Dr Catherine Manning – Written Evidence (AAC0130)

Introduction.

I am responding to the call for evidence as an autism researcher, on behalf of the Sensory Street project[1], and the Universities of Birmingham and Reading, where we conduct research into how to make spaces more inclusive for autistic people. I am submitting evidence as our research directly relates to The National Strategy for autistic children, young people and adults: 2021-2026, in terms of informing how businesses and services can become more autism-inclusive. Our research findings can therefore inform future government strategy.

2. a) What evidence is there about what autistic people need from the Government and public services and the most important policy issues for autistic people and their families/carers?

Our research[2] has identified that many public spaces and services are disabling for autistic people due to the sensory environment. The most commonly reported disabling environments for autistic people in our research were supermarkets, eateries (i.e., restaurants, cafes, pubs), highstreets and city/town centres, public transport, healthcare settings (i.e., doctor’s surgeries and hospitals), and retail shops and shopping centres. As a result, autistic people are commonly excluded from these spaces, with impacts on wellbeing and healthcare outcomes.[3] The lack of inclusivity of environments also presents barriers to employment[4] and education.[5] Therefore, making spaces more autism-inclusive remains a pressing policy issue for autistic people and their families/carers.

3. a) What new evidence does the Government need in order to make new policies and to plan services for autistic people?

Services and businesses have made steps to becoming more autism-inclusive (e.g., quiet hours in supermarkets, NHS England’s Sensory Friendly Wards[6]). However, these are seldom properly evaluated, so that it is not clear if these steps are effective[7]. We therefore recommend that the Government commissions independent research into the effectiveness of inclusion initiatives for autistic people.

4. a) In what ways have the Autism Act 2009 and successive Government autism strategies been successful or unsuccessful in improving support for autistic people?

The National Strategy 2021-2026 aimed for “many more organisations, businesses and public sector services to have become autism-inclusive, so that autistic people can engage in their communities, just like everyone else”, and suggested initiatives like the Autism Hour and Autism Friendly Award. While there are an increasing range of initiatives in place (e.g., ‘quiet hours’ in many large supermarkets; relaxed theatre performances, The Hidden Sunflower Scheme), many of the autistic participants in our research2 expressed that these initiatives often feel tokenistic, and do not go far enough. For example, quiet hours are infrequent and at unsuitable times for many, and Sunflower Lanyards are often misunderstood and do not always generate tailored support for autistic people in public spaces. As a result, autistic people commonly still find public spaces like supermarkets, eateries (i.e., restaurants, cafes, pubs), highstreets and city/town centres, public transport, healthcare settings (i.e., doctor’s surgeries and hospitals), and retail shops and shopping centres disabling, as shown in our research study published in 2023.2

4. b) What are the reasons for this?

Currently, initiatives are not sufficiently grounded in robust evidence7. From our engagement work with businesses in retail and leisure, it seems that many businesses do not know how best to make spaces more autism-inclusive, and/or are worried about the costs. Clear recommendations, tailored to different contexts, and supported by research evidence, with input from autistic people and their families, is essential. In our research2, which was co-produced with autistic people, we developed a set of 6 interlinked principles that determine whether a sensory environment is experienced as disabling or enabling (Figure 1). This representation highlights that a more holistic approach is needed to make spaces more autism-inclusive: it will require going beyond initiatives such as Autism Hours.

Figure 1. Graphical representation of the principles of sensory environments from MacLennan et al. (2023).2 This Figure highlights that there are many reasons why public spaces are often experienced as disabling by autistic people. Figure reproduced from https://osf.io/vtqr8 under a CC-BY 4.0 license.

9. a) What are the main problems with public understanding and acceptance of autistic people?

A lack of public understanding of autism and sensory processing needs contributes to many public spaces being experienced as disabling by autistic people2 (see Figure 1). Autistic participants in our research recalled experiences of misunderstanding and judgment about their sensory processing needs, and experiences of camouflaging their sensory challenges and coping behaviours (e.g., stimming, using fidget toys) to avoid judgment from others.2

The following are quotes from autistic participants from our research:

“… I made it clear that I was autistic, and I might need some help with getting around the

airport… I find it really hard sometimes to navigate and be able to understand where I am and it

just gives me a lot of anxiety, and they didn't understand the Sunflower [Lanyard] scheme

which I was quite surprised by… and they didn't, didn't help me at all and I’d asked for

assistance, and they didn't. I think being able to contact someone and they say, okay, we can

help, you know, being more consistent with help”. [autistic adult]

“I think neurotypical people don't realise that when we're trying not to show a sensory

environment is affecting us, because we don't want to be perceived to be “difficult” about asking

for the lights to be turned off or for the radio to be turned down, it really drains us so you've not

just got the sensory input but you have also then got all the effort going into the ‘no, no, no, I'm

fine, honest, I'm fine’ so that then means that we have an even shorter period of time we can

cope with the situation, so it's more likely to go wrong quicker’”. [autistic adult]

9. c) How can public understanding and acceptance of autistic people be improved?

