Cygnet for Parents
Trainer’s Guide
Supporting parents with children
on the autistic spectrum
Session 1: Autism and diagnosis
Session 2: Communication
Session 3: Sensory issues
Session 4: Understanding behaviour
Session 5: Managing behaviour
2013
EDITION
Acknowledgements
The Cygnet parenting support programme has been developed and evaluated
since 2003 with a variety of individuals, groups and agencies collaborating and
contributing towards its eventual publication, in particular:
•All the young people and adults on the autistic spectrum who have helped to inform
the development of the programme.
•All those many parents who contributed informative and anecdotal information.
•Claudia Dickinson for her initial research on the programme which laid the
foundations for Cygnet.
•Andy Morris for his continued and ongoing research and development of the
programme.
•All of the following agencies who contributed to the Cygnet programme in a variety of
meaningful ways:
– Barnardo’s Queens Road Services
– Bradford District Care Trust Child & Adolescent Mental Health Service
– Education Bradford’s Autism Spectrum Team
– Bradford Children’s Social Care Service
– Bradford & Airedale NHS Teaching Primary Care Trust
(Speech & Language Therapy Service)
– Airedale NHS Trust (Speech & Language Therapy Service)
– Bradford and District Autistic Support Group
– Airedale and Wharfedale Autism Resource
Funding for the development of this programme has been provided by Barnardo’s and
Bradford Child and Adolescent Mental Health Partnership.
Published by Barnardo’s, Tanners Lane, Barkingside, Ilford, Essex IG6 1QG www.barnardos.org.uk
© Copyright Barnardo’s, 2013. First published 2008. Second edition 2010.
ISBN 978-1-907645-01-3
All rights reserved. No part of this publication may be reproduced, stored on a retrieval system or
transmitted in any form or by any means without permission of the publisher. Permission for the
purchaser to reproduce the accompanying activity sheets and handouts, for their own use in delivering
the programme, is hereby granted by the publisher.
For further information please contact: Cygnet Training Co-ordinator, Barnardo’s, Queen’s House,
Queen’s Road, Bradford BD8 7BS. Tel. 01274 4481183
Illustrations © Copyright Andy Pearson Copyediting and design: Richard Reeve
Barnardo’s Registered Charity Nos 216250 and SC037605 12399-5/RRD13
Introduction
1 Cygnet core programme content
2Terms
3 Background to the programme
4 Programme approach
6 An evidence-based programme
9 Facilitating and organising a Cygnet group
– Recruiting parents/carers
– Setting up a group
– Family delivery
– Starting the first session
– Group Agreement
– Confidentiality
– Activities and group exercises
– Parents with additional needs
– Try this at home
– Fun
13 Tips and challenges for trainers
– Major challenges
– Partnership working
– Not the font of all knowledge
– Programme fidelity
– Complaints
15 Skills, knowledge, experience and support
– Skills, knowledge and experience
– Training
– Support
– Finally
18References
19 Software and system requirements
Introduction
Cygnet core programme content
The Cygnet core programme is divided into six sessions, each lasting
two-and-a-half to three hours, and a possible follow-up session.
Session 1: Autism and diagnosis
Introduction to the group
Aims
Content
Introduction to ASCs
What is it like to be autistic?
Experience of diagnosis
Session 2: Communication
Why and how do we communicate?
Communication in ASCs
Strategies to aid communication
– Visual supports
– Social Stories: what they are and how to use them
– Comic Strips: what they are and how to use them
Session 3: Sensory issues
What are the senses?
Types of sensory issues seen in ASCs
Associated behaviours
Strategies to help
Session 4: Understanding behaviour
Types and functions of all behaviour
Behaviour and autism
Underlying difficulties behind the behaviour (Iceberg principle)
Session 5: Managing behaviour
Using the information (Iceberg principle)
Analysing and managing behaviour (STAR analysis)
Key strategies
Management strategies
1
Introduction
Session 6: Choice decided by parents/carers
Evidence suggests that at the end of the programme, parents
will still have questions they want to come back to or a piece of
previous work they want to go over again. This session provides
a good opportunity for tying up those loose ends or looking at
different subjects, for example*:
• siblings
• puberty and sexuality
• transitions
• sleep.
