SIGN Guideline 98: Assessment, diagnosis and clinical interventions for children and young people with autism spectrum disorders

8 Information for discussion with children, young people, parents and carers

This section reflects the issues likely to be of most concern to children, young people and their parents and carers. These points are provided for use by health professionals when discussing ASD with children, young people and their parents and carers and in guiding the production of locally produced information materials.

8.1 PROVIDING INFORMATION AND SUPPORT

Provision of information should always be viewed as a two way process. The concerns and questions which children, young people and their parents/carers wish to raise should be identified during assessment, and be responded to as far as possible. There is evidence to suggest that parents are more satisfied if they are given good quality information and have the opportunity to ask questions. ^{213, 224}

8.1.1 AT THE TIME OF DIAGNOSIS

Information on the diagnostic process and the roles of children, young people and parents should be explained along with information on the roles of the various professions involved. Parents need to have their early concerns acknowledged and to receive support in the management of their child.^{213, 225-227}

It is essential that parents of children diagnosed with ASD, and children and young people themselves, receive clear, accurate and appropriate written and verbal information about the condition including short and long term consequences. The information should be appropriate to the child’s age, ability level and cultural background and should be provided at a pace that suits the circumstances.

Where feasible and appropriate childcare should be made available for a short time during disclosure of the diagnosis. This would allow parents to focus fully on the information being given and allow for questions.

Consideration should be given to how the diagnosis should be shared. This may require seeing children, young people and parents separately, sequentially or simultaneously. For young people their own engagement and understanding of the diagnosis will be important in negotiating appropriate supports.

It is recognised that this is a particularly stressful period for children, young people and their parents and links forged with local professionals at this time can be helpful following diagnosis.

Surveys of parents reported the importance placed on the quality of the communication skills of the professionals disclosing the diagnosis.^{213, 225-227}A negative experience could affect parental satisfaction and cause added stress. Healthcare professionals should be aware that the absence of clearly defined terminology and uncertainty of diagnosis is difficult for parents. This can be challenging when young people have a mixture of difficulties. Where a diagnosis can be clearly made the use of straightforward terminology in communication to parents is important. When the diagnosis is uncertain (ie borderline according to current diagnostic criteria) then healthcare professionals should explain this situation to parents. In all circumstances healthcare professionals should work with the family to identify how services can meet the needs of the child.

Children, young people and their parents should have the opportunity to ask questions following the diagnosis. It has previously been recommended that follow-up arrangements should be offered once there has been time to reflect on the implications of the diagnosis.¹

Professionals should recognise that children, young people and their parents may have a significant adjustment reaction to the diagnosis and for some this adjustment period may be prolonged and difficult.

ASD affects all aspects of the child’s and the family’s life and the importance of social supports and family networks were noted.^{215, 219, 220, 226, 228} Families are required to take on multiple roles when their child is diagnosed including at times, the roles of co-therapist, and advocate. Supporting family involvement in these roles is crucial and will impact on the success of any intervention.

A number of studies comment on the issue of encouraging families to participate in any decisions related to their child and the importance of feeling that their opinions are valued.^{213, 225-227}

Families require high quality verbal and written information at time of diagnosis. This should include a written report of the outcome of the various assessments and the final diagnosis.

The sample checklist in section 8.3 suggests the type of information required.

Professionals involved in diagnostic disclosure and information giving should receive ongoing education and training.

Children, young people and their parents should routinely receive written information. This may include copies of the letters sent to the various professionals who have been asked to assess their child.

Children, young people and their parents should be encouraged to continue to learn about ASD and useful interventions and support.

8.2 FEEDBACK FROM FOCUS GROUPS

Young people with ASD may themselves make use of this guideline, and it was felt important to obtain as much input from them as possible, in addition to the information provided via parents and professionals, during the work of the guideline development group. Focus group sessions involving an independent facilitator and young people were held in two centres, in different regions of Scotland.

