How your autism affects you: Part 2

This is the second of three articles explaining the worksheet. The first article covered diagnosis, other neurodiversities, learning difficulties, and Wing and Gould’s Triad Model of autism (social communication, social interaction, and social imagination).

Note: If you fill in this worksheet, consider who you might share it with and why. Some of the questions will contain a lot of confidential information about your health, history, and how you process the world. I hope it will help you understand more how autism uniquely affects you, and to explain parts of this to people who know you professionally or socially, but your safety and confidentiality both need to be considered before you share your answers and choose which ones to share and with whom.

Disclaimer: Autism affects each person uniquely and you may not align with every aspect of this worksheet. 

7. Sensory processing disorder (SPD)

SPD means that you are either hyper (over) or hypo (under) sensitive to stimuli from the different senses. A person may experience both hyper and hyposensitivity at different times and differently in different senses, and with that will either find themselves overwhelmed by too much sensory information or feel under-stimulated and seek out sensory stimulation to feel regulated.

Spectrum News quote SPD as affecting 15% of the population, but 90% of children with autism. A sensory profile is unique to everyone in how they go about seeking equilibrium to regulate. Stress and the environment also play a part if multiple senses are being stimulated.

Sensory overload is when there is too much information to handle – if a neurotypical (NT) person stood next to a speaker at a gig, it may be too loud so they move away, or if the stage light flashed in their eyes, they might close them or relocate. A person with SPD may find that they cannot escape the light or noise and experience overwhelm, which can be a major reason for behaviours that challenge (‘meltdowns’). If we can seek to understand our sensory profile, we can find ways to regulate ourselves to an optimal level of stimulation and plan for environments that might be likely to lead to overwhelm.

People without SPD are also better able to filter out background information (e.g. writing this in my living room, I can hear the clock tick, smell my brewed coffee, notice the red TV standby light, and feel the weight of my hoodie – all of which I mostly filter out), whereas if we have processing hyper-sensitivities, the stimuli from those background senses can be too intense to ignore.

Touch

Touch is a series of different senses in the skin but also other body parts such as the tongue, genitals, and epithelial cells. With touch, we detect pressure, pain, heat, and texture. A person with hyper-touch is likely to feel overwhelmed by physical touch such as being pulled in sports or hugged; they may find that clothing rubs and is uncomfortable, chairs and bedding feel too hard, or a sense of disgust at certain touches like in bathing. Touch sensitivities can even be experienced as allodynia, where gentle touch can physically be experienced as pain – especially if the person is already overwhelmed.

A person with hypo-touch might appreciate weighted blankets, being squeezed, or tough play like in rugby; they likely enjoy hard food like nuts and feel regulated when touch is firmer and more pronounced.

Taste

Taste is a combination between smells and the different taste receptors on our tongue and mouth. A person who has hyper-taste will likely find many foods are too pungent, strong, or the texture off-putting. They may experience an avoidant or restrictive diet (ARFID) where only certain foods don’t create a sense of sensory overwhelm or a feeling of sickness which can cause significant anxiety when their diet is changed, or if eating out. Fruit and vegetables, for example, are variable in how they taste depending on ripeness and between batches such that two apples from the same tree could taste very different and be hard to predict.

Hyper-taste will also likely cause intolerance to herbs and spices that others may not notice. It can also combine with other senses such as hyper touch where food that is too chewy or mushy may create a sense of disgust because of the mouthfeel of the food’s texture, even leading to gagging. A person with hyper-taste isn’t a ‘picky eater’ or difficult, it’s that too much flavour creates a sense of disgust and sensory overwhelm that prevents the person from being able to eat (just as I might feel revulsion at trying to eat a very strong curry, or a pregnancy may create sickness at eating certain foods).

Someone with hypo-taste may need to add more spices and flavourings to food to enjoy it and feel regulated. They may be keen to try lots of dishes, and even try eating objects (Pica). It could combine with touch to want foods with interesting and varied textures.

