Accessible Spaces & Events

Many of these events are leaving disability off their “diversity statements” and they’re also failing to account for disabled people who might want to participate. We have a lot at stake in the coming years and we’re eager to join our fellow citizens. We’re also tired of repeatedly asking events to foreground accessibility, rather than treating it as an afterthought, or expecting us to come in and clean up their inaccessible mess.

Real inclusive organizing should at a minimum include: Incorporating disability into your values or action statements; having disabled people on the organizing committee or board; making accessibility a priority from day one; and listening to feedback from disabled people.

How to Make Your Social Justice Events Accessible to the Disability Community: A Checklist – Rooted in Rights

✊ Enable Dignity

👏🧷🎁 Stimpunks Presents

We occasionally help put on events for our community.

Collected below are resources and checklists we use to help make venues and events more accessible.

But first, let’s learn about perceptual worlds.

🫀🧠🌍 Perceptual Worlds

Understanding the sensing and perceptual world of autistic people is central to understanding autism.

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

Understanding the sensing and perceptual world of autistic people is central to understanding autism.

Everyone has eight sensing systems: the first five being the familiar sight, hearing, smell, touch and taste. These five give us information about the world outside our bodies. Three internal sensing systems give us information from inside our bodies – our vestibular system (coordinating movement with balance), proprioception (awareness of position and movement of the body) and interoception (knowing our internal state including feelings, temperature, pain, hunger and thirst). Although not all the external senses are equally affected by the physical environment, we consider them all – as they collectively add to the ‘sensory load’ that many autistic people often experience. Any sensory input needs to be processed and can reduce the capacity to manage and process other things.

As many autistic people process one thing at a time, sensory stimulation can stack up. As the brain’s highways become congested, there are repercussions throughout the entire neural network. This can lead to headaches, nausea and the fight and flight response, this is what causes many meltdowns and shutdowns.

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

One of the most important findings is that most autistic people have significant sensory differences, compared to most non-autistic people. Autistic brains take in vast amounts of information from the world, and many have considerable strengths, including the ability to detect changes that others miss, great dedication and honesty, and a deep sense of social justice. But, because so many have been placed in a world where they are overwhelmed by pattern, colour, sound, smell, texture and taste, those strengths have not had a chance to be shown. Instead, they are plunged into perpetual sensory crisis, leading to either a display of extreme behaviour – a meltdown, or to an extreme state of physical and communication withdrawal – a shutdown. If we add to this the misunderstandings from social communication with one another, it becomes easier to see how opportunities to improve autistic lives have been missed.

If we are serious about enabling thriving in autistic lives, we must be serious about the sensory needs of autistic people, in every setting. The benefits of this extend well beyond the autistic communities; what helps autistic people will often help everyone else as well.

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

“Patterns are a real problem for me. I get absorbed by them – they take all my focus and it’s really distressing. When I’m overloaded sound and visuals can become too intense. My ability to manage fluctuates depending on how overloaded I am. When I’m overloaded, I can’t manage visual clutter, things on mantelpieces and walls, open fires, pattered carpets or clocks ticking. These are all things that would seem fine on a good day but become too much.”

I have massive sensory sensitivity. Especially to light and sound. My sensitivity fluctuates depending on how overloaded I am. If I’m not overloaded, then I can tolerate a lot more.”

Supporting Autistic Flourishing at Home and Beyond – Alexis Quinn artwork – NDTi

I’m telling my story on behalf of the thousands of people with autism and / or learning disabilities who are inappropriately detained in hospitals

I don’t respond well in a hospital, so I was stimming and pacing.

Stimming feels good to me and counteracted the busy, chaotic sensory environment of the hospital.

Overloaded that day, I desperately needed my walk. The staff, as usual, were very busy. I didn’t want to disturb them, but I had to have someone let me out. There were three doors between me and the outside world.

“Unbroken: Learning to Live Beyond Diagnosis” by Alexis Quinn

The divergent ways in which we process the world around us can also leave us fatigued and sapped of energy, as autistic people have “higher perceptual capacity” than our neurotypical counterparts, meaning that we process greater volumes of information from our environment. Autistic people commonly use the concept of ‘spoon theory‘ to conceptualize this experience of having limited energy resources. Initially theorized in the context of chronic illness, spoon theory can be explained as every task and activity (enjoyable or otherwise) requiring a certain number of ‘spoons’. Most people start their day with such an abundance of spoons that they can do whatever they choose, and rarely run low. We autistic folk start with a limited number of spoons, and when those spoons run dangerously low, we need to step back, rest, engage in self-care, and wait for our spoons to replenish.