In keeping with the goal of ‘ASD friendly services’, the aim of the focus groups was to hear how young people themselves understood or heard of their diagnoses, to explore what they had found helpful and to ask for their ideas about information about ASD which should be provided.

The young people who took part were a selected sample without learning disability, who knew about their diagnoses of ASD, were of late primary or secondary school age, and were attending specialist educational provision (relevant permission having been obtained). In one centre four young people were seen individually by the independent facilitator, and in the other eight young people met with the facilitator in two small groups. The young people were asked about their diagnosis and how they had been told about it, what was better or worse for them once they knew, what they found helped them, and what they thought others should be told about ASD.

Young people referred to difficult experiences prior to diagnosis, and in their previous schools, including bullying. Most young people wanted to be told the truth and spoke of things being better once they knew what was wrong. The young people thought others should understand and not make fun of them, and often said things were easier when they where in a school where ASD was understood. They thought it was important to know that they were not ‘mad’ or ‘stupid’. The kind of difficulties which they would want others to know about, or be told, included that they needed space, got confused, might lose their patience, found it hard to concentrate, and needed a quiet place to go. Some had read relevant books about ASD and found them helpful, and there were also comments that it would be easier to speak to someone with ASD.

Young people able to contribute to these focus groups were obviously a selected sample but their perspectives emphasise the importance of young people being involved in discussion about diagnosis at some appropriate stage, and being able to contribute to the information others receive about their individual difficulties.

8.3 CHECKLIST FOR PROVISION OF SERVICES AND INFORMATION

This section explains what information parents/carers, and the child or young person as appropriate, can reasonably expect to be provided at the key stages of the patient journey and how assessment and intervention should usually be organised (see sections 3.2 to 3.6 for more discussion of the evidence base).

The checklist was designed by members of the guideline development group based on their clinical experience and their understanding of the evidence base.

Checklist for provision of services and information

Before assessment
Initial professional concerned should: (eg health visitor, teacher, GP)	explain to child/young person and parent/carer that a child/ young person’s behaviour shows various ‘clinical clues’ that may suggest the possibility of an autism spectrum disorder or a social interaction or social communication difficulty (see Tables 1,2 and 3) discuss the advantages and disadvantages of further assessment with the parent/carer (and young person, as appropriate) as they see it and check that they have agreement to organise this healthcare professionals should enquire about any other information which might represent evidence of comorbidity (eg ADHD, depression) or an alternative diagnosis (eg specific language impairment) as far as their expertise allows
Person making referral for further assessment should:	include all relevant information regarding any concerns, the child/young person’s current situation and details of any professionals involved explain the patient/parent’s understanding of the reason for referral consider providing patient/parent with a copy of the referral letter initiate general management/behaviour strategies and family support in the interim, if necessary by involving multiagency colleagues
The specialist team receiving the referral should:	ensure child/ young person and parents receive information about the process which will follow referral, including likely timescale of any pre-assessment and assessment phases, and who will be involved if corresponding with professional colleagues to arrange assessments, consider copying correspondence to families inform the parent/carer that they are welcome to bring a supporter if they wish explain that, if any part of the assessment is to be video recorded, the team will obtain written consent of the patient and/or carer (as appropriate) to retain the recording
At assessment appointment(s)
Specialist team should:	check current understanding of child/ young person and parents/carers, as appropriate, about the reasons for referral and their level of agreement with the concerns of the referring professional explain proposed assessments and agree with child/young person and parent/carer how these will be organised and which colleagues will be involved repeat explanations and revise arrangements as needed
At any feedback appointment(s)
Specialist team should:	allow sufficient time for explanation and discussion of the findings and be sensitive to the potential distress that may arise in the child/ young person and parent/carer and their possible needs to be seen separately find out what child/young person and family understand about diagnosis, and add information as appropriate (eg if a diagnosis of ASD has been made, a member of the team should explain the triad of impairments and how the referred patient’s presentation fits into ICD-10/DSM-IV criteria) offer basic information based on current knowledge re causation, intervention and prognosis, any investigations indicated, and the probable next steps to provide appropriate multiagency supportive intervention, as appropriate provide information about what written feedback will be made available, and check with the child/ young person and parent/carer (as appropriate) how it should be made available to relevant colleagues if any part of the assessment has been video recorded, obtain written consent of the parent/carer and patient (as appropriate) to retain the recording if the patient is considered unable to have the outcome of the assessment explained to them at feedback, discuss with parent/carer how this might be undertaken at a later date and the best timescale in cases of diagnostic uncertainty, discuss with the parent/carer how and when to best review/repeat the assessment, or options for further specialist assessment
Supportive intervention following diagnosis of ASD
Multiagency/ multiprofessionals should: (integrated and collaborative and in partnership with the family)	involve relevant multiagency colleagues (education, social work, voluntary sector, careers advisors, as appropriate) tailor intervention to requirements of individual and family, working in partnership provide further information as needed eg about the triad of impairments or any comorbidity consider implementing specific therapeutic interventions/approaches including for any comorbidity discuss potential educational approaches with the parent/carer and patient (as appropriate), including additional support for learning have in place arrangements for liaising/sharing required information with education services discuss wider family/sibling support, provision of respite, and role of social work assistance provide information about : entitlement to benefits potential voluntary/community supports available parent training opportunities recommended sources of further information organise for the family to have a named contact for ongoing assistance (consider implementing National Autism Plan for Children’s recommendation of a key worker). ²

