“This work represents a meaningful paradigm, culture and power shift, incorporating the social model of disability and progressive thinking around autism and neurodiversity. This strategy flips the narrative from outdated, pathological and deficit-based theories of autism towards up to date, forward thinking about autism as a natural and valuable form of diversity.
Priority is being given to the strengths and lived experience of autistic people and to the view that autistic people are not broken, nor need 'fixing', but are the experts - the experts of our lives and of our own experience.
This emphasis on Autistic voice, on listening to autistic people and prioritising our views and expertise, offers true participation rather than tokenism and respects the rally call of the autistic and disability rights movements - "Nothing about us, without us."
Central to this cultural shift within the strategy is recognition of the research of leading autistic academics and their up to date and evidence based work with autistic people.
This includes monotropism, the autistic language hypothesis and double empathy. Milton’s work on double empathy underpins the work we will be doing in re-setting the narrative for autistic people. This theory highlights that autistic people do not lack empathy or emotions - a core belief in old, deficit-based thinking about autism.
Milton flips the narrative and argues instead that autistic people experience the world and express emotions differently to non-autistic people. This difference makes it difficult for non-autistic people to understand and to empathise with, autistic people , and vice-versa - so, it's a two-way street.
These differences of experience lead to an empathy divide and communication breakdown between autistic and non-autistic people. As autistic people are in the minority, we are blamed for this communication breakdown and our ways of being are stigmatised and suppressed.
The value of incorporating progressive theories about autism from autistic thinkers into our strategy is that they reframe the relationship between autistic and non-autistic communities, and enable innovate opportunities to tackle inequalities, build on autistic strengths and achieve positive outcomes.
Double empathy and the marginalisation of autistic perspectives and experiences mean that it has been especially important that autistic people are at the forefront of decision making about our lives.
There is often a lack of understanding of invisible disabilities and accessibility needs, which can be experienced as oppressive by neurodivergent people. Changing the lens on autism, will hopefully change understanding, culture and practices, and thus, the outcomes for autistic people, many of whom have previously been unheard and unseen. It’s exciting that through this work there is a commitment towards systemic change and 'doing things differently,' to improve the lives of autistic people.
I am passionate that the Brighton & Hove Adult Autism Strategy will promote a neurodiversity-affirming culture and practice approach that amplifies autistic voice, recognises autistic culture and celebrates autistic strengths .”
Alice Conroy, Autistic Co-Chair of Brighton & Hove Autism Partnership Board
“I'm immensely proud to live in a city with an active and engaged Autism Partnership Board that we can work in partnership with.
Over the next 5 years, whether feeling safe and empowered when out and about in their communities, or accessing mental and physical health support from the NHS for themselves or their carers, the Autism Strategy is the start of a new era for autistic people living in Brighton & Hove, and should serve as a national benchmark of how to create and deliver a strategy in close collaboration with the people who need it most.
We believe that the autistic population in Brighton & Hove is likely to be significantly higher than national averages due to our reputation as a city that celebrates diversity. We have long needed a coherent strategy to guide services for the many thousands of autistic people in the city.
Our understanding of the needs, motivations and differences of autistic people and between the autistic and non-autistic population has accelerated in recent years.
We need to respond to new evidence and understanding, and co-design and co-produce an equitable service according to the vital lived experience of our local autistic and otherwise neurodivergent populations.
The Autism Strategy before you is the result of a careful partnership and consultation between local communities, voluntary sector organisations, the NHS and Brighton & Hove City Council.”
Councillor Tristam Burden, Chair of Adult Social Care and Public Health Sub-Committee, Brighton & Hove City Council
Autism is a natural part of human diversity. Autistic people tend to communicate and experience the world in a different way to non-autistic people. Historically, autism has been considered a ‘disorder’ seen in terms of deficits in social interaction and communication.
However, this has been challenged by many autistic people and researchers who have argued for a neuro-affirmative approach that recognises autism as a different neurological style that is marginalised and stigmatised within a predominately non-autistic world (Leadbitter et al., 2021; Walker, 2021).
From a neuro-affirmative approach, autistic researchers have argued that the way autistic people experience the world is characterised by monotropism (Lawson, 2011; Murray, 2021). The theory of monotropism argues that autistic brains are pulled more strongly to a narrower attentional focus compared to non-autistic people.
