Page Updated: 31st March 2021
Reaching Families and Amaze have worked in partnership to produce a series of informative materials written by parent-carers for parent carers. These include a series of factsheets on specific conditions designed to be used by parent-carers when they receive their child's diagnosis. This information will help parents get a better understanding of their child's condition and understand what support is available to them locally.
The factsheets have been reviewed by NHS clinicians.
Parent-carers were involved at all stages of the editorial process.
Visit Reaching Families website for more factsheets
What is autism?
Autism is a lifelong developmental disorder that affects how a person communicates and interacts with other people and makes sense of the world around them. Autism is a spectrum disorder, which means that although all people with autism have difficulties with certain things, the degree to which they are affected varies widely. Together, different types of autism are sometimes known as autistic spectrum conditions (ASCs). Around 1 in 100 people in the UK are known to have autism, with many more boys affected than girls.
Characteristics of autism
People with autism share difficulties in three areas. These are:
Difficulty with social communication.
Difficulty with social interaction, including reading emotions and facial expressions.
Difficulty with social imagination.
Together, these three difficulties are known as the ‘triad of impairments’. People with autism may also
have sensory issues, with noise sensitivity being very common. Some people with autism also develop
unusual and repetitive patterns of behaviour and obsessive interests.
People who are on the autistic spectrum may also have varying degrees of learning disabilities. They
may also have other conditions such as: attention deficit hyperactivity disorder (ADhD); dyspraxia,
which affects co-ordinating thoughts and movements; hypermobility syndrome; epilepsy or Tourette’s
Causes of autism and types of therapies
At the moment, the causes of autism are still unknown, although many experts believe that it may be
the result of a number of different genetic and environmental factors.
There is no ‘cure’ for autism but there are a number of therapies that may help your child:
Applied Behavioural Analysis (ABA) – intensive therapy which breaks down skills into small
tasks and teaches them in a highly structured way.
Social Stories – short stories that teach children and adults with Autism what to expect in social
situations or activities.
Speech and Language Therapy (SALT) – specialist support provided by a therapist to help build
language and communications skills.
TEACCH – highly structured system of learning based on using visual prompts, which have found
to be beneficial in teaching people with autism.
There are a number of ‘alternative’ therapies available to treat children and adults with autism, some of which have little scientific proof of their effectiveness. It is advisable to consult your paediatrician or GP before proceeding with any therapy for your child.
Local information and support
West Sussex County Council have produced [Guidance](https://www.westsussex.gov.uk/media/15713/guidance_safeguarding_young_people_with_autism.pdf) as well as a [Toolkit](https://www.westsussex.gov.uk/media/15711/toolkit_safeguarding_young_people_with_autism.pdf)for parents about safeguarding young
people with Autism Spectrum Conditions from extremist ideologies.
ASCT (Autism, Social and Communication Team) – team of advisory teachers with expertise in
autism who support and advise schools on the educational, social and emotional development of
children and young people. Referral is via your child’s school – please ask them for further
– autism charity in West Sussex. Contact 03454 500060. It runs
behavioural advice services, parent workshops, coffee mornings, clubs and siblings clubs. Aspens
– doctors and therapists who help children and young people with mental health issues. Referrals must be made by a professional from health, social care or an educational setting. Child and Adolescent Mental Health Service (CAMHS)
– a social work service for children and young people with severe and/or complex disabilities, it works with families and other agencies to ensure they get the right
support. Families can call the Integrated Front Door (IFD) for West Sussex Children Services on 01403 229900 or complete the
Child Disability Service online referral
– a free leisure discount card for 0 to 25 year olds with SEND, whichis run by Amaze. Compass Card West Sussex
Early Bird – three-month course for parents and carers of children under 5 with autism designed
to help develop their child’s communications skills and behaviour. early Bird+ is available for
school-age children. Find out more via the Portage team.
National Autistic Society (Horsham) – social club for children and young people aged five to 18
with Autism and Asperger Syndrome. Running during term time, once a week on Tuesdays 17:30-
19:30. Tel: 01483 521743 or email: [email protected]
Portage – a home-based educational programme tailored to a child’s individual needs. Available
to very young children. Chichester: 01243 536182; Crawley and East Grinstead: 01293 572480;
Horsham: 01243 536182; Mid-Sussex: 01444 243150; Worthing: 01903 242558.
Sensory toys – available for parents and carers to borrow from a number of children and family centres and some libraries.
Support groups – Autism by the Sea, Autism Support Crawley, Bognor Regis Autism & SEND
Support (BRASS), PATH – Parenting Autism Together in Horsham, Puzzle Pieces Support Group,
SEND Support Sussex and Sussex Autism Support. All can be found on Facebook.
West Sussex Children Services – support from health and social care. If your child is under 18, call the Integrated Front Door (IFD) for West Sussex Children Services,
tel: 01403 229888
or email: [email protected]
For over 18s call the Adults’ CarePoint:
or email: [email protected]
Other resources – The Ashdown Club, Worthing: 01903 528607; Kangaroos, Haywards Heath:
01444 459108; PACSO, Chichester: 01243 533353; Springboard Project, Horsham: 01403 218888
National information and support
Aspie Trainers have produced some videos as part of West Sussex Minds parents and guardians training programme.
'Autism in Girls'. The video talks about: how women and girls on the Autistic Spectrum present differently to boys.
the diagnostic challenges for women and girls that can lead to misdiagnosis and late diagnosis.
why women and girls on the autistic spectrum are more likely to mask their differences and how masking can impact mental health.
suggestions to empower and support women and girls with ASC
For questions please contact
[email protected] VIDEO
'Meltdowns and shutdowns'. The video talks about: the difference between a meltdown, a shutdown and a temper tantrum
how having a meltdown or shutdown commonly impacts on an autistic person
the factors which contribute to autistic people experiencing meltdowns and/or shutdowns
ways to reduce the likelihood of meltdowns or shutdowns in your professional context
ways to support autistic people during and after meltdowns and shutdowns
Anxiety in Autism is an evidence based guide to help understand how anxiety impacts those with Autism.
• Joe Faulty along with the National Children's Bureau (NCB) has created a podcast in which Joe talks about his experience of growing up with Autism.
Go to the NCB website to watch the video
– national charity for children and young people with autism. They also have a free Ambitious About Autism toolkit which is a resource designed to help parents and carers of young children with autism to navigate their journey in the early years.
Making Sense of it All – Reaching Families' handy parent/carer guide contains information and advice on benefits, support for your child at school, getting help from social services and accessing social & leisure activities
Disability Living Allowance (DLA) – your child may qualify for DLA, a state benefit that will help with their care. More information on DLA.
– Helpline tel: 0808 800 4104. National Autistic Society