Doing More by Doing Less: Reducing Autistic Burnout | Psychology Today

Though autistic people live in the same physical world and deal with the same ‘raw material’, their perceptual world turns out to be strikingly different from that of non-autistic people.

Differences in perception lead to a different perceptual world that is inevitably interpreted differently. We have to be aware of these differences and help autistic individuals cope with painful sensitivities and develop their strengths (‘perceptual superabilities’) that are often unnoticed or ignored by non-autistic people.

The inability to filter foreground and background information can account for both strengths and weaknesses of autistic perception. On the one hand, autistic individuals seem to perceive more accurate information and a larger amount of it. On the other hand, this amount of unselected information cannot be processed simultaneously, and may lead to information overload. As Donna Williams describes it, autistic people seem to have no ‘sieves’ in their brains to select the information that is worth being attended to. This results in a paradoxical phenomenon: sensory information is received in infinite detail and holistically at the same time. This can be described as ‘gestalt perception’, that is, perception of the whole scene as a single entity with all the details perceived (not processed!) simultaneously. They may be aware of the information others miss, but the processing of ‘holistic situations’ can be overwhelming.

Thus, all features of autism (social interaction impairments, language and communication problems, cognitive functioning, repetitive behaviours, etc.) can be seen as rooted in sensory overload experienced by autistic individuals. Autistic individuals perceive, feel and remember too much. Faced with a bombarding, confusing, baffling and often painful environment, autistic infants withdraw into their own world by shutting down their sensory systems.

Sensory Perceptual Issues in Autism and Asperger Syndrome: Different Sensory Experiences – Different Perceptual Worlds

The interconnectedness between sensory input, emotions, energy level, ongoing task and how you manage everything you have to do alongside coping with sometimes overwhelming sensory input is an experience that many autistic people are familiar with. Understanding just how much the sensory world can impact how anxious you feel, how well you can communicate, how able to do a food shop or even just enter a space is an important piece of understanding to build up. Without this understanding, from the perspective of autistic people, many may not understand how all-consuming the sensory environment can be for some and for others it is a way of being able to interact that releases anxiety and tension. Interacting with the sensory world through sensory seeking behaviours is strongly associated with stimming (self-stimulatory behaviour that helps self-regulation) which is often a really positive (as long as no one is getting hurt) way of expression that can encompass happiness, anxiety, distress and so much more.

Autistic sensory experiences, in our own words — Sarah O’Brien

 I have written elsewhere about what I refer to as ‘the golden equation’ – which is:

Autism + environment = outcome.

Avoiding Anxiety in Autistic Children by Luke Beardon

🌈🤲 Quick Low Cost Things to Make a Difference for Autistic People

Our brains take in too much detail. We try very hard to avoid an overload of sensory or social situations. It’s not us being awkward; it’s a physical brain difference.

Welcoming and Including Autistic People in our Churches and Communities

Two Minutes to Spare? Just read this:

Quick Low Cost Things to Make a Difference for Autistic People.

Always ask us what may help. Our brains take in too much detail. We try very hard to avoid an overload of sensory or social situations. It’s not us being awkward; it’s a physical brain difference.

Welcoming and Including Autistic People in our Churches and Communities
  1. Check the lights in each room. Avoid fluorescent or compact-fluorescent bulbs, if you can, as they appear to flicker like a strobe light, to autistic eyesight. Also, try to avoid bright spotlights.
  2. Noise levels. If an event is going to have a lot of background noise and chatting, is there a quieter space to get to, if it is too much? Conversation can be impossible to hear in crowds. What about loud hand drier machines in the loos? Any alternatives like hand towels?
  3. The building. Do we know what it looks like, and what the layout is like? Is there information on a simple website, perhaps? Photos?
  4. The Order of service – really clear instructions for us e.g. where to sit, when to stand and sit, what to say at each point? Either write it down, or get someone to be with us to quietly say what to do, please. (This also helps those new to church).
  5. We are very literal, and our minds may see pictures, not words. Please try to say what you mean.
  6. Physical events e.g. shaking hands? Water being splashed onto people in a ceremony? We may find this physically painful, as many are hypersensitive. Please warn us what will happen, and avoid physical contact unless we offer first.
  7. Rest areasomewhere quiet to go if we need to, please. Or don’t worry if we wander outside for a while, where safe to do so.
  8. Socialising. Be aware we find it difficult and exhausting as we cannot ‘see’ or hear you that well, especially in a crowd. Our body language can be different to yours, and we may not make eye contact. Please don’t think we’re rude. Sitting next to us to chat, somewhere quieter, is easier than facing us. Telling us to ‘try harder’ to make friends is not helpful; research shows that it’s non-autistic people who tend to refuse our offer of friendship, because of misunderstandings and myths.
  9. Be Clear and Accurate. If you say you’ll do something, please do it. Those on the autistic spectrum will be anxious if you promise to help but don’t do so, or promise to phone at a certain time and don’t. Or if you use expressions like, “I’ll be back in five minutes” when you mean, “I’ll be back some time in the next half an hour”. If you need to change arrangements, please just let us know. It’s about trying to maintain brain temperature and function, not about being controlling.
  10. Support: Find a calm and sensible person who is ready to lend a little assistance if we need it.