Smell

Smell impacts much of taste, but also on our tolerance and detection of aromas. A person with hyper-smell may find they are sickened and unable to eat if there are strong aromas in a room (for example, boiling cabbage), or that some foods have a smell that creates revulsion. They may also be sensitive to smells like perfumes, candles, cleaning products, animal smells, flavoured laundry detergent, or if a toilet has been unflushed such that they need to leave the room in the presence of these smells and may find themselves coughing or overwhelmed by it (just like you might be if someone has really overdone it on aerosol deodorant). Smell sensitivities can be difficult to risk assess for and prepare for (e.g., ear plugs work with sounds, but it's harder to plug a nose) in environments outside of the home and can make that environment intolerable to be in.

Hypo-smell means needing stronger smells to feel regulated due to a less sensitive nose. A person may appreciate olfactory stimulation exercises such as fragranced jars to smell, use more spices in their cooking, and more potent perfumes or fragrances in their home. A person with hypo-smell may also not notice if they have body odour issues or notice smells people may find repulsive such as rot, faeces, or the smell of gas leakages. This can lead to a risk of bullying if there are body odour issues and the need for schedules to remember to wash if we are sweaty, or a risk of danger from not noticing smells that usually warn us.

Vision

Vision relates to the brightness of lights, colour preferences – with some colours being overwhelming and others calming – and noticing motion in the background such as registering other people in a crowded room or the flickering of fairy lights on an Xmas tree.

Someone who is hyper-visual may find the world to be too bright outside and find themselves overwhelmed or fatigued by the sun or bright lights – possibly appreciating sunglasses to dampen it down. They may also find certain colours too stimulating and others less or more tolerable. With food, they may prefer blander-coloured foods such as white bread or porridge rather than brightly coloured foods. They may also find that they notice the flashing light of a charging phone or the movement on a TV screen in a pub that they are unable to ignore.

Someone who is hypo-visual will likely appreciate more vibrant bright colours, bright lights, and lots of visual sensory information going on around them such as a crowded club to feel regulated. They may be in danger, for example, of not noticing cars when crossing the road. They may also find darkened rooms at bedtime too bland to feel regulated and safe enough to sleep, perhaps often using the phone before bed.

Auditory

Auditory relates to the sounds we hear within and outside of us, as well as our ability to filter background noise. Someone who has hyper-sound may notice their own internal body noises such as their heart beating and struggle to ignore it, they will also likely notice background noises such as the humming of electrical devices or a clock ticking and need a space of quietness to feel regulated or to sleep. They will likely find performances (such as concerts, the cinema, or firework displays) have the volume up too loud and experience overwhelm at the noise. A person with hyper-sound is likely to notice background conversation if in a crowded place like a restaurant and struggle to focus on the conversations in front of them. They may carry earplugs with them if they begin to experience overwhelm or the volume is too loud and need to leave the environment.

Hypo-sound will leave a person feeling as though things aren’t loud enough; they will likely turn up the volume on their devices and may also talk loudly as normal talking volume isn’t regulating. They may also not notice background noises and have a similar risk of danger from not noticing cars. 

Both hypo and hyper-sound may find making a noise regulating if they are experiencing overwhelm as it creates one central sound to focus on (hyper) or gives a volume that is comfortable (hypo).

Proprioception

Proprioception is the spatial awareness of our limbs in relation to our body such as our hands and feet. It controls fine motor control such as the force and pressure we need to stroke a cat without it being uncomfortable or learning to write. It controls our strength or awareness of our strength and posture as well as awareness of how much our joints can extend without hyperextension or risk of injury. It also involves awareness of our body in relation to other things and people.

A person with hyper or hypo proprioception may be called clumsy “you don’t know your own strength” – often spilling or walking into things. Fine motor skills like playing an instrument may be challenging; they may also find that they misjudge personal space or are unaware of how close they are to a person. They may find they have joint issues from hyperextension. A person with hypo-proprioception may need to stomp, jump, and do lots of physical activity to feel regulated; tools such as weighted armbands may be used on the limbs to help create awareness of their location in space.

Vestibular

The vestibular system is within the inner ear and is used to detect balance. A person with hypo-vestibular may rock back and forth or spin to feel regulated and appreciate physical activities involving motion. A person with hyper-vestibular may find they feel dizzy with course movements or if their feet are off the ground and may experience car sickness. The vestibular system can also affect learning to walk or do new physical movements or balancing.

