The Mind and the Mortar (sensory issues and the autism spectrum)

It’s odd that we change. Years pass, memories of different selves accrue. I think the mind can have a difficult time reconciling those different selves with their varied, contradictory shapes.

I remember having a much stronger sensory awareness when I was a kid. My nose would haunt me, for example. I would smell something unpleasant, and a sense of unease would settle over me for days. I’d grow moody about it, troubled. Sometimes, for reasons I didn’t understand at the time, I would lash out at others well after the triggering scent.

It was a challenge because seemingly every single item had it’s own unique smell…and they all triggered reactions, some positive, some negative. I liked smelling crayons (some of them, anyway); I liked books; I thought carpeting was evil. Any sort of carpeting…new, old, recently cleaned…it was all terrible. And yet today, as an adult, I rarely notice these things…my sense of smell seems to have very slowly faded, to the point that it is no longer a daily struggle to navigate.

Taste was odd back then…hyper-alert to food textures. There was a range of textures I could handle…anything outside of that range would make me sick. I was unable to palate most fruits, for example. I liked the taste, but the textures threw me into nausea. Bananas were the worst. I’d try a banana, spit it out, gag; I’d then roam around for days feeling miserable…the unease would settle deep into my stomach, churning like a sea-sickness.

Other foods were okay…I thought yogurt was miraculous. I liked very smooth mashed potatoes…but if they turned out too thick, I’d grow sick tasting it; I could feel that some texture-threshold had been crossed and my body would revolt.

These food sensitivities changed, though…over the years, my palate expanded out to where it could handle most things. I found, in my 20′s, that I could begin eating fruit for the first time sans nausea.

Touch evolved. As a kid, I wanted to touch everything. I liked raspy walls and paper the most. I liked the covers of old books. I could spend all day touching tree bark, bricks, velcro. Sand paper was so intense that I couldn’t rub it…I would just put my hand on it, leave it there for a bit…that’s all I could handle.

Like everything else, that sense-awareness slowly faded…today, my hands still feel intense, lively, but the things around me…the walls and trees and books…they don’t resonate like they used to.

This is stating the obvious, but senses are not just random impressions; they are bringing us information about the world. And when the world around us changes, it can lead to very strong reactions.

For example, seasonal changes can have a profound impact on the senses. When summer gives way to fall, and the humidity drops: sound moves differently through the air, impacts the ear more sharply. The sun changes position throughout the year, creating different varieties of brightness, which can be disconcerting for someone with light sensitivities. Even simple changes- in temperature or barometric pressure- can create vertiginous reactions internally.

(I mention this because I often wonder what it means to experience less intense sensory impressions; am I also losing some quantity of connection to the world? How could I not be? I also wonder if these changes have happened because I’ve simply acclimated to the sensory impact of life…or if depression re-organized my brain so that I would feel less. I don’t know how to know things like this. I just know how to think about them, ask questions.)

So, senses change. Seasons change. But we change along with them. Our minds can stretch into the world, wear down it’s threads until it has the muted comfort of old clothes.

I’m not saying, “Sensory issues get better over time.” Sometimes they do, in many cases they do not. I know for me, it’s been a mix…a few improved, others didn’t. My tactile awareness has lessened; my aversion to lights hasn’t. I just think that between the mortar of senses and the pestle of life, the mind can’t help but change, even for those on the autism spectrum. Maybe especially for those on the spectrum.

I think the oddest part about the changes we go through in life is the fact that you can still recall previous experiences. You have access to memories of a completely different person.

You have a sense of self, an identity…but as years go by, it’s ground up in that mortar…then you feel normal for a time, settled into a new identity…and then it’s back into the mortar, for more grinding and changing.

And it is truly astonishing that you can go through these endless mutations, yet remain linked through memory to a previous self.

When I think about a collection of memories, my mind tends to feel like a room full of strangers: they’re milling about, looking at one another, trying to figure out who all of these people are…then they reach into their pockets and are surprised to find dozens of photographs…photographs of the very strangers around them; they examine the pictures, try to understand when they were taken, what they mean.