Source: Welcoming and Including Autistic People in our Churches and Communities

🌈♿️🎪 How to Make Your Events Accessible to the Disability Community

We’re also tired of repeatedly asking events to foreground accessibility, rather than treating it as an afterthought, or expecting us to come in and clean up their inaccessible mess.

How to Make Your Social Justice Events Accessible to the Disability Community: A Checklist – Rooted in Rights

🕸 Website Accessibility

  • Use high contrast and consider using a tool to allow users to switch from dark-on-light to light-on-dark
  • Don’t use flashing animations
  • Use alt text
  • Don’t use images to present text information
  • Use skip navigation
  • Offer a magnifying tool
  • Caption and/or transcribe video and audio content
  • Use descriptive link text (“find pictures of cute animals here” rather than “here”), as screenreader users may jump through links and need to know where they lead
  • Include a website accessibility statement, like this one from Rooted in Rights’ parent organization, Disability Rights Washington
  • Include event accessibility information prominently, with a clear access plan and contact information

Need help? Start with WebAIM and Section 508.

Source: How to Make Your Social Justice Events Accessible to the Disability Community: A Checklist – Rooted in Rights

🚪 Creating an Access Plan

  • Vet your facilities
    • In buildings, look for: Ramps; accessible all gender restrooms; doorways of sufficient width for wheelchairs to enter; ample seating; reconfigurable spaces; bright, even light.
    • On march and parade routes, look for: Even, smooth surfaces; sufficient seating for rest breaks; accessible nearby parking; accessible all gender toilets in easy reach; accessible ground transport; cover in the event of rain.
  • Designate seating for disabled people in the front of the room or crowd and near the exits, marking space off so nondisabled attendees understand they should not sit there
  • Provide sign language interpretation for all events
  • Provide Communication Access Realtime Translation (CART), as not all people who have hearing loss or who are d/Deaf use sign language to communicate, and it can provide greater access for people with auditory processing disorders
  • Consider providing loaner wheelchairs or scooters, possibly through a third party vendor who can assume liability
  • Consider offering wheelchair-accessible shuttles
  • Designate a service animal relief area
  • Designate an access team who coordinate accessibility issues throughout planning and through to the end of the event, and provide them with readily recognizable markers like shirts, vests, or hats so they’re easy to find
  • Develop a scent policy — going scent-free will enhance accessibility
  • Consider designating a quiet space or room
  • Use a public address (PA) system
  • Ensure that anyone who is speaking, including audience members, use microphones
  • Consider audio assistance, like hearing loops, for people who have hearing loss and rely on assistive technologies such as hearing aids

Need help? This ADA checklist can be a great resource, as can this guide on designing ADA-compliant events; the Autistic Self Advocacy Network is a good place to start with more inclusive access policies.

Source: How to Make Your Social Justice Events Accessible to the Disability Community: A Checklist – Rooted in Rights

📕 Making Your Event Policies Disability-Friendly

  • Include disabled people in your leadership, organization, scheduled speakers and panelists, imagery, and documentation
  • Include disability in your anti-harassment, anti-discrimination, and diversity policies, recognizing disability as a social and political category
  • Assume disabled people are in the room, even if they aren’t evident, and that they are stakeholders in your event
  • Include a disability orientation for all volunteers and staff
  • Include a space on your registration form for people to express access needs
  • Document your accessibility policy and efforts and make them public
  • Have a framework in place for responding to criticism and feedback from the disability community
  • Be mindful of your language:
    •  Avoid words that use disability as an insult, like “crazy” or “hysterical”
    • Avoid phrases such as “wheelchair-bound” or “suffers from”
  • Pay disability consultants like you would other professionals who are providing services

Need help? Here are some examples of accessibility policies to draw upon: SXSWNOLOSENational Conference of State Legislatures website accessibility policy; and Convergence.

Source: How to Make Your Social Justice Events Accessible to the Disability Community: A Checklist – Rooted in Rights

🌏🏗 Universal Design

Accessible event planning includes four steps. These four steps are universal design, physical accessibility, sensory accessibility, and cognitive accessibility.