Follow-up meeting – three months after Session 6
Running this session offers parents the opportunity to meet
up again for mutual support and to obtain further information,
and allows facilitators to obtain long-term outcomes from the
confidence rating questionnaire. Parents quite often like to make
this session a social occasion which may have nothing to do with
autism!
* These are a few of the additional (not core) sessions which parents have expressed an
interest in and have been discussed informally with parents as a session. The Siblings
session has now been developed as a formal session and others will follow after further
consultation. These topics can be delivered in Session 6, at the three-month follow-up
meeting or as one-off sessions at random times throughout the year if parents have
attended the core programme.
Terms
Parents/Carers – the Cygnet programme can be accessed by either
parents or carers. Carers can be anybody with meaningful direct
involvement in a child’s life, eg, grandparents, uncles, aunts,
shared carers or support workers from school. They should attend a
programme with the consent and alongside the child’s parents. For the
purposes of the text in this publication the word ‘parent/s’ will often be
used to include both parents and carers.
Children/Young People – the Cygnet programme can be offered to a
wide age range of parents with a child/young person on the autistic
spectrum. For the purposes of the text in this publication the word
‘children’ will often be used to cover the age range 7-18 whilst accepting
that some can clearly be defined as young people.
Autistic Spectrum Condition (ASC) / Autistic Spectrum Disorder (ASD)
– many hours could be spent agreeing the correct terminology but, for
2
Cygnet for Parents
Introduction
the purposes of the text in this publication, the term Autistic Spectrum
Condition will be used after consulting with a group of young people on
the autistic spectrum.
Trainers – a trainer is a practitioner or parent with the skills,
knowledge and experience to act as a facilitator for Cygnet programmes.
Background to the programme
It is acknowledged that parenting is a challenging job! Research has
suggested that 75% of parents and carers want help with their parenting
at some time or another during the years when their child is growing
up1. This has also been acknowledged in recent legislation and the latest
government strategies primarily targeted towards families linked with
the criminal justice and child protection systems.
Parents of children on the autistic spectrum face the usual positive
and difficult challenges of parenting and quite a few more. The autistic
population is vulnerable to an extent that’s not widely recognised, in
childhood and also in later life. Mental health, criminal justice and social
services bear the later ‘hidden’ financial costs. Families not only bear
financial costs but emotional and social costs throughout the life of the
individual and, in the case of suicide, when their life is over.2
Bradford and District has a higher than normal prevalence of disabled
children. The identification of Autistic Spectrum Conditions has also
had a correlated significant increase over many years in Bradford.
In response to this demand and the hidden costs to families and the
authority, a Multi-Agency Autism Group designed an Action Plan for
Bradford and District in December 2002. Top of their recommendations
was the need to provide appropriate support and training for families,
particularly those with older children. This view was reinforced in the
National Autism Plan of 2003:
“Training for families must be ongoing as individual needs change
according to age and circumstances. All authorities should offer a
variety of training courses for parents/carers in the understanding and
management of ASC and any additional behavioural difficulties.”3
After a diagnosis, parents and carers can have a lot of questions and
may feel isolated in managing their child’s needs. Children and young
people’s needs also change over time, and information and advice
received when a child is younger may need to be updated to be relevant
for the child/young person as they get older. If parents have attended
Cygnet for Parents
3
Introduction
Early Bird or Early Bird Plus or equivalent programmes, they may
also wish to access a programme for older children and young people.
As there was a demand but little opportunity for parents to access
local programmes for older children and young people on the autistic
spectrum, Barnardo’s – with the support of young people, parents and
other agencies – devised its own parenting support programme, known
as Cygnet, for those with children in the 7–18 age bracket.
Programme approach
As its starting point, Cygnet acknowledges parents as the experts when
it comes to their own children.
No-one knows a child as well as a parent, yet becoming a parent does not
come with any instant qualification or training pack. Most of what we
learn usually comes from watching other parents, relatives and friends.
