Resources to improve the sensory environment for autistic people

Classification: Official
Publication reference: PR467_i

Sensory sensitivities and autism

Lifelong and persistent sensory sensitivities are a diagnostic characteristic of autism. Recent studies suggest prevalence in between 69% to 90% of autistic people.^[i],[ii]

There are three categories of autistic sensory sensitivities:

• hyper-sensitivity:
  • extreme over-reactivity to sensory input
• hypo-sensitivity:
  • extreme under-reactivity to sensory input
• sensory-seeking:
  • unusual interest in aspects of the sensory environment.

Sensory sensitivities are related to the development and maintenance of mental ill health^{[iii],[iv],[v]} and impairment in everyday functional skills^[vi] in autistic people of all ages. Yet the sensory environments in hospitals commonly evoke extreme aversive reactions from people with sensory sensitivities.

For example, noisy or incessant alerts, strong smells of cleaning agents or food, fluorescent lighting, or unpleasantly textured materials. Typically, neither staff nor patients have flexible, autonomous control over the sensory environment, which can compound issues.

As public transport, waiting areas and other clinical settings are more likely to be inaccessible to autistic people, they may reach crisis before receiving healthcare.^[vii] Inpatient settings without adaptations for autistic people’s sensory needs may risk autistic people being distracted or overwhelmed during therapy and/or excluded and segregated from the ward environment.^[viii],[ix]

Environments that are not ‘autism friendly’ can:

• impede the effectiveness, or hamper the delivery of, therapeutic intervention
• exacerbate poor mental health
• lead to the use of restrictive practices such as restraint, seclusion or segregation.

Policy context

The NHS Long Term Plan says we will support, listen to and help improve the health and wellbeing of autistic people, people with a learning disability and their families.

The Equality Act 2010 places a duty on service providers to make reasonable adjustments to ensure people with a learning disability and autistic people are not disadvantaged by a healthcare environment.

The Care Quality Commission’s (CQC) 2020 report, Out of sight – who cares? reviewed the use of restrictive practice in hospitals and concluded that many ward environments are chaotic and non-therapeutic, often triggering behaviours that necessitated the use of segregation and restraint.

Sensory-friendly ward principles

In 2020, the NHS National Quality Improvement Taskforce for children and young people’s mental health inpatient services commissioned a report from the National Development Team for Inclusion (NDTi), It’s not rocket science.

Informed by autistic people’s experiences and based on the experiences of children and young people who have used child and adolescent mental health services (CAMHS) inpatient environments, it makes recommendations on how inpatient CAMHS sensory environments can be improved.

There are 10 priority recommendations, and these have been picked up and built on by the national Autism team at NHS England.

They are now the foundation of sensory-friendly wards and were used in the spending review allocation process in 2021/22: 40 projects were funded to a value of £4.1 million to improve inpatient environments for autistic people.

1. Create a predictable environment.
   • Let people know what to expect, who to expect and when.
   • Offer accurate and timely information to create more certainty and support a feeling of safety.
2. Involve autistic people with relevant expertise in reviewing the sensory environment, in a meaningful way.
   • Every location is different and will have different things that need to be prioritised.
   • Autistic people have different sensory perceptions, so it is critical to involve people.
   • Listen and take action. Continue to review.
   • It can be beneficial to bring in external expertise, but it is also important to involve people using the space. Ask them what’s working and what needs to change.
3. Ensure all staff have training from autistic experts and allies that understand autism and sensory needs.
   • ‘All staff’ includes the multidisciplinary team caring for the person, healthcare staff, the ward team, facilities staff, educators, cooks, cleaners, and agency staff. Each of these roles impacts on an autistic person’s experience.
4. Assess everyone’s sensory need on admission and consider how sensory need will be accommodated and supported in care plans.
   • Support people to reduce problematic sensory inputs and manage these to support restraint reduction.
   • As part of care planning, support people to do the things that help them to self-regulate, including repeated movement (‘stimming’), access to hobbies and favourite possessions, quiet spaces, outdoor space, and access to items such as noise cancelling headphones, caps, blankets, etc.
5. Personalise risk management and decision making.
   • Support people to have choice and control.
   • Make decisions in relation to individuals, involving the person (and their family, as appropriate) wherever possible.
   • Avoid blanket bans (decisions or bans that affect everyone, rather than being decided on an individual basis).
6. Swap alarms for ‘silent’ alarms.
   • This will significantly reduce noise and escalation on the ward and reduce the frequency of distress caused by alarms for those with auditory sensitivity.
   • Staff need to be alerted – silent alarms will support this to happen without causing distress to other people.
7. Reduce noise and echo.
   • Ensure there is quiet space and outdoor space that people can access at any time.
   • Soft furnishings, gently closing doors, carpet, sound absorbing panels and acoustic vinyl can all help.
   • Consider background noise too (including roads, heating and cooling systems, extractor fans, voices, keys, TVs/radio, etc.)
   • Ensure there is a quiet space and outdoor spaces people can access at any time.
8. Consider the impact of lighting and support user control.
   • Hypersensitivity to lighting can be painful. High quality bulbs and component parts can reduce potential flicker and noise (which can be more likely if lights are dimmable).
   • Ensure that lights can be turned off easily, that low level lighting is available, and that lights are warm yellow and diffused (shaded).
9. Consider the impact of smells.
   • This includes smells from people, food, cleaning products, and laundry products.
   • Neutralise smells wherever possible. (closing doors, using unscented products, supporting people to ‘mask’ smells with preferred scents, or to use preferred products.)
10. Consider the impact of touch and texture.
    • Hypo and hyper sensitivities might mean that people may be more, or less, sensitive to physical contact.
    • This needs consideration in relation to potential physical restraint (best avoided), food, shower/bath/personal care and textures of materials including bedding, furniture, clothes and towels.