Holding Inclusive Events: A Guide to Accessible Event Planning

Accessible event planning includes four steps. These four steps are universal design, physical accessibility, sensory accessibility, and cognitive accessibility.

Here is what each of these steps means:

Holding Inclusive Events: A Guide to Accessible Event Planning
  • Universal design means everyone can go and take part at an event. Physical accessibility, sensory accessibility, and cognitive accessibility must happen for everyone to take part.
    • Physical Accessibility: The space has no problems for wheelchair users and people with vision disabilities
    • Sensory Accessibility: The event is safe for people with allergies. There are accommodations for people who are Blind, Deaf, or hard of hearing.
    • Cognitive Accessibility: Give clear information about the event. Provide all material in different formats and plain language. Let people know what to expect in advance.
  • Accept and deal with accessibility needs that are different from yours.

Source: Holding Inclusive Events: A Guide to Accessible Event Planning

🧱 Physical Accessibility

All physical space used for the event can be used by everybody. This includes hotels, elevators, and conference rooms.

Examples of physical accessibility include:

🚪 Doors/Entrances

  • Signs with braille that say the names of buildings, room numbers, and where accessible entrances and elevators are
  • Main entrances have wheelchair accessible ramps
  • Working entrance buttons for wheelchair users
  • Wide doors and hallways for wheelchair users
  • Clear paths in and around your venue for blind people and wheelchair users
  • Accessible elevators that work

📍 Surrounding Areas

  • No hills around your conference buildings and transportation
  • Check for curb ramps that accommodate both wheelchair users and people with vision disabilities (see image at right)
  • Restaurants nearby (no more than 5 minutes walking distance)
  • Weather: depending on your location, snow and ice during winter can prevent participants from attending your event. Try to schedule your events in the spring, summer, or early fall.

🪑 Seating

  • Wheelchair accessible activity tables with room for snacks, medications, and session materials
  • Chairs with high backs for people with balance issues
  • Everyone can see the front of the room
  • Accessible seating should be part of the room set up
  • Do not separate accessible seating from the group
  • Wheelchair accessible public bathrooms should be next to or near training session rooms

🛞 Transportation

  • Accessible transportation near the location (no more than five minutes walking)
  • Have a list of accessible transportation options
    • Bus
    • Taxis
    • Subway
    • Local non-emergency cabulance companies (businesses that offer wheelchair accessible transportation)

🏨 Overnight Lodging for Conferences

  • Rooms with ADA automatic door opener
  • Rooms with enough space for wheelchair users to move around comfortably
  • Bathrooms have roll-in showers with a bench
  • The beds are high enough for a hoyer lift but low enough for wheelchair users

Source: Holding Inclusive Events: A Guide to Accessible Event Planning

🎧 Sensory Accessibility

There are two types of sensory accessibility:

1. Hearing and visual aids are available (sometimes overlaps with cognitive accessibility)

2. A safe place for people with chemical and light allergies and/or sensitivities.

Examples of hearing, visual, and tactile (sense of touch) accommodations

  • Image descriptions for presentations and captioning for videos
  • Sound devices for hard-of-hearing attendees
  • Microphones
  • CART and ASL interpretation
  • Alternative formats: braille, digital, easy read (plain language with pictures), large print

Examples of accommodations for chemical and light sensitivities

  • Fragrance free policies
  • No flash photography policies
  • ASL applause (or “flapplause”) instead of clapping
  • Noise cancelling ear muffs
  • Sensory free rooms
  • Working air conditioning

Source: Holding Inclusive Events: A Guide to Accessible Event Planning

🧠 Cognitive Accessibility

Everyone who comes to the event knows what to expect. Everyone knows:

  1. What the event is about.
  2. The schedule.
  3. Where the event is.
  4. What accommodations are available.

Examples of cognitive accessibility include:

📆 Detailed Schedules

  • Make a schedule for your event available on your website or in emails.
  • Send schedules to people in advance of your event.
    • Conferences: send schedules that include airport arrival and departure times, training session names, speaker names, and breaks to participants and speakers at least a month in advance of your event. People who do not use email receive hard copy schedules.
    • One-day events: send a completed schedule/agenda no later than 2 weeks in advance.

ℹ️ Information Packets (for Overnight Conferences)

  • Accommodations form with a list of accommodations people can request
  • Include two types of event schedules: An event schedule and daily schedules (see appendix for example)
  • Include information about quiet spaces
  • Provide the name, email, and phone number of main contact person for the event
  • Provide a list of local medical equipment stores with rental fees
    (for commodes, hoyer lifts, and other types of equipment event organizers cannot reserve)
  • Add a brief note about expectations for support people
  • Note: information packets should be sent to confirmed participants 3 to 4 months before your conference.

