What Is an Autism Spectrum Disorder?

Contents

·  Welcome!

·  What is an autism spectrum disorder?

·  Background

·  Pathway Services

·  Assessment Team

·  Intervention

·  Frequently Asked Questions

·  Key Contacts

St. Helens Autism Spectrum Pathway (SHASP)

Welcome!

St Helens Autism Spectrum Pathway has produced this fact sheet for parents or carers. It aims to provide information about the Pathway, what it can provide and information about local and national support services.

The Pathway is a multi-agency initiative designed to improve services and quality of life outcomes for children/ young people whose needs are on the Autism Spectrum. It is a response to increases in the incidence of Autism Spectrum Disorder in St Helens over the last few years in line with the rest of the country.

The Pathway aims to provide integrated education, health and social care provision by modernising the way statutory agencies work together in partnership with families.

What is an autism spectrum disorder (ASD)?

Autism spectrum disorders (ASDs) are lifelong, developmental disabilities that affect the way a person communicates and relates to the people and environment around them.

Children with ASDs are affected in a huge variety of ways and to very different degrees. This is why it is called ‘the autism spectrum’. Autism can affect children with any level of intellectual ability, from those who may have significant learning needs, to those with average or high intelligence. Some children are more affected by their autism and may have additional learning difficulties. These individuals will require long-term high levels of support. Others may function well - some children with Asperger’s syndrome or ‘high functioning autism’ are very intelligent academically. They may go on to continue to achieve great success. However, they still experience significant social and communication difficulties.

Background

Historically, services and support to children and families have been provided only after diagnosis. By providing provisional diagnosis as soon as possible in the child’s life, the child and their family are able to access preventative and support services at the point when they are most needed and most effective. In turn, this should help to improve the child’s life chances as well as help reduce pressures and strains on families resulting from caring responsibilities.

The Pathway has been developed in partnership with parents by a multi-agency group of professionals from Health, Education, Social Care, The Bridge Centre and the Voluntary Sector. These practitioners sit within their disciplines. The Pathway Coordinator and Administrator can be contacted via the telephone number and e-mail address below.

The ethos of the Pathway reflects current best practice and national policy and legislation in relation to services for disabled children and diagnostic services for autism. It is underpinned by the principle of social and educational inclusion and the social model of disability.
Pathway Services

The Pathway is intended to provide a clear assessment route, so that information is shared with parents and the multi-disciplinary assessment team. At the same time, provision to meet identified needs will be provided, and sources of further advice or support will be signposted. The team will also provide advice, training and support to parents and to other professionals who work with the child and the family

There are 3 aspects to the Pathway

1.  Assessment

2.  Intervention

3.  Training

Assessment

The team aims to produce a profile of the child's abilities and needs, particularly in terms of social/communication development. This may or may not include confirmation of a diagnosis of an Autism Spectrum Disorder (ASD).

Whether or not ASD is confirmed, the team will provide information on the local resources and services, which can help to meet the child's needs. A comprehensive report is shared with the family and with their consent, is also circulated to other professionals.

Intervention:

A range of professionals could provide intervention: Speech and Language Therapist, Specialist Teacher, Social Worker, Teacher, Pre School Support Worker, Portage Worker, Senior Learning Assistant, Early Intervention Worker, Community paediatrician or Educational Psychologist. This group would give support and advice to the young person and family/carers and to other people working with the child and family in educational or other provision. Intervention provides short-term work focused on meeting the child’s needs. It also builds the family’s confidence in supporting their child and linking with other support services. Families will be offered information on local support groups and information centres.

Training:

There is a training strategy for those people who work with children with ASD and the first part of this is to provide courses for families. EarlyBird and EarlyBird Plus training are programmes licensed by the National Autistic Society (NAS), which are available for parents whose child has received a diagnosis of ASD. Other training is available depending on the age of the child.

Pathway Assessment Team

The team aims to provide:

·  A friendly and accessible assessment service in relation to the needs of young children with ASD and their families.

·  An early assessment of need as soon as possible after queries are raised by the family, early years setting or other professionals, about a possible autism spectrum disorder.

·  A clear verbal and written account of the child's abilities and needs for the family which they may then use to negotiate further support from Education, Health and Social Services.

·  Advice on appropriate support in relation to ASD and direct referral to other Pathway services.

Staffing:

The team comprises of:

·  Community Paediatrician

·  Specialist Speech and Language Therapist

·  Specialist Educational Psychologist

·  CAMHS Child and Adolescent Psychiatrist/ Practitioner

·  ASD Specialist Teachers

·  Pathway Coordinator

With the exception of the Pathway Coordinator, all staff in the Pathway Assessment Team work part-time within the Pathway. They have all received specialist training in relation to the assessment of ASD and are knowledgeable about the local services available to support children with ASD and other special needs.

The Pathway Coordinator ensures effective communication between families, team members and schools, and is a point of contact from the initial referral to the final conclusion. The Coordinator may also be present at the Sharing the News Feedback meeting, and offer a Follow Up Home Visit.

Intervention

What Happens Next?

Post Diagnosis:

The next step will be to review the current provision and put an updated programme into place to support you and your child. There are a number of possible options and you will be involved in deciding which is the most supportive for you and your child. You may already receive some of these services. It is possible to access more than one type of support such as:

·  Post diagnosis Follow Up Home Visit. The Pathway Coordinator or your chosen Lead Professional may come to your house to answer any questions you might have about ASD, the assessment process or whatever you feel you might need to discuss.

