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Autism

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What is Autism

Autism is a neurotype (brain functioning style) which influences how someone:

Autistic people may have differences in their:

We live in a neurodiverse world. This means there are lots of different brain functioning styles or neurotypes. Being autistic is a form of neurodivergence. This means autistic people experience the world in a vastly different way from the neuromajority. Neuromajority is the most common brain type.

Some elements of being autistic can be challenging. This may include sensory overwhelm or difficulty regulating emotions. However, there are also many strengths that autistic people may share.

Common strengths for autistic people include:

Common difficulties for autistic people include:

The right changes and accommodations can help minimise challenges experienced by autistic people. This will allow them to feel comfortable, safe and their strengths can come to the fore. This will enable them to thrive.

There are common characteristics which allow us to identify autism. However, every autistic person is different. The autism spectrum is not linear from high to low. It varies in every way that one person might vary from another.

Some useful websites to learn more about autism include:

We also recommend watching this YouTube video on neurodiversity called Amazing Things Happen:

If you think your child may be autistic, speak to:

Autism and Attention Deficit Hyperactivity Disorder (ADHD) often co-occur. This is known as AuDHD. Both autism and ADHD have shared characteristics and overlapping traits. We need more research to know more about ADHD and autism and how they relate to each other.

Please note, some services also refer to autism as:

Autism Support

Your child should receive support in their education setting based on their experiences and needs. They do not need a diagnosis for this support and it does not change during the wait for assessment.

Support for your child should be ongoing and include The Graduated Approach. This is also known as Assess, Plan, Do, Review.

We have created a PDF that brings the contact information for a range of support services together in one place. It also covers common areas of concern you may have about your child’s health and wellbeing as they grow up:

Assessment and diagnosis of autism can include a long wait. It can take years to receive an assessment in East Sussex.

During this time, your child may still need support. 

Your child does not need a diagnosis or an Education, Health and Care Plan (EHCP) to access the services in this document. These services are open to you before, during and after an assessment of needs.

Social Communication and Neurodevelopment Support (NHS)

The NHS offer social communication and neurodevelopment support. This is for children and young people with Autism or ADHD. The child or young person does not need to have a diagnosis to access support from this pathway. 

This is a multi-disciplinary pathway. It involves:

It also includes a skill mix of therapists and integrated therapy assistants.

They deliver provision within this pathway across:

Children and young people can access this pathway from 3 years old to 18 years old. This extends to 19 if they are in full time education.

You can visit the NHS East Sussex Children website to find out more:

Parent Groups and Befriending (Amaze)

Amaze are a local charity. They support families of children and young people with Special Educational Needs and Disabilities (SEND).

Amaze run: 

You can find out more by visiting the Amaze website:

Amaze also have a fact sheet of information relating to autism. Parents and carers can read it online:

Neurodevelopmental Pathway (NDP) Family Training and Navigation Service

Amaze also offer the NDP Family Training and Navigation Service. This service supports families at each stage along the neurodevelopmental pathway. They help to manage the challenges that children and young people face. This service is for families in Brighton & Hove and East Sussex.

As well as Autism, the service also covers:

Please visit the Amaze website to find out more:

They have also created PDFs for parent carers with neurodivergent children and young people. This includes those awaiting assessment. The document has lots of useful information and links to training:

Spectrum

Spectrum is a free, county-wide service. It helps Autistic children and young people ‘aged 5–18’ to join in activities in their local community. It also allows them to:

You can find out more about Spectrum on our directory:

Amaze SENDIASS

Amaze SENDIASS (Special Educational Needs and Disabilities Information Advice and Support Service) are a local charity. They offer free, independent, and impartial advice for all matters relating to SEND. This includes Autism. Contact Amaze SENDIASS by:

Visit the Amaze SENDIASS web page.

Health and Care Passports

Health and Care Passports are documents with information about a person. They help people access support and reasonable adjustments that meet their needs. This includes passports for those with autism.

To find out more, visit our page on Health and Care Passports.

East Sussex Local Offer directory of services

You can visit our SEND-specific online directory, hosted on East Sussex 1Space. The directory lists many different services both throughout the county and online. Services cover many topics, including:

Visit the East Sussex Local Offer directory.

Autism Assessment and Diagnosis

The NHS website outlines the steps taken in diagnosing autism. It also explains what happens during an assessment:

Assessment - Community Paediatrics

Community Paediatrics is a specialist multidisciplinary team consisting of:

They contribute to the assessment and management of children and young people with possible neurodivergence. This includes:

You can find out more about community paediatrics on the NHS website:

There are different referral routes to community paediatrics depending on age and difficulties.

The referral route for primary school children with possible neurodivergence is from:

The referral route from pre-school age children is from:

You can find out more about referrals on the NHS website:

Assessment - Child and Adolescent Mental Health Services (CAMHS)

The CAMHS Neurodevelopmental Service provides diagnostic assessments of neurodevelopmental conditions in children.

They have assessment teams in East Sussex, West Sussex and Brighton & Hove. They undertake the assessment and diagnosis of:

This is known as the Neurodevelopmental Team (NDT). For young people aged 18 and over, visit the NHS website for more information:

The NDT includes:

You will see a combination of these professionals during treatment.

You can find out more about CAMHS Neurodevelopmental Service on the NHS website:

NHS Right to Choose (RTC) Framework

Services for people seeking assessment and related care for Autism in Sussex are provided by:

The national NHS RTC Framework allows NHS patients to select their healthcare provider. This happens during an initial / first appointment when receiving a referral from:

The RTC applies when the referral is for a clinically appropriate physical or mental health service.

Find out more by visiting the Sussex Health & Care website:

What to do in a Crisis / Urgent Situation

Help is available right now if you are a young person:

You are not alone. 

If you have a safety plan, follow it.

If you or someone else is in immediate danger, get help straight away. You can either call 999 or go to Accident and emergency (A&E).

There are many free, confidential services that are open 24 hours a day:

Families can also find help on our Support for You and Your Family web page.

You can also visit our 1Space directory, which lists lots of mental health and emotional wellbeing services. All services can be accessed from East Sussex:

Pathological Demand Avoidance (PDA)

PDA is widely regarded as a profile of Autism. It does not currently appear in diagnostic manuals. For this reason and for a PDA profile, NHS professionals in East Sussex do not:

However, we may assess a child for Autism who presents recognisable or reported elements of a PDA profile. If this is the case, we will describe this within the child’s assessment report.

We have created a position statement. The statement outlines this position and also aims to empower parent/carers, children and schools to:

To find out more, read the PDA East Sussex Position Statement (December 2023) PDF.

Oliver McGowan Mandatory Training

The Oliver McGowan Mandatory Training on Learning Disability and Autism is named after Oliver McGowan. Oliver's death shone a light on the need for health and social care staff to have better training. The Health and Care Act 2022 introduced a statutory requirement that CQC-registered providers must ensure their staff receive:

This is the preferred and recommended training for health and social care staff.

The training is for professionals, but it is useful for children, young people and parents to be aware of it. You can find out more by visiting the NHS website:

Support Groups and Activities

For children and young people

There are lots of support groups and activities for children and young people with Autism. To learn more, please visit our pages on:

For parent carers

This website has a page that offers support for families. This includes parent carers and siblings. Find out more by visiting our Support for You and Your Family web page.

Glossary of East Sussex SEND Terms

We explain some of the terms used on this website on our page, Glossary of East Sussex SEND Terms.

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