Neuroception and Sensory Load: Our Complex Sensory Experiences

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NeurodivergentNeurodivergent, sometimes abbreviated as ND, means having a mind that functions in ways which diverge significantly from the dominant societal standards of “normal.”NEURODIVERSITY: SOME BASIC TERMS & DEFINITIONS Neurodivergent is quite... More people are hypersensitive to mindsetThe marketing of mindsets was everywhere this year: “How to Develop Mindsets for Compassion and Caring in Students.” “Building A Tinkering Mindset In Young Students Through Making.” “6 Must-Haves for... More and environment due to a greater number of neuronal connections. They have both a higher risk for traumaIn expanding our definitions of trauma, we must make sure we see trauma as a structural issue, not just an individual one. Scholars now recognize what people from marginalized communities... More and a large capacity for sensing safety.

Neuroception and the 3 Part Brain

🫀🧠💥 Neuroception and Sensory Load

Before we proceed to the next accessibility checklist• Progress in human understanding has become increasingly complex and overwhelming.• Checklists help prevent serious but easily avoidable mistakes.• Checklists should be as short as possible, include all essential steps... More, let’s learn about neuroception and sensory load.

Sometimes I need a mind/body break. I need to be alone, I need to be in my head, and I need to stimSelf-stimulatory behavior, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or words, or the repetitive movement of objects Stimming - Wikipedia Autistic adults highlighted the importance of stimming as... More. I stim by flapping my arms and clapping my hands while pacing. Stimming is a necessary part of sensory regulation. StimmingSelf-stimulatory behavior, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or words, or the repetitive movement of objects Stimming - Wikipedia Autistic adults highlighted the importance of stimming as... More helps keep me below meltdown threshold. “Stimming is a natural behavior that can improve emotional regulation and prevent meltdowns in stressful situations.” “Let them stim! Some parents want help extinguishing their child’s self-stimulatory behaviors, whether it’s hand-flapping, toe-walking, or any number of other “stimmy” things autistic kids do. Most of this concern comes from a fear of social stigma. Self-stimulatory behaviors, however, are soothing, relaxing, and even joy-inducing. They help kids cope during times of stress or uncertainty. You can help your kids by encouraging parents to understand what these behaviors are and how they help.“

Please proceed with what you are doing when I take a sensory break. I will observe from the edgesFor me this space of radical openness is a margin a profound edge. Locating oneself there is difficult yet necessary. It is not a “safe” place. One is always at... More and rejoin you when I am able.

We’re Autistic. Here’s what We’d like you to know.

This makes seemingly benign noises a threat to my well-being and quite possibly real physical danger to my physiology. Benign noises become painful, and if left unchecked, enough to trigger a system reaction reserved for severe dangers. This is what days can become like on a regular basis for myself and many on the spectrum.

“Let me stick a hot poker in your hand, ok? Now I want you to remain calm.”

That is the real rub of the experience of sensory meltdowns.

Autistic Traits and Experiences in “Love and Mercy” The Brian Wilson Story – The Peripheral Minds of Autism

Indeed, the school environment can present autistic children with a multi-sensory onslaught in terms of sounds, smells, textures and visual impacts that constitutes both a distraction and a source of discomfort (Ashburner, Ziviani and Rodger 2008; Caldwell 2008). There was also clear evidence from my own study that sensory issues, and noise in particular, can be highly exclusionary factors for autistic children in schools.

Inclusive Education for Autistic Children: Helping Children and Young People to Learn and Flourish in the Classroom

This study investigates whether differencesOur friends and allies at Randimals have a saying, What makes us different, makes all the difference in the world.Randimals We agree. Randimals are made up of two different animals... More in sensory processing impact how autistic people experience the built environment, and whether there were patterns in the effects of different IEQ factors. Adults on the autism spectrum (n=83), neurotypicalThe existence of the word neurotypical makes it possible to have conversations about topics like neurotypical privilege. Neurotypical is a word that allows us to talk about members of the... More control adults (n=134), and adults with other conditions affecting sensory processing or who were closely related to someone on the autism spectrum (n=59) participated in an anonymous online survey. Participants were asked about their home and workplace, experiences of the general built environment, and general sensory sensitivity.