This can mean that autistic people can have more intense experiences, miss things outside of their current area of attention and find it hard to shift their attention from one thing from another. Non-autistic people generally have polytropic brains where they can spread their attention amongst multiple things in a less intense way.
The theory of monotropism validates the experience of autistic people without pathologizing their differences.
Autistic people tend to have strong passions and their interests pull them in very strongly over time. All humans have things they are passionate about but what is generally different for autistic people is the intensity of their interests. It is important not to have stereotypical assumptions about what autistic people may be interested in.
Autistic inertia describes the tendency of autistic brains to resist changing states, stopping, starting or changing direction. This can make starting new tasks, being interrupted and changing plans challenging, however can also be associated with hyperfocus – the ability to intensely focus for long periods of time.
Everyone has 8 sensory systems.
The commonly known – sight, hearing, smell, touch and taste – give information outside our bodies.
However, there are also 3 internal sensing systems:
Every autistic person is different however, many are hypersensitive to external senses and hyposensitive to internal senses. It is much easier for autistic people to process one channel at a time and sensory over load can lead to exhaustion, meltdown or shutdown.
Many autistic people will engage in stimming (or self-stimulatory behaviour) and this can be repetitive movements and/or sounds such as hand flapping, rocking or twirling. Stimming can be for enjoyment, to express happiness, or to increase or reduce sensory input (Charlton et al., 2021). Acceptance of stimming can enable autistic people to communicate and support sensory and emotional regulation.
Autistic people argue that its damaging to discourage stimming and leads to them being less tuned into their bodies and needs. Interventions aimed at reducing stimming – such as applied behaviour analysis (ABA) – have been associated with long term negative mental health outcomes such as increased post traumatic stress symptoms (Kupferstein, 2018; Anderson, 2022).
Interventions to support autistic people whose stimming may cause harm to themselves or others need to be person-centred, trauma-informed and neuro-affirmative.
Autistic researchers have argued that social differences in autistic communication are linked to sensory differences and monotropism (Murray, 2018). The social norms of non-autistic communication include eye contact, small talk and indirect communication, for example, not saying directly what you mean. Being unable to process multiple channels of sensory input at one time can make processing the combination of speech, body language and eye contact involved in non-autistic communication very challenging.
Some autistic people without a learning disability may not use speech some or all of the time and will benefit from alternative communication methods.
These differences can lead to the perception that autistic people struggle with social communication. However, research suggests that non-autistic people struggle to understand the communication of autistic people (Sheppard, 2015; Edley et al., 2016). This has led to the theory of double empathy – that generally autistic people communicate most effectively with other autistic people, and non-autistic people communicate most effectively with other non-autistic people (Milton, 2012).
However, when autistic people communicate with non-autistic people they experience communication breakdown due to their different ways of experiencing the world.
Masking is when autistic people will consciously or unconsciously hide autistic characteristics or behaviours in order to fit in with a non-autistic world.
This may include: mimicking the behaviour of non-autistic people, hiding stimming or autistic passions, or developing complex social scripts in order to manage non-autistic communication.
Masking can be physically and mentally exhausting and research has suggested that masking has a negative impact on mental health (Cook et al., 2021) and can lead to an increase in suicidal behaviours (Cassidy et al., 2020).
High masking also increases the likelihood of later diagnosis.
The cumulative impact of masking, sensory overload and living in a world that is not adapted for autistic people can lead to autistic burnout (Raymaker et al., 2020).
As one autistic person in Raymaker and colleagues’ (2020:p137) research said: ‘‘Autistic burnout is a state of physical and mental fatigue, heightened stress, and diminished capacity to manage life skills, sensory input, and/or social interactions, which comes from years of being severely overtaxed by the strain of trying to live up to demands that are out of sync with our needs.’’
Many autistic people reported experiencing gaslighting or dismissal when they discussed their experiences of autistic burnout and reported that this exacerbates the negative impacts and led to feelings of social isolation (Raymaker et al., 2020).
Autistic people said that autistic burnout recovery is supported through:
Autistic people tell us that recovery from autistic burnout is often a prolonged and staged process.
PDA is commonly referred to as Pathological Demand Avoidance but a more neuro-affirmative reframing is ‘pervasive drive for autonomy’ (PDA Society, 2022). People with a PDA profile generally experience a fight, flight or freeze response as a result of demands (which are anything they perceive as a threat to their autonomy).
