your autism pathway information for users and carers
TRANSCRIPT
Care and Support Services
Your Autism Pathway
Information for Users and Carers
Leicester, Leicestershire and Rutland Your Autism Pathway
FOREWARD
Autism is a lifelong condition. The word ‘spectrum’ is used because; this condition affects people in different ways although all people with autism share certain common (core) problems. Autism is sometimes described as a ‘hidden disability’, not only because it has no physical signs, but also because adults with autism are some of the most excluded, and least visible, people in the UK. People with Asperger syndrome are a particularly ‘hidden group’ of people within the Autism spectrum. We had a Strategic Asperger Syndrome Planning Group for Leicester, Leicestershire and Rutland (Asperger Planning Group) for some time. The group has widened its remit to include everybody on the Autistic Spectrum. We are currently revising our terms of reference and the local action plan in order to adopt the requirements of the guidance and become the Autism Strategy Group for Leicester, Leicestershire and Rutland. The aims of this group as recommended in the National Autism Strategy and the guidance from the National Institute of Clinical Excellence are:
Establish a clear and effective system for diagnosis of autism.
Establish a system for comprehensive needs assessment involving the
individual with autism as well as the family.
Ensure that good information about the support that is available to people
Ensure access to community opportunities and universal services as any
other citizen. Ensuring that universal services know how to make reasonable
adjustments for people with autism;
access to personalised support if needed
An effective response from providers of services and support; to raise
awareness of the Condition and training for front-line services in how best to
support people who have the condition.
We hope the information provided in this pack will give you a better understanding of the actions taken to develop and strengthen services and support that are available locally in order to improve the lives and outcomes of people on the autistic spectrum and their families. More importantly we would like to invite you to be part of this development. Please ask for more information on how you can help in this effort. Contact details: Jane Forte Planning & Commissioning Manager, B5 New Walk Centre, Welford Place, Leicester LE1 6 ZG Tel. 0116 2528784 Email: [email protected]
Thinking about Autism
Getting an Autism assessment
Diagnosis
Support for understanding the condition
What is Autism?
How can I find out more about Autism?
Who needs training on Autism?
Information and support for
education / employers / police and other organisations
What can GPs do?
Who can diagnose Autism?
How long is the waiting list?
What will happen at the assessment?
How long does an assessment take?
Who makes the diagnosis?
What goes into the report?
Who sees the report?
What happens if Autism is not
diagnosed?
Information on the diagnosis and what it means
Practical day to day help
Support to come to terms with the
diagnosis
Meeting the needs
Who can help with the assessment?
What support is available to meet
the person’s needs?
How will the person with autism / their carer be supported in making
decisions about their care?
Information and support for education / employers / police and
other organisations
General resources
Your Autism Pathway: What happens?
Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people and the world around them.
It is a spectrum condition, which means that, while all people with autism share certain areas of difficulty, their condition will affect them in different ways. Some people with Autism can live relatively independently, while others require a lifetime of specialist care. Asperger Syndrome and High Functioning Autism are part of the spectrum condition.
Thinking about Autism
What is Autism? 1
Go Back To Pathway
The Three main areas of difficulty in Autism (Often called the Triad of impairments)
Social interaction difficulties centre on the person’s ability to understand and take part in social situations with other people. Difficulties range from disinterest / avoidance of social contact, through passive acceptance of interactions with no attempt to reciprocate, to making one-sided approaches on their own terms, to very formal, stilted interactions. Social communication difficulties include problems using and understanding spoken language, body language, gesture and facial expressions for social purposes. People with Autism may have a delay in processing spoken language; this can affect how they respond to the spoken word. Some people with Autism may speak very little, or only to get their needs met; others may use very repetitive language; still others may talk about their interests and needs whenever it suits them and whatever the situation. Rigid and repetitive ways of thinking and behaving include simple repetitive actions or movements, complicated repetitive rituals, collecting objects to excess, being obsessed with a particular topic (Sometimes called having a ‘Special Interest’), living by a fixed timetable or routine, and difficulty coping with change or unexpected events. People with Autism have significant difficulties in imagination and predicting the consequences of actions. Ritualistic behaviours can create structure and comfort for the person in a highly unpredictable world.