Neurodiversity-affirming, autistic-led training for all businesses and services, with specialised training for ‘autism champions’, will improve public understanding and acceptance of autistic people, to move us beyond autism awareness.

10. a) What are the main problems with community inclusion for autistic people?

Many autistic people experience sensory processing differences which means that many public spaces are inaccessible and disabling (e.g., supermarkets, eateries (i.e., restaurants, cafes, pubs), highstreets and city/town centres, public transport, healthcare settings (i.e., doctor’s surgeries and hospitals), and retail shops and shopping centres)2. Our research2 identified six reasons why spaces are commonly disabling for autistic people (see Figure 1):

1)    The sensory environment (multiple layers of sensory input, especially if sustained and uncontrollable)

2)    Space constraints (crowding, and confined built environments)

3)    Unpredictability (uncertainty and lack of advance information)

4)    Misunderstanding, judgement and lack of support from others

5)    Lack of suitable adjustments (e.g., inflexible communication, pace pressures)

6)    Lack of space and time to recover and prepare.

10. b) What is going well?

In our research2, we heard that steps towards autism-inclusion, such as quiet hours at supermarkets, have been helpful for some participants. However, there was an overall feeling that these initiatives do not go far enough, and can appear tokenistic.

10. c) How can community inclusion for autistic people be improved?

Community inclusion for autistic people can be improved by taking a more holistic approach to inclusion, rather than considering initiatives like ‘quiet hours’ in isolation. Specifically, we recommend that initiatives for inclusion consider the six principles identified in Figure 1. For example:

1)    Minimising unnecessary sensory input (e.g., using unscented cleaning products; removing background music; reducing bright lights)

2)    Building spaces to be less confined, and to consider the flow of people around a space to avoid crowding

3)    Making spaces and services more predictable, by giving advance information (e.g., providing sensory maps and photos of the space, and communicating changes to layouts or processes in advance)

4)    Addressing misunderstanding and judgement by training staff in autism and sensory processing, and training specialist ‘autism champions’

5)    Ensuring that suitable adjustments are in place, such as allowing autistic people to communicate in a way that works for them

6)    Ensuring that autistic people have space and time to recover and prepare before entering a space – for example, having a ‘quiet area’ or out-of-the-way seating.

Supermarkets were identified to be one of the most commonly disabling environments in our research.2 Therefore, we have worked in partnership with autistic people to translate our research findings into practical recommendations for supermarkets to become more inclusive for autistic people[8], based on our research findings. As a result of engaging with supermarket representatives, we understand that cost implications are a concern for supermarkets. One recommendation in our guide is to expand the number of quiet hours in supermarkets, which leads to concerns about losing money, from a business perspective. Policy changes could help here, by mandating, for example, that supermarkets over a certain size have at least 5 quiet hours per week. Community inclusion initiatives need to be evaluated appropriately to ensure that they are effective7. 

13. a) What are the main problems for autistic people in accessing healthcare?

Healthcare settings including doctor’s surgeries and hospitals were commonly reported to be disabling by autistic adults in our research2, due to the sensory environment (e.g., bright lights, chemical smells, beeping sounds) and other non-sensory factors, including lack of understanding of staff, and unpredictability (see Figure 1). Some autistic people described that the uncertainty surrounding how long they would be in a healthcare setting, and anxiety about the medical appointment itself, contributed to their difficulties in these spaces:

“I think that's particularly true in places… where you're waiting for something,

you can't leave, you've got to wait… it becomes really overwhelming… this is what we see

when people are waiting to have… hospital appointments or something they're worried about,

you can't leave because you don't know when you will get that opportunity again, and you

want it, you want to be there and do the thing you're there for, but it's all piling on top and

creating that sort of, you know, maelstrom of sensory and anxiety all going on and and that's

where the problems then start to happen…” [autistic participant].

13. c) How can access to healthcare for autistic people be improved?

Based on our research-based principles2, access to healthcare for autistic people can be improved in the following ways:

1)    Minimising unnecessary sensory input (e.g., using unscented cleaning products; reducing lighting and improving lighting quality[9], designing spaces to minimise echoes and smells from other areas)

2)    Building spaces to be less confined, and managing numbers in waiting areas, to avoid crowding

3)    Making healthcare spaces, processes and procedures more predictable, by giving advance information (e.g., providing sensory maps and photos of the space, being clear about what medical procedures will involve)

4)    Addressing misunderstanding and judgement by ensuring that staff are trained on autistic people’s sensory processing needs and the effects of the environment

5)    Ensuring that suitable adjustments are in place, such as allowing autistic people to communicate in a way that works for them

6)    Ensuring that autistic people have space and time to recover and prepare before entering a space – for example, having a ‘quiet area’ outside of the main waiting area.

Many of these principles are already covered in existing guidance (e.g., NHS Sensory Friendly Wards6). However, the application of this guidance needs to be fully evaluated, to understand what works and what does not, and to ensure that autistic people truly feel included7. Having established whether this guidance is effective, more widespread adoption of these principles is needed.

30th May 2025