Autistic participants, who reported significantly higher sensory processing scores than Control participants, consistently reported higher levels of discomfort in both their home and workplace environments, feeling more overwhelming, stressed, and distracted, and less safe than the Control group in both environments. Though shopping malls, supermarkets, other retail and medical buildings are all essential buildings that people need to frequent to meet material needs and stay healthy, they all caused greater discomfort and distress for Autistic participants, who also avoided them more often. The odds of an Autistic participant avoiding buildings was 8.8 times greater than the Control group. Higher discomfort and distress reported by Autistic participants in office buildings may affects the low employment rates in this population.

People and People Noise were the IEQ factors that, across multiple environments, were rated as highest as a cause of discomfort and avoidance and had the largest difference between Autistic and Control participants, followed by Glare and Electric Light. Meanwhile, Temperature was rated equally highly by both groups, having a large effect but no difference between groups, with a similar trend seen in Air Quality and Air Movement.

Autistic people already struggle with social isolation, early mortality, and low employment rates, which are likely compounded by greater sensory stress from the built environment.

The Impact of Indoor Environment Quality on People on the Autism Spectrum

🤢 In Our Own Words: The Complex Sensory Experiences of Autistic Adults

Sensory experiences can be complex and although some sensory experiences can be enjoyable for individuals, other experiences can be very distressing (Elwin et al., 2012; Forsyth & Trevarrow, 2018). In particular, sensory hyperreactivity can greatly impact quality of life and has been found to correlate with clinically elevated levels of anxiety in both autistic children and adults (Carpenter et al., 2018; Green et al., 2012; Green & Ben-Sasson, 2010; Hwang et al., 2019; MacLennan et al., 2020). It is therefore unsurprising that aversive sensory environments have been suggested to be a barrier for autistic adults engaging in spaces, both public and occupational (Amos et al., 2019). Therefore, understanding the complexities of sensory experiences has important implications for autistic people’s physical and mental wellness, social inclusion, and future prospects.

PsyArXiv Preprints | In our own words: The complex sensory experiences of autistic adults

🎪 Sensory Environment Checklist

This checklist is intended to support improvements to the sensory environment.

Wherever possible, we encourage the involvement of autistic people in reviewing sensory environments. We believe that autistic people are uniquely qualified to review environments for themselves or for other autistic people as they live in an ‘alternate sensory reality’ (Grandin and Panek 2016) to the neurotypical population.

We offer some general suggestions that will help to reduce the sensory input. We hope that this will be helpful to lots of people. It can be used in shared houses as well as individual homes.

It is possible to use parts of this document but not others, depending on individual sensory needs. It is possible that not all parts will be relevant to everyone, please feel free to use the parts that are helpful.

We identify common sensory challenges as well as some suggested solutions.

We recommend considering all senses in every space – including entrances. Slow down, walk through, pause in each space, what do you notice?

We explain these elements in more detail in the report, please read this for further information. This checklist is intended as a practical summary to support those considering and reviewing environments.

Considering and meeting the sensory needs of autistic people in housing | Local Government Association

Below are our recommendations for small changes that can be made to an environment to improve the sensory experiences and wellbeing of autistic people.

👁 Sight

Visual stimulation can be a source of comfort and joy and can also lead to sensory overwhelm. The good news about this is that there is a solution – or rather, a range of solutions.

Our sight impacts our ability to process, interact and communicate with the world around us. Visual input is a key consideration for most of the people who contributed to Considering and meeting the sensory needs of autistic people in housing – it was one of the most dominant senses. Visual stimulation can be a source of comfort and joy and can also lead to sensory overwhelm. The good news about this is that there is a solution – or rather, a range of solutions.

