Introduction

Autism is a spectrum condition and affects people in different ways.  Like anyone, autistic people have a range of strengths and challenges, and every autistic person will have their own unique experiences of being autistic. Autism is currently recognised as a lifelong disability which may affect how people communicate and interact with world, this can include:

• Differences in processing, understanding and interpreting social communication and interactions.
• Preference for routines.
• Repetitive behaviour which may serve a variety of purposes known as “stimming”.
• Differences in sensory processing.
• Highly focused interests.

These differences can offer many benefits but for some autistic people it can be challenging to adapt to a world that is too often centred around neurotypical people’s needs. For some autistic people, who may live with other co-occurring conditions, having the right adjustments or support to live well is essential, particularly in relation to accessing education, employment, social, and health services. Some autistic people may have little or no need for additional support to live their lives.  Needs may also fluctuate over the course of a person’s life depending on the context and therefore it can be difficult to predict who may need additional support and when this support will be needed. Understanding a current medicalised approach and model to autism, needs to sit within a context of understanding neuro-affirmative practice, the philosophy and social movement, recognising the need to work towards ‘neurotype’ and respecting ‘autistic culture’ and the value of diversity.    

Differences in sensory processing is one area where an autistic person may experience the world very differently to someone who is neurotypical.  It is well understood that we all have 5 external senses (smell, taste, sound, sight and touch) but we also have 3 internal senses that affect how we feel, processing what our bodies are telling us, our position, movement and balance.  Some autistic people may experience external and internal senses more strongly which can lead to a sensory overload, or some people may be under sensitive in processing sensory information. People who experience sensory differences may therefore need more support to manage their day-to-day life and could benefit from adjustments to the environment to reduce stressors.  Some autistic people may only be able to process one sensory experience at a time and therefore when sensory overload occurs it can cause headaches, nausea, or a fight or flight response.  It can also lead to some people shutting down completely.  Some autistic people may struggle to filter information and so communicating information clearly or in a way the person prefers can increase accessibility for the person to crucial information. 

Sometimes autistic people both consciously and unconsciously try to mask their differences.  This has been particularly observed in autistic girls and women. Masking or camouflaging autistic traits can be exhausting and is likely to have a negative impact on a person’s health and wellbeing and therefore there is a need to accept differences and embrace neurodiversity.

There are many ways that communities and services can adjust and personalise their approach to be more inclusive to every autistic student, patient, and person. The NHS Long Term Plan » Learning disability and autism 2019 recommends that a ‘digital flag’ in the patient record will ensure that professionals in health services will know a patient has a learning disability or autism.  The Equality Act 2010 sets out the legal obligation to make reasonable adjustments for people with disabilities. A failure to do so is not only unlawful but can represent a poverty of ambition for autistic people, and lead some to conclude that services are designed around the needs of the people who work in them, rather than the needs of the people who access them.   Whilst there is a role for specialists and professionals, the person, their friends and family are the experts, and can reasonably expect that all services across education, social care, employers and health services will make adjustments to increase accessibility and positive outcomes to enable autistic people to thrive.

This chapter outlines the evidence that autistic people experience inequalities across health, education, employment and social opportunities.  There has been a focus on building awareness of autism locally and nationally, however there is a need to move into a phase where services that support autistic people make adjustments and adaptations and seek to eliminate stigma, embracing the strengths of autistic people in order to reduce inequalities. This chapter will be used to support the Nottingham and Nottinghamshire Integrated Care System Autism Strategy to seek to improve the lives of autistic people locally.  This chapter will use the term ‘autism’ as an umbrella term for all such conditions, in line with the terminology adopted by NHS England and will refer to “autistic people”, using identify first language principles.

Unmet need and gaps

Access to Preventative Mental Health Provision: There remains a national and local programme to reduce the number of hospital admissions under the Mental Health Act for people with a learning disability and/or autism.  Despite this, the evidence locally and nationally is that the numbers of people admitted into hospital is increasing and autistic people continue to be identified as at increased risk of suicide. Access to preventative mental health support that can make adjustments to support autistic people is required to prevent avoidable admissions into Hospital. The development of existing community-based mental health services to enable people to be supported before reaching the point of crisis is a key priority. 

Reasonable adjustments across Health, Social Care, and Education services: There are identified inequalities in health, social and educational outcomes for autistic people. There are a range of barriers to accessing services for autistic people. Whilst significant activity has been undertaken to increase awareness of autism locally, there is a need for services to move to acceptance and adjustment.  This will involve delivering services that take the time to understand what a person needs which will benefit everybody in the community, including autistic people and those without a formal diagnosis and improve access to meaningful support to prevent needs escalating.

Accommodation and Social Support: Some autistic people will require support to access good housing, that can meet their needs, in a place where they feel safe and may require support to live independently.  There is evidence that autistic people do not feel they are able to access meaningful support and therefore working with people to understand how services can improve for autistic people is a key priority.

Employment: There is a need to ensure that autistic people have opportunities to gain skills and support to access paid employment and remain employed.

Assessment and Waiting Well: There is an increasing and high demand for autism assessments in Nottingham and Nottinghamshire and there are long waiting lists to receive a diagnosis. There is need to ensure that people receive regular communication whilst they are waiting and that they are able to access the right advice and support both before and after a diagnosis. There is also a need to ensure that opportunities for assessment are available to those where there are lower rates of prevalence such as women, older people and those from ethnic minority communities.    

Planning services: Further work is required to understand the local population and identify  needs, and priorities across health and social care services. Every autistic person is different and not everyone with a diagnosis will need support, and not everyone who needs support will have a diagnosis.  Identifying where a person has autism can help services to consider current and future demand for services and working together with people with lived experience and their families to design services will lead to improved outcomes. 

Recommendations for consideration

Anne Tebbs

Senior Commissioning Officer

anne.tebbs@nottscc.gov.uk 

James Wheat

Commissioning Manager

james.wheat@nottscc.gov.uk