Pain

Pain helps us to be aware when our body is injured so we can treat that body part or avoid further injuring it. Pain can be from damage, but also from heat or cold such as when we are drinking a boiling cup of tea. Someone with hyper-pain may struggle to ignore aches or pains they suffer or to cope with injuries or food that is too hot.

Someone with hypo-pain is at risk of not noticing when they are injured which can lead to further injury and may be at risk of self-injurious behaviour such as biting/hair pulling to feel a sense of pain regulation or a point of focus.

Pain is also our internal perception of bodily injuries such as toothache, stomach aches, headaches, and muscular-skeletal pains. Someone with hypo-pain may not have awareness if they have toothache and find it contributes to a sense of overwhelm without knowing why or that tooth decay isn’t treated in time risking abscesses.

Someone with hyper-pain may have vivid awareness of each bone and muscle in their body, and find it difficult to ignore aches, pains, and illness. Things like chest palpitations may feel overwhelming and create a sense of panic, or an overly sensitive desire to seek medical attention over less serious issues.

Interoception

Interoception is our awareness of different internal processes and regulations within the body. Some examples of this include noticing our body temperature e.g., awareness of dressing appropriately for the weather conditions outside, our sense of hunger or thirst, tiredness, hearing our heartbeats, pain (mentioned previously), and exhaustion.

Hyper-interoception might look like feeling the cold severely or overheating and becoming itchy when it’s hot, getting full very quickly or struggling with mood when you are hungry, a constantly parched throat, hearing your heartbeat, struggling with aerobic exercise due to sensitivity to muscle fatigue, or feeling a sense of tiredness easily.

Hypo-interoception might look like not noticing our medical needs as easily, not noticing when we are hungry or thirsty, overeating/drinking by not realising when we are full, pica (eating inedible things such as coins due to not noticing hunger), wearing too many layers in the summer or too few in the winter, overexerting ourselves in sports and risking injury, and not getting enough sleep or staying up late without noticing how tired we are.

Emotions

The Autism Research Group estimate that 50% of autistic people have alexithymia.
Alexithymia is the difficulty noticing, identifying, and regulating emotions in ourselves and others. It is a myth to assume that someone with alexithymia does not have feelings – they do, but they may struggle to identify them fluently or may use different language to convey feelings. This may mean that the person is dysregulated but struggles to realise that they are until they are overwhelmed and at risk of meltdown – when those feelings have become too pressing, or when only those strong feelings register. Leah Kuyper came up with the idea of Zones of Regulation to describe how regulated we feel into four colours: 

• Blue zone (sad, bored, tired, sick).
• Green zone (happy, focused, calm, proud).
• Yellow zone (worried, frustrated, silly, excited).
• Red zone (angry, overjoyed, panicked, terrified).

The idea is to help a person realise what zone they are in to give them more control in order to self-soothe before they find themselves overwhelmed in the red zone.

There can be a belief that counselling is very focussed on feelings and you need to be ‘in touch’ with your feelings to attend, or that the therapist will interrogate you with the question “So how does that make you feel?”. My experience is that I am attentive to the feelings within what my clients say and may be expressive of what I think I am noticing so that those feelings can guide the meaning behind something, but feelings don’t need to be evoked and tend to spill up when they are ready.

We also need to recognise that communication involving stories, special interests, creative work, images, and snippets of a person’s history can be a rich descriptor of how they are feeling, expressed in a way that is unique to them. It’s more important that you feel regulated and accepted within therapy than that you use feeling words, and you shouldn’t have a sense of being pressured to be any way than what you are by a therapist.

8. Other physical

Diet

We discussed how 90% of autistic people will have sensory processing disorder and each sense might affect diet; for example, with visual, there may be a preference for less vibrantly coloured foods like beige rather than multiple coloured mixed plates, with touch there may be preferences for hard foods or a revulsion against mushy food, with taste spices and seasonings may be overpowering, smell could cause the gag reflex at certain intense smells like boiled cabbage, and interoception may affect the sense of fullness or hunger.