Usually this works fine and we can learn fairly quickly from a number of
other sources on general childcare. A child on the autistic spectrum will
present all the usual parenting challenges plus quite a few more, and
there are not many places to go for advice and mutual support. Cygnet
can fill this gap by putting in place the following building blocks.
Building on parents’ knowledge of their child and their positive child
care experiences
The model Cygnet has followed to build on parents’ knowledge and
experiences comes from the Centre for Parent and Child Support known
as the Parent Adviser Model4. Initially developed to support families of
disabled children, it is now used with a range of families at risk from
psychosocial difficulties. The model came from parents’ concerns that
they were not being listened to by professionals, who they felt focused
almost exclusively on the management of children’s problems, without
taking account of their adaptation to difficult situations.
Over a number of years a core group of professionals and parents has
been entrusted with developing the Cygnet programme based on the
principle of listening to the needs of parents and young people. This
process is supportive in its own right by facilitating parental self-esteem
and self- efficacy, and is also the vehicle for the exploration of possible
difficulties and joint problem solving throughout the programme. This
inclusive approach was acknowledged with a National Training Award
in 2008 in the partnership and collaboration category.
4
Cygnet for Parents
Introduction
Using available knowledge on autism and behaviour management
techniques
Having stressed the application of the Parent Adviser Model to the
parenting situation and emphasising communication in understanding
and managing autism, there are other important bodies of knowledge
that have been valuable in developing and delivering the programme.
A wide range of parents and academics from Brenda Boyd to Lorna
Wing have helped with our understanding of autism and its challenges
throughout the programme. However, perhaps the most helpful source
of our understanding has come from young people and adults with
an Autistic Spectrum Condition who have told us first hand of their
experiences and how other people can make a positive difference to
their world.
The Behavioural Model5 based on the central notion of trying to
understand behaviour in terms of what one can observe and then
working out what caused the behaviour – i.e. what’s beneath the surface
– is part of the Cygnet programme. So too is the development of the idea
by social learning theorists6 particularly in relation to autism, that a
child’s behaviour is specific to certain situations. So, an action that’s
followed by positive outcomes (e.g. reward) is likely to be reinforced or
strengthened (i.e. more likely to occur in the future). Conversely, an
action that is not followed by a positive outcome is likely to be decreased
in strength. Both of these models are particularly highlighted in
Sessions Four and Five.
Presenting programmes in a relaxed and varied format with practical
applications
Any programme is only as good as the facilitators delivering it! Some
of us will remember good teachers at school. What was it that made
them good? It was their knowledge and organisational skills and their
attitude, too. Similarly a relaxed, empowering and supportive attitude
in facilitators is a key ingredient in providing a successful Cygnet
programme.
The Cygnet programme approach reflects the various learning styles
that people prefer to use to absorb information and learn from it:
• visual learners – like to look at illustrations, pictures, diagrams,
written steps – also often used with children and young people on the
autistic spectrum
• auditory learners – like to listen and talk with clear explanations,
discussion and verbal feedback
Cygnet for Parents
5
Introduction
• kinaesthetic learners – like to take part to learn; they need to
participate through practical activities and movement.
By providing a mix of approaches in an environment that doesn’t
remain one-dimensional, the programme can offer opportunities for
all. In response to parents’ wishes, those opportunities need to include
strategies that have practical applications.
Developing a mutually supportive environment where parents can
share advice and experiences
“I feel supported being around other parents who understand autism
and my emotions. We share problems, offer advice and feel better
knowing that we are not alone in what feels like a different world to
other parents.”
A parent’s comment after completing the Cygnet programme.
It’s important to remember that within the clearly defined structure of
the programme, learning is often taking place that is not immediately
apparent. As parents listen to each other and reflect on weekly events,
they may experience a shift in attitude between sessions. A high level
of awareness from facilitators can reinforce and support these changes
but not necessarily direct this process. Indirect learning can take
many forms and should always be valued as it provides a unique and
important perspective in the learning process.
An evidence-based programme
In Bradford the quality of the core Cygnet programme has been
measured since 2006 through the evaluation of each session and by
considering the longer term difference the programme has made to
parents’ confidence in relation to managing the needs of a child with an
autistic spectrum condition.