This could include self care tasks such as bathing or doing laundry, social expectations or being told what to do by others, for instance at work, home or school.
People with a PDA profile may want to do something but not be able to because their internal response to a perceived loss of autonomy is so intense. They may respond by avoiding demands and expectations, having intense emotional responses or using strategies to remain in control of a situation.
People with a PDA profile are also often innovative and independent thinkers and highly empathetic and intuitive.
Autistic people often experience other forms of neurodivergence such as:
Many autistic people also experience:
The language we use when we talk about people is very important and it communicates dignity and respect.
Autistic people do not all have the same preferences for what words should be used when talking about them. It is best practice to ask someone what language they want to be used when referring to them.
However, this guidance is currently considered best practice when talking about autistic communities as a whole.
The headings below show the correct term to use. The information under the heading shows the incorrect term and the reason why.
Do not use: People with Autism.
Not everyone agrees but increasingly autistic people do not like ‘person-first’ language. This is because they see autism as part of who they are and not separate from their personhood.
Do not use: ASD or Autism Spectrum Disorder or suffering from autism.
Autism Spectrum Disorder is still an official diagnosis, however, disorder and ‘suffering’ are considered negative and medicalised language. A neurodiverse approach equally values all types of brains.
Do not use: High or low functioning Asperger’s syndrome.
Some individuals may find terms such as ‘high functioning’ or ‘Asperger’s syndrome’ as meaningful ways to refer to themselves and this choice should be respected.
However, terminology such as ‘high-functioning’ is generally believed to be unhelpful and disrespectful by autistic people.
Describing someone as ‘high-functioning’ can minimise the areas where someone may mask or need support (Autistic Self Advocacy Network, 2021).
Aspergers’ is no longer given as a diagnosis and has associations with Nazi genocide (Czech, 2018).
Do not use: A neurodiverse individual.
The neurodiversity movement promotes equally valuing all human minds and neurotypes. This contrasts with the medical model which has historically considered autism as a ‘disorder’. You cannot be a neurodiverse individual because it’s not possible to be ‘a diverse individual’.
Neurodivergent means having a mind that functions in ways which diverges significantly from dominant societal standards of ‘normal’. Forms of neurodivergence include lifelong neurotypes such as autism, ADHD as well as acquired such as complex post traumatic stress disorder.
It is very challenging to find data that represents autistic people due to the challenges in accessing diagnosis.
The UK government estimates that 1.1% of the population are autistic (Brugha et al., 2012).
Using this statistic, we can estimate that there may be the following number of autistic people within Brighton & Hove.
| Year | 2020 | 2025 | 2030 | 2035 |
|---|---|---|---|---|
| Total population | 295,337 | 302,584 | 311,516 | 319,400 |
| Total population - children and young people | 51,940 | 52,682 | 52,347 | 52,550 |
| Total population – adults | 243,397 | 249,902 | 259,169 | 266,850 |
| Year | 2020 | 2025 | 2030 | 2035 |
|---|---|---|---|---|
| Total population | 3,250 | 3,330 | 3,430 | 3,510 |
| Total popluation - children and yound people | 570 | 580 | 580 | 580 |
| Total population - adults | 2,680 | 2,750 | 2,850 | 2,940 |
However, many consider the 1.1% statistic used by national government to be too low.
For example, English primary care data suggests that 3% of children aged 10 to 17 have an autism diagnosis without a learning disability (O’Niens et al., 2023). Older people much less likely to have a formal diagnosis and more than 90% of autistic people over the age of 50 may be undiagnosed (O’Neins et al., 2023).
There is the perception amongst local autistic people that there is likely to be significantly larger autistic community in Brighton & Hove. Research suggests that autistic people are significantly more likely to be LGBTQ+ (Weir et al., 2021) and many people may move to Brighton & Hove due to its reputation as a city that celebrates gender and sexual diversity.
This is reflected in the equality data for the autistic people who responded to our consultation survey (see Appendix 1).
