Must-know guide – Autism

This guide looks at ways councils can provide support and information to improve the lives of autistic people and their families and how they can work towards inclusive places for autistic people through collaborative work with partners and local autistic people. It highlights the issues that autistic people may face before and from the point of diagnosis and in the longer term   It also considers some of the impacts of COVID-19 on autistic people that councils may need to address.

It is not possible to detail every aspect of autism that councillors may need to take on board, so the key resource section provides links to sources of further information.

Throughout the guide you will find ‘key questions’ that introduce you to key issues, together with suggestions for lines of enquiry that you can follow up on. These focus on issues currently facing autistic people and families and paid carers.

The guide has been developed by the National Development Team for Inclusion in conjunction with autistic people.

Twelve years after the Autism Act came into force autistic people still report that understanding of what autism is and how it impacts on individuals and families can still be improved for both professionals and the public. The 2019 All Party Parliamentary Autism Group (APPAG) identified where autism support had improved because of the Act but also identified many areas of service delivery that need to improve.

Primarily access to assessment and support, low level preventative support, access to information and advice, benefits employment and education support, housing and community inclusion. Reasonable adjustments together with good person-centred autism inclusive practice can often be the key principle in meeting such challenges.

This guide provides further detail on those gaps together with further detail on what service improvements and reasonable adjustments will help to improve autistic lives. Some best achieved by councils alone, with partner organisations, but many where small changes that don’t cost can make big improvements to people’s lives.

Some councillors will no doubt have a good picture of local gaps and challenges and there is information in this guide along with issue specific resources in the appendices that can help on that journey.

Councillors have a key role to play in improving places and the guide provides information on what is useful to know, what questions can be useful to ask and where to pose such questions.

Autism is a lifelong condition with current estimates being that ‘an estimated 700,000 people and approximately one percent of the population’ are autistic (DHSC. All Ages Autism Strategy 2021). Therefore, approximately one in a hundred of a council area’s population and of a council’s workforce will be autistic. Autism is increasingly seen within the concept of neurodiversity alongside conditions such as dyspraxia, ADHD, Tourette’s for example, with autistic people being neurodivergent.

It is a spectrum condition in that it can present in individuals in diverse ways so that each autistic person’s differences and needs will vary. The National Autistic Society (NAS) estimates that approximately half of autistic people will also have a learning disability and current diagnostic figures suggest that for every three males diagnosed as autistic there is one diagnosed female. However, there is now growing evidence indicating that autism presents differently in girls and women or that there may be systematic errors in the assessment tools. Additionally there is very little research on how autism presents in non-binary people and there may also be a potential underdiagnosis in older people and ethnic communities.

Public awareness is still developing and whilst a 2016 NAS Report as part of its Too Much Information campaign, identified that 96 per cent of the population are aware of autism, only 16 per cent of autistic people and their families feel that the public understand autism. Autistic people and families often feel stigmatised by those around them and wider society.

Evidence suggests that only 22 per cent of autistic people will be in employment (DHSC All Ages Autism Strategy p21), often part rather than full time, despite surveys indicating that many autistic people do want to work. Autistic people can also be subject to earlier mortality with higher-than-average levels of physical health needs and of anxiety, depression and suicide.

NAS characterises autism by three broad areas of difference which impact on the ways in which autistic people make sense of other people and the world around them:

• social communication and interaction
• sensory processing
• ‘restricted / repetitive’ behaviours.

Each area of difference is outlined below.

It is not automatic that all autistic people have the same differences in all these areas. Each autistic person will have their own set of differences across these areas, so a person-centred approach is best adopted.

Autistic people will often describe themselves as being ‘differently wired’ or as one autistic person has commented, ‘it feels like I’m navigate the world using a different operating system to most other people’.

Social Communication and Interaction

Autistic people will often have a combination of communication and interaction differences which can make socialising with other people and in groups an extremely fraught and sometimes overwhelming experience.

Many will have difficulty reading body language, facial expressions, unspoken social codes and expectations and in giving and receiving eye contact. Many may also take language highly literally leading to misunderstandings and taking longer to process information presented in standard ways.

How autistic people communicate can differ according to the context, with the environment around them being a strong factor. Some autistic people with verbal capacity can become nonverbal or resort to total withdrawal when overloaded by their environment and others’ expectations and prejudices.