Over many years Cygnet has developed and updated its programmes
based on parental feedback and a range of local and independent
evaluations. Below are links to the most robust and comprehensive
study of the Cygnet parenting support programme which was part of
York University Research for DfE (March 2012).
This is an overview of the findings from research considering
behavioural interventions for parents of disabled children regarding
their child’s sleep or day-time behaviour (Beresford, et al., 2012).
6
Cygnet for Parents
Introduction
The first element of the research comprised of two rapid, systematic
reviews of the evidence on the effectiveness of behavioural interventions
to help parents of disabled children manage their child’s sleep or
day-time behaviour problems (McDaid and Sloper, 2008; Beresford,
2009). Both reviews concluded that there was evidence to suggest that
parent-training interventions based on behaviour theory and behaviour
modification principles may, for at least some parents of disabled
children, be effective. The reviews also noted, however, that good
quality, robust evidence in the area is very limited and called for studies
which adopted more rigorous designs including the use of comparator
groups. In addition, the lack of research into parents’ experiences of
receiving such interventions was highlighted.
The Department for Education commissioned a suite of investigations
exploring the effectiveness, user and practitioner experiences of four
behaviour management interventions including Cygnet and four sleep
management interventions for parents of disabled children. A summary
of the report, The research report, published in 2012, included the
following summary of findings relating to Cygnet:
•Progress in attaining goals for improved child behaviour and standardised
measures of parents’ sense of competence and parent-report child behaviour
were used to assess the effectiveness of the intervention. Outcomes were
compared to a waiting list control (or no intervention group) at postintervention and 12 and 24 week follow-up.
•Significant progress towards attaining parent-set goals for child behaviour
was recorded at 12 week and 24 week follow-up.
•Programme attendance was associated with improvements in parents’
sense of competence, especially their satisfaction with their role as a parent. Improvements in role satisfaction were maintained at 12 week follow-up. •The sizes of improved scores on the measure of Parenting Sense of
Competence for the intervention group were relatively small at the end
of the programme but increased at 12 (Satisfaction subscale) and/or 24
week follow-up (both Satisfaction and Efficacy Subscale). The substantial
improvement on the subscale capturing parents’ sense of efficacy seen at
24 week follow-up needs to be interpreted with caution due to the moderate
effect size found at 12 week follow-up for the waiting list control group. •Programme attendance was associated with a reported improvement of
the frequency (ECBI-IS) and severity (ECBI-PS) of challenging behaviours.
These improvements were maintained at 12 and 24 week follow-up but were
not large enough given the study’s sample size to be statistically significant.
•Programme attendance was also associated with statistically significant
improvements in parents’ reports of the frequency of challenging or difficult
to manage behaviours in the home (CCBS). These improvements were
Cygnet for Parents
7
Introduction
Appendix C: Intervention C: Overview of the investigation and key findings
CYGNET Parenting Support Programme
A 6 week, group delivered parent-training programme for parents of children
with Autistic Spectrum Conditions (ASC).
£2,390
Mean costs of delivering the intervention
Research
design
Controlled trial: intervention (IG) & waiting list control (CG) groups. Outcomes
measured pre- & post-intervention; 12 & 24 week follow-up (IG only). Intervention
integrity=97%. IG & CG well matched at baseline. IG recruited from 7 deliveries of
CYGNET.
Sample
IG= 35; CG=33. Retention rates: post-intervention=82%; 12 wk f/up=76%; 24 week
f/up=77%.