Three in depth needs assessment are planned to take place between 2023 to 2026. These will explore the health and wellbeing, and ideally gather clearer data, of the following communities:
This strategy is aimed at improving the lives of autistic adults without a learning disability, their unpaid carers and members of their support network. This is so we do not duplicate the work of the Adult Learning Disability Strategy and the Special Educational Needs and Disability Strategy which focuses on the needs of children and young people.
Government guidance says that local areas need to plan how to improve services for autistic people (Department of Health, 2015). However, we hope that many of the outcomes in this strategy will have a positive impact on all neurodivergent people.
This strategy has been developed by Brighton & Hove Autism Partnership Board.
The Autism Partnership Board is a group including:
The Autism Partnership Board will work together to improve the lives of autistic people, unpaid carers and members of their support network in Brighton & Hove.
The Autism Partnership Board have developed this strategy through an approach of partnership and collaboration.
This is defined as:
The Autism Partnership Board agreed the topics that we wanted to find out about as part of exploring the experiences of autistic people, their unpaid carers and members of their support network. The Partnership Board agreed the questions that we would ask.
An online consultation survey was held on the Brighton & Hove City Council website for 4 weeks in May and June 2023. The survey was shared by local partner organisations and media.
213 people completed the online survey
These numbers do not add up to 100% as some people were in multiple categories. For example, autistic professionals or autistic unpaid carers. If the person answering the survey said they were an unpaid carer or a family member of an autistic person, they were asked additional questions about their experience.
The survey included a mixture of multiple-choice questions and questions where people could write about their views and experiences. People who answered the survey could choose which sections they wanted to answer.
The Autism Partnership Board agreed that we needed to recognise intersectionality.
Intersectionality is a concept for understanding how aspects of a person's identities combine to create different and multiple discrimination and privilege.
An intersectional perspective means we need to think about how autistic people may have different experiences depending on other parts of their identity. For example, their age, gender, race and ethnicity.
We worked with different local community groups and organisations to understand the experiences of the diverse local community of autistic people, their unpaid carers and members of their support network.
Trust for Developing Communities completed a report based on interviews with culturally and racially diverse autistic people and their family members.
Experiences included:
Possability People completed a report based on a focus group with autistic people who identify as disabled and have physical or mental health needs.
Experiences included:
Assert completed a report based on interviews, focus groups and their experience of working with autistic people without a learning disability. Assert also supported autistic people who could not access the online survey to share their views and experiences.
Experiences included:
Autistic adults reported when seeking support for mental health conditions (including but not limited to: anxiety; depression; eating disorders; substance and alcohol misuse; self-harm; suicidal ideation and plans; psychosis; paranoia and personality disorders) that they are often advised that these conditions are an expected result of being autistic, and/or that because they are autistic they cannot be supported by mental health services.
Due to the difficulties of accessing adapted and appropriate mental health support, many autistic people are admitted to mental health hospitals when this could have been prevented by earlier intervention and support.
Assert need to decline around 14% of their referrals as they are from professionals seeking specialist mental health support for autistic people experiencing significant crisis. Assert staff are not qualified mental health specialists and the organisation does not provide specialist mental health advice or services.
The Parent Carers’ Council (PaCC), Amaze and The Hangleton & Knoll Project (HKP) completed a report based on focus groups and interviews with parent carers of autistic people.
Experiences included:
We worked with the Ledward Centre LGBTQ+ Neurodiversity group and The Clare Project to better understand the needs of LGBTQ+ autistic people.
Experiences included:
Focus groups were held to explore the experience of autistic people who are also parents.
Experiences included:
Focus groups were held to explore the experiences of autistic women and/or autistic people assigned female at birth.
Experiences included:
An equality impact assessment has been completed for this strategy. This explores a more detailed analysis of how we can reduce discrimination experienced by the diverse community of autistic people, their unpaid carers and members of their support network. The equality data for the autistic people who completed the consultation can be found in Appendix 1.
Based on this consultation and engagement work, 6 key themes were agreed:
Multiple working groups were held for each key theme in July, August and September 2023. These groups were attended by autistic people, unpaid carers and family members and professionals from statutory and community organisations. In every working group the majority of attendees were autistic.
Working groups developed outcomes and actions for each key theme based on the consultation and engagement feedback. These outcomes and actions were then shared with key local decision makers and commissioners to ensure that they were achievable over the five years of the strategy.
Working groups for each key theme will continue over the timeline of the strategy and will prioritise and monitor outcomes and actions. Progress will be reported back to the Autism Partnership Board.