That’s my mind, most days: a room full of memory-people, all lost…all bewildered by this unexplained connection to strangers.

Find more Invisible Strings on Facebook and Twitter. Recent posts: the challenge of sorting through social data; how families can misperceive ASD; and why small talk is confusing.
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  • April T.

    Wow.

    Just deep.

    You know, you mention all the things you loved to touch. It never occurred to me that I had a heightened sense of touch as a kid, but all of the things above you mentioned brought back explicit memories of touching these very objects–of seeking them out to touch them–but never sandpaper because it felt painful. I have a friend who sees stuff she likes and she just reaches for it. If it’s a stranger’s shirt, so be it. She’s not on the spectrum, she’s just ballsy like that. I always thought her need to touch was a touch issue–simply because she had to touch even the forbidden if it appealed to her. Me? I STILL love to touch and smell old books, to touch cool southern brick on a hot day, to feel the different textures of tree trunks (we took E recently on a nature trail, and he and I spent much of it doing JUST this thing….and I kept thinking, if my husband were here he’d be yelling about how we’re just asking for poison ivy….but that’s the way we explore…).

    I am a lot different than I was as a child. For me, many things have always been present, but much of my sensitivities have actually gotten worse while others I have outgrown. I used to be very sensitive to food. Now, I have a happy variety of foods of types, and flavors I enjoy (texture issues still pop up sometimes). I never understood why I would go to sleep during normal hours and yet my eyes always felt “tired” (wanted to close/felt overwhelmed) under the fluorescent lights at school. The lights issue has gotten worse, as has my sense of balance.

    I recently read John Elder Robison’s book “Look Me in the Eye” (spoiler alert if you haven’t read it…if you can spoil an autobiography, lol), and in the end he says that the person who did all of the incredible things that he had done when he was young was no longer with him. He says he reads these papers he wrote on circuitry and he doesn’t understand any of it; that the almost savant person he was back then is no longer him. That somewhere along the line, he had a choice. He could choose autism specifically, and would rather stay with machines, because machines didn’t mock him or he could work hard to rewire his brain to be around people. The latter won and he says that while he isn’t the genius autism once made him in some ways, that he has at last found his place in the social world.

    My photographic memory is gone. I have memories from being three years old. Picture perfect, clear memories with sight, sound, smell, emotions. I struggle with so many things now that I never struggled with before that my intelligence carried me through.

    When I was intelligent and independent.

    Robison’s explanation resonated with me, the same as your wonderful writing above because I think life changed for me when I got married and had a child. No longer could I pepper my intelligent/creative streaks with being social. I had to learn to pepper being a mom and a wife with being intelligent. Like my father before me (who we all, except him, agree is entirely on the spectrum) who tested so damn gifted he couldn’t get a number, I tested in 6th grade well into the MENSA range.

    And yet, it’s not that intelligence that I carry with me anymore. I carry more common sense, more social sense. I look back at that girl and she and I are two very different and yet same people.

    Like standing in the room with strangers. With April, the child brain. With April, the awkward teenager. With April, the butterfly who said “to hell with being known as the boring one,” and who made random trips around the country with her bestie hitting night clubs and concerts. To college professor’s pet April who made success the *ONLY* priority and A’s the only acceptable outcome. To April the wife, who had to learn to touch her emotions, to share them more, to remember that logic is only half of what fuels a marriage. To April the mom where almost everything else went out the window but being the best mother in the world I could be.

    Each of these Aprils are distinct, with different challenges, obsessions, strengths, goals, etc. It’s like each of these Aprils didn’t just adapt in small parts, but made entirely new models of herself to make it though.

    I credit autism with giving me that resilience.

    I’m thanking you today for helping me get that insight.