Sight | Local Government Association

Challenging sensory stimuli	Suggested alternatives
Fluorescent lighting (flickers)	Tungsten (halogen, incandescent) or LED.
Dimmable lighting (flickers)	Not dimmable.
Direct lighting (uncovered bulbs)	Diffuse – using a shade. Or use lamps as an alternative source.
No natural light	Getting the lighting right where there is no natural light is important. This space should have limited use.
Windows obstructed (eg covered in non-transparent film)	Uncover windows where possible – even partial visibility helps.
No covering for windows, or transparent curtains	Blackout blinds or curtains that can be fully controlled, particularly in bedrooms. These can be fitted within the window or press studs or Velcro fastenings could be considered if needed.
Significant light changes between rooms or areas.	Consider additional blinds, lighting or windows within doors to reduce the change in lighting levels.
Strong shadows, moving shadows (eg from trees)	Additional lighting sources or diffused light can reduce shadows.
Reflective surfaces eg flooring or walls	Consider a matt finish.
Limited visibility between spaces	Increased visibility between spaces can ease transitions – transparent panels in doors.
Bright colours	Swap for neutral, natural and pastel colours.
Bright posters, murals and wall designs	Limit this in small spaces and entrances. Involve people in choosing the detail of design if desired.
Patterns on floors, carpets and soft furnishings	Plain materials in neutral colours.

Source: Sight | Local Government Association

🦻 Sound

Many neurotypical people can ‘block out’ noise, but some autistic people struggle to do this and hear every sound, including things that might not be audible to others such as outside noises like cars and aeroplanes.

Autistic people may also be able to hear sounds from inside the building – such as voices or noises from other rooms, or water in pipes and electricity in the walls. A decibel meter can be useful to support this work (now available as a phone app for those in need).

Sound | Local Government Association

Challenging sensory stimuli	Suggested alternatives
Outside noise – traffic, schools, airplanes (consider different times of day)	An important consideration in location as there are limited options to reduce this noise. Double glazing or acoustic glass may help.
Hard floors and walls, adds to noise (eg footsteps) and creates echo	Soft furnishings (carpets, curtains, furniture) absorb noise.Acoustic vinyl is often a better option than laminate where carpet isn’t appropriate. Sound absorbing panels could also be considered.
Curved and angled walls and ceilings – affects how sound moves in the space and can be disorientating for those with proprioceptive issues.	Straight walls and ‘flat’ ceilings.Soft furnishings and sound absorbing panels can reduce the impact of this where change is not possible.
High ceilings	Where these are present soft furnishings and sound absorbing panels can help.
Electrical buzzing	Can items be turned off or moved?

Forced air, heating or air conditioning humming	Is it possible to control this? Can it be turned off? Can it be serviced to reduce the noise?
Heating noises	Is it possible to control this? Servicing may reduce the noise volume.
Fan heaters or fan assisted radiators	Swap for panel radiators or underfloor heating. Large low temperature radiators may be safer than smaller higher temperature alternatives.
Water pipes including from toilets, appliances and pipes	Are they noisy in all areas or are there quieter spaces? Is it constant? Can it be controlled or managed?Limit use of spaces where it is particularly noisy.
Washing machine and clothes dryer	Consider agreeing timings of use. Some people find this sound comforting and helpful to self- regulate.

Source: Sound | Local Government Association

👃 Smell and Taste

Smell is pervasive – it is not possible to close our nostrils as we can close our eyes.

As many autistic people do not ‘habituate’, a smell will remain distinct and present, though neurotypical people might only notice a smell when they initially experience it, for example when entering a room.

Smell | Local Government Association

Challenging sensory stimuli	Suggested alternatives
Outside smells	This can be very difficult to control, so may be an important consideration when choosing location.
Paint smells	Use low odour paint. Consider timing of use.
Cleaning products – including air freshener, toilet cistern blocks, bleach, surface wipes, floor cleaner.	Use unscented. Involve the person in choosing the product where possible. Consistency may help. Many eco products are less smelly.
Laundry powder and conditioners	This is often scented, though some unscented varieties are available. Choice and consistency may help. Involve the person in choosing the product where possible. Limit changes to products used.
Washed clothing often smells stronger wet than when dry	Where will clothing be dried? Is there a separate area? Avoid drying clothes in bedrooms, and where possible also avoid drying clothes in living areas.
Household smells Consider how smells can be contained if areas are not separated.	Shut doors between rooms to limit smells drifting.
People smells	Limit use of perfumes and aftershave. Consider personal smells including smoke
Dining room / eating locations	Many autistic people prefer to eat alone. Are there choices for where to eat? Could there be?

