This page aims to provide the starting blocks for professionals to consider when working with autistic adults. It includes resources and links to other webpages.
What is Autism?
Autism is a neurodevelopmental condition. It is not a learning disability or mental health illness, although autistic people may also have a separate diagnosis of these as well as other conditions (see other conditions that affect autistic people). Autism is considered a disability under the Equality Act 2010, however many autistic people would not consider themselves disabled.
Neurodiversity is a term used to embrace the differences in learning, communication and behaviours of individuals. Individuals whose brains may process information differently, for example autistic people or those with ADHD or Dyslexia may identify as ‘Neurodivergent’. Those who do not display traits of neurodivergence may be referred to as ‘Neurotypical’.
Autism affects people’s communication and social interaction with the world.
Autism is also referred to as Autism Spectrum Disorder (ASD), as it presents differently in every person and the strengths and challenges individuals face may fluctuate. Some autistic people may require support 24-hours a day, where others may have minimal or no formal support needs and may live independent lives. Some people may receive a diagnosis as a child, others as adults and some not at all.
In the UK, there are around 700,000 autistic adults and children (National Autistic Society)
Autism may present different in females compared to males. There are more autistic males diagnosed compared to females with a ratio of 3:11; this could be due to a misdiagnosis of mental health or autistic traits being missed completely.
Autistic people may:
- Find it difficult to describe how they are feeling as well as finding it difficult to understand the feelings and thoughts of others
- Struggle with any changes to their daily routine, resulting in increased anxiety
- Experience increased anxiety about social situations
- Find it difficult to understand some things, for example sarcasm.
Balancing everyday life, social situations and sensory overload can lead to fatigue and potential burnout for any adult, but for an autistic adult this can be more likely. Autistic fatigue and autistic burnout can result in exhaustion, physical symptoms such as pain and headaches, loss of speech, changes in behaviour such as increased meltdowns and heightened sensory sensitivity. Visit the National Autistic Society for further information and guidance.
A diagnosis for autism can help adults to get the correct support.
If an adult thinks they are autistic they can speak to their GP or health professional who may refer them for an autism assessment, the National Autistic Society provides further guidance for adults who believe they may be autistic.
To find out what happens during an autism assessment visit the NHS for further information.
It isn’t always easy to get an assessment and there can be long waiting times, it may therefore be helpful for the adult to seek support from friends, family or other people with similar experiences. Find further information on support services under “Support and Further Resources”.
If you believe that someone you know is autistic but you are not sure on how to discuss this with them sensitively visit the National Autistic Society for further guidance.
If someone requires help with day-to-day living they are entitled to a free care needs assessment from their local council. This will help to identify what practical and financial support someone may be available.
It is important to take an individualised approach because, ‘if you know one autistic person you know one autistic person’, however there are some common reasonable adjustments to consider when working with an autistic adult.
Always ensure you ask the adult their specific requirements before making adjustments, as adjustments are not a one size fits all.
Language
Many autistic people prefer the use of identify-first language as autism is a part of them and not an addition. For this reason, ‘autistic person’ is the preferred language rather than ‘a person with autism’. Always check with the person on their preferences or where this is not possible, seek further guidance from family members or carers. The Autism Education Trust has produced a useful terminology guide to improve consistency and to encourage others to think about how they talk about autism
Autism-friendly services
Autistic people can get anxious or stressed about unfamiliar situations and social events. There are things that organisations can do in advance, to reduce their anxieties when attending new places. This may include providing accessible information to the adult in advance of their meeting, detailing things such how to get to the venue, quiet spaces, alternative entrances (if available) and how to request reasonable adjustments in advance of their appointment.
Meetings should not take place in noisy or overstimulating environments and if they take place in the community, the person should be asked where they would feel most comfortable meeting. These slight adjustments could reduce anxieties and increase engagement with services. The National Autistic Society provide tips on how to make your service more autism-friendly.