What is Autism? 2
Go Back To Pathway Thinking about Autism
Common associated problems
Learning Disability - Autism occurs in people of all intellectual ability levels; however it is more common in association with a Learning Disability. Asperger Syndrome and High-functioning Autism are forms of Autism which occur in association with normal / higher intellectual ability levels. Mental health problems are more common in people with Autism, especially anxiety disorders and depression, and may require treatment in their own right. Psychoses (Including Schizophrenia), however, are not more common than in the general population. Sensory issues are extremely common in Autism. People can experience over- or under-sensitivity in any modality (Vision, hearing, touch, pain, smell) and this can be a cause of significant distress and disability, unless addressed. Sensory assessment and integration treatment carried out by specialist Occupational Therapists can help with this. Sleep problems are common in people with Autism, including day-night reversal and frequent awakenings. These difficulties are some of the most troublesome and disruptive for carers and family members to cope with. Sleep hygiene measures and establishing a good bedtime routine are important. The use of the natural hormone Melatonin has been found to be helpful in some people with Autism – this is currently prescribed by certain Specialists, including Psychiatrists. Dietary issues are also common. Problems can include only eating a restricted range of foodstuffs / certain brands, a dislike of certain textures, or rituals connected to mealtimes e.g. only using certain items of crockery, refusal to allow foodstuffs to touch on the plate. Dietician advice and support may be needed to help manage any dietary imbalances and challenges.
What is Autism? 3
Go Back To Pathway Thinking about Autism
More information on the diagnosis, management and useful resources can be found at: http://www.autism.org.uk/
How can I find out more about Autism?
All professionals and support staff who work with / come into contact with people with Autism need training. This includes people working in Social Care, Health Care, Education, the Police, voluntary sector organisations and Criminal Justice System. Practitioners should contact their own organisation in the first instance to find out what training is available, however the following services and organisations can also be contacted: Autism Champions Network Multiagency Autism Training Link Carers and family members may also wish to access training and information services. This may be available through the Care Services supporting the person with Autism; alternatively you can contact Autism champions network for guidance: Autism Champions Network The City and County Special Needs Teaching Service (Autism Support)
Who needs training on Autism?
Go Back To Pathway Thinking about Autism
Getting an Autism Assessment
If you think that you, a family member, or someone you support, may have Autism, and that it would be helpful to have this assessed, speak to the person’s General Practitioner (GP). The GP will need see the person and an informant (usually a family member or carer) to find out more information about what the difficulties are, and whether an Autism assessment is needed. The GP may also complete a short checklist of common difficulties found in Autism. It can be helpful to make a list of difficulties and concerns to discuss with the GP at the appointment. The GP will then write a letter to the appropriate service, to ask them to carry out an Autism assessment.
What can GPs do?
In Leicester, Leicestershire and Rutland, Autism assessment services are provided by Leicestershire Partnership NHS Trust:
Children are referred either to Community Paediatrics or CAMHS
Adults without a Learning Disability are referred to the Adult Autism Asperger Assessment Service
Adults with a Learning Disability are referred to the Adult Learning Disability Service
Who can diagnose Autism?
Go Back To Pathway
A clinic appointment will be made by the Service for the person to be seen
within 6 weeks.
How long is the waiting list?
The first appointment will be with a Psychiatrist or Psychologist who is experienced in assessing people with Autism. The Psychiatrist / Psychologist will need to talk to the person and their informant about the person’s difficulties in more detail, to see if further assessment for Autism is needed. Further appointments will then be arranged, as needed. These may include:
Diagnostic interviews – detailed questionnaires completed with a family member or carer, by a trained professional
Observation sessions – with the person themselves, using structured tasks in the clinic or by visiting the person’s home / workplace
What will happen at the assessment?
Assessment is usually completed within 3 months; however it may occasionally take longer than this in complex cases.
How long does an assessment take?
Go Back To Pathway Getting an Autism Assessment
Diagnosis
At the end of the assessment process the Psychiatrist / Psychologist will talk to the person about what they have found and whether a diagnosis of Autism can be made
Who makes the diagnosis?
The Psychiatrist / Psychologist will then write a report, setting out the findings from the assessment and details of any diagnosis. The Psychiatrist
/ Psychologist will discuss with the person and share their report What goes into the report?
A copy of the report will be sent to the person’s GP. A copy will be sent to the person, for them to keep. A copy will be kept in the person’s clinic file. Further copies can be sent to other professionals, such as the person’s Social Worker or employer, at the person’s request.
