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Autism

What is autism?

Autism is a lifelong developmental (or neurodevelopmental) condition, sometimes referred to as Autism Spectrum Condition (ASC). Autism impacts on the way an individual experiences and interacts with the world. Autism, including Asperger's Syndrome , is much more common than most people think with more than 1 in 100 people being on the autistic spectrum. Some autistic people may also have other conditions, such as a learning disability or ADHD (Attention Deficit Hyperactivity Disorder).

Who is this information for?

Self advocates have developed these pages which contain information about autism to help ensure you get the information you need and know what support is available to help you. It is for:

  • Autistic adults
  • Families and friends
  • Professionals
  • Anyone who is interested to learn more about how autism affects adults

Information for children and young people can be found on The Local Offer.

Who is the West Sussex Autism Lead?

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
Tel: 0330 22 23430
Email: Lisa.Loveman@westsussex.gov.uk

The Autistic Spectrum

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.

What difficulties do people with autism have?

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.

Asperger's Syndrome

Although people with Asperger’s Syndrome usually have fewer obvious problems with language than those with autism, often speaking fluently, their words can sometimes sound formal or stilted and there is often a significant difference between their ability to express themselves verbally and their ability to process and interpret the communication of others. People with Asperger syndrome tend not have the accompanying learning disabilities often associated with autism; in fact, people with Asperger’s Syndrome are often of average or above average intelligence.

Recommended further reading

Two books recommended by self advocates are:

  • ‘Been There. Done That. Try This! An Aspie’s Guide to Life on Earth edited by Tony Attwood, Craig R Evans and Anita Lesko.
  • ‘The Independent Woman’s Handbook for Super Safe Living on the Autistic Spectrum’ by Robyn Steward.

Understanding autism resources

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:

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.

Get support from your peers by joining a group

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 2nd Wednesday of every month, 4:30-6:30pm 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.

Location: Burgess Hill (monthly meetings); Horsham (annual event)
Website: www.aspergersvoice.org.uk
Email: aspergersvoice@gmail.com
Phone: 07471 353062.

LIMA Women's Group

Group 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

Attend an Event

Ask for ‘Reasonable Adjustments’

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.

Support services that are available

Local statutory services:

Children's support services
Adults' support services

Support for Family and Friend Carers

Carers Support West Sussex Services exists to help carers lead fulfilling lives. By providing information about services available, supporting carers to get help they need and involving carers in planning and development. There is a dedicated support for carers and family members of people aged over 16 with autism. Carer Response Line is open Monday to Saturday
Phone: 0300 0288888

Getting a diagnosis

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: www.autism.org.uk/about/diagnosis/adults

Please follow this NHS Choices 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.

Community based social support

LIMA Project

Provides support sessions for autistic adults who are not eligible for a funded social care package. Lima can offer 1:1 appointments via face to face, telephone, email, instant messaging and Skype (or other electronic means). Sessions last for 45 minutes. Face to face venues are in Horsham and Worthing. Contact Alongside Autism who run the service.

Workaid

Offers a supported employment service to help people with a learning disability and/or autistic adult’s access mainstream employment support. Go to the Employment page for further information. Contact Aldingbourne Trust who run the service.

Advocacy

Details about the independent advocacy service where an advocate works with you to build confidence and helps you speak out about issues can be found on the advocacy page.

National support

The National Autistic Society provides information, support, pioneering services and campaigns for a better world for people with autism (including Asperger syndrome) and their families. Autism Helpline Number: 0808 800 4104 Helpline opening hours: Monday-Thursday 10am-4pm, Friday 9am-3pm (excluding Bank holidays). You can also contact the Autism Helpline via online enquiry forms. You may also be able to find answers to your queries in their frequently asked questions.

Last reviewed: 20/02/2019

Useful links:

What do you know about autism?
Click here to take the Understanding Autism quiz.

Did you know that 9,000 residents in West Sussex have autism?

#understandingautism

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