’t get a formal diagnosis. Being great at camouflage is a testament to resilience and persistence but may hamper diagnosis. ‘If xhe can do or say or act like x, y, or z then she is not autistic, right?’
Females, generally speaking, tend to internalize big emotions and this leads to anxiety and depression;
where, with males there tends to be more outward signs, like behavioral outbursts.
You’d be very wrong about that. The need for fitting in or having more connection to people can be overpowering. Females, generally speaking, tend to internalize big emotions and this leads to anxiety and depression; where, with males there tends to be more outward signs, like behavioral outbursts. Who do you think gets diagnosed more often, the male or female? Resetting oneself from all the pretending to be normal can manifest in necessary withdrawal, intense adherence to special interest, and can lead to meltdown unfortunately too.
This holiday season, as with any other time really, I think it’s important to be mindful that autistics are trying harder than most. If there is a social “faux paus,” don’t dwell on that. There are ways to incorporate special interests into gatherings too. If, for example someone loves art as a special interest, why not suggest the person make placeholders for everyone or set up an ornament-making table. Say the autistic person is very knowledgeable on certain topics, why not figure out a way to decorate or otherwise incorporate this topic into desserts. (Cookies or cake with writing or shapes or colors which give a nod to their favorite topic.) Do they love to cook? Invite them to help. Buy a special mug for that autistic person and tell them that every time they visit, it is theirs to use and theirs alone, no one else’s. Put the focus on non-judgement and sincere compassion and see what happens.
As an autistic person with all these challenges I remind myself that this is my holiday too and I may enjoy it in ways that seem unconventional to others, and that’s okay. There are meaningful roles I can play around the holiday which can add to, rather than deplete, my mental and spiritual storage. The mere sight of colorfully strung big-bulbed lights and old fashioned Victorian ornaments are a big part of holiday enjoyment to me.
If I do get to meltdown stage, I’ve prewarned my loved ones what this looks like and I always stress the importance to them of keeping in check their own emotions and allowing it to pass. If I ascertain that something terrible has happened in a social exchange, I remind (or try to remind) myself not to catastrophize, because it’s been my experience that upon looking at such things in retrospection, these issues are usually not as horrific as I judge them to be, in the moment. Some things, rather than reacting, just need processing time.
“She won’t look at us!” …. “Oh my God it’s like she’s in her own little world. Yoo-hoo, is anyone in there?” … “I guess we’re boring her.” … “You don’t have to be here, you know.”
“Are you stupid?” … “You can’t be this way… your whole life.” … “Hey Kim, your short bus is waiting outside.” … “She’ll always be like that won’t she? We always assumed she’d grow out of that.”
All this and more, I’ve heard, in response to my ‘staring spells’ or aversion to eye contact. When I see TV shows (in particular crime shows) and the person being interviewed is determined to be guilty, or lying, just because they don’t make eye contact, I want to scream! While it is true that some people (probably NTs) do avoid eye contact when they’re guilty of deception or lying, this cannot be said of all people! At the holidays especially, I brace myself for at least one of these remarks, or something similar and in a way, I have developed a hardened shell to such things. I suppose that comes with age and the passing of time.
eyes were wet-rolling-alive-marbles that frightened me
Lack of eye contact is not necessarily an indication (in ASD) of deception, being shifty or sneaky, lying, guilt, disinterest, mistrust, aloofness, boredom or any other negative connotation. It is hard for some people to understand what is a natural state of being for one person, is not natural for another person. When I was little, eyes were wet-rolling-alive-marbles that frightened me. I dared not seek out the color of my own until I was about 7; and balanced on the sink to get up close to the mirror. I thought my eyes were greenish, and I was so angry at my mother for always telling me they were ‘hazel.’ I had no idea what that meant. Carefully, she said, “Hazel means you have a little green, you have a little brown.” When I saw the bag of nuts come out at Christmas and someone mentioned ‘hazel nuts’ I was really confused, but then it made sense. I was a nut! I believed this so intrinsically and literally that I almost named my memoir: Hazel, Like The Nuts (but Donna Williams talked me out of that, wisely). Eye contact has always triggered in me, an insecure anxious emotional response.
If you are worried about making eye contact at parties or get-togethers, don’t be too hard on yourself. YOU know you are not shifty or bored or rude. If you are a person who does not understand why some people can’t make eye contact, please think twice before uttering some of the insulting comments I posted here. Remember that these things can become damaging mantras that replay in an autistic person’s head. Be understanding of differences as just another ‘way to be’ and above all, don’t take it personally.