Who sees the report?
The assessment may find that the person’s difficulties are more likely due to another condition e.g. ADHD (Attention Deficit Hyperactivity Disorder), communication problems, social anxiety etc. The person will then be referred on for further assessment / support for that condition. In complex cases it may be difficult to be sure if the person has Autism. A multidisciplinary assessment can be useful to help clarify the person’s difficulties more accurately. If there is still uncertainty after this, then a second opinion may be requested from another experienced practitioner.
What happens if Autism is not diagnosed?
Go Back To Pathway
Support for Understanding the Condition
At time of diagnosis, the person will be given an information pack, which contains further information about Autism and how to find out more. The following sources of information are also useful: > http://www.autism.org.uk/ > Information hub
Information on the diagnosis and what it means
It is important that help in managing common problems is available to the person at all stages of the care pathway process. Practical Problem Solving is a way of doing this, and can be provided by any professional who has an understanding of Autism. Training on how to provide this support can be obtained through Multiagency Autism Training Link.
Practical day to day help
After diagnosis, there will be opportunity for the person and carer / family member to ask questions and discuss any concerns with the professionals involved in the assessment process. The professionals will also signpost them to sources of help and support in the voluntary sector: > Voluntary sector hyperlink
Support to come to terms with the diagnosis
Go Back To Pathway
Meeting the needs
After diagnosis it is important to determine what help and support the person needs due to their Autism. An assessment will be carried out to look at the person’s strengths and difficulties. The assessment will be carried out by the most suitable professional, depending on the primary area of need, for example a Social Worker for housing and employment issues, or a Psychiatrist if mental health issues are the priority. The assessor will then refer the person to the appropriate service(s) for further assessment, help and support, and / or signpost them to suitable sources of help.
Who can help with the assessment of needs?
A wide range of services are available to help meet the person’s support needs. Here are some examples: Voluntary Sector provide advice and information, run support groups
Voluntary sector hyperlink Social Care provide support with housing, managing finances,
activities, employment Social care hyperlink Education provide training and support services around
accessing education Education hyperlink Healthcare support for mental health and behaviour needs,
communication difficulties, sensory issues, daily living skills Health hyperlink
What support is available to meet the person’s needs?
Go Back To Pathway
Meeting the needs
It is important that the person with Autism and their carer receive appropriate help and support to make informed choices. Accessible information will be made available to help with this process. During the assessment process, the person with Autism, their carer and the professional(s) need to clearly identify what the person’s needs are, and how these are going to be met. Each time the person is seen, the professional needs to check if this is happening and if enough has been done. Tools such as the PROM (Patient Reported Outcome Measure) and Spectrum Star TM may be used to help with goal-setting and measuring progress.
How will the person with Autism / their carer be supported in making decisions about their care?
The following resources and organisations can provide useful help and advice on Autism and supporting people with Autism: Autism Champions Network Adult Autism Asperger Assessment Service Adult Learning Disability Service LEAT
Information and support for education / employers / Police and other organisations
Go Back To Pathway
Meeting the needs
The following links will help you find out more about Autism and services which can help: National Autistic Society Contact: The National Autistic Society, 393 City Road, London, EC1V 1NG. Telephone: 020 7833 2299 Fax: 020 7833 9666 Email: [email protected] Website: www.autism.org.uk NAS Leicester Contact: NAS Leicestershire Service, Grovebrook House, Brook Street, Whetstone, Leicester, LE8 6LA. Telephone: 0116 286 6956 Fax number: 0116 275 2217 Email: [email protected] Website: www.autism.org.uk/leicestershire Leicestershire Autistic Society Contact: Lindy Hardcastle Telephone: 0116 291 6958 Email: [email protected] Translate Contact: Paul Sandford Telephone: 01509 554797 Email: [email protected] Website: www.translate-asc.org.uk
General resources (page1)
Go Back To Pathway
Meeting the needs