EVIDENCE ON EFFECTIVENESS 7
Post-intervention
12 week
follow-up
--
91%
PARENT-SET GOALS (%
improved)
Effect size statistic
24 week
follow-up
89%
8
PARENTING SENSE OF COMPETENCE: Satisfaction subscale (Satisfaction with the parenting role)
IG
0.33
0.55
0.48
CG
-0.18
0.20
--
PARENTING SENSE OF COMPETENCE: Efficacy subscale (Feelings of efficacy as a parent)
IG
0.18
0.14
0.59
CG
0.11
0.41
--
EYBERG CHILD BEHAVIOUR INVENTORY: Intensity scale (Frequency of disruptive behaviours)
IG
0.02
0.18
0.24
CG
-0.20
0.07
--
EYBERG CHILD BEHAVIOUR INVENTORY: Problem Scale (No. behaviours perceived as a problem)
IG
0.52
0.77
0.80
CG
-0.06
0.28
--
IG
0.20
0.32
0.20
CG
-0.15
-0.04
--
CHALLENGING CHILD BEHAVIOUR SCALE
7
Intervention effectiveness was examined using tests to measure the statistical significance of changes in
scores on outcome measures (ANCOVA), and tests of clinical significance (i.e. reliable change, effect size,
movement around clinical cut-off points). Full reports of these analyses are presented in the project report.
Here we present effect size data only. 8
The effect size statistic quantifies the difference between scores taken at two time points. 0.2 is defined as
a ‘small’ effect size, 0.5 as a medium effect size, and 0.8 as a ‘large’ effect size. Effect size is calculated by
dividing the difference between the means by the pooled standard deviation. A negative effect size indicates
deterioration. 8
Cygnet for Parents
Introduction
maintained at 12 week follow-up with only a slight deterioration at 24 week
follow-up. •The larger effect sizes and increased reliable change scores for the ECBIProblem Scale in comparison to the ECBI-Intensity Scale indicate that to
some extent, whilst their child may still be exhibiting some of the problem
behaviours – they are no longer seen as problematic to the parents who have
attended the parent-training group.
•The consistent positive movement of mean scores from parents who attended
the parent-training group for the goal-attainment ratings, reports of parent
competence and child behaviour in comparison to those on the waiting list is
encouraging evidence for the positive impact of the programme. •Set in the context of the outcome analysis, these cost results suggest that
the additional expenditure on this intervention may have the potential to
reduce costs to other services over time as well as generating encouraging
outcomes for children and parents.
See page 143 and Appendix C, Managing behaviour and sleep problems in disabled
children: An investigation into the effectiveness and costs of parent-training
interventions, Department for Education, March 2012. Download at: https://www.
education.gov.uk/publications/standard/publicationDetail/Page1/DFE-RR204.
See also Report Summary: download at https://www.education.gov.uk/publications/
standard/publicationDetail/Page1/DFE-RR204A
Associated publications:
Raghavan, R. 2008. Cygnet Autistic Spectrum Training Programme for Parents:
Evaluation Report. Northumbria University.
Barnardo’s 2006-10. Barnardo’s Cygnet Service (2006-2010) Evaluation Reports.
Barnardo’s, Queen’s Road, Bradford.
Robson, K. 2010. Birmingham CAMHS Cygnet Evaluation. Birmingham CAMHS.
Facilitating and organising a Cygnet group
Recruiting parents/carers
Many parents may feel anxious about attending a group particularly if
they feel they are going to be judged or are on their own. They may also
feel there is a certain stigma about attending ‘parenting classes’.
For successful recruitment, parents and practitioners will need to
consider the following:
•
Clarity about what the Cygnet programme is and who it is aimed at:
– Who is a carer?
– Are there geographical boundaries?
– Is there a need for a diagnosis?
– Is there an age range?
• Clear signposting to the programme; leaflets, posters, word of
mouth, etc. This will be helped by strong links between agencies,
Cygnet for Parents
9
Introduction
particularly those providing diagnostic and educational support
services to families. An example of a local leaflet is available from the
programme developer.
• A clear and equitable enrolment procedure (an example of an
enrolment form is available from the programme developer). Home
visiting may be helpful for vulnerable families. It’s also helpful to
remind parents of the programme a few days before it starts.
• The programme should be delivered free of charge to all parents.
• The timing of the programme; enabling as many parents to attend
as possible – i.e. where possible offering choice about daytime
and evening programmes, supporting child care away from the
group setting.
• To develop recording mechanisms which allow you to measure
output and outcomes (an example is available from the
programme developer).
• Engagement in a process that feels relaxed and friendly and
demonstrates from the outset that parents will be valued
and respected.
Setting up a group
A co-coordinator/trainer needs to consider several areas before setting
up a group and before parents come in the door.