Reasonable adjustments
The Equality Act 2010 requires organisations to make ‘reasonable adjustments’ to ensure that people with disabilities receive the same level of service as those without disabilities. Reasonable adjustments can include a range of changes to service delivery that can support an individual with accessing the service; the person should always be asked what adjustments can be made to support them. This should be recorded and reviewed on a regular basis with the person and where required their family/ carer, to reflect their current circumstances.
Personalisation
Make sure the person is at the heart of all decision-making, work with them to identify their unique abilities and challenges, and then work alongside them to achieve their (self) identified needs.
Communication
Professionals should remember that the person may find it difficult to communicate and interact with other people. Professionals should understand that what the person says and how they say it may well be a feature of their condition. They should give the person time to communicate and be calm and considered in their communication with them. Other forms of communication, for example email or video call may be preferred over face to face or a telephone call so the preferred method of communication should be explored with the individual and adjustments made.
Understanding
Autistic people may find it difficult to interpret nonverbal communication from others which may make it challenging for them to respond in the way in which a neurotypical person would expect.
Presenting information
Autistic people may take longer to process information that is presented to them. Staff should give them additional time to process information and provide it in a format that the person understands (this may include easy read formats, larger writing or specific colours for example), providing assistance where required. They should also check with the person that they have understood what is being communicated, both at the time and also check their understanding again at later dates.
Take time
Autistic people may do or think the same things over and over again. Professionals should bear this in mind when working with autistic people, and build additional time into their meetings and visits so that the person does not feel pressured to be quicker than is comfortable for them. Attempts to rush them may result in them feeling stressed which in turn may negatively impact the person.
Training
Training is important, as it helps to ensure that Professionals have the right skills and knowledge to be able to provide safe, compassionate, and informed care to autistic people. The Health and Care Act 2022 introduced a requirement for regulated service providers to ensure that their staff receive training on learning disability and autism which is appropriate to their role. The Oliver McGowan mandatory training on learning disability and autism is the government’s preferred and recommended training for staff to undertake.
Local Services and Information
Support is available from local support groups and services (some of which are listed below). The local authority where the individual lives can provide support and information on needs assessments, support for carers and further support.
- Daisy Chain https://www.daisychainproject.co.uk/
- Autism Matters https://autism-matters.co.uk/teesside/
- North East Autism Society https://www.ne-as.org.uk/
- Autism Initiatives https://autisminitiatives.org/
- Dimensions https://dimensions-uk.org/region/north/
- You can also search for local groups using the National Autistic Society services directory.
Autism Central (Daisy Chain) – A programme co-designed to provide high-quality and accessible autism information, education and coaching for families, and carers, and co-delivered by autistic people, families and carers.
National Organisations
- National Autistic Society https://www.autism.org.uk/
- NHS https://www.nhs.uk/conditions/autism/
- Autistic Parents UK
- Support is also available from people with lived experience via social media. Visit https://www.nhs.uk/conditions/autism/support/ for further information
Pathological Demand Avoidance (PDA)
The PDA Society defines Pathological Demand Avoidance as being “widely understood to be a profile on the autism spectrum, involving the avoidance of everyday demands and the use of ‘social’ strategies as part of this avoidance.”
Visit the PDA Society Website for support for professionals, training and resources, including:
Information sheet for social care professionals
Introduction to PDA – YouTube Video
National Autistic Society – Demand Avoidance
Further Resources
An independent guide to quality care for autistic people – National Autistic Taskforce
Core Capabilities Framework for Supporting Autistic People
Meeting the needs of autistic adults in mental health services
Mental Health Act Assessment Easy Reads for autistic people
Good practice guidance – working with autistic parents
Easy read information and videos about autism
Short video guides on practical autism topics
TSAB Resources
SK Safeguarding Adults Review – SK was an Autistic Adult. The Safeguarding Adults Review highlights key themes on multi-agency working, safeguarding, self-neglect in a care setting, mental capacity and supporting autistic people. The Report, Learning Briefing and Recorded PowerPoint can be accessed online and used as part of training resources.
Tricky Friends Video: Developed to help people to understand what good friendships are, when they might be harmful, and how to seek help and support.
With thanks to South Tyneside Safeguarding Adults Board for their useful information and the local organisations involved in supporting the development of this page.