🧠🎪 Cognitive Accessibility at the Venue

  • Use nametags for everyone.
  • Present sessions in different ways.(i.e. written and verbal instructions, visual aids such as photographs, drawings, and charts)
  • Schedule many breaks throughout the day. Do not schedule sessions that go beyond an hour and a half.
  • Allow people to move around to stim or pace.
  • Provide and explain color communication badges.
  • Make sure presentations are viewable from different angles.

Source: Holding Inclusive Events: A Guide to Accessible Event Planning

🫀🧠💥 Neuroception and Sensory Load

Before we proceed to the next accessibility checklist, let’s learn about neuroception and sensory load.

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.

The stereotypes of meltdowns and self-harm in autism come from the fact that we frequently have stress responses to things that others do not perceive as distressing. Because our unique safety needs are not widely understood, growing up with extensive trauma has become our default.

Because of our different bio-social responses to stimulus, autistic people have significant barriers to accessing safety.

Discovering a Trauma-Informed Positive Autistic Identity

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.

How to Use the Polyvagal Ladder. A set of graphics

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.

Neuroception and the 3 Part Brain

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.

Developing a standardised measure of psychological safety.

To have my needs met as an autistic person would have transformed my experience in hospital. The sensory input added to my emotional dysregulation. I couldn’t engage with all the therapy on offer because of the added distress. Small changes would have made a big difference.

Emily

Image credit: Sam Chown-Ahern

If someone is autistic, they should get a sensory assessment. It was so important for me to understand myself and how I regulate.

Charli

Image credit: Sam Chown-Ahern

Our non-compliance is not intended to be rebellious. We simply do not comply with things that harm us. But 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.

THINKING PERSON’S GUIDE TO AUTISM: On Hans Asperger, the Nazis, and Autism: A Conversation Across Neurologies

The picture shows a school classroom as I see it, as an autistic person.  A kaleidoscope of shape and blinding lighting, with vague outlines which are probably other students.  Deafening noise.  The stench of different smells.  The confusion of many voices, including some heard through walls from neighbouring halls and classes.  School uniform that feels like barbed wire on my skin.

In the chaos, a different voice which I have to try to listen to.  It’s so hard.  My brain doesn’t want to tune the rest of the noise out.  Apparently I’ve been asked something, but I miss it.  The voice gets more strident, the class turns to look at me.  The intense stares overwhelm me.  The person next to me jostles me and it feels like an electric shock on my skin.  Only six more hours of hell to go…. only six….

Some of our autistic pupils simply cannot do this alone, without ‘time out’ to recover from the pain and exhaustion during the school day.  Not for hour after hour of puzzling painful chaos.

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.

Ann’s Autism Blog: Autism, School, Exclusion. What’s fair?

What  schools need to do is to understand autism.  In understanding it, we can help to stop putting the children in pain and exhaustion.  It’s actually quite easy.  And quite cheap.

Make sure your school is getting really good autism training, from autistic experts and our allies.

Notice I said ‘autistic experts”…  People who can detect what’s happening in that environment, using similar sensory systems to the pupil.  People who can explain autistic language and culture.  Yes, there is a different autistic language, a different autistic culture.  In the same way as it’s important to respect the culture of children from different ethnicities, it’s important to know about, and respect, autistic culture and communication style also.

Ann’s Autism Blog: Autism, School, Exclusion. What’s fair?

Sometimes I need a mind/body break. I need to be alone, I need to be in my head, and I need to stim. I stim by flapping my arms and clapping my hands while pacing. Stimming is a necessary part of sensory regulation. Stimming 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 edges and rejoin you when I am able.

I’m Autistic. Here’s what I’d like you to know.

This scene is quite similar to how I experience an autism sensory overload. When sounds, lights, clothing or social interaction can become painful to me. When it goes on long enough it can create what is called a meltdown or activation of the “fight-flight-freeze-tend-befriend” (formerly known as “fight or flight”) response and activation of the HPA axis; a “there is a threat in the environment” adrenaline-cortisol surge.

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

Needless to say, the dining hall, as well as being busy, crowded and a source of multiple odours, was also very noisy, as trays were picked up and clattered back down, cutlery jangled, and metal serving dishes clanged against metal hot plates. Meanwhile, the children, squeezed into rows of tiny seats bolted on to collapsible dining tables, grew louder and louder to make themselves heard over the racket. Indeed, the lunch queue alone can be the place where sensory problems ‘can turn into a nightmare’ (Sainsbury 2009, p.99). Perhaps unsurprisingly, therefore, all of the child contributors to this book – Grace, James, Rose and Zack – identified noise and crowds as being the most difficult aspects of school from a sensory point of view.

