Autism Adult Community Services Spectrum Conditions Autism and Asperger Syndrome Introduction Clues to Autism What can I do to reduce anxiety Why is diagnosis important? Getting a Diagnosis Social Services Support Support for the Carer Useful Resources Produced by Suffolk County Council Autism Best Practice Group
Introduction Autism is a lifelong neurodevelopmental disorder. Autism is a spectrum condition; some people have severe autism and require a lot of specialist support, whilst others exhibit mild characteristics, and live largely independent lives. Some people with autism also have a learning disability, but this is not the case for everyone. Autism affects individuals in unique ways, but all individuals have difficulty with the three core impairments, known as the triad of impairments. 1) Difficulties with social interaction. 2) Difficulties with social communication. 3) Difficulties with social imagination They may also be over sensitive or under sensitive to light, sound and heat, or certain tastes, textures or smells and may have difficulties with motor skills or balance There are often associated conditions with an Autism diagnosis such as: 1) depression 2) anxiety 3) obsessive compulsive disorder 4) attention deficit +- hyperactivity 5) learning disability 6) epilepsy 7) addiction 8) eating disorders The term Asperger syndrome is often used to refer to someone with autism who is not significantly intellectually disabled.
Clues to Autism Here are some behaviours that may indicate a person has Autism: Lifelong difficulties making/keeping social relationships. Persistent gaffes or upsetting of people. Naivety/vulnerability out of keeping with age. Rigidity/routine or rituals which when broken cause marked upset. Inability to hold down steady employment or education. Crisis at a time of change out of keeping with what one might normally expect. Eating disorders. People who cause chaos and upset, and appear unaware of the results of their behaviour. Little regard/empathy/sympathy for others feelings out of keeping with what would be expected. Individuals who may make multiple complaints with a steadfast feeling of perceived mistreatment. Poor eye contact or staring. Awkward body language. Clothing inappropriate for season/weather/colour combinations/may be always the same. Few gestures or over the top gestures. Voice loud, monotone or too quiet. Responding literally to direct questions and not to comments/humour.
What can I do to reduce anxiety? Consider first: Is there a trigger? Some activity or routine that leads to heightened anxiety? Could I reduce the anxiety by planning the day before with the individual, such as making them aware that they will be visiting the doctor the next day? Could a plan or schedule help to reduce anxiety between activities? Does the individual need more time following an experience to reduce their anxiety levels? Is there a reasonable adjustment that can be made to reduce anxiety, such as moving appointments to less busy times of the day if crowds or noise cause an issue? Am I increasing the level of anxiety? Am I stopping behaviour like flapping? Many individuals with autism find that this type of behaviour to be calming. Am I causing anxiety by forcing the individual to eat a specific diet? Some individuals have a heightened sense of taste.
Why is diagnosis important? Many individuals are concerned about a diagnosis of Autism, however it does not change the individual but could have a positive impact : Autistic Spectrum Disorders are a recognised disability and diagnosis can make life easier, when organisations such as hospitals and Job centres are involved. Diagnosis helps individuals make sense of the world around them, their history and difficulties. Better understanding of the self helps planning for the future. Families, friends, carers, employers, criminal justice system and educational establishments are helped to understand, accept and respond appropriately to individuals needs. Diagnosis helps individuals access appropriate support. Better understanding of a person can help professionals to understand the needs of an individual and make reasonable adjustments for the individual. A diagnosis of suspected autism can be used to alert local authorities such as police, if there are misunderstandings.
Getting a Diagnosis In Suffolk there is an Autism Diagnostic Pathway for individuals aged 11 years and above. How to access the Service? A referral can be made by any professional involved such as a Social Worker or a Doctor. How are people diagnosed? Different methods are used to make a diagnosis of autism. With your permission these may include: You talking with the diagnostic team Asking you to complete a questionnaire Looking at other information (e.g. school reports) The team talking to your family/carer and where possible completing an interview with someone who has known you since you were young. An Autism diagnosis is not a medical examination and you will not need to have bloods tests. How long will it take? Diagnosis is not made during your first appointment as it takes time to gather information and we may need to see you again. You can take a family member or friend with you to your appointments if you would like to. What happens after the assessment? You will be contacted by a member of the diagnostic team to discuss the outcome of the assessment. If diagnosed with autism a care plan will be developed which may include a referral to Mental health Social Services Support with finding employment
Social Services Support The Autism Act 2009 states that all individuals with Autism have a right to an Assessment. This will highlight what the individual is able to manage independently and also what activities they require assistance with. How will the assessment be completed? The assessment will be completed with the individual and any close support such as family or friend who support the individual. This can be done over the phone, via email and by the worker coming to visit the individual at home or somewhere they feel supported. Depending on the outcome of the assessment the individual may be offered : Support to request a Diagnosis Support to refer for Sensory needs Advice on independent agencies that are able to provide support Support to access community based activities or work Support to increase an individuals independence. Support to make long term plans around accommodation. How do I make contact? Contact Customer First By Phone: 0808 800 4005 Email: customer.first@suffolk.gov.uk Post: Customer First PO Box 771 Needham Market IP6 8WB
Support for the Carer The impact on carers of individual with Autism can be large and they can feel isolated and confused by the condition and how they are managing. National Autistic Society Are the leading UK charity for people with autism (including Asperger syndrome) and their families. We provide information, support and pioneering services, and campaign for a better world for people with autism Online Community http://community.autism.org.uk/ Online discussion forums where you'll find people talking about autism and sharing their thoughts, questions and experiences Parent to Parent: 0808 800 4106 a UK-wide confidential telephone service staffed by trained Volunteers providing emotional support to parents and carers of children or adults with autism. Autism Helpline: 0808 800 4104 Autism Helpline provides impartial, confidential information and advice for people with autism spectrum disorders and their families and carers Autism Anglia Autism Anglia is an independent charity which provides care and support to children, adults and families affected by autism. Contact: 01206 577678 Asperger East Anglia Asperger East Anglia offers personal, friendly assistance for everyone with Asperger syndrome and their carers by providing a comprehensive and integrated service. Contact: 01603 620500 Suffolk Family Carers Suffolk Family Carers give family carers of all ages, support and information to help them make important decisions that affect them and the person they care for. They run an Autism Spectrum Disorder (ASD) Carer Programme, which is open to any family carer of someone diagnosed with ASD. Suffolk Family Carers Information line 0844 225 3099 or 01473 835477
Useful Resources Advice and support National Autistic Society www.autism.org.uk Autism Anglia www.autism-anglia.org.uk Asperger East Anglia www.asperger.org.uk/ Suffolk County Council resources Suffolk Mylife suffolk.olminfoserve.co.uk MyLife is an information, advice and signposting website that enables people to find social care information in their area that can help them maintain their independence. Mylife has a section specifically for Adults with Autism. Adult Autism Suffolk www.facebook.com/pages/adult-autism-suffolk/ Social Services Customer First -Phone: 0808 800 4005 -Email: customer.first@suffolk.gov.uk
My notes and contacts
The Autism Best Practice Group July 2014