Sensory processing disorder (SPD) and Autism Spectrum Disorder (ASD), have estimated comorbidity rates of 42–88% [Baranek, 2002]. In fact, it is suggested that up to 90% of autistic individuals have sensory difficulties [Deweerdt, 2016]. Sensory processing disorder is an umbrella term that can be subcategorized into three primary diagnostic groups, encompassing a variety of sub-types. Each individual with sensory difficulties experiences different challenges. In this post I will discuss my experience, being hypersensitive.
Individuals with hypersensitivity are oversensitive to things in their environment. This can sometimes lead to sensory overloads, which happens when the sensory experiences around a person are too great for their nervous system – and they are not able to process or make meaning of it. This can become very stressful, uncomfortable, overwhelming, and at times intolerable [Aruma, 2018]. Oversensitivities can occur over the eight sensory systems:
Visual (sight)
Auditory (hearing)
Olfactory (smell)
Gustatory (taste)
Tactile (touch)
Vestibular (contributing to balance and orientation in space)
Proprioceptive (sensing the position, location, orientation, and movement of the body and muscles)
Interoception (sensations related to internal organs, providing a sense of what our internal organs feel e.g. hunger and thirst)
From a young age, it was clear that I was very particular in my mannerisms and behaviours. I was the cleanest baby you can imagine - my parents recall feeding times where I would refuse to eat another spoon if I had even a single grain of rice on my face. I was stubborn about what I would wear as everything felt ‘itchy’, to the point that I would throw tantrums whilst shopping. From labels and threads, to haircuts and nail clipping, I would transform in a split second from a happy child to be distraught terror. As the years went by, my exhausted parents would give in to my demands.
These differences became more apparent when I moved to Dubai (a coastal city). My younger brother would sit on the beach eating handfuls of sand, whilst I would stand at the edge of the path refusing to venture anywhere near the beach. I used to have persistent unexplainable nightmares, which I vividly remember even now- a piece of string reaching an end or a needle reaching its thinnest point, would bolt me upright from my slumber, screaming in extreme distress, (well I did term them unexplainable)! My parents had knowledge of Sensory Integration Disorder, as it was labelled back then. They attributed my ways to a slightly premature and traumatic birth but as the intensity of my symptoms grew and became more disruptive to the whole family, they took me to an educational psychologist who diagnosed Sensory Processing Disorder as it is now known. I met with an occupational therapist for a few months and settled back into school and life.
Understanding and acknowledging my sensory struggles has been a huge challenge over the years as it can be hard to explain and pinpoint (especially with the addition of alexithymia*). Certain stimuli can set me off, making me feel uncomfortable and in some cases causing a ‘meltdown’, where I struggle to cope with anything and feel a complete loss of control. I have experienced such sensory overloads throughout my life however, they are intensified in times when I am stressed and overwhelmed (particularly when dealing with changes or an unknown).
As you can imagine, lockdown is a textbook example of an unknown, unprecedented change. My sensory difficulties were the primary reason for reaching out to the school support team and a contributing factor that led to my diagnosis.
1. I find it very difficult to explain certain triggers and how they make me feel, so I can only imagine how confusing it must be for those of you who have never experienced anything similar. I was contemplating the best way of trying to explain my sensory troubles, as they have a prominent impact on my life. If you search SPD online, there are hundreds of websites that can provide you scientific background, evidence, and research, however, I don’t think this necessarily makes it any easier to understand. Sensory difficulties branch into all aspects of life: food, clothes, environment, habits, school, and more. Thus, I thought it may be useful to compile a list of some of my pet hates, unique mannerisms, and sensory experiences to give you examples of some of the challenges those with sensory difficulties face. For individuals with ASD or SPD, I hope this is somewhat comforting, knowing that there are others who encounter similar difficulties.
2. If you are trying to decipher my vague and so-far unrelated title, ‘just chicken and bread’, let me help you clear the fog. This is my typical order at a burger joint, mainly because I HATE SAUCES. By sauces, I mean ketchup, mayonnaise, mustard, etc. Although I admit that I have never tried any of these, I am absolutely resolute that I would not enjoy them and can’t even consider touching the condiment sachets most of the time! Unfortunately, I am unable tell you what my disgust is based on but even thinking about ketchup packets distresses me. My repulsion of sauces and their sachets is so extreme that if they touch my food, I refuse to eat from that area of my plate. This is a huge improvement in behaviour though. When I was younger, I would just freak out, flapping my hands and making uncontrollable noises of disgust that would culminate in a stern few words from my parents. I learnt to calm outwardly as the awareness of other diners staring dawned on me but this provoked an internal stubbornness whereby, I would reject the food despite my grumbling belly. As you can already see, I have particular food habits. This includes how they are presented on a plate. Although this is a habit I have grown out of from an understanding that it is not socially acceptable to request the waiter to present all the ingredients of a dish individually, I still prefer it when different foods are placed separately on a plate, giving me the option of whether I choose to mix them or eat them one by one - simple organisation!