8.4 SOURCES OF FURTHER INFORMATION

Useful sources of general information on autism spectrum disorders including contact details for local parent support groups across Scotland.

8.4.1 SUPPORT ORGANISATIONS

The Scottish Society for Autism
Hilton House
Alloa Business Park
Whins Rd
Alloa
FK10 3SA
Tel: 01259 720044
Email: autism@autism-in-scotland.org.uk
Website: www.autism-in-scotland.org.uk

National Autistic Society –Scotland
Central Chambers
109 Hope St
Glasgow
G2 6LL
Tel: 0141 221 8090
Email: autismhelpline@nas.org.uk
Website: www.autism.org.uk

NHS Education for Scotland
NES has developed, in conjunction with the University of Birmingham, a learning resource about ASD for primary care professionals, including GPs. This includes a web resource and downloadable leaflets, accessible from www.nes.scot.nhs.uk/asd

NES also has an information booklet for parents and carers of recently diagnosed children or young people. Professionals living in Scotland who are involved in diagnosing ASD have been given copies of this booklet to give to parents. Additional copies can be requested from the Scottish Autism Service Network by calling 0141 950 3072 or by emailing scottishautismnetwork@strath.ac.uk

Scottish Autism Service Network

The Scottish Autism Service Network is a professional network for autism in Scotland. The network will support networking and an information hub.

Tel: 0141 950 3072
E-mail: scottishautismnetwork@strath.ac.uk
Website: www.scottishautismnetwork.org.uk

8.4.2 ADDITIONAL READING

This reading list is not meant to be comprehensive and some books may endorse treatments that are not recommended by the guideline.

The autistic spectrum. A guide for parents and professionals
L Wing. Constable. (1996)

A mind apart. Understanding children with autism and Asperger’s syndrome
P Szatmari. Guilford Press. (2004)

Autistic spectrum disorders: Good practice guidance. Department of Education and Skills.
DfES Publications, Sudbury, Suffolk CO10 6ZQ
www.teachernet.gov.uk/wholeschool/sen/asds

Explaining the enigma
U Frith. Blackwell Publishing. (2003)

People with autism behaving badly. Helping people with ASD move on from behavioural and emotional challenges.
J Clements. Jessica Kingsley Publishers (2005)

For parents of younger children

Autism: How to help your young child.
Leicestershire County Council and Fosse Health Trust (1998)

Autism in the early years. A practical guide.
V Cumine, J Leach and G Stevenson. David Fulton Publishers (2000)