Calma Project Contact: Curtis Matthew, Coordinator, Calma Project, 54A Alexandra Street, Thurmaston, Leicester, LE4 8FA. Telephone: 07742 959155 Email: [email protected] Leicester Asperger Syndrome Support Group Contact: Shelagh Wilson Telephone: 0116 270 1074 Email: [email protected] Website: www.aspergerleics.org Loughborough ASD Support Group Contact: Carole Heubeck Telephone: 01530 244790 Email: [email protected] Market Harborough Spectrum Support Group Telephone: 07831 349574 Group email: [email protected] Group website: www.spectrum-mh.org.uk Melton and District Autism Support Group Contact: Lesley Brown Telephone: 01664 565155 Asperger Friendship Group / Rutland ‘A’ Friendship Group Contact: Naomi Edwards, Inclusion Development Worker, Rutland County Council, Catmose, Oakham, Rutland. LE15 6HP Telephone: 01572 758412 E mail: [email protected]
General resources (page 2)
Go Back To Pathway
Meeting the needs
Rutland and Melton SIBS Support Group Contact: Dorothy Spence Telephone: 01572 756747 SPACE Castle Donington Support Group Contact: Sara Goodwin Telephone: 01530 461660 Specialist Healthcare Services Adult Autism Asperger Assessment Service Contact: Professor Terry Brugha, c/o Brandon Unit, Leicester General Hospital, Coleman Rd, Leicester LE5 4PW Telephone: 0116 225 6927 Fax: 0116 225 5979 Email: [email protected] Learning Disability Service Contact: Learning Disability Service, Mansion House, Leicester Frith Hospital, Groby Rd, Leicester, LE3 9QF. Telephone: 0116 225 5274 Fax: 0116 225 5272 Social Care Services Leicester City: Adult Social Care Service and Learning Disabilities Service Contact: 1 Grey Friars, Leicester, LE1 5PH. Telephone: 0116 252 7004 Email: [email protected] Leicestershire and Rutland: Rutland Social Care Services Contact: Adult duty team, Catmose, Oakham LE15 6HP Tel: 01572 722577 Fax: 01572 758375 Email: [email protected] Leicestershire Social Care Services Contact: Adult Social Care, County Hall, Glenfield, Leicester, LE3 8RL. Telephone: 0116 305 0004 E-mail: [email protected]
General resources (page3)
Go Back To Pathway
Care and Support Services Your Autism Pathway
Service User and Carer Feedback
We want you to tell us your views about the pathway, and the supporting information, so we can make things as clear as possible for you and your carers to get support when you need it. User/carer Information 1. Is the pathway clear that it is for all people with Autism? Yes No Comments 2. Thinking about Autism This section is about “building a community that understand and accept autism” as recommended in the National Autism Strategy: Please tell us if the options we have considered in this section are- Helpful? ………………………………………………………………………….
Clear?…………………………………………………………………………. Unhelpful?……………………………………………………………………… How can we improve this? (your comments please) 3. Getting an Autism Assessment This section is about making it easier for people to have the Autism assessment? Please tell us if the options we have considered in this section are- Helpful? ………………………………………………………………………….
Clear?…………………………………………………………………………. Unhelpful?……………………………………………………………………… How can we improve this? (your comments please)
4. Diagnosis This section is about who can make a diagnosis of autism; how will they share the diagnosis report with people with autism, their families and other professionals. Please tell us if the options we have considered in this section are- Helpful? ………………………………………………………………………….
Clear?…………………………………………………………………………. Unhelpful?……………………………………………………………………… How can we improve this? (your comments please) 5. Support for Understanding the Condition This section is about what support needs to be available to people with autism and their carers after the diagnosis is made. Please tell us if the options we have considered in this section are- Helpful? ………………………………………………………………………….
Clear?…………………………………………………………………………. Unhelpful?……………………………………………………………………… How can we improve this? (your comments please) 6. Meeting the Needs This section is about how professionals would assess the needs of the individual with autism and how the person with autism and carers will be supported Please tell us if the options we have considered in this section are- Helpful? ………………………………………………………………………….
Clear?…………………………………………………………………………. Unhelpful?……………………………………………………………………… How can we improve this? (your comments please)
7. The pathway information is available in different formats, please mark your preference: 1= not preferred format, 2 = OK, 3 = preferred format Leaflets giving contact points & information 1 2 3 Comments A flow chart with an over view of the process 1 2 3 Comments Hyper Links to different relevant web sites 1 2 3 Comments Finally, please feel free to add further comments on any aspect of the Pathway you feel can be improved. Thank you for your help. Please return this form completed to Jane Forte either by: e-mail to [email protected] or by post addressed to: Jane Forte Planning & Commissioning Manager, B5New Walk Centre, Welford Place, Leicester LE1 6 ZG