  • http://theinvisiblestrings.com m kelter

    “I am a lot different than I was as a child”

    it’s one thing I wish more people knew about the spectrum…when people are discussing autism traits, they often just list diagnostic criteria…but autistics can change over time, as they have experiences, just like everyone else. I know I’ve had different traits at different times. the way someone is when they are a child, they may not be that way at all as an adult…these traits run into life, are altered, and i think people tend to forget that. my sense is that the diagnostic criteria are often based on observations of children, considered to be permanent, and therefore there’s very little room left for discussions and understandings of autistic adults…and kids on the spectrum are never given credit for being able to change. anyway, thx for the comment, hoping other adults on the spectrum can comment as well, it’s an interesting to topic for me.

    “Each of these Aprils are distinct, with different challenges, obsessions, strengths, goals, etc.”

    and there’s also Commenter April, she’s one of my favorites, she always has terrific insights.

    • http://www.kathyhporter.com Kathy @kathyhporter

      I wish that someone had told me to be on the lookout – that my son’s intense sensory overloaded reactions to certain types of environments (noisy school buses and horrifically – to him – lunchtime cafeteria noises – would become less stressful when he got older. And, while we’re on this topic, other things changed – in good ways – for him with time.

      It’s very true that ” … the diagnostic criteria are often based on observations of children, considered to be permanent, and therefore there’s very little room left for discussions and understandings of autistic adults…and kids on the spectrum are never given credit for being able to change. anyway, thx for the comment, hoping other adults on the spectrum can comment as well, it’s an interesting to topic for me.” As the parent of a 28 year old autistic (ASD) son, this is a really interesting topic for me. Thank you for getting it started.

      • http://theinvisiblestrings.com m kelter

        thank you for the comment Kathy. what you’re saying is something I’ve come across in my own life and heard from so many others: people on the spectrum change. it’s not always with sensory issues, but what is true at one point in life may not be true at a later time, so I appreciate your observations, it’s an interesting topic for me as well.

  • Jess

    I just think that between the mortar of senses and the pestle of life, the mind can’t help but change, even for those on the autism spectrum. Maybe especially for those on the spectrum.

    That. Thank you.

  • http://www.autism-mom.com Elizabeth

    Interesting that you have different experiences now and that the experiences have changed for you.

    Did you notice changes after adolescence? Do you think it might have been related to the changes in the brain in adolescence?

    • http://theinvisiblestrings.com m kelter

      I definitely noticed changes during adolescence, and even into adulthood. I don’t know if the body changes of adolescence were involved…I’ve always just suspected that the mind, in reaction to the sensory input of life, can just slowly change, adapt. Not always of course, my light sensitivities have never improved. My food texture aversion was just something that gradually, slowly seemed to evolve over the years. And I’m sure some of the changes of adolescence can increase sensitivities, or at least the irritability associated with puberty can make things feel worse. But I think there’s hope, things have the potential to improve, and as we navigate these issues, I think we get better and better at establishing a comfort zone.

  • emmapretzel

    I love this because it’s totally important/relevant, and because comparing weird brain traits is basically the funnest. I’m only 21, and already I can look back and definitively point out multiple changes/transitions I’ve gone through with regard to cognitive and sensory things. There were like…three big ones.
    1. Around the age of 9, I think I must have hit some developmental milestone where I like…finally “got” some basic perspective-taking abilities. Because before that point, I was basically a very charming, occasionally destructive poltergeist with (as far as I remember) virtually no social anxiety or self-consciousness. But then I hit 4th grade and also changed schools, and suddenly social anxiety just ate me for breakfast. I’d been going to school without my baby blanket since like, 1st grade, but I brought it to school with me every day of fourth grade in a backpack, and took it with me wherever I went.
    2. PUBERTY. And not even because of adolescent social things, or changes to external appearance, or anything. It was 100% cognitive–my body decided that adolescence meant drowning my brain in a soup of adrenaline and cortisol. I gained a huge amount of inhibitory capacity that I hadn’t had before, but that basically just meant I internalized all my stress instead of externalizing it by lashing out, or throwing tantrums. And then my attention/focus and memory took a nosedive–I’d written stories and 6-8 page papers without a huge amount of difficulty when I was 11-12, and had incredible verbal fluency, but all those abilities took a huge hit during adolescence. From the age of 13 on, my brain has been very different. It’s not necessarily a bad thing, because as much as I lost in sequential abilities and fluency, I gained twice that in associative abilities and non-verbal intelligence. But it was a rough transition.
    3. From like, age 16/17 to now, I’ve seen a big increase in my metacognitive abilities (practically nonexistent before then) and a change in how I deal with my sensory things. Prior to this, I think that my awareness of any sensory sensitivity/overload manifested mostly as emotional overload or stress. The sole exception to this is my tactile hypersensitivity, which is so acute that it’s always been something I was aware of in detail. But now, I have more clarity with regard to what all the different pieces of my sensory perception are doing. It doesn’t make it less overwhelming–in many cases, it actually makes it more intense–but it does allow me to avoid the kinds of emotional meltdowns and outbursts that I used to have.