• Make sure you have a pool of knowledgeable trainers (professionals
or parents) who can preferably deliver the programme in pairs over
the full course of the programme. (See trainers’ skills and support.)
• It’s recommended that there are no more than 12 parents/carers
attending a group. This is a comfortable size group and gives all
parents the opportunity to be heard.
• Consider the impact of location on parents’ attendance, ensuring
locally based, convenient locations which are welcoming, spacious
and, importantly, have tea and coffee-making facilities. Local autism
support groups can sometimes provide helpful venues where parents
can continue to meet afterwards.
• Remember the following – laptop, projector, disc, trainers’ manual,
parents’ notes, handouts, activities, flipchart paper, pens, Blu-Tak
and evaluation forms.
Family delivery
One of the benefits of the Cygnet programme is its potential to be used
flexibly in family homes. For a variety of reasons, parents may not or
cannot attend groups. Skilled practitioners can deliver the programme
10
Cygnet for Parents
Introduction
in a family home in a very positive, bespoke way. However, because of
capacity and time constraints it may not be possible to deliver the whole
programme on this basis but having the first session in a family home
can provide:
• an initial understanding of autism at a level and pace suited to
individual family needs
• an opportunity for parents to get an initial understanding of autism
and the programme before attending group sessions.
Starting the first session
First impressions are very powerful in all walks of life and that’s why
it is so important to provide a really positive impression when parents
first attend a group.
Set out the room, preferably in a semi-circle preferably without desks, so
it’s conducive to information sharing and mutual support. Remember,
it’s not a classroom!
The way we behave towards group members and the personal attitudes
we reflect, are as important as our knowledge, training skills and any of
the programme principles or techniques.
It is also important that you are organised, can offer clarity about the
programme, and can share your expectations about how and who
will be facilitating the group and when. Parents appreciate knowing
who the trainers are at the start of a programme and welcome the
group dynamics not being changed by the introduction of additional
practitioners or observers. (See trainers’ notes session 1 slide 1.)
Group agreement
Whilst you want to provide a positive and relaxed atmosphere, it’s
important to have a framework in which all participants have the same
opportunities to learn and contribute. The group agreement helps you
to maintain boundaries on behalf of the group; because its contents
should reflect everyone’s wishes, they can be referred to if the group
becomes difficult to manage. (See trainers’ notes session 1 slide 1.)
Confidentiality
Probably the most important group rule – what is said in the group
remains in the group and is not to be shared with other people. This rule
applies as much to professionals as it does to parents. The one exception
relates to a trainer or parent having serious concerns about the
safeguarding of children. In these circumstances, local child protection
procedures should be followed.
Cygnet for Parents
11
Introduction
Activities and group exercises
An icebreaker exercise at the beginning of the first session helps
parents get to know each other and find if they have things in common.
It also lets them experience talking in a group, which some may find
difficult. Icebreakers and other group exercises sometimes go round in
a circle, although to reduce anxiety it may sometimes be better to get
feedback in random order or let people choose to opt out of an activity.
The trainers’ notes give guidelines on when to break people into groups
and do activities. This gives variety and helps to counterbalance the
effect of uneven contributions. Shy members may find it easier to speak
in smaller groups, particularly if they are given the opportunity away
from the more vocal members of the main group. Small group exercises
can provide a positive way of managing any uncertainties or difficulties
within the larger group. (See Tips and Challenges to Trainers.)
Parents with additional needs
Parents who wish to join a group may have additional needs, e.g.
reading and writing, visual difficulties, hearing difficulties or
physical difficulties and some parents maybe on the autistic spectrum
themselves. Effective trainers will be able to adapt the session to ensure
that everyone is included, for example: sit opposite someone who
prefers to lip read; work alongside somebody with literacy difficulties or
keep them in a group with a family member; think clearly about issues
to do with autism if there is a parent on the spectrum in the group.
Try this at home
At the end of each session parents are encouraged to think about the
information or try out the strategies discussed during the session and
bring a response to the group the following week. Whilst not putting
too much pressure on parents to provide a response, particularly in the
early stages, this activity encourages the belief that nothing will change
unless tried at home.
