Autism

The word 'spectrum' is used because, while all people with autism share four main areas of difficulty, their condition will affect them in very different ways.

The characteristics of autism vary from one person to another, but in order for a diagnosis to be made, a person will usually be assessed as having had persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests since early childhood, to the extent that these "limit and impair everyday functioning".

Some people are able to maintain an independent lifestyle; others may require specialist support at different points in their lives. Some autistic people say the world feels overwhelming and this can cause them considerable anxiety.

Autism is a ‘hidden disability’. It can be hard to create awareness of autism. Adults with autism can find that they are misunderstood.

People with autism, including those with Asperger’s Syndrome, share four main areas of difficulty, although the condition will affect individuals in different ways:

• Social communication - difficulty understanding facial expressions or tone of voice or taking common phrases or sayings like 'It's raining cats and dogs' literally.

• Social interaction - difficulty making friends because they do not understand the rules of social contact.

• Social imagination - difficulty understanding and interpreting thoughts, feelings and actions of others. They can also find it hard to predict what will happen next which makes it challenging for them to prepare for change and plan for the future.

• Sensory processing and integration - it is now widely recognised that the majority of individuals on the autistic spectrum experience sensory issues. For example, being hypersensitive and /or hyposensitive to sensory input or having difficulty discriminating certain sensations. This can have an effect on emotions, ability to perform certain tasks and managing behavioural and emotional responses.

Lisa Loveman, Commissioning Manager at West Sussex County Council, is the West Sussex Autism Lead for adults.

The Autism Partnership Board, with membership from a wide range of stakeholders, meets bi-monthly to develop information, support and services for autistic people in West Sussex. For more information, please contact:

Lisa Loveman, Commissioning Manager

Phone: 0330 22 23430

Email: Lisa.Loveman@westsussex.gov.uk

For Children and Young People contact: 

Jacqui Parfitt, Children’s Commissioning Manager

Phone: 0330 2229488

Email: Jacqui.Parfitt@westsussex.gov.uk

A diagnosis is the formal identification of autism by a health professional such as a paediatrician or psychiatrist.

Having a diagnosis is helpful for two reasons:

• It helps people with autism (and their families) to understand why they may experience certain difficulties and what they can do about them.
• It enables people to access services and support.

GPs can refer people to a healthcare specialist who is able to make a diagnosis.

West Sussex has a service called the West Sussex Neurodevelopmental service (part of Sussex Partnership Foundation NHS Trust) which is open to adults 18+ who may not have had a formal diagnosis of autism but whose health or social care professional (GP, nurse, social worker) thinks they may have autism.

People can be referred to this service to be assessed and/or diagnosed however you will need to be aware that the service operates a waiting list which currently stands at 20 months in West Sussex.

The service prioritieses referrals based on presenting risk so some people may be seen sooner.

Commissioners across Sussex are looking at how to reduce this waiting time.

You may find it helpful to read the information about asking your GP to refer you, on the National Autistic Society website: 

Please follow this NHS link if you would like to find out more about diagnosis.

Private diagnosis is an option, if you can pay for one, and can reduce the waiting time.

The costs of private assessments can vary, so it’s a good idea to phone several services to ask about costs, what this pays for and whether any follow-up service is offered.

Check that the clinician is HCPC (health and care professions council) registered with an excellent background in autism.

Please be aware that some authorities may not accept the results of private diagnoses.

Asperger's Syndrome Self Advocacy (ASSA)

ASSA is a self-advocacy group open to autistic adults in southern West Sussex. The group gives a chance for its members to meet, make friends and share experiences with their peers; promote inclusion for autistic people in local services and; improve awareness of issues faced by autistic people.

The group meets on the second Wednesday of every month, 4:30-6:30 pm at:

The Friends Meeting House

23 Church Street, Littlehampton, BN17 5EL.

Website: www.facebook.com/ASSAWestSussex

Phone: 07471 353 062

Email: ASSAgroupWS@gmail.com

Asperger's Voice

Asperger’s Voice is a self-advocacy group run by people with Asperger’s, for people with Asperger’s to:

• meet together, make friends and support each other
• raise awareness of issues faced by people with Asperger’s
• have a say in local policies and services

We also run the annual Understanding Autism event to enable adults with Asperger’s and Autism in West Sussex to find out more about what it means to be autistic and about the resources available locally.

The group meets in:

Burgess Hill (monthly meetings) and Horsham (annual event)

Website: www.aspergersvoice.org.uk

Email: aspergersvoice@gmail.com

Phone: 07471 353062.

LIMA Women's Group

LIMA Womens group is run by Alongside Autism for autistic women age 18+.

The group meets monthly on Thursday’s from 6-8pm in Worthing. Contact Alongside Autism if you would like to attend.

Email: r.millman@alongsideautism.co.uk

Phone: 07502 979707

Autism is a ‘protected characteristic’ that is covered by the Equalities Act 2010.

This law says that when an organisation is providing goods, facilities or services to the public or a section of the public, or carrying out public functions, or running an association and finds there are barriers to disabled people in the way it does things, then it must consider making adjustments (or changes).

If those adjustments are reasonable for that organisation to make, then it must make them.

What is reasonable for an organisation to do depends, among other factors, on its size and nature, and the nature of the goods, facilities or services it provides, or the public functions it carries out, or the association it runs.

Our understanding autism resources may help organisations to make reasonable adjustments.

Originally developed as part of the West Sussex Understanding Autism campaign in March 2015 to help raise awareness and understanding of autism, these resources are available for you to use:

• Understanding autism posters
• Understanding autism behind the scenes film
• Understanding Autism Top Tips A4 Poster
• Autism at a glance - Arabic
• Autism at a glance - Bengali
• Autism at a glance - English
• Autism at a glance - Gujarati
• Autism at a glance - Hindi
• Autism at a glance - Polish
• Autism at a glance - Punjabi
• Autism at a glance - Urdu
• Myth buster quiz
• Myth buster cards
• GP notification letter template

Training

Aspie Trainers is a training organisation which aims to improve services for autistic people living in West Sussex. They do this by employing the real experts – autistic people – to deliver bespoke autism training from a first-person perspective. West Sussex Learning and Development Service provides online and classroom based training in autism available for staff in West Sussex organisations.