Aah, tactile and touch aversion. Touch is perceived differently in autism. Not always, but for me sometimes, hugging can feel like dents that won’t pop out all day. An hour later my nerve receptors are humming in the places where the hugger’s arms met my body. Just the other day an NT friend asked for a hug. I complied. She then explained in detail, “proper” hug-giving. She said it releases endorphins and I thought, in my case it’s just stress hormone! People at times will assume, even if they know of autism (she knows) that everyone wants the same things, why wouldn’t they? That is not true, though. And yet, the deep tissue squeeze of Temple Grandin’s hug machine sounds incredibly comfortable. Go figure. These days, I prepare myself for events by telling myself to expect the unexpected. I do not like to feel hyper-vigilant but if I anticipate there may be willy-nilly huggers about, at least I’m mentally prepared!
I wore the same sweater every day of fifth grade because the softness of it soothed me. That classroom niggled at me like no other classroom I’ve ever had and clinging to the sameness of the sweater with the pearlized buttons, no matter the weather, was necessary for my wholeness. Tactile sensitivity is real. It can be hyper, or hypo. For instance, I loved to walk barefoot in snow under the streetlight at night when everyone slept, but I could not tolerate water guns, water balloons, or snowballs coming in my direction- I’d hide in the safety of my room until this ended. Showers were horror. I preferred baths, still do, and sometimes at high levels of stress, which persists to this day, like for example, holiday stressors, the guttural sucking sound of a toilet flushing may send me running from the restroom. I’d urge NTs who may not be familiar with autistics this season, to accept that not everyone may want to participate in every activity that is planned. It’s not rude, we have our reasons.
To dress up or not to dress up for the occasion? In my experience, even if you cut a tag out of a shirt, bits of tag-spurs remain on the fabric. I have countless shirts with holes in the back of the neck where I’ve had to obliterate tag residue completely, resulting in a hole in the shirt. That’s an everyday thing, but at Thanksgiving and Christmas, in some families or work environments, there is an expectation to dress more formally for certain events.
For me, and I have always been this way, textures have always been a delicate balance of pleasure (the soft sweater) and an onslaught of repulsiveness and terror. I can buy a weighted blanket or weigh myself down with five blankets at night for comfort but during the day I am on my own. I can’t drag a blanket around and I have long since outgrown my comfort sweater, nor have I found a suitable replacement, and I am always looking but none come close. I can avoid vinyl chairs and cigarette smoke. I can wear comfy clothes, chosen for my personal reasons. Be accepting of this, comfort is important, in my opinion.
I can remember, when I was about 16, being invited to a ‘shower’ for someone who was having a baby. Even then I realized the need to be comfortable in that environment. I wore my most broken-in, comfy hiking sneakers and faded soft jeans. Both fit my body well, without restricting me and both were familiar and loved. I purchased a yellow blouse specifically for the occasion because the color is my favorite and I knew it would give me pleasure to wear it and enjoy its color. It had a soft silky tag in back, but I removed it anyway, leaving a hole, per usual, but no matter, I was setting myself up for success. I even applied an almond scented lotion to my hands; so I could bring my favorite scent to my nose during the ‘shower’ (I had no idea what this was or what was expected of me as a guest. I did not automatically know.) I was so happy with my autie-friendly choices (not even knowing I was autistic at the time, just knowing I perceived and processed differently) until my mother walked out of her bedroom, ornamented with more jewelry than was her usual and wearing a skirt and lipstick…
“That’s what you’re wearing?” she asked. “You look like a drip.” I didn’t know what a drip was, but it didn’t sound good. I went to the shower in the manner I’d chosen anyway, but my sense of security was shattered a little.
Was I a “picky” eater? Oh please! I had texture sensitivities
There are comfort clothes, and there are comfort foods, too. I do not apologize for this. I wouldn’t try mashed potatoes until I was 12. Was I a “picky” eater? Oh please! I had texture sensitivities, still do. I avoided mushy textures. I was not fond of my gag reflex being activated. For several years I could only stomach mashed potatoes if served with fried chicken, so I could sprinkle crisp batter into the potatoes to give them texture. I ate the same bag lunch every day for my entire grammar school education. Holiday dinners not only present changes in who is seated around the table, but changes in so many other things too, like food that is being served. Do ask your autistic guest coming for dinner about food preferences.
One of the first times I decided to give mashed potatoes an honest try, without the fried batter for texture, was at the family dinner table. I was 15 and my then boyfriend had come for the holiday. I was trying the potatoes sans crisp batter. So I scooped the mash with my fingers. I dug in, trying to embrace the texture instead of fighting it. I had seen for the first time, that day how they were made- I’d studied my mother making them. I liked butter, milk and potato so I figured I’m going to embrace this. No more adding crunchy bits. One by one people set down their forks. They were watching me eat with my hands at 15 years old. I was having a great time. I’d turned a negative sensory experience into a positive one, this was a growing experience for me, and if anyone at the table had chastised me, belittled me or scolded me, I may never have eaten mashed potatoes again. Thankfully they accepted me, as is, without judgement, just interest in what was admittedly, a different sort of behavior. I’d scoop up mashed potato with my fingers, and then lick them clean and it was the beginning of a wonderful mashed potato relationship.
“What?” I said to those seated around the table. “I’ll use a fork next time. I’m just trying to get to know this food,” I said, grinning.