Source: Smell | Local Government Association

👆 Touch

Temperature, texture and pressure (from touch as well as from atmospheric pressure) can all add to the sensory load.

Touch | Local Government Association

Challenging sensory stimuli	Suggested alternatives
Carpets and rugs	Change or remove these if needed. Try swapping for calmer colours and different textures.
Bedding – including low quality materials that can be ‘scratchy’	Choice of bedding. Soft, quiet materials. Many people feel more comfortable with 100 per cent cotton and a high thread count.

🧰 Adapting the Environment

1. The sensory environment
   Does the individual have a place to work where they feel comfortable? Are the ambient sounds, smells, and visuals tolerable? Is the lighting suitable? What about uncomfortable tactile stimuli? Has room layout been considered? Can ear defenders, computer screen filters or room dividers be used to create a more comfortable work environment? Do people working with them have information about what might be a problem – e.g. strong perfume – and do they understand why this matters?
2. The timely environment
   Has appropriate time been allowed for tasks? Allowing time to reflect upon tasks and address them accordingly will maximise success. Are time scales realistic? Have they been discussed? Are there explicit procedures if tasks are finished early or require additional time? Are requests to do things quickly kept to a minimum with the option to opt out of having to respond rapidly?
3. The explicit environment
   Is everything required made explicit? Are some tasks based upon implicit understanding which draw upon social norms or typical expectations? Is it clear which tasks should be prioritised over others? Avoid being patronising but checking that everything has been made explicit will reduce confusion later. Is there an explicit procedure for asking questions should they arise (e.g. a named person (a mentor) to ask in the first instance)?
4. The predictable environment
   How predictable is the environment? Is it possible to maximise predictability? Uncertainty can be anxiety provoking and a predictable environment can help in reducing this and enable greater task focus. Can regular meetings be set up? Is it possible that meetings may have to be cancelled in the future? Are
   “It’s Not Rocket Science” Page 124 procedures clear for when expected events (such as meetings) are cancelled, with a rationale for any alterations? Can resources and materials be sent in advance?
5. The social environment
   Does the workplace have social occasions and is the individual keen / reluctant to participate? Are there essential social occasions? Can group activities be adjusted to enable the staff member / student to take part – e.g. issuing a clear invitation to a specific, time-bound event. Do staff in the workplace recognise that a reluctance to engage socially does not imply dislike or rudeness? Would the person benefit from having a traffic-light system (e.g. green, yellow or red post-it notes) to signal their willingness to interact and / or current stress level?
   By thinking of ‘Workplace Adjustment STEPS’, you can consider the extent to which the environment is Sensory, Timely, Explicit, Predictable, and Social. Supporting the individual is on the next page.

Source: “It’s Not Rocket Science” – NDTi

🌈 Checklist for Autism-Friendly Environments

💥 Sensory

👁 Sight/visual

Some people who have autism can struggle with visual stimulus that can be offensive. This could be at best distracting causing a lack of focus and concentration. At worse this could cause a person to avoid environments completely. One case example was where a young lady on the spectrum could not speak at a conference because the carpet leading to the stage was too patterned and she could not walk on it.

• Have you considered if the colours in the environment are low arousal such as cream and pastel shades rather than vibrant Shades?
• Have you considered if the environment is too cluttered with furniture?
• “It has been suggested that people with Autism find it helpful if furniture is kept to the sides of a room and the central space is kept clear”(Nguyen, 2006)
• Does the environment have overly patterned shapes and surfaces that could be visually offensive?
• Have you also considered any curtains, blinds etc. that could be visually offensive?
• Have you considered whether any clothing or jewellery could be visually offensive?
• Have you considered if the environment has fluorescent or harsh lighting?
• Have you considered the effect of sunlight from windows or skylights, where the light is at different times of the day and reflective surfaces?

