By Heather L. E. McKay
Sensory Processing Disorder (SPD) is something that affects many people, and is very common in both ADHD’ers and autistic people. SPD affects each person differently, and that difference will directly impact their capacity and ability to do things, to live a ‘normal’ life and to cope with fluctuating sensory environments and experiences.
One person may be highly sensitive to light, but have no other sensitivities at all. Or another may only have a sensitivity to sounds and smells; whereas another person may be sensitive to every sort of sensory experience from every sense, eg: taste, smell, hear, touch, sight, interoception, proprioception, exteroception, and vestibular input. People often forget, or aren’t even aware of or understand that a sensory experience can involve more than sight, smell, taste, touch and hearing.
If a person has interoception issues, they may not interpret internal feelings of hunger, thirst, pain or the need to pee or poop. A person with proprioception issues may seem uncoordinated, or they may bump into things, or not quite seem to know where their body is within a space or perhaps struggle with spatial awareness. If you have exteroception issues you may have difficulty with things like a change in temperature, light or sounds in your environment or even someone touching you lightly in that environment. Exteroception is the receptors reacting to external stimulation. And Vestibular Input issues can affect the bodies need for things like stability of the body within a space; some people will need to seek out spinning and jumping activities and others will abhor them and avoid them.
Usually a ‘typical’ person will mostly experience life through the original five senses, as they will not be hyper or hypo sensitive to the other 4. They live life and take senses for granted, or do not understand that the additional 4 aspects of sensing exist or what they do, because those specific systems work properly and automatically for them. We don’t usually notice something about our brain/body systems until there’s something amiss.
Proprioception, Interoception, Vestibular Input and Exteroception are not taught to children at school, or usually in any environment; some disabled children are taught about them and how they work, and how to cope and adapt if those systems don’t quite work like they should. But I think all children should be taught about them, as they are an important part of us. They help us to understand ourselves (our environments and our reactions) and helps to understand others better; and their reactions to their environment. We may be in the same environment as others, but their experience of that same thing/or environment is completely different. Learning about these things helps us to be more empathetic about the disabled persons experience.
People without sensory issues will never truly understand the struggle that comes from the other four I’ve listed above. Most people without SPD will never know or understand what it’s like to be horribly motion sick from just walking down a hallway and turning around, or understand the pure bliss of having a weighted blanket or wearing a weighted vest or jacket and how that weight can relieve the brain and body experience from walking into something or falling. They also will never know or understand the extreme pain we can experience from walking from a warm room to an ever so slightly cooler room, or the sudden realisation that you need to use the bathroom and the pain is hideously intense because you didn’t recognise the early signs of needing to go (but you don’t make it and have an accident due to your malfunctioning interoception), or the devastation that hydration can do to your body when you never realise you are thirsty.
When we add these four truly debilitating issues to sensory sensitivity of taste, touch, smell, hearing and sight – we can be truly disabled. And the majority of the world’s population have no idea what this feels like, how it affects us, and they will usually dismiss us, gaslight us, or call us names, like “snowflake” or “overly sensitive” or “drama queen”, or they’ll tell us off and tell us to stop ‘overreacting’. This thinking doesn’t help anyone, as we are not ‘overreacting’ we are reacting with the exact proportion of reaction-to-pain ratio that anyone would.
Example: When a typical person puts their hand in a bucket of warm water, their body receives the information that the water is warm to touch, it interprets the information and sends it to the brain for processing, the brain then processes the information and sends the signal back to the hand that it’s safe because their body interpreted the water as warm, not hot and not freezing – and therefore safe. But there’s a few other elements here at play – the temperature of the water is being gauged by that person’s experiences of senses, and the processing is not being distorted or misinterpreted. They are neither Hyper or Hypo sensitive; their neurosystems and body/skin etc does not struggle with sensations of varying degrees, and they have no neurotransmitter issues.
Some ND people will experience senses differently because their transmitters send and receive information but the processing part of the journey gets confused or jumbled, so they misinterpret the sensory information. They may think something is hot, but it’s actually cold. This is less common, but it can happen
The majority of us are usually the other type of SPD, where our receptors are overly sensitive/ or heightened. You can have both issues – processing and heightened senses, and I feel for people who have this type of experience, I couldn’t imagine how hard that would be.