Current services that support autistic (and otherwise neurodivergent) adults and their unpaid carers in Brighton & Hove.
Brighton & Hove City Council:
Integrated health and social care services:
NHS Sussex Partnership Foundation Trust:
Community and voluntary sector organisations
Adult Social Care is part of Brighton & Hove City Council. Adult social care staff complete assessments with adults and unpaid carers who may have eligible needs under the Care Act 2014, Autistic adults may be eligible for care and support.
Depending on an individual’s personal situation this could include:
Adult social care staff also lead safeguarding enquiries for adults at risk of and/or experiencing abuse or neglect in accordance with the Care Act 2014.
The Supported Employment Team provide advice or support to autistic people to help them find or maintain work.
The Specialist Community Disability Service is an integrated team of social workers and clinical professionals such as psychologists, nurses, speech and language therapists and physiotherapists. The Specialist Community Disability service work with adults with a learning disability. They do not work with autistic adults without a learning disability.
The Assessment and Treatment Service provides support and treatment to adults with severe mental health issues. This is an integrated team including social workers, psychiatrists, mental health nurses and occupational therapists. The Assessment and Treatment service completes Care Act assessments and leads safeguarding enquiries for individuals under their service.
The Neuro-developmental service provides diagnostic assessments of autism, ADHD and Tourette’s Syndrome.
The Transforming Care Autism Team supports autistic people either at high risk of admission to a mental health/specialist hospital, or who are ready for discharge from hospital and need support. They are a small team including clinical psychologists, occupational therapists, speech and language therapists and therapy assistants. The Transforming Care Autism Team only work with individuals who have a Lead Practitioner with the Assessment and Treatment service.
There are a range of local community and voluntary sector organisations that work with autistic people and their unpaid carers.
Amaze is a charity that gives information, advice and support to families of children and young people with special educational needs and disabilities (SEND). Amaze supports families including young people with SEND up to the age of 25.
PaCC is the parent carer forum for Brighton & Hove, representing parent carers of children and young people with SEND age 0-25. They work in coproduction with services to improve the outcomes for families in the City.
Mascot is a parent led peer to peer support network for families who have an autistic child/children or young person in Brighton and Hove.
The Clare Project Neurodivergent drop-in is a monthly space where people who are autistic/neurodivergent and also trans, nonbinary, intersex, gender-variant or gender-questioning can come along to connect with each other, chat and find out more about local support services.
The Carers Centre provides emotional support, information, guidance and advocacy to a wide range of carers in Brighton & Hove. This includes a monthly support group for unpaid carers of people with a learning disability and/or autistic people.
Assert is a small, charitable organisation offering support to autistic adults (whether they have a diagnosis or not) across Brighton & Hove and the surrounding area. Assert offers support, including: benefits advice and support; short-term goal-oriented support sessions; in-person short courses; 1:1 short courses; signposting; social groups and activities - including a group for the parents; partners and carers of autistic adults. Assert staff are not qualified mental health specialists and the organisation does not provide specialist mental health advice or services.
The Recovery College offers free educational courses designed and delivered by people with lived experience of mental health challenges, together with clinical staff and other professionals. This includes an ‘understanding autism’ course delivered in partnership with staff from the local neurodevelopmental service.
The LGBTQ+ Neurodiversity meet up is a peer led meet up group for LGBTQ+ people who identify as neurodivergent or are questioning whether they are neurodivergent.
ADHD Aware is a charity based in Brighton that offers peer support groups for adults with ADHD, their partners and parents of children and young people with ADHD.
Impact Initiatives provided 1-1 issue based advocacy for autistic adults. They also facilitate a monthly self advocacy group for autistic adults connected to the Autism Partnership Board.
The Sussex Learning Disability and Autism Strategy 2021 to 2024 is based on achieving the following 3 objectives:
LeDeR is a service improvement programme for people with a learning disability and autistic people led by NHS Sussex.
LeDeR works to:
A Sussex wide programme is in place to deliver an integrated strategy to improve the neurodevelopmental pathway for local people including approaches to assessment, diagnosis and support for children, young people and adults who may be autistic, have ADHD and/or Tourette’s Syndrome. The outcomes and actions of the Brighton & Hove Autism Strategy complement and are aligned to the goals of this ongoing Sussex wide Neurodevelopmental review.