It's also important to note that some autistic people will not communicate via spoken language, so signs of increasing discomfort can often be missed until approaching crisis levels.

Sensory processing  

Autistic people are likely to have heightened or dampened sensitivities across the five senses of touch, taste, sound, sight and smell. Some may recoil at the introduction of smells or sounds that other people may not notice, whilst others may be “sensory seeking,” such as having a need for pressure or for strong tasting foods.

There are also three other less known senses that can impact on autistic people. These senses are the:

• vestibular (which relates to balance)
• proprioceptive (which relates to a person’s body awareness)
• interoceptive (which relates to perception of a person’s sense of internal physical and psychological wellbeing).

An autistic person can have both heightened and dampened sensitives across these eight senses, being under sensitive to some sensory information yet over sensitive to other sensory information. This can result in a difficulty in processing and managing sensory input, which, when it becomes too much, can result in a withdrawal or outward facing behaviours that others can misinterpret as ‘challenging.’

Restrictive/repetitive or self-regulating behaviours

Autistic people feel that they live in an overwhelming world and may often display what are currently labelled ‘restricted and repetitive’ patterns of behaviour. These can present as a strong need for structure and routine where things must be done several times, in particular ways, often at specific times of day.

Some may have a need for the repetition of body movements for repeated activities such as the manipulation of everyday objects like pens, hair or clothing, bespoke objects such as fidget spinners or favoured objects according to their texture or smell. Others may find such behaviours odd or quirky and on occasion, ‘challenging.’

This is known as “stimming” and whilst appearing odd to others, autistic people will describe them as behaviours that they use to help manage unpredictable and chaotic situations and expectations. As such they are preventative, self-modulating and therefore positive for the person.

Co-existing conditions

Finally, many autistic people may also have one or more common co-existing conditions. These may include conditions such as constant raised levels of anxiety and depression, attention issues or demand avoidance which, along with sensory differences, are often not assessed and supported after their initial autism diagnosis.

Autism is not:

• a mental health illness
• curable
• automatically a learning disability
• a predominantly male condition
• a lack of emotion
• without its positives.

As of March 2022, autism is unique in that it is the only long-term condition with a condition specific Act of Parliament, the 2009 Autism Act.

The Act provides a structure for the improvement of the lives of autistic people and their families and has been supported by the issuing of Strategies and Statutory Guidance from the Department of Health (now DHSC) from 2010 onwards.

Until 2021, the most significant of these were Think Autism (Fulfilling and Rewarding Lives, the strategy for adults with autism in England: an update) in 2014 which provides a vision for autism and fifteen priority ambitions for autistic people across a wide range of issues expressed as a set of ‘I’ statements. Priority One being,

‘I want to be accepted as who I am within my local community. I want people and organisations in my community to have opportunities to raise their awareness and acceptance of autism.’

This was followed by the publication by DoH Statutory Guidance, ‘Statutory guidance for Local Authorities and NHS organisations to support implementation of the Adult Autism Strategy’ in 2015. This guidance is still in force and has a strong emphasis on local authorities and health working together setting out,

‘The expectations for local areas so they can continue to develop services and support in ways that reflect the assessed needs and priorities of their communities to secure implementation of the strategy.’

The 2009 Autism Act was also for adults only and the 2015 Statutory Guidance rectified this in part by providing guidance on what should be done to plan and provide for autistic children as they prepare for adulthood.

In 2021 DHSC in conjunction with the Department of Education and NHSE published the ‘The National Strategy for Autistic Children, Young People and Adults 2021-2026’ which updated the national strategy and for the first time made clear commitments relating to autistic people under 18.

A supporting ‘Autism Strategy Implementation Plan 2021-22’ was published detailing the first-year strategy priorities with likely implications for councils and other stakeholders in these main improvement areas; -

• local acceptance of autism
• access to education and transitions to adulthood
• employment opportunities
• heath and care inequalities
• support in the community and in patient care
• support within the criminal and youth justice systems.

DHSC, with government departmental partners, are currently working on a longer-term implementation plan in support of the 2021 All Ages Strategy.