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 differences 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), neurotypical 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

“Bright lights such as ceiling lights are unbearable and make me feel very stressed.”

SE007

“In a crowded place I need to put my hands over my ears. I feel sick and can’t focus on anything.”

SE027

“I’m easily startled by sound or touch, sounds physically hurt me.”

SE017

“Smelling a strong smell is like being tortured, time stops and I’m nearly sick.”

SE008

“I never go into supermarkets because of visual overload…”

SE048

“Going to grocery-store is the worst. The lights are always very bright and there are so many details to see. I cannot go in there without sunglasses and a baseball cap. Generally being outside when the sun is out is also hard. That is why I always have my sunglasses with me.”

SE032

“I am very sensitive to all noise, including electrics being on in the bedroom at night i.e., hum of electricity going to the alarm clock. I turn off everything possible and spend time in my quiet bedroom when life gets too noisy.”

SE029

“I seek comfort in small things (such as nice textures, I currently have a coin that I keep in my pocket to hold when I’m nervous) so that I can filter the sensory environment. It helps distract me from what is happening around me so that when I seek that input, I can avoid more intense or unpleasant inputs.”

SE018

“I can become overwhelmed in busy, crowded places. Often in these situations I will feel like everything around me is moving faster and feel a kind of disconnect (maybe even dissociation?) from it all.”

SE037

“Sunlight is overwhelming in the summer and I can’t stand being out for too long… I also can’t stand bright overhead lighting in shops and tend to leave as quickly as possible. Lower overhead lighting is worse and fluorescent is unbearable…”

SE029

“A busy visual field causes overload and causes agitation and stimming. I struggle to focus on specific components and take in the entire field, being aware of every movement.”

SE016

“With multiple conversations… my experience is similar to listening to a radio station that then blends into the other one, so you’re constantly hearing every other word of the radio station, until at some point the streams completely overlap, but somehow in complete clarity. This, along with all the loud environmental noise (which may seem like nothing to most people – air conditioning humming, projector buzzing, lights buzzing, plates clinking in a restaurant kitchen), can drive me into a shutdown. And then every sound is utterly overwhelming.”

SE040

“I have to check the texture of fabrics when I’m clothes shopping. Anything rough or crunchy I can’t wear. I also need soft and stretchy fabrics.”

SE038

“I don’t like unexpected touch from other people. I prefer firm touch to light touch.”

SE011

“I’m touch sensitive. I hate other people touching me. My skin crawls, I sweat excessively, and I feel nausea. Especially if it’s bare skin. Makes intimacy nigh on impossible.”

SE030

“I am very particular about tastes. I only like quite bland foods and can’t stand any kind of spice. I will find a food unbearably spicy that others say has no spice to it at all. I used to find fizzy drinks too intense when I was younger.”

SE011

“I have had to quit jobs and refuse assignments due to my being hyperreactive to scents… My aversion to strong, unpleasant scents is so strong that it triggers my gag reflex, can make me throw up, makes me cry, and makes me escape the environment. I have tried but have no control over it. Changing nappies for my kids was challenging. Usually my husband did it. If my kids vomited, the smell made me vomit.”

SE031

“There are numerous occasions where I was looking for an item which was in plain sight however I it took a long time to find it.”

SE003

“I can get lost in visual patterns. When I was little one of the churches, we sometimes attended had a patterned coving and I would spend the whole service visually following the infinite line that formed the pattern.”

SE010

“Music calms me down when I’m stressed. Tend to listen to the same song on repeat for hours at a time.”

SE022

“Fluffy textures calm me. I have a fluffy blanket in the car to help manage my anxiety on car journeys and one I carry in my bag to calm me on other occasions.”

SE016

“It is extremely difficult to provide me with enough, let alone too much, deep pressure. Sometimes I will ask my husband for a tight hug and even the tightest hug he can provide is insufficient to satisfy me. Often, I need him to lie on top of me to provide added pressure.”

SE046

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

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.

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

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.

brown human eye

Sight

Sound

close up photography of woman smelling pink rose

Smell and Taste

close up photo of a person s hand touching body of water

Touch

👁 Sight

green yellow brown and blue stained glass

“Light and colour can provide stimulation and joy – for instance, stained glass can be used for small windows receiving direct sunlight.”
Angela

Sight | Local Government Association

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 stimuliSuggested 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 lightGetting 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 curtainsBlackout 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 wallsConsider a matt finish.
Limited visibility between spacesIncreased visibility between spaces can ease transitions – transparent panels in doors.
Bright coloursSwap for neutral, natural and pastel colours.
Bright posters, murals and wall designsLimit this in small spaces and entrances. Involve people in choosing the detail of design if desired.
Patterns on floors, carpets and soft furnishingsPlain materials in neutral colours.

