Autism

What is autism?

Autism is a lifelong difference in how people think, perceive the world and interact with others. It is usually thought to be neurological.

An autistic person may see, hear, feel and experience the world differently from non-autistic people. If you are autistic, you are autistic for life; autism is not an illness or disease and cannot be ‘cured’. Often people feel being autistic is a fundamental and positive aspect of their identity.

Diversity

Autism is not a single set of ‘symptoms’ or characteristics. Autistic people all have some form of difference in social understanding or focus, but are very diverse.

In fact, autistic people can be more different from each other in interests and skills than non-autistic people are. This is why autism is called a ‘spectrum’. It is often said that ‘if you’ve met one autistic person… you’ve met one autistic person’.

Some autistic people also have learning disabilities, mental health issues or other conditions, meaning people need different levels of support and the needs may vary over time. Autistic people learn and develop in their own way. With the right support, everyone can be helped to live a more fulfilling life of their own choosing.

Activities and sensitivities

Daily social activities can become very overwhelming for autistic people. Often the type of things neurotypical (non-autistic) people find easy, like small talk, attending social events, taking turns in conversation, or even returning a library book can be extremely difficult to manage for the autistic person.

Some autistic people may have sensitivity to sound or light, while others may be less sensitive, for example, to pain.

For many people, being autistic is a disability in itself. Other autistic people may only be disabled by social barriers or the expectations of others.

Non-autistic people can come to understand how an autistic person’s perception of the world can be both overwhelming and also very rewarding, for example appreciating colour, music and strong or compulsive interests, though some sounds or materials may cause an unpleasant reaction.

Autistic people report being overwhelmed by senses, including light, sound or perfume, and tend to find social interaction, particularly ‘small talk’, challenging.

What is happening in Hackney?

Our vision is to have an autism-friendly City and Hackney.

Between May 2022 and March 2024, we ran the Autistic Friendly Neighbourhoods project. The aim of the project was to support the London Fields neighbourhood to be more welcoming and accessible to autistic people.

We worked with GP practices in London Fields to create autistic friendly checklists for primary care networks (PCNs) and healthcare settings. It aims to make reasonable adjustments for autistic people using their services.

Some changes made included:

• offering people longer appointments
• telling people what to expect before they come into their appointment
• making sure people can contact their GP practice using text or email

We are now working with other GP practices across City and Hackney to become autistic friendly.

For more information, see the Autistic Friendly Neighbourhoods newsletter or email jody.barrientos@nhs.net.

City and Hackney autistic friendly standards

Autistic people are unique and individual, like non autistic people. However, our experts by lived experience tell us there are some common themes. If we acknowledge and address these themes correctly, we can create spaces that are more welcoming and accessible for autistic people in our community.

With this in mind we have developed the 5 City and Hackney autistic friendly standards (PDF 847kb). These are:

• listen to autistic voices
• celebrate autism acceptance
• make a commitment to understand autism
• make things predictable
• create a sensory friendly environment

We designed the standards for settings, organisations and places in City and Hackney to use as a self-audit tool. Using these standards will help them become more accessible to autistic people.

See a digital version of City and Hackney autistic friendly standards.

If you would like support using the autistic friendly standards, email jody.barrientos@nhs.net. test

Autism Alliance Board

The Autism Alliance Board is made up of autistic individuals, carers and organisations who are working together to help autistic people and their carers/parents lead more fulfilling and rewarding lives.

There is an implementation group which is working to make the recommendations in the strategy happen over the next 5 years.

Autism strategy

What is the autism strategy?

The Council, along with the City of London, have co-produced a five-year autism strategy with autistic residents and their families and carers.

This strategy will help the Council and its partners to work together to make services and the community friendly to autistic residents.

• autism strategy
• easy read autism strategy

Resources for autistic people

A communication card has been designed by the Autism Alliance Board’s Experts by Experience group. You can decide when and where to show your card and it has been designed to help in situations where you may find verbal communication difficult or impossible.

Request an autism card 

Our autistic residents group consists of autistic people and those who care for an autistic person and live or work in Hackney. By joining the mailing list, you will receive updates about the City and Hackney autism strategy, learn about new initiatives and join in with discussions about local services. To find out more about the autistic residents group, visit Hackney SEND Local Offer – Autism Experts by experience.

The group meets once a month. This is a hybrid meeting, so there is an option to join either face to face or virtually. You are not obligated to attend any meetings by joining the mailing list.

Join the experts by experience mailing list.

National Autistic Society has created a health passport for autistic people in case of admission to hospital.

We have developed a pocket health passport (PDF 181kb) for autistic residents to use during their health appointments. You can print, laminate and carry this passport with you. It is 3 x 5 inches (size B7). You can book an autism advice session (see information below) if you would like support filling out the health passport and/or with printing and laminating.

Resources for those supporting autistic people 

Services

Support with getting a diagnosis

The Adult Autism Service for City and Hackney is run by East London Foundation Trust (ELFT) and offers diagnosis, brief interventions and advice to adults living in City and Hackney who have not had a previous diagnosis. You need to be 18 or over and registered with a City and Hackney GP.

The Adult Social Care team are now offering autism advice sessions for anyone over the age of 16, who has a diagnosis of autism, works with or cares for someone who does. The service is aimed at autistic people without a learning disability. The sessions run every Thursday morning. You need to book a slot to attend.

For more information, visit Hackney local offer – Autism advice sessions.

The specialist supported employment team offer specialist support to anyone who has a long term health condition or disability

The learning disability and autism service at Homerton hospital can help supporting autistic people during their hospital visits or stays for example, by checking that reasonable adjustments are in place.

Information and support for children and young people and their parents/carers about diagnosis can be found on Local Offer.