Other key legislation

• Other legislation relevant to the needs of autistic people include the Care Act 2014, the Children and Families Act 2015 and the Special Educational Needs (SEND) reforms which are due in 2022.
• The Mental Health Act is also due to be reformed in 2022 to reflect concerns about their application to autistic people, particularly inappropriate hospital admissions and the use of medication and physical restraint.
• The 2019 NHS Long Term Plan contains commitments to reduce inequalities in provision to autistic people and which are supported by health led delivery plans detailing local action priorities.
• Whilst not autism specific, national and place focused COVID-19 recovery plans, together with the forthcoming Health and Social Care Bill may also have further implications for councils.

Autism self-assessment frameworks (SAF)

From 2012 onwards councils were asked to compile a Self-Assessment Framework template for their area answering a set of quantitative and qualitative questions laid out at national level by Public Health.

The SAF aimed to identify depth detail about local autistic populations and waiting lists for diagnosis for example, then a set of further questions asking localities to RAG rate their planning and provision across the areas previously identified in the statutory guidance.

These SAF Returns should be available from your local authority Autism Lead who usually sits within a commissioning team with national reports available here.

The process for reviewing progress against national strategy locally is being agreed by government, it is not yet known whether councils will be asked to report on autism strategy implementation progress via a new SAF or by alternative means.

Local autism strategies

Each area should have its own Autism Strategy which details priority actions for improving the lives of local autistic people and their families, which organisation is responsible for implementation, and the action timescales.

These priorities could be identified through analysis of the local SAF return, on health and social care data about local population needs, and on co-production work with autistic people and families.

Councils will independently or with area partners, publish a three-to-five-year autism strategy which will define how area needs will be met within the requirements of the national strategy. The establishment of Autism Partnership Boards (APB’s- see link Chapter 4), composed of service delivery partners and commissioners together with autistic and family representatives, can play a major role in co-producing that strategy.

Key question: does your council have an all-ages autism strategy produced and reviewed with autistic people?

Each area has specific demographics, local partnerships and service delivery models but there are common areas of challenges including: 

Access to diagnosis

National Institute for Clinical Health Excellence (NICE) for autism diagnosis states that it should take no longer than three months from initial referral to diagnosis. Diagnosis is usually undertaken by trained clinicians. Hardly any localities meet this target and waits of 18-24 months for diagnosis are not uncommon. This can then negatively impact on access to social care, education and housing support, a priority identified in the 2021 DHSC Autism Strategy Implementation Plan.

It can be the case that autistic people and families to receive minimal support whilst on the waiting list. Autistic people with presenting needs such as anxiety, demand avoidance or attention issues may also not those needs met whilst waiting for the autism diagnosis.

Assessment and support for co-existing conditions

Autistic people often report that whilst the diagnosis itself is a positive experience, the immediate follow up is less so, particularly at a time when the person and those nearest to them are undergoing a period of adaption to the formal diagnosis. This can mean individuals presenting to council and health services without a full picture of their needs.

Autistic people report that referral on for the assessment and support of co-existing conditions can be sporadic, leaving the picture incomplete for the person themselves and for those supporting them. Of particular importance is access to sensory assessment, especially given the link between sensory overload, so-called challenging behaviours and expensive placements.

Low level preventative support

Once diagnosed, many autistic people do not require access to higher tiered assessment and support such as supported living, residential care, crisis intervention and mental health inpatient facilities. Indeed, for many, these can be inappropriate and counterproductive. What autistic people and families do consistently note about their post diagnostic experience is the lack of simpler and often cheaper forms of support.

Access to information, signposting for advice, self-help groups for the autistic person and for parents, skills training for things like college and job application processes, social skills, managing risk and understanding behaviours, befriending and autistic mentors and peer support workers can also be of use and the case studies accompanying this guide provide examples of positive practice. See also Social Care Institute for Excellence.

Benefits, employment and education support

Whilst autistic people can be eligible for Department of Work and Pensions (DWP) Employment Support and Access to Work initiatives, they often report finding both the processes of applying for benefits such as PIP or Universal Credit and the physical environments or digital platforms extremely hard to navigate, so impacting negatively upon wellbeing.

Autistic people also comment on the lack of support to get into education and employment and once there, the lack of support to stay and to thrive within educational and work settings, sometimes resulting in a revolving door pattern that disrupts career progress, economic growth and access to opportunities to contribute to communities.