Autistic people have been identified as a priority group in the National Suicide Prevention strategy (Department of Health and Social Care, 2023) and this is reflected in Brighton & Hove Suicide Prevention Action Plan.
There are many potential links between the outcomes and actions of the Brighton & Hove SEND strategy and the Brighton & Hove Adult Learning Disability Strategy, particularly in areas such as accessible transport, improving interactions with the police and improving the transition between childrens’ and adult services. The Autism Partnership Board will seek opportunities to work with the SEND and Learning Disability Partnership boards in order to maximise impact.
Feedback from the survey consultation regarding jobs and volunteering will inform the development of the new City Employment and Skills Recovery Plan.
The Accessible City Strategy has been developed to put accessibility at the heart of how Brighton & Hove City Council designs and delivers services. In line with the Accessible City strategy, we use the language of ‘inclusive adjustments’ within this strategy to reflect the council’s commitment to go above and beyond minimum expectations of legal compliance with the Equality Act 2010.
The Health and Care Act 2022 introduced a requirement that service providers, regulated by the Care Quality Commission, must ensure their staff receive learning disability and autism training appropriate to their role. The Oliver McGowan Mandatory Training on Learning Disability and Autism is the standardised training that was developed for this purpose.
The National Autism Strategy 2021 to 2026 and the NHS long term plan support many of the outcomes and actions outlined in this strategy including: developing annual health checks for autistic people, ensuring all local healthcare providers are making reasonable adjustments for autistic people and increasing community support to ensure that less autistic people are admitted to hospital.
The Autism Strategy should be based on these values:
My needs will be met when:
There is a large autistic community in Brighton & Hove. This a real strength that we can celebrate as a city but there is a lot of work we need to do.
Unfortunately, many autistic people reported experiences of harassment from other members of the public and reported negative experiences of the police. Autistic people reported that the police had limited understanding of their communication differences, sensory needs, and the experience of meltdown and shutdown. They reported that stimming could be perceived as anti-social, violent or disruptive and could lead to arrest or restraint.
Autistic people can be more vulnerable to abuse (Person et al., 2022) and survey respondents wanted more support around identifying and leaving unhealthy relationships and friendships.
Many autistic people felt socially isolated. The Office for National Statistics (2022) says that only 29% of autistic people are in paid employment. Many autistic people told us that the cost-of-living crisis was having a significant impact on their wellbeing and ability to access community activities leading to further isolation. Brighton & Hove can also be very overwhelming to the senses with bright lights, noise and is particularly busy in the summer.
In your opinion, do autistic people feel safe in Brighton & Hove?
In your opinion, do the police understand the needs of autistic people?
In your opinion, are services for parents available and suitable for autistic parents?
My needs will be met when:
Autistic people want and need safe, stable living environments that meet their sensory needs. Unstable and inaccessible housing can have particularly detrimental impacts on autistic people due to sensory sensitivities and autistic needs for consistency, stability, and predictability (NDTI, 2020).
A safe and stable home is key in enabling autistic people to decompress from overwhelming sensory environments.
Housing in Brighton & Hove is very expensive. National policies around housing benefit are based on people under the age of 35 sharing with others. This is often not accessible for autistic people who need their own space.
This means that young autistic people are likely to stay living with family or guardians for longer. Relationships can often break down and the autistic person can need to move out of the local area and away from their support networks or become homeless. Research suggests that autistic people are more likely to be homeless and this is made worse by barriers to services (Stone, Cameron and Dowling, 2023).
Autistic people said that their sensory needs were not taken into account when trying to find a home and emergency, temporary and supported accommodation was often not accessible. Autistic people found it particularly difficult when there was conflict with neighbours and landlords and this led to a significant impact on their wellbeing.
In your opinion, can autistic people in Brighton and Hove access suitable and available housing that meets their needs?
In your opinion, do housing staff understand autism and the needs of autistic people?
In your opinion, is information about housing easily understood and accessible to autistic people?
My needs will be met when:
Mental health was seen as the most important area by those people who completed the consultation survey.