    One of the more difficult things for me has been how little I can easily remember about my early childhood and adolescence. It seems to correspond with the level of stress I’d have been under each given year: the more stressful a given year in my life was, the less I remember of it. It’s highly inconvenient. And weird. Alas.

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  • http://autismitsallinthefamily.blogspot.com Forgotten

    Wow. I can relate to this completely. I’m not the same child who could disappear into her head for hours on end just walking the same path in the woods over and over. I miss that girl. I would kill for a day where I could just quietly break from every responsibility and be silent and in my own head for several hours.

    I miss the young woman who chased the things that piqued her interest no matter where they took her. I want the energy to pursue my interests and the openness to exert my intellect that I had (or was allowed) in grade school and college. I never finished college because the social demands outgrew my abilities to cope and prioritize.

    I feel like a shell of who I once was, pinned into this reality by the things I *must* do instead of the experiences I wish to obtain of my own accord. *sigh* Here’s to the strangers in the room and getting to know them better…

  • Ruth

    Wow, what a stunning expression of the experience of understanding oneself. I love the image of the roomful of strangers, with pockets full of photos, that captures how I feel about myself so often.

    Regarding the comments about the brain and adolescence, it is thought there is a phenomena that happens at this time likened to pruning, where the brain goes through a process of cutting back the neurological pathways required during infancy and childhood for all the development that happens in those early years. Once those skills are mastered the pathways are no longer required, and the brain needs to have the capacity for the learning needed as we grow into adulthood. That’s a very simplistic explanation, but this phenomena may play a part in some of the changes you talk about.

    I have been thinking lately about context, and how much that dictates how a particular trait is perceived. Some of these strangers in the room for me are about context, I guess that’s natural but some of us are more impacted by this than others, the chameleons. And I have been somewhat concerned lately that the issues I have with someone close to me are only issues in the context of our relationship, I create the context in which his individual traits are an issue. I guess this is not unusual in relationships, but when this context throws up the question of behaviours on the spectrum, it is causing me to question in new way. Sorry for rambling on quite a tangent, but what you have written sent me back down that rabbit hole, and I would be really interested to know if anyone can make sense of the connection I am trying to get hold of here.

  • Sara Parks

    “You have a sense of self, an identity…but as years go by, it’s ground up in that mortar…then you feel normal for a time, settled into a new identity…and then it’s back into the mortar, for more grinding and changing.”

    That really hit home for me because when i hit a new stage of life, high school to college or married and career, I get a sense of self and feel like i have progressed but the same issues that plagued me then turn up again and i have to learn all over again how to deal. It is aggravating and I have this image of a mouse in my head trying to figure things out but running into walls, turning around and bumping around a lot. So nice to know i am not alone!

    I also take turns deciding between machines (i work in web development, marketing but i still love machines and code) and people (i love people, but sometimes it gets awkward).

    • http://theinvisiblestrings.com m kelter

      I definitely get the mouse/wall feeling, that’s a great way to put it.