Councils are required to report the proportion of adults with a learning disability in paid employment as an Adult Social Care Outcome Framework indicator yet the numbers of autistic people with a learning disability remains low with limited access to the necessary specialist support.

Again, access to reasonable adjustments for autistic people which can often be low cost (see Manchester Guide) can make a positive contribution to individual lives.

Housing

Many autistic people can also struggle to access quality accommodation, especially inclusive housing where needs arising from their communication or sensory differences are considered. This can be detrimental to the autistic persons physical and mental wellbeing (or to that of partners, brothers, sisters or and parents where they live with family), leading to misunderstandings and potential disputes with neighbours and landlords. There may also be a higher prevalence of homelessness amongst autistic people.

Community acceptance and inclusion

A wider issue is how autistic people and families are perceived and treated in communities where stigma and a lack of acceptance is often made worse by the lack of autism friendly businesses, leisure and cultural facilities and transport.

Autism training led by autistic people, together with a focus on reasonable adjustments to environments, organisational processes and worker communication styles can all contribute to making communities more autism friendly.

Key question: Does your council require service providers to undergo autism training and to audit their environments, processes and communication styles to make them more autism friendly? Is the council doing this too?

The impact of COVID-19

Reports from the London School of Economics, the Covid Social Care Task Force and NAS indicate that assessment and support services for autistic people and families either reduced or were postponed during lockdown. Whilst many have since been restored it has not been possible to do some to the same levels or in the same ways as pre-COVID-19.

Coronavirus has exposed issues of increased discrimination, reduced access to assessment and support, digital access and skills issues and the impact of prolonged isolation on physical and mental wellbeing. Also, the potential impacts of long covid and its impact on autistic people who already struggle with physical and mental health inequalities, some of whom may not have been considered eligible for assessment and support services because of lack of awareness of the impact of being autistic.

Key question: What post COVID-19/lockdown checks have been triggered to check the wellbeing of all local autistic people?

Language

Autism terminology continues to change as research and autistic people’s voices develop. Clarity and precision of language in any interaction with autistic people is important as is using accepted terminology. If in doubt it is useful to ask the person.

Many (but not all) autistic people refer to themselves as being an autistic person rather than person or people ‘with autism.’ This is because they feel that autism is part of an individual’s identity and cannot be put away at any time as the ‘with’ terminology suggests. Both the National Autistic Society and DHSC now use autistic person or people in official communications.

Many autistic people would also object to the use of the terms ‘disorders’, ‘deficits’ ‘sufferer’, referring instead to ‘differences’  and point to the many strengths of being autistic. The use of ‘neurodivergent’ rather than ‘disabled’ is also being used more in autistic communities.

Diagnostic language also refers to several terms that many autistic people find unhelpful and potentially stigmatizing. Using descriptive terms such as ‘condition’ and ‘differences’ instead of ‘disorders’ can both get any interaction with autistic people and families off to a good start and reduce stigmatisation.

Similarly, using terms such as moderately or severely autistic or low and high functioning can be both insulting and misleading, especially when assessing individual and community needs. Important ‘invisible’ differences like sensory needs or struggles with structuring and starting tasks can be missed.

If it is assumed that people labelled as high functioning do not have any pressing needs, then some people may come back into the system at higher and more expensive levels because their lower-level needs have not been identified and met.

Reasonable adjustments

Autism comes with the protected characteristic of ‘disability’ for the purposes of the Equality Act and so autistic people should have access to reasonable adjustments in communities when using a service or as employees.

Good practice on reasonable adjustments can be implemented in practice by focusing on:

The What: The interactive processes of the services that your authority provides

Customer facing processes, whether they be assessment of need or the delivery of a service, can be a negative experience for autistic people and their families, especially given the higher levels of autistic differences, like literalness, attention issues, processing delays, demand avoidance and anxiety.

Breaking such processes into manageable chunks or over days rather than a lengthy process in one time slot may help. Sending out information about the process, how long it takes, and through what changes of task can also help, so that the autistic person knows what to expect. Ensure that people know that they can bring a supporter or advocate if needed.

Location

Environments are often not autism inclusive when taking the potential sensory differences of autistic people into consideration. Exposure to sounds, lights or smells, that other people may not find difficult, can negate even the best designed process and lead to raised anxiety levels for autistic people.