3. Next is soup. This one is a processing thing, but I physically cannot understand why people would want to drink food. What is the appeal of soup? I do not understand why anyone would want to drink vegetables, for example. Why not just eat them? Then you experience the pleasure of biting and crunching. When eating a meal, I need a variety of textures, but more importantly, I cannot do mushy food. Therefore, I also prefer to eat unripe (hardened) fruits. It drives everyone mad as I have been known to slice an apple only to decide that the knife went in too easily so it must be soft hence can’t be eaten!
I can’t eat any foods that are very oily or greasy. I have pinpointed this down to the coating the oil creates on your fingers, lips and inside your mouth. I can feel the grease encompasses my whole body. Even with the use of tissues or hand-washing, it is still a hard pass from me - so no McDonalds, please.
4. The sounds of chewing, slurping, or even breathing loudly are some of my biggest daily struggles. I either need to leave the area or just shout ‘STOP!’. Whilst researching this intense feeling towards these sounds, to try and describe it clearly, I came across something called misophonia - a disorder in which certain sounds trigger emotional or physiological responses that some might perceive as unreasonable given the circumstance. Those who have misophonia might describe it as when a sound “drives you crazy.” Their reactions can range from anger to annoyance to panic and the need to flee [Smith, 2018]. This is a probable cause of my reaction to such stimuli (and also an example of how new my diagnosis is and that I am still learning).
5. Undeniably, the least established sensory system is interoception (sensing what is going on inside your body). For most neurotypical people I believe, it is obvious when you are thirsty or hungry, so you know when you need to eat or take a drink. In the same way, when you feel angry or upset, you know how to explain what is troubling you. However, this is something I find difficult, almost impossible. I don’t always know when I am hungry, thirsty, tired or whatever it is that I am feeling (alexithymia*). Many times, this has resulted in me shifting into a negative mood as I know that I need something or that something is wrong, but I just don’t know what. This can be hugely frustrating for those around me but to be honest it’s even frustrating for myself. For example, my mood shifts, my mum picks up on it and asks what is troubling me and if she can help. My instinct and first response is to reply that nothing is wrong and then she sets on a path to offer me solutions- can I fix you something to eat, would you like a drink, are you tried, are you hot/cold, etc? Having run the script so many times we now know the whole act. We have practiced the moves and perform the dance so well that we finally find the solution together.
6. When I was younger, I could rarely wear clothes that needed to go over my head. When putting my head into a t-shirt, I would become panicked as I felt claustrophobic and could not cope with the darkness. Although this is no longer the case, it is one of my earliest memories of facing challenges in daily life. This would play out each school PE lesson when we had to change from our uniforms into a tight-necked T shirt, easier said than done when you are three. Even more so when amongst the darkness and panic, you truly believe the sleeve is the neck! Nowadays, I still steer clear of high neck tops.
7. Whilst it is true that I have a mad sock obsession and I only wear odd socks, as a child I refused to wear socks at all. I hated the seams inside the sock so the only way I would consider wearing them would be inside out!
8. Another thing I have grown out of but was fully opposed to was wearing leggings and tights. Having lived in a cold country and done ballet, you can imagine my struggle. I couldn’t stand pulling them up and trying to orientate the seams which never seemed to settle in a comfortable spot. However, this is a great example to show that sensory difficulties can change over time as leggings are now an essential part of my wardrobe.
9. The cliche but very real struggles are tags and clothing labels. I am constantly having to cut out tags or cover seams with sticky plasters, so they don’t ‘itch’ or annoy me.
For some reason, one of the places where I am most sensitive is my collar bones. I hate having straps on clothing as it annoys my collar bones, causing an uncomfortable, tickling sort of sensation. As this is obviously not avoidable as a girl due to necessary undergarments, it is something I have had to learn to deal with despite the resulting distraction. During times where my sensory challenges are heightened, I go days or even weeks where I can’t wear any clothes that touch my collar bones (bandeaus are my saviour!).
10. In general, anyone close to me knows it is very hard to buy me clothes. I have to try and feel materials for myself. This was a huge pain when I was younger, as I used to have several tantrums during shopping trips, either from the noise and busyness of a mall or the uncomfortable feeling of clothes materials on my skin.
11. love music- so going to concerts is not necessarily a problem. I can cope with loud noises and crowded places most of the time. The issue arises in relation to the noise and/or amount of people in a confined space (like a house) where I can feel intensely suffocated.
12. Living in Dubai is an incredible opportunity; the city is a melting pot of cultures. Listening to prayers from the mosque has always been incredibly soothing, but in times when my senses are extremely heightened, even familiar sounds can result in sheer panic. This occurred quite recently during lockdown one night. I struggled to cope with the volume of the prayer calls coming from several mosques simultaneously.
13. I hate the sound of an alarm, so much so that I ensure I am awake before my alarm goes off. I hate the anticipation of hearing a loud, abrupt noise, as well as the sound itself. Even the sound of timer upsets me, however it has been something I have had to deal with, whether it be setting cooking timers or times when playing games. Some tones are worse than others. My family knows they cannot set the 'radar' sound (iOS devices) as it completely freaks me out.