Sleep Better! A Guide to Improving Sleep for Children with Special Needs.
VM Durand. Jessica Kinsley Publishers (1998)

Toilet training for individuals with autism & related disorders. A comprehensive guide for parents and teachers.
M Wheeler. Jessica Kingsley Publishers (1999)

Can’t eat, won’t eat; dietary difficulties and autistic spectrum disorders.
B Legge. Jessica Kingsley Publishers (2001)

Sensory perceptual issues in autism & Asperger syndrome.
O Bogdashina. Jessica Kingsley Publishers. (2003)

Books for siblings

Everybody is different. A book for young people who have brothers and sisters with autism.
F Bleach. The National Autistic Society. (2001)

Can I tell you about Asperger syndrome?
J Welton. Jessica Kingsley Publishers (2003)

Personal accounts (autism)

George and Sam.
C Moore. Penguin Publishers (2004).

Through the eyes of aliens. A book about autistic people.
JL O’Neil. Jessica Kingsley Publishers. (1999)

Emergence labeled autistic
T Grandin. Warner Books. Arena Press (1986)

For parents of older children/adolescent age

Understanding and working with the spectrum of autism
W Lawson. Jessica Kingsley Publishers. (2001)

The Complete Guide to Asperger’s Syndrome.
T Atwood. Jessica Kingsley Publishers. (2006)

Aperger syndrome. A practical guide for teachers.
V Cumine J Leach and G Stevenson. David Fulton Publishers (1998)

Asperger syndrome and adolescence. Helping preteens and teens get ready for the real world.
T Bolick. Fair Winds Press (2004)

A parent’s guide to Asperger syndrome and high functioning autism
Ozonoff, Dawson and McPartland. Guildford Press (2002)

Autism and Asperger Syndrome: Preparing for adulthood. Second edition
Patricia Howlin. Routledge (2004)

Transitions

Transition toolkit. A framework for managing change and successful transition planning for children and young people with ASD.
K Broderick & T Mason-Williams. BILD publications (2005)

Succeeding in college with Asperger syndrome. A student guide.
J Harpur. M Lawlor and M Fitzgerald. Jessica Kingsley Publishers. (2004)

Personal accounts (Asperger’s syndrome)

Martian in the playground.
C Sainsbury. Lucky Duck Publishing. (2000)

Pretending to be normal
L Holliday-Willey. Jessica Kingsley Publishers. (1999)

Eating an artichoke.
E Fling. Jessica Kingsley Publishing (2000)

Freaks, Geeks and Asperger Syndrome. A user guide to adolescence.
L Jackson, Jessica Kingsley Publishers. (2002)

8.4.3 WEBSITES

British Dietetic Association
Provides a range of fact sheets in relation to diet including diet and autism spectrum disorders.
www.bda.uk.com

Careers Scotland
Provides services, information and support to individuals at all ages and stages of planning a career.
www.careers-scotland.org.uk

Enquire
The Scottish advice service for Additional Support for Learning.
www.enquire.org.uk

www.autism.org.uk
The NAS website is extensive, comprehensive and easy to use. Includes information on parent training and support programmes, EarlyBird and Help!

www.asd-forum.org.uk
Asperger and ASD UK Online Forum. Well supported, well organised Internet support group with email discussion and bulletin boards for sharing information.

www.dwp.gov.uk/lifeevent/discare
Information on benefits and disability living allowance.

Skill Scotland
An information and advice service for young people and adults with any kind of disability in post-16 education training and employment.
www.skill.org.uk

HM Inspectorate for Education
Improving Scottish Education. Education for Pupils with Autism Spectrum Disorders 2006
www.hmie.gov.uk/documents/publication/epasd.pdf

section 9>

Guideline Index Page | SIGN Methodology

Scottish Intercollegiate Guidelines Network, Elliott House, 8-10 Hillside Crescent, Edinburgh EH7 5EA
Tel. 0131 623 4720 Fax. 0131 623 4503 Web contact duncan.service@nhs.net
Last modified 10/05/10 © SIGN 2001-2009