Fun
This is probably the most important message to get across. The purpose
of the group is serious but the sessions can nevertheless be fun. This
is not rocket science! If the sessions are one-dimensional, the trainer
appears disinterested or the parents feel patronised or threatened, they
will not come again. Conversely, a session with a lot of variety and an
interesting and interested trainer who’s attentive to parents’ needs is
more likely to encourage parents to come back.
12
Cygnet for Parents
Introduction
Tips and challenges for trainers
Major challenges
There are many and varied challenges a trainer will potentially face but
there are three that can be categorised as major challenges. Any one of
these can undermine the effectiveness of a group:
1. Someone who dominates a group.
2. Someone who is not taking an active part.
3. Two or more people who are in a conflict situation.
Someone who dominates a group
• Summarise the major points that they have made. This will either
encourage other people to comment or move the discussion to a
different phase.
• Ask the dominant person a factual (rather than attitudinal or
opinionative) question. When they answer, ask someone else or the
group what they think.
• If questions just keep coming and it’s becoming difficult to move off
the subject, summarise outstanding issues to be parked (car park) on
the flipchart for more discussion at a later time.
• Refer back to group rules about letting all participants have their say
in the group.
Someone who is not taking an active part
• Shy/uncertain – allow them time to settle, put them together with
someone who’ll be supportive, ask a factual question to include them
and draw them out by moving to open questions which require a
more detailed response, gradually give them more responsibility.
• Arms folded, bored, and uncommunicative – try and engage them
with the group by using open/closed questions and give them
responsibilities in small groups. During the break try and engage
with them to see if you can find out why they appear so negative.
Suggest options if the group does not appear to meet their needs.
Two or more parents who are in conflict
• Try to be diplomatic and not appear to be taking sides.
• Draw attention to the object of the discussion.
• Summarise and remind parents of the areas of agreement and get
them to agree to move on or deal with the issue later.
• See if other group members can help resolve the issue without it
becoming personal.
Cygnet for Parents
13
Introduction
Partnership working
One of the big strengths of a programme like Cygnet is the importance
it places on young people, parents and professionals working together.
As already outlined, this has been paramount in the development of
the programme but is equally as important in its delivery especially in
relation to:
• joint agency/parental delivery – two trainers should deliver the
programme. Whilst acknowledging that it’s not always possible to
have practitioners from different agencies delivering the programme,
parental or joint agency delivery is recommended. This provides a
powerful message to parents, showing agencies and parents working
together and also provides parents with a broader overview of local
services and resources
• co-leading – it’s important that there is a respectful, honest and
supportive partnership between the two trainers, especially if it’s
agreed that one will take more of a lead than another. Amongst many
other things trainers will need to think about are:
– setting time aside for preparation
– how they are going to divide up the session
– agreeing whether it’s OK for co-leaders to ‘chip in’ on each other’s
presentation to offer support when a particular point is being made
– being able to move each other on or slow it down if the pace isn’t
right. Visual prompts or timers maybe useful!
– leaving time to debrief (see Skills & Support).
• providing a measured response to parents’ questions – it can be
easy for trainers to collude with parents in their fight for services
against other practitioners and organisations. Many of these may be
very real and warranted but a trainer shouldn’t indulge in negative
discussions which can make life more complicated for parents in
the long-term. For example, it’s not helpful to advise parents to go
to a solicitor or MP unless you have all the facts and understand
the policy and procedural context of the complaint. This approach
ultimately can be emotionally draining and waste time and money.
If there is a grievance against a practitioner/agency, the trainer
can acknowledge parents’ difficulties and perhaps look at where
appropriate support mechanisms may be available within the local
context.
Not the font of all knowledge
Group members may see you as having the answers to all their
questions. Remember you’re not the font of all knowledge nor should
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Introduction
you try to be! It’s OK to say “I don’t know” or “I’ll find out” and portray
an image of being comfortable with not having all the answers.
Programme fidelity
Consider how you’ll balance being flexible enough to respond to parents’
needs whilst maintaining programme fidelity, that is, keeping the
structure and content of the programme faithful to the original design.