Sensory-friendly poster and film

We recognise the need to highlight the sensory needs of autistic people in a range of formats to increase accessibility. We have developed a poster for services to use to promote the sensory-friendly ward principles, which are also transferable across services more widely.

A printable version of this can be accessed from our website at our sensory friendly resource pack page.

We are also developing a film to promote key messages within this pack and to demonstrate the impact that sensory adaptations can have for autistic people; this is also accessible via our sensory friendly resource pack page.

A further film to support services in understanding the impact of sensory needs has been created in partnership across Contact, NDTi, the North West Parent Carer Forum and Alder Hey Children’s NHS Foundation Trust. This resource can be found here: https://youtu.be/FeM0ygckOyE

Workforce development offer

There is a broad workforce development offer in place, and developing further, which will support services to meet the needs of autistic people. These include, but are not limited to:

• The Health and Care Act 2022:
  • the Act introduced a requirement that all health and social care providers who carry out CQC-regulated activities must ensure their staff receive specific training on learning disability and autism appropriate to their role.
• National autism peer education offer:
  • work is underway to scope and develop a national autism peer education offer that will support parents and carers to access high quality learning materials across the country and provide regional training capabilities.
• Skills for care qualification:
  • level 5 commissioning for wellbeing – learning disability and autism; qualification intended for health and social care commissioners.
• Care, education and treatment review (CETR) training:
  • provision of training that supports CETRs. The training is for experts by experience, families and carers, clinical reviewers, chairs, commissioners, CETR co-ordinators, providers (inpatient and community), advocates.

You can find out more about the workforce development offer by contacting autism@hee.nhs.uk.

The Royal College of Psychiatrists is also working on training to address gaps in autism knowledge for psychiatrists in a range of settings, including mental health, older adults and forensic services.

Autism training in child and adolescent mental health services and adult mental health inpatient settings

During 2021/22 two training pilots were completed to improve the quality of support within NHS-commissioning inpatient settings: one in CAMHS inpatient settings, one in adult mental health inpatient settings.

The training used a ‘train the trainer’ approach and was based on Health Education England (HEE)/Department of Health and Social Care Core capability framework for supporting autistic people, and enabled people to train to Tier 3 level.

All training was co-produced and co-delivered with staff from mental health services and people with lived experience.

Overall, there were 545 people trained who have disseminated the training to their services and teams. Of these, 90 have lived experience, with the remaining trainers working within mental health settings. Just under half (240) were to support CAMHS inpatient settings, and 305 were to support adult mental health inpatient settings.

HEE commissioned an independent evaluation to see if the training was ‘fit for purpose’, and to find out what went well and what could be improved.

What went well?

• Overall, the training was well-received and met the needs and aspirations of those who attended.
• There was a strong desire to undertake the training and improve practice.
• The training was successfully delivered to people from a range of healthcare backgrounds across England.

What could be better?

• The amount of material could be reduced or spread over more, shorter days.
• Further support from senior managers within services would be helpful.
• We are going to increase the content which is about facilitating the training.

What did trainees say?

How to get involved

The inpatient training piloted in 2021/22 is now becoming ‘business as usual’; services can access this training by contacting autism@hee.nhs.uk.

We are also undertaking a pilot to extend this training into community services, again using a ‘train the trainer’ model. This training will be available to services from October 2022.

We are also expanding the training programme into youth justice, secure welfare and special residential schools.