If you are the ‘heightened’ senses person (hyper-sensitive, see below for more)– you will experience everything like the adjustable knob has broken or fallen off. You have no control about how you sense the world and the things in it. Everything around you and inside of you can feel like that knob was turned up to receive everything in stereo at full volume, and then the knob fell off and now you can’t turn it down or off. If you are the hypo-sensitive person, it will feel like that knob was turned to off and you aren’t receiving anything properly or possibly at all – it feels like you are watching black and white TV for your entire life, you want that control knob to come back so you can turn the volume and picture colour back up – or even on.
If people without SPD knew half of the issues that we can deal with from day to day and year to year, they’d stop making fun of us and start helping. Education is always the beginning of understanding and supporting others. Hopefully this blog and my Book Series: “Autism: The Big Book Set of Help”, and other ND writers and educators can make some progress in this area.
To start that education, we must start with understanding the differences in these above-mentioned sense experiences, and how they affect a person with either Incontinence or ARFID, or other co-occurring disabilities.
Hypo vs hyper
A person can be predominantly Hyper-sensitive or Hypo-sensitive, but don’t forget they are often a combination of both, or have aspects of each, and that those predominant experiences can change throughout the years, or they can remain as they were from birth. But, to try to change the person to not be either hyper / or hypo sensitive is traumatic and often abusive. We are who we are, we don’t need changing, we don’t need desensitising. What we need is support to understand ourselves and our needs, and tools to support us to cope and live our best lives. Afterall, there are also some fantastic parts of SPD for some people – we can feel and experience more or we can block out things’ others can’t – depending on whether we are hyper or hypo.
What is Hypo-sensitive? Hypo is when you have little to even no reactions to your own senses and external stimuli. This state of being can be both good and bad depending on the circumstances – this is the person that may be able to block out or not hear loud noises, people or environments, or be able to feel less pain when hurt. But not feeling pain when hurt is also dangerous – because how do you know to seek medical help or to heal and rest if you don’t know there’s something wrong?
Many hypo-sensitive people find it harder to get a diagnosis of autism because many therapists don’t know how to identify it, or they think that autistic people can’t be hypo-sensitive. Let me assure you that they can be. Me and my AuDHD child have experiences of both hyper, and hypo sensitivities; we are the combined type. This is actually pretty common in AuDHD people, and I believe it’s a case of our body/brains fighting themselves and has a lot to do with our co-occurring disabilities (as seen below).
A predominantly hypo person will seek out experiences, for example: rich and very flavoursome foods and drinks, deep pressure, tickling, playing with sensory toys or objects constantly (like sand, slime, and even poop – we’ll talk about this in the poop smearing blog), strong smelling flowers or things like scented playdough, exciting and high impact sports/ video games or competitions, loud toys or hobbies with flashing lights and other extensive stimuli, and perhaps may even exhibit thrill seeking behaviour (but not always). These people feel the need to seek out high impact or high intensity experiences and feelings. If they don’t get those things – they can go into “understimulation” which leads to meltdowns and shutdowns.
Now this is where you may need to pay attention to be able to support your hypo-sensitive loved one, if they are struggling with their hypo-sensations. They are not seeking loud obnoxious toys and activities to piss you off or to annoy you – they NEED these things to prevent their own pain, to prevent them from going into meltdown, to prevent their own demise and/or torture. Again… I assure you - that understimulation is pure torture for the hypo-sensitive person. When I go into understimulation, my whole body vibrates, it hurts, I get headaches, I clench my jaw, I feel buzzing throughout my whole body, and then the itching starts, or I feel hot and uncomfortable in my own skin. I feel like I’m on fire, itching all over, hungry, mad, sad, pissed off, tired and ramped up simultaneously and it feels like this complete build up of energy. If I don’t release that energy by getting the right sort of stimuli in the right moment – I explode – exponentially. The explosion rages sometimes until I’m at peek exhaustion, because that’s what my body needed. It needed an over abundance of stimuli to calm me. The stimuli that I’m needing can work just like stimulant medications in most ADHD people – it calms me, it silences the buzzing and the need for inputs from all angles. But if I don’t get that stimulation my body goes into meltdown or shutdown.