Building signage should be clear and logical, reception areas and rooms uncluttered with clear walkways for those with spatial or mobility differences, no distractive materials on walls or visible through glass screens or windows and the textures of such things as seats and carpets kept neutral for example.

Providing some photographs of the building, waiting areas and the room that an interaction will take place in will help, along with some text explanation to help navigation. Offering to meet in an alternate venue of the autistic persons choice where they will feel more sensorily comfortable should also be considered.

Provision of information to the criteria detailed in the national Accessible Information Standards together with an autism environmental audit will identify what is currently working in your councils’ buildings and what could be made more autism inclusive. See also NDTI’s It’s Not Rocket Science.

Who and how: The ways in which your councils staff interact with autistic people

The communication techniques used by council employees can be critical to ensuring positive interactions with autistic people. Language that avoids negative labelling should get people off to a good start, as will ensuring that the environment to be used is autism friendly.

Entering a discussion-based interaction to draw out needs rather than one that strictly follows a service script can help reduce anxieties and improve the quantity and quality of information. Providing verbal questions on a sheet of paper and giving the autistic person time to process any questions can help.

A calm and supportive approach with introductory chit-chat kept to reasonable levels and the use of short, logical and concise sentences are examples of simple adjustments that can have a positive impact.

Other factors to consider are whether council workers have neutral clothing, nothing too bright or extreme with vivid colours or patterns, avoiding bright or dangly jewellery and no or strictly neutral deodorants, perfumes or aftershaves.

Sitting at angles can help those who struggle with eye contact as will adjusting expectations on giving and receiving body language signals. Quality autism training delivered by autistic experts by experience as evidenced in the 2021 Oliver McGowan Mandatory Training trial will help officers develop these skills.

Key question: what autism training do staff at all levels receive and how much of it is developed and delivered by autistic people?

Councillors can help mirror good autism practice by striving to adopt the What: Where: Who good practice principles outlined in the previous sections in processes used with residents, council environments, and the personal interaction methods used by staff. Are your councillor surgeries autism friendly when measured against these good practice principles?

There is a common assumption that autism is the responsibility of council children’s and adults’ departments alone and it is worth noting that autism should be everybody’s business. Whilst social care will lead on many aspects it is important councillors can check whether all authority departments play a part in improving the lives of local autistic people as part of a corporate approach.

Talking to local groups of and for autistic people plus family groups can help form a rounded picture of the extent and quality of local autism support, as can engagement with the locality Autism Partnership Board. Councillors can also have a positive impact on staff and constituents by role modelling positive autism friendly principles and behaviours.

Local groups, together with the Autism Partnership Board, will often have events planned for Autism Acceptance Day and for Autism Week, which normally takes place in the first week of April. Councillors and their authorities can help change wider perceptions by supporting positive images of autism at such times and throughout the year.

Positive person-centred strengths-based practice

Many autistic people will report a positive experience of the actual clinical NHS autism assessment but then feeling ‘othered and lessened’ by the language used, for example the use of ‘disorders’ instead of differences, and by stigma resulting from other people’s misconceptions of autism.

Person centred approaches that identify the individuals’ differences, find out what works for them and then translate that knowledge into practice can result in a positive experience for the autistic person. Think Local Act Personal have some good success stories to share.

Whilst positive and enabling for some, diagnosis can be difficult for others, especially if there is little post-diagnosis information, advice and support to navigate them through the system and ease them into an autistic identity. Self-esteem can dip, and anxieties increase, so impacting on mental and physical wellbeing.

There is growing evidence that many autistic people have abilities and strengths such as loyalty, attention to detail or methodological and logical based approaches to problem solving. Identifying and building upon the strengths of autistic people from an early stage as detailed by Autistica can lead to productive contributions to business, public life and the arts.

Getting to know someone’s interests can also help build good quality interactions. Many autistic people will have areas of interest that they delve deeply into such as gaming, superheroes, Lego or music. These very often fall outside of typical gender stereotypes. Taking time to identify and build someone’s interests can result in positive outcomes.

Person centred strengths-based approaches and reasonable adjustments do not necessarily cost huge sums. Where wholescale changes to older buildings to make them autism friendly are deemed prohibitive right now, then at least people can be forewarned of, and so prepared for, possible sensory issues relating to that environment or one-off alternate venues agreed.