Source: Checklist for Autism-Friendly Environments

👃 Smell/olfactory

If you have ever walked through a perfume department in a store, then you may have experienced the effect on your senses. It can be offensive if you are hypersensitive to smell and can have significant physical responses such as headache and nausea. It is therefore important to minimize this distress.

• Have you considered the toxicity/acute smells of paint or wallpaper pastes used to decorate the environment?
• Have you considered the smells of cleaning materials used? E.g. polish, air fresheners, bleach
• Have you considered the smells of individuals (including pets) using the environment? (E.g. Deodorants, perfumes and aftershaves)
• Do ‘offensive’ smells drift around the building from room to room and have you considered how you might isolate them?

Source: Checklist for Autism-Friendly Environments

🦻 Hearing/auditory

Many people with autism seem to be hypersensitive to acute or high-pitched noise that they cannot control. This can feel like sharp pain and people either cover their ears with fingers or earphones/defenders. The other alternative is to hide the offensive sound by maskingMasking is exhausting. Utterly utterly draining. I’ve had people say to me many times over the years “But WHY are you so tired? What have you been doing?” and I’ve... More it with ‘white noise’. Sometimes the slightest inconspicuous sound can be irritating and distracting such as a ‘hum’ or a ‘ticking’

• Have you considered the general noise level in the environment?
• Have you considered hypersensitive hearing and looked at specific noises that may irritate such as clocks ticking, humming from lights, road noises or building/gardening work in the distance?
• Is there noise from flooring and can this be deadened if needed?
• Have you considered noise levels at different times of the day?
• Have you thought about when people are in the environment at the same and the possible mix of sensory needs?
• Have you any specific quiet and louder areas that people can choose from?
• Have you considered the pitch of noises as well as the level?

Source: Checklist for Autism-Friendly Environments

👣 Bodyawareness/proprioception

Some people with autism can have problems with perception and body awarenessAcceptance means training mental health service providers to look at autism and other disabilities as a part of a person's identity, rather than a problem that needs to be fixed. Acceptance... More and find navigating, particularly in unfamiliar settings difficult. Some have additional ‘movement’ challenges that they will struggle with.

• Is the environment free of unnecessary obstructions?
• Have rooms been made easier to navigate? E.g. using colours to distinguish floors, walls and furniture, as well as from room to room)
• Have you considered differing heights that individuals may need to navigate such as steps, stairs and kerbs?
• Have you considered adjustments for those people who have fine motor difficulties? (E.g. locks, cutlery, door handles)

Source: Checklist for Autism-Friendly Environments

👆 Touch/tactile

Some people with autism have sensory differences with regards to touch. This can be complicated with wanting and seeking touch to avoiding it completely. This touch can vary in pressure and to different parts of the body. Whilst some can prefer only light or no touch others will be calmed by firm pressure even being squeezed tightly into clothes or a corner of a room. Getting it wrong and being touched incorrectly can cause great stress and acute reactions.

• Are there sensory materials available for individuals to explore touch in the environment? E.g. sand, water playThere is nothing more human than play. Humans were designed to learn in play. In fact, nearly all mammals evolved this way.Play's Power At our learning space, we provide learners fresh... More, textiles
• Do you have a variety of materials and enough needed for each individual who seeks sensory stimulation?
• Are there opportunities for soft play/rough and tumble for individuals to access if appropriate and needed?
• Is there massage available to individuals, if needed? (Consider how often, by whom)
• Have you considered using a body map where individuals can indicate areas they like/dislike to be touched?
• If no body map can you determine where someone likes/dislikes to be touched?
• Are there small tight spaces where individuals can squeeze into if they wish to calm using firm pressure?
• Are there indicators to point out where hot surfaces are?
• Have you considered safety for people who are hypo sensitive to touch and how to manage this?

Source: Checklist for Autism-Friendly Environments

👅 Taste/Gustatory

People with autism can be ‘fussy eaters’? This may be unfair as it indicates that it is always a conscious choice. However, if your taste sensations are effected for example you are hypersensitive to flavours or under sensitive i.e. cannot taste any bland food then you are limited. For those who cannot communicate this such as people with a learning disability it may be important to understand this better.