Sometimes you may see a calm after the storm with Hypo-sensitive people - after they’ve had a meltdown, they are suddenly happy, calm, regulated and cooperative in the extreme. This is because the pure energy and amount of pressure a meltdown causes throughout their body is creating that stimuli for them. They managed to get out of ‘understimulation’ by causing it for themselves – internally. The internal reaction of a meltdown can meet the need of the under-stimulated – as it stimulates every aspect of your brain/body experience with a massive explosion of feeling. But be careful here. If the meltdown is too big, too overwhelming, or is interrupted or added to – the person can easily go from ‘getting out of under-stimulated’ and go straight into ‘overstimulated’ within a short time. When this happens, the meltdown is usually going on for too long or is incredibly intense and doesn’t slow down. A person who is in this type of meltdown will most likely be completely spent and exhausted when the meltdown ends. It’s best to avoid meltdowns and to find other ways to get out of ‘under-stimulation’.
To help a hypo-sensitive person with this need for stimuli, I often suggest making sure they have a range of sensory toys or equipment within their immediate environment. Kids can often get great stimuli from a small indoor trampoline, or from bouncing on a mattress or rolling around on the floor, wrestling with a friend or sibling or playing sports, singing loudly or dancing all over the place etc. An adult working in an office has less ability to do those things in an open plan office, but that doesn’t mean they can’t get those stimuli in other ways… and this is where a person with incontinence or constipation issues, or the ARFID person who needs to sit to eat more, may also gain some tools that help to remain stimulated while sitting for longer periods of time.
A person in an office or sitting at the home dinner table can use alternative seating like yoga balls, peanut balls, swivel chairs or chairs with wheels, or chairs with TheraBand’s around the legs – or a combination of a few (there’s a chair that has wheels and has a yoga ball in it which is great for this purpose). Alternative seating can also help with some other co-occurring disabilities like EDS, POTS or mobility issues. But a person sitting on a toilet doesn’t have a lot of options, but you can help – see the hyper-sensitive suggestions later in this blog.
For hands and legs there are still things that can help the hypo-sensitive. There are now floor mats that look like toy pianos that you stamp on to make tunes, there’s “toilet basketball” – soft ball with hoop and return on it made specially for bathrooms, fidgets (for touch stimulation), fishtanks or fake tanks that simulate fish/ jellyfish or other things swimming or moving (like Lava Lamps which are called “visual stimulators”). iPad’s or tablets can be a great source of multiple sensory input – brain and thinking stimulation, visual, hearing and touch as well as have the benefit of many apps and things (so if you do become bored of one app, it’s easy to switch apps). iPad’s, radios, podcasts, music, and TV’s etc are also great for people with co-occurring Misophonia who can’t stand the sounds made while eating, or when toileting – they can serve a multipurpose. Please Never use an iPad or tablet (screen) as a motivator or manipulation tool – more about this when we discuss ABA and other harmful potty-training techniques, and food therapies for ARFID.
For a hypo person with ARFID, they will likely binge eat, but only eat select or minimal types of foods, and those foods will usually be very flavoursome foods. They may also eat what many ARFID people think is odd or strange, because most ARFID people have the Hyper-sensitive profile. But you can be Hypo or combination Hyper/Hypo and still have ARFID. If you are combination, it might mean that you are hyper sensitive to taste or texture, but hypo sensitive to other things like touch or hearing – which would cause you to play with your food a lot, but not want to eat it or put it in your mouth. To help with this an OT can do a sensory profile assessment to figure out what things you are predominately hyper sensitive too, and what you are hypo sensitive to. These assessments and reports can also help to figure out what foods you are more likely to avoid, and which you are likely to prefer. Eg: if you are sensitive to smells, then curries and strong-smelling things like coffee may be highly disliked but loved if you are hypo sensitive. And if you love crunchy things or mashing things, you might like bananas for the mushing, but crisps/chips for the sound and crunch, but if you are hypo, and those things don’t have enough flavour they may revolt you.
For an incontinent person with hypo-sensitivity, look at the options below, but remember that just because a hypo person seeks out experiences to add to their ‘love it’ list, it doesn’t mean that bowel or bladder movements will be an experience that is included in that list. For many people, toileting and bodily functions cause a revulsion no matter their sensitivity profile, or sometimes it’s the one thing that makes them the combined sensitive type.