‘Small, well-informed changes can make big differences to people’s experiences. The Autism Dividend: Reaping the Rewards of Better Investment (National Autism Project 2017) identified a combined cost of ‘£32 billion per annum to the economy whilst the needs of autistic people remain unmet’ arguing that, ‘This is an unsustainable situation and must be addressed.’

Key question: do you have a sense of who the local groups of autistic people are and what support they receive to promote autism acceptance events in local communities?

The offer by councils and key partners to autistic people and families, will vary from area to area. Some areas commission and deliver autism services as an authority, some with neighbouring authorities and some with health bodies. Some services sit within mental health, some within learning disabilities or some may be autism specific. Some may be split by age zero to 18 and 18+ whilst others adopt an all-ages approach.

Some places may have a higher prevalence of autistic people because they are attracted to industries where their strengths can be best used. Areas with a strong technology base are one example.

Access to services may be difficult according to proximity to services, like rural areas with limited public transport or where personal needs may vary if people live in a deprived area or by age, ethnicity or gender.

Get to know in both operational and commissioning team autism leads and support them. Together with the council autism portfolio lead, request a copy of the area multi agency autism strategy and where that strategy is in partnership with other agencies, request a copy of the plan that details how the councils’ responsibilities within it will be implemented.

Details of your locality’s autism offer to children, adults and families should be on the authority’s website. Pro-active engagement with local autistic people and families will identify the authority’s past and present performance in how well your authority is meeting local needs and what gaps there may be in local assessment and support services.

In 2021 the DHSC commissioned Skills for Care to develop a guide to Commissioning Services for Autistic People Guide which was published in July 2021 in support of the All-Ages Autism Strategy together with a good practice framework detailing what services councils and partners should be considering.

Key question: what is your locality autism offer to autistic people and families?

This Must Know Autism Guide has outlined what autism is, potential ways in which being autistic can impact on individuals and families, and some of the key issues for councils to consider. It has identified the national and local policy contexts, the main sources of detail for locality responsibilities, provided information on good autism inclusive practice and on how councillors can check progress in their localities.

As the statistics in section one show, many autistic people can make contributions to their communities and many wish to do so, whether that is opportunities to become more active socially or leisure, culture, education and employment opportunities. Yet autistic people don’t always receive enough support to enable them to deal positively with the dominant processes, environments and communication styles of society.

Whilst there are autistic people who have been enabled to identify and build upon their strengths and so access and thrive, there are still autistic people whose community experience leads to reduced self-esteem. This is a personal cost to autistic people and their families but also leads to unnecessary costs met by local budgets and systems.

Inclusive autism practice can help reduce such pressures and many of the adjustments discussed in this Guide can be helpful to those who are neurodivergent in other ways.

Produced on behalf of the Local Government Association by Trevor Wright (autistic NDTI Associate) with Felicity Head and Rachel Turner (autistic NDTI experts by experience) together with Paul Gutherson, NDTI Development Lead, April 2022.

Local Government Association

NDTI: It’s Not Rocket Science

BASW Capability Statement – October 2019

Research Into Practice Autism Inclusive Practice Briefing 2019

NHS Long Term Plan 2019

Autism Act 10 Years On: APPGA 2019

DHSC All Ages Autism Strategy 2021

S4C Commissioning Guidance (including good practice pathway diagram) 2021

Core Capabilities Framework for Supporting Autistic People

Oliver McGowan Mandatory Training 2021

Covid Social Care Task Force Reports

Derbyshire Autism Alliance Covid Report

LSE Covid Report

National Autism Project

Autistic UK

Ambitious About Autism

National Autism Task Force

Autism Friendly Greater Manchester

Locality Autism Offer

NAS Left Stranded Covid Report

NDTI Autism and Housing

Autism and Mental Health

Accessible Information Standards

Derbyshire autism information and advice service

Leicester City Council: Every Voice Counts – post- diagnostic support

Greater Manchester Combined Authority: Coproducing and All-Age Autism Strategy

Plymouth City Council. Plymouth Autistic Employment Project

Cumbria County Council: Autism Champions

View the other councillor workbooks, covering topics such as finance, handling casework, community leadership, and stress management.