Autistic people reported that they were often told by NHS talking therapies and secondary mental health services that they were ‘too complex to work with’ or that their service does not work with autistic people. As a result, many autistic people were not able to access support with their mental health. Autistic adults without a learning disability are 9 times more likely to die by suicide (Autistica, 2021) and almost 80% of autistic adults experience mental health conditions (Autistica, 2019).
Autistic people have been identified as a priority group in the National Suicide Prevention strategy (Department of Health and Social Care, 2023) and this is reflected in Brighton and Hove Suicide Prevention Action Plan.
Autistic people who were supported by mental health services said that there was a lack of understanding and inflexibility around inclusive adjustments. Mental health interventions that were not adjusted for autistic people were experienced as ineffective or harmful.
There were significant issues with accessing crisis services. These included needing to be able to use the phone to access support, different clinicians, the inaccessibility of Accident and Emergency and risk assessments not taking into account how autistic people may present differently when in crisis. It is particularly important to consider how to reduce barriers for mental health services for trans autistic people.
Autistic women and/or people assigned female at birth are likely to be misdiagnosed with mental health conditions, such as personality disorders (McCrossin, 2022), and report that treatments for misdiagnosed conditions can be harmful and can be the cause of further mental health issues.
In your opinion, are mental health services suitable and available for autistic people?
Is support accessible for autistic people when they are having a mental health crisis?
In your opinion, do staff who work for mental health services understand autism and the needs of autistic people?
My needs will be met when:
I can access different models of mental health support that are adapted to meet my needs as an autistic person and prevent me from experiencing a mental health crisis. As a result, fewer autistic people are admitted to mental health hospitals.
Some autistic people said they were supported well by their doctor, but experiences were very inconsistent particularly in relation to GP surgeries making inclusive adjustments. Clinical environments can be very inaccessible due to short appointments, bright lights, noisy waiting rooms and not knowing how long you may need to wait for an appointment.
The local accident and emergency department and inpatient environments were perceived to be hostile and extremely inaccessible.
There are other significant barriers to autistic people accessing physical health services.
These include:
Accessing healthcare in these circumstances can be very stressful. Autistic people said that when they communicated frustration at inclusive adjustments not being made, they were perceived as being ‘difficult’ and trust and communication can break down.
If autistic people were able to access an appointment, they reported it can often be very difficult to be listened to and believed by health staff. This was especially true for women and/or people assigned female at birth, trans people and those from Black and racially minoritised communities.
Autistic people said that there was a lack of understanding of how being autistic, masking and differences in interoception might impact your experience of physical health, tests and interventions. There was a limited understanding of how autistic people experience autistic burnout, pain, medication and hormonal changes including menopause.
Due to these negative experiences many autistic people said that they did not feel comfortable seeking medical help when they really needed it.
In your opinion, do staff at your local doctor’s or GP surgery understand what autistic people need to use their service?
In your opinion, do staff at the hospital or specialist clinics understand what autistic people need to use their service?
In your opinion, are autistic people easily able to get the help they need from physical health services and staff?
My needs will be met when:
There were significant barriers in the first steps of accessing a diagnosis and autistic people said many GPs were dismissive and discouraged them from seeking a diagnosis. This was particularly the experience of women and/or people assigned female at birth, trans people, and people from culturally and ethnically diverse communities.
Most autistic people had very positive feedback about the staff at the local Neurodevelopmental service. However, long waiting lists for assessment were very challenging and had a significant impact on wellbeing.
Not all autistic people want to seek an autism diagnosis, particularly trans people who are concerned it will impact on their ability to access gender-affirming healthcare. However, for many, understanding themselves as autistic and was crucial in terms of their identity, self-esteem, sense of community, understanding of life history and ability to access appropriate services.
Many in the autistic community have also argued that access to diagnosis is key in reducing the rates of autistic people who die by suicide (INSAR, 2021). Many respondents said there was significant potential in peer support and sharing experiences and learning from other autistic people.
Services were seen as working in isolation. Autistic people, unpaid carers and staff wanted services to work in more integrated and multi-disciplinary ways. It was argued that health and social working together would help people have a more holistic understanding of their needs and better access support.
In your opinion, do autistic people and their unpaid carers get the support they need whilst on the waiting list for an autism diagnosis?
In your opinion, do autistic people and their unpaid carers get the support they need from the Neurodevelopmental service after an autism diagnosis?