Green Light Toolkit

The Green Light Toolkit is a guide to auditing and improving mental health services so that they are effective in supporting autistic people and people with learning disabilities. The audit is a self- audit undertaken by providers. 

A refresh of the Green Light Toolkit was commissioned in 2022 by the NHS England Autism team as part of the NHS Long Term Plan commitment to improve care for autistic people. The refresh has been co-produced and led by Peter Bates, at the National Development team for Inclusion.

The goal of the Green Light Toolkit is to support mental health services as they work on improving their response to:

• autistic people
• people with a learning disability
• autistic people who have a learning disability.

The Green Light Toolkit 2022 has been informed by three previous versions (2004, 2013, 2017).

The online 2022 edition has been comprehensively rewritten to pay more attention to the importance of creating an accessible environment for people with sensory differences, to offer a choice of survey questions and to create an online analysis option for teams to control themselves.

Local mental health services can choose one or more surveys from a range, for example:

• Easy Read Survey 2022
• Online Survey 2022
• Use of a ‘Survey Builder’ for mental health services to develop their own tool
• Autism Only Survey 2022 (we heard from some autistic people that they wanted a revised version of the Online Survey 2022 that just asked about the experience of autistic people.)

We are encouraging services to undertake an audit for themselves with the support of commissioners. Services can complete a form with a team code, which will provide a report summarising data from their team to facilitate a development plan.

You will also be able to read examples of ‘Stories of Change’, collated by the NDTi, which demonstrate the impact of the Green Light Toolkit.

Sensory app research

NHS England has funded a research project being undertaken by Dr Teresa Tavassoli at the University of Reading into development and evaluation of a sensory assessment app for use when a person is admitted to a mental health hospital. The aims of the project are to:

• develop an app-based sensory assessment for autistic adults
• increase knowledge among staff of sensory reactivity
• improve autistic adults’ inpatient experience.

The app identifies the sensory needs of autistic people; and for staff it provides educational content about specific sensory sensitivities. Importantly this project will benefit those individuals with few to no words, who otherwise have difficulties describing their sensory needs.

The app will reduce considerably the constraints of most existing assessments that require specialists and additional equipment It aims to provide the community with an easily accessible, free sensory measure.

The project has completed:

• scoping work and IRAS ethics approval
• initial testing
• engagement with professionals (including nursing, psychology, occupational therapy, autistic adults, family carers)
• feasibility study.

The first stage of the research has been successful with a high level of interest from mental health trusts and health commissioners and services wishing to be involved. The app has been developed and refined based on participants’ feedback. The research team are hoping to extend this research to further evaluate effectiveness of the app and to assess its usability with children. To find out more about the research, or to be involved please contact: Teresa Tavassoli at t.tavassoli@reading.ac.uk

References

[i] Baranek GT, David FJ, Poe MD, Stone WL, Watson LR (2006) Sensory Experiences Questionnaire: discriminating sensory features in young children with autism, developmental delays, and typical development. Journal of Child Psychology and Psychiatry, 47(6), 591-601.

[ii] Leekam SR, Nieto C, Libby SJ, et al (2007) Describing the sensory abnormalities of children and adults with autism. Journal of Autism and Developmental Disorders, 37(5), 894–910.

[iii] MacLennan K, Roach L, Tavassoli T (2020) The relationship between sensory reactivity differences and anxiety subtypes in autistic children. Autism Research.

[iv] Rossow, T, MacLennan K, Tavassoli T (2022) The Predictive Relationship Between Sensory Reactivity and Depressive Symptoms in Young Autistic Children with Few to No Words. Journal of Autism & Developmental Disorders.

[v] Serafini G, Gonda X, Canepa G, Pompili M, Rihmer Z, Amore M, Engel-Yeger B (2017) Extreme sensory processing patterns show a complex association with depression, and impulsivity, alexithymia, and hopelessness. Journal of Affective Disorders.

[vi] Boterberg S, Warreyn P (2016) Making sense of it all: The impact of sensory processing sensitivity on daily functioning of children. Personality and Individual Differences.

[vii] Doherty M, Neilson S, O’Sullivan J, et al (2022) Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study. BMJ Open.

[viii] Adams D, Young K (2020) A systematic review of the perceived barriers and facilitators to accessing psychological treatment for mental health problems in individuals on the autism Spectrum. Journal of Autism and Developmental Disorders.

[ix] Coleman-Fountain E, Buckley C, Beresford B (2020) Improving mental health in autistic young adults: A qualitative study exploring help-seeking barriers in UK primary care. The British journal of general practice: The journal of the Royal College of General Practitioners, 70(694), e356–e363.