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Autism and Autistic Spectrum Condition

Six parents with three children all sat on chairs around a desk.

What is Autism?

Autism is something you're born with and it is a lifelong neurological spectrum condition that means their brain works in a different way from other people. This means that people with autism experience the world in different ways and may find some difficulty with some or all of the below:

They may also have an associated learning difficulty.

People with autism may have differences in their attention, interests and how they learn. This can include being very focused on particular interests. They can have a different way of being flexible, so often feel safer and more comfortable with routines and structure as this lessens uncertainty.

People with autism all have very different experiences and needs as well as different strengths. Some of these strengths could be:

While people with autism share similar characteristics to some degree, they are also all different from each other. This is because autism is considered a spectrum. The autism spectrum is not linear from high to low but varies in every way that one person might vary from another.

There is no ‘typical’ person with autism. Every individual with autism has their own strengths, differences and needs, their own life journey and their own unique story.

You can watch a 4-minute, Amazing Things Can Happen video on YouTube, which briefly explains some aspects of autism:

Pathological Demand Avoidance (PDA)

Pathological Demand Avoidance (PDA) is as a way of describing a range of anxiety-driven behaviours where a child or young person often seeks to avoid everyday seemingly reasonable requests because they trigger anxiety.

PDA does not appear as a separate diagnostic condition in nationally and internationally recognised diagnostic manuals. For this reason, NHS professionals in East Sussex do not make this separate diagnosis. However, for a child who has been assessed as being on the autism spectrum and presents with a PDA profile, this will be recognised and described within the child’s assessment report and diagnosis.

Diagnosing Autism

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

Waiting for an Autism Assessment or Diagnosis

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

During this time, your child may still require support. 

It is important to note that while having a diagnosis of autism may be helpful, your child is entitled to support in their educational setting (preschool, school, or college) based on their experiences and needs. This does not change during the wait for assessment. 

Support for your child should be ongoing and include The Graduated Approach (Assess, Plan, Do, Review).

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

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.

Additional Help and Support

Amaze Face 2 Face

Amaze are a local charity that support families of children and young people with SEND. They run groups for parents and carers of children with autism called Kids Squad and Escape:

"Amaze Face 2 Face runs Kids Squad – for parent carers of children with ASC up to 10 years old and Escape – for parent carers of children aged 11+. Contact Kathy, Face 2 Face project worker: via email: kathy@amazesussex.org.uk".

Amaze also have a face sheet of information relating to autism that parents and carers can read online:

Amaze SENDIASS

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

CLASS+

CLASS+ works across East Sussex to support families/carers of Autistic children and young people. Their aim is to provide guidance and training that enables families/carers to build their understanding of the strengths and challenges faced by Autistic children and young people and to develop greater confidence in how to support them:

Spectrum

ISEND Spectrum is a free, county-wide service that helps Autistic children and young people ‘aged 5–18’ to join in activities in their local community, develop their independence and build confidence in developing key life skills:

East Sussex Local Offer directory of services

You can visit our SEND-specific online directory, hosted on East Sussex 1Space, that lists many different services both throughout the county and online. Services include advice, guidance and support groups, activities and events and mental health and wellbeing support among many other topics:

All services on 1Space have been split into categories. Once you have selected the category that you wish to visit, you can then use the filters on the left hand side to further refine your search, depending on need:

Glossary of East Sussex SEND Terms

Some of the terms used on this website are explained on our page, Glossary of East Sussex SEND Terms.

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