In your opinion, do autistic people and their unpaid carers have the support they need to understand the different stages of an autism diagnosis?
My needs will be met when:
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Autistic Self Advocacy Network, 2021, Functioning Labels Harm Autistic People - Autistic Self Advocacy Network.
Autistica, 2019, Autistica Action Briefing: Adult Mental Health.
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Equality data of autistic people who answered the consultation
135 autistic people completed the equality data at the end of the consultation and some chose not to answer some of the questions.
| Number of respondents | Percent | ||
|---|---|---|---|
| 18 to 24 | 5 | 3.8 | |
| 25 to 54 | 105 | 80.8 | |
| 55 or older | 20 | 15.4 | |
| Total | 130 | 100.0 | |
| Number of respondents | Percent | ||
|---|---|---|---|
| Female | 72 | 57.1 | |
| Male | 22 | 17.5 | |
| Non-Binary | 27 | 21.4 | |
| Other, please give details below | 5 | 4.0 | |
| Total | 126 | 100.0 | |
For people who are transgender, the sex they were assigned at birth is not the same as their own sense of their gender.
| Number of respondents | Percent | |
|---|---|---|
| Yes | 92 | 76.0 |
| No | 29 | 24.0 |
| Total | 121 | 100.0 |
| Number of respondents | Percent | |
|---|---|---|
| Any other Asian background | 1 | 0.8 |
| Black or Black British: Caribbean | 1 | 0.8 |
| Mixed: Asian and White | 1 | 0.8 |
| Mixed: Black African and White | 1 | 0.8 |
| Mixed: Black Caribbean and White | 4 | 3.4 |
| Any other mixed background | 2 | 1.7 |
| White: English / Welsh / Scottish / Northern Irish / British | 94 | 79.7 |
| White: Gypsy or Irish Traveller | 1 | 0.8 |
| Any other White background | 9 | 7.6 |
| Any other ethnic group | 4 | 3.4 |
| Total | 118 | 100.0 |
| Number of respondents | Valid percent | ||
|---|---|---|---|
| White UK/British | 94 | 79.7 | |
| BME | 24 | 20.3 | |
| Total | 118 | 100.0 | |
| Number of respondents | Valid percent | ||
|---|---|---|---|
| Bisexual | 26 | 24.1 | |
| Gay | 10 | 9.3 | |
| Heterosexual/’Straight’ | 41 | 38.0 | |
| Lesbian | 13 | 12.0 | |
| Other (please give detail below) | 18 | 16.7 | |
| Total | 108 | 100.0 | |
| Number of respondents | Percent | ||
|---|---|---|---|
| Heterosexual | 41 | 38.0 | |
| LGB+ | 67 | 62.0 | |
| Total | 108 | 100.0 | |
| Number of respondents | Valid percent | ||
|---|---|---|---|
| I have no particular religion | 64 | 54.2 | |
| Buddhist | 5 | 4.2 | |
| Christian | 13 | 11.0 | |
| Jewish | 4 | 3.4 | |
| Pagan | 4 | 3.4 | |
| Sikh | 1 | 0.8 | |
| Agnostic | 8 | 6.8 | |
| Atheist | 10 | 8.5 | |
| Other religion | 4 | 3.4 | |
| Other philosophical belief | 5 | 4.2 | |
| Total | 118 | 100.0 | |
| Number of respondents | Percent | ||
|---|---|---|---|
| Yes a little | 58 | 44.3 | |
| Yes a lot | 62 | 47.3 | |
| No | 11 | 8.4 | |
| Total | 131 | 100.0 | |
A carer provides unpaid support to family or friends who are ill, frail, disabled, or have mental health or substance misuse problems.
| Number of respondents | Percent | |
|---|---|---|
| Yes | 32 | 25.4 |
| No | 94 | 74.6 |
| Total | 126 | 100.0 |
| Number of respondents | Valid Percent | |
|---|---|---|
| Yes | 1 | 0.9 |
| No | 111 | 99.1 |
| Total | 112 | 100.0 |
Over the next 5 years we will deliver the following.
Over the next 5 years we will deliver the following.
Over the next 5 years we will deliver the following.
Over the next 5 years we will deliver the following.
Over the next 5 years we will deliver the following.
Over the next 5 years we will deliver the following.
Over the next 5 years we will deliver the following.