Always I had trouble eating at my neighbor’s house (I was friends with the girl) and not for the reasons you may expect- yes, cooking styles, expectation of speech, and food choices were part of it- but so were those vinyl chairs that had swirly embossed nasties in the pattern. The feel of this vinyl was like fingers on a chalkboard. If my sensitive fingers brushed the chairs, or the sound of them when people shifted in their seats against the vinyl met my hearing- this was like my chest filling with a cold wind, this was anxiety, discomfort, supreme uneasiness, and it interfered with my ability to eat, let alone have social interaction. That was out of the question. Think about this sort of thing when an autistic comes to dinner. Have you asked if there are foods or sensitivities they may have? This isn’t “pickiness” folks, this is tailoring the environment to set an autistic person up for success.
Yearning can sometimes eclipse sensation sensitivity. I embraced the potatoes my way, to know them, accept them, embrace the mushiness, and I eat mashed potatoes no problem today, with utensils, but vinyl chairs can still trigger a mute attack! I shudder at the thought of them. Literally.
‘Masking’ is a yearning to be considered normal and a tailoring of who we really are (wearing a mask) as a mechanism to blend in. The pay-off is “ha-ha, no one has guessed I’m autistic!”
What is a bath bomb anyway? What is the allure of a mani-pedi and why would I want one?
How this goes against the grain of who I am, of being proud to be autistic, because I am! There’s great acting skill, thank you very much, much tiring work involved in attempting to ‘get’ and then mimic social rules. Being on the periphery of all interactions. Having an aversion to what is trending, or what is considered popular in mainstream. Gauging facial expression and hidden implied intent. All these are motivators for imitation. But it can lead to meltdowns in the comfort of home when the mask gets to come off. An aversion to following the herd, so to speak, and knowing the latest trends as I said (What is a bath bomb anyway? What is the allure of a mani-pedi and why would I want one?) can add to the autistic person feeling socially ‘out of the loop’ and awkward. Be understanding and accepting. Chances are, the autistic person is trying very hard. And if they take off the mask (like I did with the mashed potato immersion) and they seem odd, so what! Who is the definer of odd? Know that they are comfortable enough in your presence to simply ‘be.’
The autistic person probably has special interests and routines. Around the holidays everything changes. Schedules, expectations, household activity, it all changes and can bring on anxiety, mutism, and a host of other reactions. At the holidays, a relative may come from afar and stay overnight, cutting into time usually reserved for much needed escape into ritual, routine and special interests.
Special interests fill one with recharging fuel. Most autistics I know do not like or understand voices raised in anger, vindictive behavior, or arguments. At the holidays this may happen; and this is a source of stress for people who are not even on the spectrum. But for those who are, this is heightened- a feeling of unease and confusion, discomfort, wanting to flee from the situation. Cortisol is squirted and anxiety soars. The reverse is also true- at holiday gatherings, there may be a lot of ‘light’ small talk, kidding around, using of figures of speech- in general, ‘water cooler’ talk, magnified. A lot of this seems very useless to a lot of autistic people.
Unspoken rules of body language, gestures and the like, can throw a whole lot of added pressure to the autistic holiday party-goer. An intense focus on special interest (these are varied for me and have included Van Gogh, rocks, cats, dust, and I’m currently focused intensely on full tree immersion especially as it pertains to art.) Disruption of these activities feels like being shattered, perhaps the inspiration for my shattered image self portrait. Sameness is so incredibly soothing in an always changing world, embracing the sameness is comforting.
I recall being at a special viewing, a screening of a docu-film on different people. Many of my autistic peers from my social skills group and our caring NT advocates were there too. It was a wonderful experience, but intermission posed a little problem. Mingling, for one. I was in my 40s then and went to see the film, not to schmooze with NTs in the lobby, as nice as these NTs were. The film was moving, raw with emotion, and I could not just “switch” over to small talk with ease.
I searched for a safe place, to decompress, before heading back to my seat for Part Two of this docu-film which affected me in ways I needed weeks to process. I spied a door labelled Janitor; which turned out to be a delightfully thing-filled, old-smelling, darkened room, surprisingly large in a cluttered way; filled with all manner of janitor possessions. Once inside, I exhaled. Imagine when I heard a small sound, glanced into the corner, and saw my autistic peer B__ there, also decompressing I assume. Without words, we acknowledged each other with some gaze aversion and a nod; and allowed each other silent decompression in our spaces until it was time to return to the mix
Kimberly Gerry Tucker is author of Under The Banana Moon. She lives in Connecticut with her fiancé, a dog, and two cats. Kim’s art was chosen for the cover of Samantha Craft’s (2nd printing) book Everyday Aspergers (Nov. 2018). Her most recent publication was in the anthology, Firsts-Coming of Age Stories by People With Disabilities by Belo Cipriani. She arts every day.
Cover image: Kimberly Gerry-Tucker “Despair”