Source: Sight | Local Government Association

🦻 Sound

close up photography of gray stainless steel fan turned on surrounded by dark background

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’.

Sound | Local Government Association

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 stimuliSuggested 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 echoSoft 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 ceilingsWhere these are present soft furnishings and sound absorbing panels can help.
Electrical buzzingCan items be turned off or moved?
Forced air, heating or air conditioning hummingIs it possible to control this? Can it be turned off? Can it be serviced to reduce the noise?
Heating noisesIs it possible to control this? Servicing may reduce the noise volume.
Fan heaters or fan assisted radiatorsSwap 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 pipesAre 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 dryerConsider agreeing timings of use. Some people find this sound comforting and helpful to self- regulate.

Source: Sound | Local Government Association

👃 Smell and Taste

cup of coffee and blooming branch

Certain smells can really help to calm and soothe me. On the contrary other smells can make me feel quite unwell. For some autistic people the sense of smell can be so strong that it feels like you are being force fed.
Carly

Smell | Local Government Association

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 stimuliSuggested alternatives
Outside smellsThis can be very difficult to control, so may be an important consideration when choosing location.
Paint smellsUse 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 conditionersThis 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 dryWhere 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 smellsLimit use of perfumes and aftershave. Consider personal smells including smoke
Dining room / eating locationsMany autistic people prefer to eat alone. Are there choices for where to eat? Could there be?

Source: Smell | Local Government Association

👆 Touch

white and green throw pillows

Soft furnishings and furniture can have a positive impact on the soundscape and on the comfort in the room.

Touch | Local Government Association

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 stimuliSuggested alternatives
Carpets and rugsChange 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

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

“It’s Not Rocket Science” – NDTi

  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 masking 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 awareness 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 play, 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 purpose 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

🫀🧠👍 Bodymind Affirmations

Neurodivergent and disabled speakers, notably Lydia X. Z. Brown and Jonathan Mooney, preface their presentations with an access note and a bodymind affirmation. They encourage people, be it in an auditorium or a group video chat, to move around and get comfortable.

I believe we should all move in our space in whatever way is most comfortable for our bodyminds.

Please use this space as you need or prefer.

Sit in chairs or on the floor, pace, lie on the floor, rock, flap, spin, move around, come in and out of the room.

This is an invitation for you to consider what your bodymind needs to be as comfortable as possible in this moment.

This is an invitation to remind yourself to remember and to affirm that your bodymind has needs and that those needs deserve to be met, that your bodymind is valuable and worthy, that you deserve to be here, …, to belong.

Source: Against Ableism & White Supremacy: Disability Justice is Our Liberation – YouTube

I know that I myself could not sit still in a room like this for even 15 seconds. So if you are like me and you need to take a break during my presentation, that’s all good. You need to go to the back of the room and pace back and forth, I won’t be offended. You need to leave the room, it’s all good. I myself may wander off in the middle of my presentation, and you all will be accepting, inclusive, and accommodating of that for sure. (Laughter) But, hey, you know what, this is your time.

Source: Lab School Lecture Series – Jonathan Mooney – YouTube

We Stimpunks really like and appreciate these affirmations and need the access and understanding they offer, both online and in physical space. We bring our whole bodyminds — stims, senses, perceptual worlds, and all — to every learning experience.

☂️ Access Intimacy: That Elusive, Hard to Describe Feeling When Someone Else ‘Gets’ Your Access Needs

These pieces on access intimacy and forced intimacy by Mia Mingus very much resonate with our experience. Forced intimacy is the continuous submission to patient hood required to access the right to learn, work, and live differently. K-12 SpEd families, higher ed students, and workers needing accommodations regularly experience forced intimacy. Forced intimacy “chips away at your soul. Every box you tick, every sentence about your ‘impairment’ and ‘needs’ becomes part of the narrative of your identity.

Forced intimacy is a cornerstone of how ableism functions.” “Forced intimacy is the opposite of access intimacy.” “Access intimacy is that elusive, hard to describe feeling when someone else ‘gets’ your access needs.” That feeling is rare in the abundantly ableist medical and deficit models, though we have experienced it a few times, notably with neuropsychiatrists who noticed and met our sensory needs with a quiet, no-big-deal attitude. They understood that compassion and good user experience make for better data and better outcomes.

Our moments of access intimacy are accompanied by floods of relief. The usual mountain of anxiety, miscommunication, and empathy gaps need not be scaled. “Your body relaxes and opens up with someone when all your access needs are being met.