• Do you have a wide range of foods available of different textures and temperatures?
• Are there options to intensify the flavour of foods by adding seasoning or spices?
• Is there clear guidance on what to do when someone is mouthing or eating inedible food?
• Have you considered whether people prefer any foodstuffs not to touch each other?
• Have you considered whether people prefer certain coloured foods or acute tastes?

Source: Checklist for Autism-Friendly Environments

⚖️ Balance/Vestibular

Certain movements that cause a self-soothing effect can help stress levels. Many children (and adults) with autism will use a trampoline to calm themselves. To restrict movement especially for people who are used to it can itself cause anxiety.

• Is the environment suitable for people who seek movement for example needing lots of space, soft play areas, swings or a trampoline?
• Are there opportunities for people to move from indoors to out?
• Have you considered how restrictions on movement effect individuals?
• Is the environment suitable for people who are oversensitive to movement for example using support equipment to helpwith balance?
• Are routines flexible to those who struggle with movement disorders for example enough time given for movement in the day?

Source: Checklist for Autism-Friendly Environments

💬 Communication Systems

In all walks of life effective communication is vital. For people on the autism spectrum this is perhaps essential. Clear unambiguous indicators in all forms can prevent stress. Like much of the general population there is a definite preference for sameness, for appropriate language and for an absence of sudden change.

• Does the environment have clear signs to indicate the use of each room? If appropriate, are there directional signs to each area?
• If appropriate, are there directional signs to each area?
• Have you considered to what extent are communication systems supported by the use of symbols, pictures, photos or objects?
• If rooms do not have one purposeSelf-determination Theory (SDT) is... — a model, a macro theory, of human motivation. It’s one of several models of human motivation, but it’s one that has been confirmed over and... More only can you indicate when it is used for different functions to avoid confusion?
• Are there photographs used to aid recognition of people (Staff/unfamiliar) if needed?
• Do you plan for changes e.g. to routines, staff leaving and building work?
• Have you considered the use of ‘literal’ meanings when designing your environment?

Source: Checklist for Autism-Friendly Environments

␛ Escape/Leave

This is particularly important when there is an unfriendly environment that is difficult to change. People on the autism spectrum are thought to suffer higher levels of stress than the general population due to the condition. It is important therefore to indicate to someone that they can leave a stressful situation and where they can go that is calmer.

• Is there a system to know when a person with autism needs to escape/leave from an environment?
• Is there a space / room to escape to?
• Is this room /space used solely for this purpose?
• Have you considered to what extent is this room/space low stimuli and safe?
• Is there an alternative to the escape room/space (E.g. the garden)

Source: Checklist for Autism-Friendly Environments

💭 Awareness

It is important that everyone in an organisation has some basic knowledge of autism and is up to date with their training needs. To be aware of the barriers to change can also be a catalyst for effective problem solving and solutions.

• Are you able to make changes to the Core sensory environment? (E.g. are there practical or financial restraints.)
• Have you considered to what extent is the environment primarily ‘safe’ for people with autism?
• Are you up to date with Autism Awareness training to support this checklist?
• Have you considered to what extent are you fully aware of each individuals’ sensory difficulties? (See the sensory profile devised by Bogdashina, 2016)
• Are you able to make changes to the sensory environment for example are there practical or financial restraints?
• Have you considered to what extent is the environment ‘safe’ for people with autism?
• Are you up to date with enhanced Autism training to support this checklist?

Source: Checklist for Autism-Friendly Environments

📞 Anything but the Phone!

Phones are very stressful. ‘Call if you have a problem’ is an inaccessible gauntlet for me and many others. If you work with neurodivergent kids, keep in mind that their parents are likely neurodivergent too. Most of the autistic parents “you encounter will not be diagnosed, and may indeed be oblivious to their own social and communication difficulties. By making your systems and processes more adapted to the needs of autistic mothers, you will be supporting not only undiagnosed mothers (and fathers) but other adults with additional needs.“

Considering that autism professionals must know how we autistics struggle with verbal communications, it is troubling how few willingly offer alternatives. My life, and my ability to advocate for my son, has been immeasurably improved through the use of email.