Ideas for tools for hypo people: There are room deodorisers or incense burners for olfactory stimulation, drinks and food for people sitting on a toilet (if you can stand having that sort of thing in a bathroom), chew toys, or things like chewing gum (only for people over 7 years old) for oral stimulation. Or you could play music, read a book (actually read or use audible or another format – like podcasts and things) for hearing stimulation. A weighting vest for proprioception input, physiotherapy exercises for interoception input while seated (like contracting and releasing muscles throughout the body one at a time and concentrating on it – also helps with proprioception), rocking from side to side could help with vestibular input and changing the temperature in the room for exteroception.
This list is not complete – it is to give you a place to start, some ideas to get you stimulated or inspired to think of things that may help you or your hypo-sensitive loved one. Look for things that fall within their ‘love it’ list and things that stimulate the senses that they prefer stimulated and not the ones they don’t like stimulated. Every person who is Hypo will have a different sensory profile to the hypo person sitting next to them. Just because you are hypo and love curries, doesn’t mean your hypo child will also love them.
Some disabilities that can also affect our hyper/hypo reactions: Raynaud’s Phenomenon, Hyperhidrosis, POTS, vision issues, olfactory nerve damage, hearing issues or deafness, motor disinhibition, dyspraxia, diabetes and many many others. Try and identify co-occurring disabilities that may be impacting your or your loved ones sensory profile, so you can figure out things that may help, without triggering the other disabilities.
The Hyper-sensitive person is the person that most people discuss when they say things like “my child hates bathrooms or public toilets”, or “my child hates the taste and texture of all foods”.
This is the person who hates many stimuli, who covers their ears when they hear loud noises, or flinches and squints when the lights are too bright for them, or holds their nose or breath when near a person wearing perfume, or throw up if something has too much flavour etc. This person will usually find ‘normal’ experiences overly stimulating and painful. To be clearer, I will clarify….. Yes, all people will squint, block their nose, flinch or hold their hands over their ears if external noises, sights and smells etc are too much for them or cause pain. But an SPD person who is hyper-sensitive will walk into a building with a ‘typical’ person and have totally different experiences.
The typical person would not even notice that the lights are turned on, they won’t hear the typing on keyboards or the person sitting in the corner breathing, they won’t smell the receptionist’s perfume from 10 metres away, they won’t fall or experience vertigo from walking through a doorway, they won’t suddenly need to pee because the temperature is one degree lower than it was outside, they won’t hear the buzzing of electricity, they won’t smell the cleaning materials used to clean the place the previous night, they won’t feel the rush of air attacking them as someone slowly walks by them, they won’t feel or understand any of it, but the hyper-sensitive person will.. and possibly may even be incredibly painful to them.
To help the Hyper-Sensitive person: you will need to find out their triggers. Which senses are more hyper reactive than others, and how much is too much – in any situation. Don’t try to desensitise them – that doesn’t work anyway, and it’s highly abusive to the hypersensitive person.
If they have hearing sensitivity, they may need headphones, but, if they have misophonia headphones increase the sound of your own chewing in your head while eating – so headphones will trigger misophonia at meals times but may help a person to use a bathroom to block out unsavoury sounds.
If their olfactory senses are in hyperdrive, toileting is terrible. Public bathrooms are the worst for smell sensitivity; they usually have strong smelling cleaning products, deodorisers and of course – bodily functions. Toileting has to be the worst thing in the world for a hyper sensor. The smells, the sights, the noises, the people, the lights, the hand-dryers and loud flushing, the doors slamming, the touching cold and dirty surfaces with different parts of your body – just ewww!!!!
For toileting or for ARFID; think of all the things in your bathroom or kitchen, or meal area that may affect all the senses, and how you can minimise their impact on SPD. Start with identifying each thing that makes a noise – write them all down and how you can stop them or minimise them. Then move onto smells and do the same, then sight, touch, taste (you might be surprised that if a hypersensitive person smells something too strongly – yes – they can taste it without putting it in their mouth – it actually takes over all of their senses, and can make them vomit – without eating a thing). Don’t forget to look at the extra 4 things that affect our ability to sense and feel…
Exteroception: things like temperature differences, light changes, people moving around them or being sensed within the area, objects and things in the immediate area that over stimulate/ under-stimulate etc.