Our most profound moments of access intimacy are when we meet an educator or healthcare worker conversant in neurodiversity and the social model of disability and respectful of identity-first language.

Treating my identity not as a disorder, but as a difference, one that matters in helping me and understanding me, is powerful compassion that makes for access intimacy.

There are many ways to describe intimacy. For example, there’s physical intimacy, emotional intimacy, intellectual, political, familial or sexual intimacy. But, as a physically disabled woman, there is another kind of intimacy I have been struggling to name and describe, what I have been calling “access intimacy.”

I have begun using the term loosely and am still realizing different aspects of it. This is in no way a complete describing of it, instead, this is an initial naming and the beginnings of giving it shape. I am offering it as something that has been useful for me and I hope is useful to others to describe all different kinds of access, not just in relation to disability. I think Access, as a framework, is powerful for so many of our lives. Here, I am speaking from my own lived experience as a physically disabled person but I know access intimacy can also happen in many different ways for mamas and parents, women of color, queer and trans folks, etc… Anyone can experience access intimacy.

Access intimacy is that elusive, hard to describe feeling when someone else “gets” your access needs. The kind of eerie comfort that your disabled self feels with someone on a purely access level. Sometimes it can happen with complete strangers, disabled or not, or sometimes it can be built over years. It could also be the way your body relaxes and opens up with someone when all your access needs are being met. It is not dependent on someone having a political understanding of disability, ableism or access. Some of the people I have experienced the deepest access intimacy with (especially able bodied people) have had no education or exposure to a political understanding of disability.

Access intimacy is also the intimacy I feel with many other disabled and sick people who have an automatic understanding of access needs out of our shared similar lived experience of the many different ways ableism manifests in our lives. Together, we share a kind of access intimacy that is ground-level, with no need for explanations. Instantly, we can hold the weight, emotion, logistics, isolation, trauma, fear, anxiety and pain of access. I don’t have to justify and we are able to start from a place of steel vulnerability. It doesn’t mean that our access looks the same, or that we even know what each other’s access needs are. It has taken the form of long talks into the night upon our first meeting; knowing glances shared across a room or in a group of able bodied people; or the feeling of instant familiarity to be able to ask for help or support.

Source: Access Intimacy: The Missing Link | Leaving Evidence

Forced intimacy is a cornerstone of how ableism functions in an able bodied supremacist world. Disabled people are expected to “strip down” and “show all our cards” metaphorically in order to get the basic access we need in order to survive. We are the ones who must be vulnerable-whether we want to or not-about ourselves, our bodyminds and our abilities. Forced intimacy was one of the many ways I learned that consent does not exist for my disabled asian girl bodymind. People are allowed to ask me intrusive questions about my body, make me “prove” my disability or expect me to share with them every aspect of my accessibility needs. I learned how to simultaneously shrink myself and nonconsensually open myself up as a disabled girl of color every damn day.

Forced intimacy is the opposite of access intimacy. It feels exploitative, exhausting and at times violating. Because I am physically disabled and use a manual wheelchair, I often experience forced intimacy when able bodied people push my wheelchair without my consent or when I am in situations where I have to be pushed by people I do not feel safe with, know or who are actively harassing me while pushing me. This often happens when I am traveling and have to rely on strangers for my access needs. I cannot count the number of times a strange man has pushed my wheelchair in the airport, while saying offensive and gross comments to me. These are the moments where disability, race, gender, immigration, class, age and sexuality collide together at once, indistinguishable from one another.

The contradiction of having to survive in the oppressive world you are trying to change is always complicated and dehumanizing.

Sadly, in an ableist world, access and disability get stripped of their transformative powers and instead get distorted into “dependent,” “burden” and “tragic.” Forced intimacy is a byproduct of this and functions as a constant oppressive reminder of domination and control.

Source: Forced Intimacy: An Ableist Norm | Leaving Evidence

This is the story about a doctor and nurse I once had and how they “got it.”

“Getting it” isn’t necessarily something that you can define. It’s ineffable. It’s more of a feeling than a specific action. For me, it’s a connection that runs deeper than the diagnosis, the medical terminology, the treatments proposed. It’s a sense of being listened to and really heard. It’s feeling of being truly cared for. It’s a sense of empathy or at least a willingness to immerse oneself in my world as a patient, to feel and see what I face. When I think of my doctor and nurse who “got it”, I remember the sense of safety and calm they offered me and knowing that I would be okay. To each patient surely it may mean something different. But for me “getting it” gives me the ability as a patient to breathe, and perchance even to live.

Source: The Doctor and Nurse Who “Got It” | Health as a Human Right

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