If you do one thing to improve your service, please provide your email address and show willing to communicate in this format. I can think of no reason to withhold email addresses, and am not sure what’s stopping you.

Source: THINKING PERSON’S GUIDE TO AUTISM: Could Do Better: To Professionals Working with Autistic Mothers of Autistic Children

When AMASE conducted a survey about the mental health of autistic people around Scotland, we found that many had been excluded by such simple things as practices insisting on telephone contact

Source: Fergus Murray: Why ‘nothing about us without us’ should be an Autism policy principle | CommonSpace

There’s a lot of misunderstanding about autistic people, and phone calls.

Many autistic people are not always able to speak, or may not be able to speak at all.

Unfortunately, not a lot of people know this.  So there can be major difficulties with people misunderstanding what’s happening.

Lots of autistic people can only sometimes use phones.  It’s a major barrier to healthcare, to job success, to getting basic services and basic human rights.  It’s great when companies and organisations know the law, want to work with us, and create different ways to interact.  Text.  Email.  Webchat.  Timed called with a known person.  Anything that works for us as individuals.   

Source: Ann’s Autism Blog: Autistic people and phone calls

Quantitative data indicated that email ranked highly when accessing services, seeking customer support and communicating about research. When communicating with family, friends, in employment and in education, both face-to-face and written modes (email or text message) were preferred. In the qualitative data, four main themes were identified: Not the Phone, Written Communication, Masking versus Autistic Communication and Avoiding Communication. There is a clear message that mode of communication can be either enabling or disabling for autistic people. A reliance on phone calls can create barriers to access, yet the option to adopt written forms of communication can improve accessibility. For known connections, the preference for face-to-face communication is dependent upon how close and accepting the relationship is.

When contacting unknown people or organisations, we found that generally email was preferred, and phone calls were very unpopular. However, for friends, family and people they felt comfortable with, they preferred both face-to-face and written forms of communication (e.g. email and text message).

Implications for practice, research or policy

The findings suggest that services should move away from a reliance on phone calls for communication. They should make sure that access to support is not dependent on the phone, and instead offer written options such as email and live messaging which are more accessible. Future research should investigate the impact of COVID-19 on autistic people’s communication preferences, as video calling has become much more commonly used and potentially combines benefits and challenges of other modes discussed in this article.

The existing evidence suggests that autistic people may prefer written modes of contact. For example, autistic adults perceived success of healthcare interactions is asso- ciated with their willingness to provide written mode options (Nicolaidis et al., 2015), and a survey on Internet use indicated that autistic people typically preferred email over face-to-face interaction (Benford & Standen, 2009). It seems that written communication may diminish some of the social interaction challenges autistic people experi- ence in face-to-face contexts. Benford and Standen (2009) interviewed autistic Internet users, who reported that writ- ten Internet-mediated communication provides more con- trol, thinking time, clarity and fewer sensory issues and streams of information that must be processed and inter- preted. Similarly, Gillespie-Lynch et al. (2014) reported autistic people to perceive computer-mediated communi- cation as beneficial, as it provides more control and increased comprehension in interactions. Consequently, there are reports of autistic adults utilising Internet- mediated modes of communication to foster and develop social connectiveness and relationships (Burke et al., 2010). This previous research has focused on Internet usage, yet there are a range of similar communication modes available. This study aims expand this work and explore the autistic community’s communication mode preferences more broadly, in range of different scenarios.

Source: ‘Anything but the phone!’: Communication mode preferences in the autism community – Philippa L Howard, Felicity Sedgewick, 2021

The sound of the phone ringing can immediately evoke anxiety for some people, especially for autistic people and people with anxiety. If the call hasn’t been agreed in advance, many of us find ourselves simply unable to answer it and let it go to voicemail. Why is this?

Source: Why Phone Calls Can be Incredibly Difficult for Autistic People and People with Anxiety

🚀 It’s Not Rocket Science

Ensure there is quiet space and outdoor space that people can access at any time.

 It’s Not Rocket Science: Considering and Meeting the Sensory Needs of Autistic Children and Young People 

Outside space. Many people find being outside and in natural very calming. Space to move away from other people, internal noises and distractions can be a good way to self-regulate. 