Interoception: their ability to be able to feel hunger, bowel or bladder needs, pain or thirst. A neuroaffirming OT may be able to help- like Kelly Mahler, or Greg Santucci – find them on Facebook or other platforms. Working on recognising different bodily signals can help to improve overall health, as long as you also look at tools to help with co-occurring issues like executive functioning that is stopping you from listening to those signals once you finally know how to recognise them – you can’t do one without the other.
Proprioception: look at seating and how they hold their body when seated. Do they sit strangely; on one knee, all bent up like a pretzel, or do they need space around them – one of these is hypo and the other hyper – can you recognise which is likely to be which yet? I sit on my leg while typing constantly as I’m seeking proprioception, but my son sits up straight on a swivel chair at a table with even distance all around him – he is meeting his own proprioception need of space and less pressure against his body while meeting the vestibular input need of movement.
Vestibular Input: do they avoid quick movements, are scared or hate being pushed very high on the swing, or do they prefer sitting up or sitting still instead of moving about a lot? Or do carnival rides and moving things like cars or rocking chairs terrify them or hurt them?
Or do they display more hypo vestibular issues and seek out spinning equipment at the playground, or spinning in a swivel chair, or do they ask to be pushed really high on the swing, or do they love racing cars and doing cartwheels or acrobatics, or do they look for hobbies that require a lot of movement? Look at their natural instincts to do things – and find things that will help with get that input while toileting or while eating.
I hope this gets you started to think about your own home, school or workplace and how these environments either trigger SPD or help it. And how you can identify and remove those triggers and hindrances, and replace them with appropriate tools or coping strategies to support the individual. All individuals within those spaces will have different needs and triggers.
If you’re a teacher or an employer, I beg you to do a sensory assessment on your classroom, or workspaces to figure out what could be triggering to someone, no matter if they are hypo or hyper sensitive. What could you put in place to help the individual or a group of people within that space. Disability tools are also human tools – and all supportive tools can be used to help all humans. Everyone can benefit from an inclusive environment that has been properly assessed and adapted for sensory issues. But no one wins in a sensory hell hole – whether it’s the minimalist look to only help hyper sensitive people, or if it’s the extreme stimulation environment that only helps hypo people – when you go either direction, or remain in the middle (where you have both over and understimulation around you – but you don’t have tools or supports to block out one or the other), you often help no one – and actually cause harm to all.
School classrooms are the perfect example of a space that hurts all SPD people. Classes are asked to be quiet and sit still – which can hurt the hypo person and help the hyper… but they also have lots of transitions, art plastered all over the walls and occasionally a lot of noise – which can help the hypo but can hurt the hyper (depending on sensitivity and needs of the individual). And don’t get me started with the combo hyper/hypo person. They are both under-stimulated and overstimulated by different senses simultaneously in the same environment that can help a hypo but hurt a hyper and vice versa. The poor innocent and often forgotten about combo type is constantly in a state of flux, in a state of pain, and constantly masking that pain to cope and get by – but are hideously close to burnout at all times.
Please care for the combo type person, it’s mostly a balancing act of low demands, and making sure they have both tools that stimulate them and protect them from stimuli simultaneously. Combo type is (I believe) harder to manage, because the thing that helped them get out of understimulation yesterday – may send them into overstimulation tomorrow, and you may never know what may trigger them. Toileting can be hit and miss, they may be able to use a toilet today, but unable tomorrow. The ARFID person may like a food today and hate it tomorrow. Fluctuating capacity also influences how their hypo/hyper reactions affect them – it’s best to keep their day balanced and fairly predictable but have wiggle room for spontaneity – if they want that…. It has to be their decision and choice.
With combo SPD, the person may be hyper-sensitive to sound, but hypo sensitive to most other stimuli. This may mean that they feel pain with sudden noises, or with certain types of sounds (like a lot of people talking at the same time in an enclosed space, or a loud hideous/ but predictable noise- like a hairdryer or a vacuum), but at other times they may seek out loud predictable music that they love – to stimulate their whole body/brain experience. Don’t presume anything.