14. Living in Dubai, it can get quite hot (like 50 degrees hot). Therefore, we use air conditioning (AC), except, I can’t stand the sound of the AC. It is such a disturbing, constant ratter that interrupts my thinking and generally bugs me. This poses a huge dilemma as I am not very good at coping with the heat, so it is a case of deciding whether I prefer having a noisy room, or a ridiculously hot room...
15. I cannot tolerate being tickled, touched or massaged. It is one of the most uncomfortable feelings, having someone else invading my personal space. As I have grown up, I have realised that I am unable to cope with light touch like a tickle; I prefer firmer tactile stimuli like a hug. Although my tolerance has definitely improved over the years, even that can overwhelm me at times.
16. As a little girl, I had a very specific way that someone could brush my hair, and only my dad could do it. Following on from the last point, I needed the brushing to be forceful. I would not allow gentle brushing. As soon as I could manage, I began to do it myself, applying the pressure I needed.
17. I also hated having my nails cut. If you know me, you know my nails are always short and almost always unpainted. I struggled with cutting my nails in particular because I was very specific about the length and the way my nails had to be cut. I have used the same nail cutter my entire life and until I was able to cut them myself, my mum was the only person who was allowed to cut them. I also do not have manicures and pedicures as I find the whole experience quite uncomfortable, having someone else cut, groom, and file my nails. I hate the sound and the feeling of the nail file against my nail and skin. It gives me goosebumps and I feel the need to pull my hand away (almost like an automatic reflex).
18. When I was younger, I could not tolerate cream or lotion (like sunscreen or moisturiser) without feeling like I needed to scrub off a layer of skin. Again, this has been something I have had to learn to accept.
19. Before my diagnosis, I noticed that on days at school when I had a large number of lessons or activities, I would become quite jittery and anxious. I could not sit or stand still. My senses were more heightened. Reflecting, I believe the constant activity leads to sensory overload. Being able to recognise this now, I use my free periods to unload in a low sensory stimuli environment and appreciate that are times when I need to go to bed in order to recuperate.
20. During the lockdown, I have struggled with the whole online aspect of learning. I am someone who prefers pen and paper, in fact, I need to feel the pages in order to gauge the volume of work. In online examinations, I have struggled as I prefer to have the question and answer booklet in a physical form so I can understand what I have to do and just generally feel at ease. Not having this luxury, I was significantly more distracted and apprehensive. In addition, the constant glare from the computer was exhausting adding to my sensory overload. At the end of a day of online learning I would commonly sleep for several hours.
This list describes just some of the sensory difficulties I have faced, however, there are plenty more that I have not mentioned (otherwise we would be here for a lot longer). Being aware of them (especially with my recent diagnosis) has made me more accepting of my subconscious and conscious coping strategies like sleeping. I think it is so important that as a community we are more aware of sensory difficulties, in order to help make the lives of those who have such troubles slightly easier. A large part of these challenges is actually just trying to explain to someone why I feel overwhelmed or why I can’t cope with certain stimuli. If we have more knowledge, it would mean less justification is needed, and therefore individuals struggling with SPD can focus on themselves and their needs, rather than the needs of the community.
I am hugely appreciative of you taking the time to read and learn about some neurodivergent challenges. And I hope this is a step forward so we all can be more accepting and understanding.
Thanks for reading,
Nidhi :)
btw - I found a really insightful 'day in the life of someone with SPD. For those of you who are interested, I would recommend having a look here.
References
Aruma, 2018. 6 facts about sensory hypersensitivity. Aruma Disability Services. Available at: https://www.aruma.com.au/about-us/blog/6-facts-about-sensory-hypersensitivity/. [Accessed September 15, 2020].
Baranek, Grace T. “Efficacy of sensory and motor interventions for children with autism.” Journal of autism and developmental disorders vol. 32,5 (2002): 397-422. doi:10.1023/a:1020541906063 [Accessed September 25, 2020].
Deweerdt, S., 2016. Talking sense: What sensory processing disorder says about autism. Spectrum News. Available at: https://www.spectrumnews.org/features/deep-dive/talking-sense-what-sensory-processing-disorder-says-about-autism/. [Accessed September 15, 2020].
Nicholette Zeliadt, 2019. Chicken, crackers - and crayons: Autistic children's unusual eating preferences. Spectrum News. Available at https://www.spectrumnews.org/news/chicken-crackers-and-crayons-autistic-childrens-unusual-eating-preferences/ [Accessed July 26, 2020].
Smith, M.W., 2018. What Is Misophonia? WebMD. Available at: https://www.webmd.com/mental-health/what-is-misophonia. [Accessed September 20, 2020]
Cover image: Carol Stock Kranowitz, M.A., 2021. "sensory processing disorder in kids" [podcast episode #112]. ADDitude. Available at: https://www.additudemag.com/sensory-processing-disorder-in-kids-podcast-112/ [Accessed February 10, 2022].
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