·  Post diagnosis emotional support. This is an appointment for you and anyone from your family to discuss how you are feeling about the diagnosis.

·  Support through your local Sure Start Children’s Centre.

·  Speech and language therapy.

·  Behaviour, sleep, toileting advice and intervention.

·  School will continue to meet the needs of your School Age child via regular reviews and Individual Education Plans if necessary.

·  Sign Posting to Parent Partnership if necessary.

·  In addition, Early years children might have access to the following:

·  Part time place in a specialist group for children with an ASD.

·  Part time place where your child is supported in a mainstream Children’s Centre or Nursery, which has additional resources.

·  Specialist Outreach support may be offered by Pre School Support Workers who provide advice to settings about your child’s access to learning.

·  Portage. Portage is a home visiting service that offers support, help and advice to families with a young child who has additional needs. Portage workers will assess and provide intervention in the home, to help your child’s development.

·  Placement in a pre-school provision near your home.

Training

Families:

You will be offered a place on the waiting list for the Parent Programmes available depending on the age of your child. This will help you to understand ASD and how it affects your child’s communication, learning and behaviour.

You will be given the contact details for local parent support groups and information centres.

For further information about training and how you or someone you know can access a course contact The Bridge Centre on 01744 673131, or LASCS on 01744 673135.
Frequently Asked Questions

·  My child has been referred for specialist autism spectrum assessments. What does this mean?

The referral to our service means that a professional who knows your child has some concerns about their social interaction and play skills and their social communication skills. Your child may have difficulties with change and new situations, and they may have some behaviour that may be seen as unusual or challenging. Sometimes children have these difficulties for a variety of reasons, and do not fulfil the criteria for a diagnosis of ASD. Some children will go on to receive a diagnosis of autism spectrum disorder. This will provide access to some services and help and support for your child and you as a family. Try not to worry; Professionals will support you through the process from identification to post diagnosis if applicable.

·  Who can refer my child to the Early Years (under 4’s) Pathway Assessment Team?

Referrals to the Assessment Team come through a Multi-Agency General Developmental Assessment (GDA), which is coordinated by Early Years team at The Bridge Centre. There is an open referral system to Early Years Services and the Early Years team may feel your child firstly requires a Multi-Agency GDA. From this initial assessment, the professionals may then recommend further autism specific assessment from the Pathway team. The Pathway Team will only accept referrals made with the family's full agreement and understanding of what the referral means.

·  What happens when my child is referred to the Pathway Assessment Team?

The team will look at the information provided from the GDA and decide how best to provide further assessment and interventions. Before taking further action they may ask for additional information. You will be informed of every stage of the process and you will receive support from the Pathway Coordinator if you do not already have your own Lead Professional.

Your child may be observed and assessed at home, in An Early Years developmental group or in their mainstream nursery setting. You may also receive an invite for your child to attend a standardized assessment called the ‘Autism Diagnostic Observation Schedule’ or ‘ADOS’. This is a tool designed for assessing children with possible ASD by observing the child’s skills during play. We will try to provide you with as much information as possible about the process and the people involved. Sometimes professionals may need to see your children more than once.

·  What happens during the assessment?

The assessments include a detailed interview with parents/carers and sometimes use standard questionnaires relevant to ASD. It also includes observations of your child's play and their interaction with others. If your child has an ADOS, we may ask for your permission to video it, as the assessment team may refer back to the video as an aid to accurate scoring. The contents of the video will remain confidential and will not be used for any other purpose without your permission.

We would also usually want to visit your child’s nursery or school or other familiar place. This is important to give us a picture of your child’s abilities in a more natural setting.

What happens once the assessment is complete?

At the Sharing the News Feedback meeting, we will discuss the assessment fully with you and will tell you what will be said in the report.

·  How long does it take from referral to completion of assessments?

The length of time it will take to complete all assessments and come to a conclusion will depend on the individual child, and the complexities of the case. Some children and young people need more assessments than others, as it might not be clear as to the basis of their difficulties. We may need other agencies to see your child. Some appointments with these other agencies might be subject to a waiting list.

·  What happens if my child gets a diagnosis?

You will be involved in discussing with the professionals involved with your child’s care and education, the most appropriate interventions and in setting targets for them. You will be offered post diagnosis emotional support, and training to help you understand your child’s strengths and difficulties.

You will have the opportunity to discuss any concerns with members of the Pathway team. This person will be able to sign post you to services you may not already be receiving.

You will receive a summary report with individual reports to follow.

·  What happens if my child does not get a diagnosis?

This means there was not enough evidence to suggest that your child met the criteria for a diagnosis of autism spectrum disorder, or their difficulties are due to something else. The Pathway Team will provide a report describing your child's strengths and needs and will, as far as possible, help you to access more appropriate services.

·  Who can refer my child to the School Age (over 4’s) Pathway Assessment Team?

Although the School Age Pathway has an open referral system, we suggest that referrals to the Pathway should be done via your child’s Community Pediatrician/ other health professional/ social care professional/ school/ educational psychologist. This is due to a new pre-referral process being put into place (please see Parents Guide to Pre-referral Process). Your thoughts and feelings will be recorded and documented in the pre-referral process. However, if you feel a referral should be made for your child and the above professionals have not done so, you can make the referral as a parent (This should only be done if three or more of the above professionals have previously seen your child).