“I think things that are useful for autistic people would be beneficial for everyone. It would have stopped a lot of distress for a lot of people if they can take themselves away and calm down.”
Emily 

A sensory room or de-stress room. Easy access to a quiet space to de-stress can be an enormously helpful tool for people to be able to self-manage. Ideally, this room will be away from areas where there is heavy footfall or other outside noise. Many people find neutral spaces beneficial, with the option of lights and other sensory stimulus. 

“I think you should just be able to walk into the sensory room instead of asking staff and waiting for them to unlock it.”
Jamie 

It’s Not Rocket Science: Considering and meeting the sensory needs of autistic children and young people

Just listen. It’s not rocket science, just listen.

Daisy

Main Takeaways

•  Neurodivergent people are hypersensitive to mindset and environment due to a greater number of neuronal connections. They have both a higher risk for trauma and a large capacity for sensing safety.
• Hyper-plasticity predisposes us to have strong associative reactions to trauma. Our threat-response learning system is turned to high alert. The flip side of this hyper-plasticity is that we also adapt quickly to environments that are truly safe for our nervous system.
• Part of our neuroception is genetic. Neurodivergent people have heightened neuroception from birth or before birth.
• Danger cues that are very painful to a neurodivergent person may be neutral or pleasant to someone else.
• Because of our different bio-social responses to stimulus, autistic people have significant barriers to accessing safety.
• Psychological safety is increasingly recognised as central to mental health & wellbeing.
• The polyvagal theory offers a ‘Science of Safety’ which can help inform clinical practice to promote wellbeing, resilience & post-traumatic growth, whilst mitigating trauma.
• Since a great number of things that harm us are not harmful to most neurotypicals, we are viewed as untamed and in need of straightening up.
• We’ve turned classrooms into a hell for autism. Autistic children mostly could cope in the quieter schools of decades ago.  Not a hope now.
• Make sure your school is getting really good autism training, from autistic experts and our allies.
• Stimming is a necessary part of sensory regulation.
• The school environment can present autistic children with a multi-sensory onslaught in terms of sounds, smells, textures and visual impacts that constitutes both a distraction and a source of discomfort.
• Sensory issues, and noise in particular, can be highly exclusionary factors for autistic children in schools.
• Sensory hyperreactivity can greatly impact quality of life and has been found to correlate with clinically elevated levels of anxiety in both autistic children and adults.
• Aversive sensory environments have been suggested to be a barrier for autistic adults engaging in spaces, both public and occupational.
• Understanding the complexities of sensory experiences has important implications for autistic people’s physical and mental wellness, social inclusion, and future prospects
• Autistic people are uniquely qualified to review environments for ourselves or for other autistic people as we live in an ‘alternate sensory reality’.
• We encourage the involvement of autistic people in reviewing sensory environments.
• We recommend considering all senses in every space – including entrances. Slow down, walk through, pause in each space, what do you notice?
• Visual stimulation can be a source of comfort and joy and can also lead to sensory overwhelm.
• Many autistic people process one thing at a time and can’t ‘tune out’ inputs. Every noise will continue to be heard, will be a distraction and will take ‘bandwidth’.
• For some autistic people the sense of smell can be so strong that it feels like you are being force fed.
• Soft furnishings and furniture can have a positive impact on the soundscape and on the comfort in the room.
• Phones are very stressful. ‘Call if you have a problem’ is an inaccessible gauntlet for many.
• If you work with neurodivergent kids, keep in mind that their parents are likely neurodivergent too.
• Lots of autistic people can only sometimes use phones.  It’s a major barrier to healthcare, to job success, to getting basic services and basic human rights.
• There is a clear message that mode of communication can be either enabling or disabling for autistic people. A reliance on phone calls can create barriers to access, yet the option to adopt written forms of communication can improve accessibility.
• Services should move away from a reliance on phone calls for communication. They should make sure that access to support is not dependent on the phone, and instead offer written options such as email and live messaging which are more accessible.
• Ensure there is quiet space and outdoor space that people can access at any time.
• Just listen. It’s not rocket science, just listen.