Social imagination can create a preference for routine and structure which can make unpredictable foods (like fruit that changes taste as it ripens or between apples) distressing, or a desire for a routine dietary plan and distress if that plan is changed (“it’s Friday, where are the fish and chips?”). Social imagination can also create rituals and preferences in the preparation and making of food. When foods are changed, or new foods are introduced it can feel unpredictable and anxiety-invoking.

This combination can lead to ARFID, where a person’s diet is restricted quite severely and can lead to anxiety if a person cannot predict what food will be available (for example in a restaurant, or eating with friends). There can be a predictability, particularly with processed foods, but even then, a change in recipe or exception (bone in a chicken nugget) can ruin that food group. Having a restricted diet and preference towards processed food can also cause nutritional issues or weight issues.

A 2014 study stated that children with autism are four times more likely to have GI tract issues and have hyperinflammatory responses (a hypersensitive stomach) which can cause bloating, diarrhoea, acid reflux, and appetite issues. Interoceptive issues can make accurately knowing where and how the stomach hurts difficult, alongside social communication issues making the communication of this difficult with a GP. This can lead to a nasty combination of an unclear uncommunicated pain in the stomach from an overly sensitive GI tract. 

Pica is the eating of inedible objects such as pennies – it can also develop as a way of meeting sensory needs such as a desire for hard foods, to try and ease stomach pain, or as a self-soothing strategy for anxiety. With Pica, we can ask ourselves what need the eating of these objects are meeting.

Allergies and food hypersensitivity

There have been some associations between allergies and autism (see Spectrum News from 2018) linking higher rates of food allergies and sensitivities (including the previously mentioned GI tract sensitivities), skin allergies like eczema, respiratory allergies, and auto-immune or immune conditions. It is not clear if this is causal, but an autistic person may likely also suffer from more allergies.

Sleep

Interoceptive sensitivities may affect a person’s awareness of their tiredness. A person who prefers a visual learning style of learning may find screens appealing, but these can affect our circadian rhythm if used before bed.

Special interests and time perception can cause us to get carried away with a task and affect our nighttime routine. Sensory hypersensitivities can leave a person overstimulated which can make relaxing into sleep difficult, or mean awareness of things such as background noises or the weight of the blanket distracts from being able to relax enough to sleep. Social imagination may mean a preference for a fixed routine around bedtime, and distress if that is deviated from. GI tract issues or sensitivities to things such as noise may mean disturbance due to pain/cars on the road which can cause restless nights. All of this can lead to difficulties settling into sleep, and staying asleep through the night.

Processing time

All humans will process information at different paces and then respond to that information. If you are asked a question, there is usually a pause for you to answer. If you do not respond in time to the questioner or give a non-verbal placeholder to communicate what you are thinking (“ummmm”), they may try to explain their question/ask another question to stimulate you.

A lot is conveyed within a question on top of the sensory information within the environment that the person is trying to filter, and so some autistic people may appreciate extra time to respond. If they are not given a chance to process, space to reflect before communicating, or a bombarded with questions, they may become overwhelmed. If someone needs extra processing time, try leaving an extra five seconds longer than you normally might when you ask a question. Also, avoid asking several questions at once (something I realise I have done in some of the worksheet questions) to avoid confusion and give time for that question to be answered without confusion.

Learning style

Edelson writes here about the four learning styles of visual (pictures, charts), reading and writing, auditory (hearing a teacher speak or having a conversation), or kinaesthetic (doing physically). He states that neurotypical children may have a preference for several learning styles, whereas a child with autism may have more of a preference for one learning style. Many communication interventions seek to work with non-verbal/written learning through pictures (e.g. social stories) or action (e.g. Makaton sign language). Although not an autism-specific thing, it is useful to be aware of your preferences for learning styles so that you can be engaged with your learning and communication.

Part three on behaviour, mental health, and support in a neurotypical world is to come shortly.

My hope in writing this, and in you considering the questions within the questionnaire is that you can better understand the uniqueness of how your autism affects you, and gain the language to better describe your autism to professionals and others in your life to create a more inclusive affirming world around you. If you would like to consider counselling for any of the issues raised within this article, please feel free to check out my profile and get in touch.

Special thanks to Sophie’s Proof Reading for copy editing, and Cat Abrams and Zak Martell for their feedback.