If you divert too far from the original programme, outcomes become
difficult to measure, i.e. you are not evaluating Cygnet but something
else. To ensure the Cygnet parenting support programme is used
appropriately Barnardo’s asks all providers of the programme to sign a
licence agreement prior to purchase.
Complaints
Stage 1 – if parents are not happy with the service they’re getting, and
are not able to sort out their concerns with the trainer/s providing
the service, they need to be directed towards Stage 2 of the process
by making a formal complaint, either in writing or verbally, to the coordinator of the programme.
The co-ordinator will initially respond to the complaint from an
organisational and practical stance to enable the continued smooth
running of the programme in the best interests of all parents in the
group. The complaint itself will then be investigated by the organisation
with management responsibility for the trainer concerned, reporting
the outcomes to the parent, practitioner and programme co-ordinator.
Skills, knowledge, experience and support
Skills, knowledge and experience
To deliver a Cygnet programme you will need some very specific
benchmark skills, knowledge and experience to ensure positive
outcomes.
Lead trainers – whilst it’s accepted that the ‘best’ trainers are not
always those with the highest qualifications, Cygnet recommends the
lead practitioner should minimally hold a relevant degree or equivalent
with at least two years’ experience of working/living with people on the
autistic spectrum. They should also preferably have an understanding
and experience of working with groups in a supportive environment.
Co-trainers – as a minimum it’s recommended that co-trainers have
qualifications which show their skills in child care or specifically
autism. Attendance at autism-specific training is also an advantage.
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Introduction
They should have at least two years’ experience of working/living with
people on the autistic spectrum. Groupwork skills can be built up with
the support of the lead practitioner, supervision or through training.
Once co-trainers have delivered successful Cygnet programmes, with
agreement from the co-ordinator they can take on the responsibilities of
lead trainers.
A minimum of two Cygnet lead trainers will need to complete an
experience skills and training information form as the first step
towards becoming an approved Cygnet trainer. It is then the
responsibility of the authority/organisation purchasing the programme
to ensure all additional trainers have the necessary skills, knowledge
and experience (as indicated above) to deliver a Cygnet programme.
Training
Previous training – as well as the skills, knowledge and experience
already outlined, the sort of previous training which would be helpful in
becoming a future Cygnet trainer would be:
• Early Bird or Early Bird Plus training
• train the trainer or training skills courses
• PECS, TEACCH or other autism-specific training.
Cygnet training – some potential trainers may have all the necessary
skills, knowledge and experience alongside a clearly set out programme
to deliver Cygnet. Others may have these key qualities but decide to
undertake Cygnet training because it gives them a much better picture
of how the delivery of the programme is modeled in a clear ideological
and practical framework. (Outlines of training proposals are available
from the programme developer.)
Shadow training – there may well be the opportunity for potential copractitioners, with all the necessary key qualities and required training,
to shadow an experienced lead trainer whilst they deliver a full Cygnet
programme with the consent of parents in the group. This will provide
a positive opportunity to get a real feel for the programme and delivery
style before, perhaps, taking on part of a session themselves with
agreement from the lead practitioner and parents.
Support
Trainers need to have the time away from other commitments to deliver
the programme consistently and successfully. This includes:
• time for appropriate training
• time for preparation
• time for delivery and write-ups
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Cygnet for Parents
Introduction
• time for support/supervision.
Informal support – at the end of each session the two trainers need to
put time aside to debrief and gather their thoughts. They may also want
to confirm their plans for the next session.
Management support – organisational and preferably clinical support
should be provided for trainers on a regular basis (at least once a
month) by a professional/s with relevant knowledge within their own
organisation. The importance of this support is good reflective practice
and it’s also an opportunity to look at personal and organisational
constraints which may impact on programme delivery.
Co-ordinator support – Locally, there should be a lead practitioner
who co-ordinates Cygnet programmes who is available to provide
ongoing support for trainers, particularly if they’re not able to access
management support, e.g., parent trainers. The co-ordinator is also
a repository for all group materials at the end of a programme and
provides a final debriefing.
Nationally, the Cygnet co-ordinator is available for any information or
concerns relating to:
• the content of the programme
• additional materials
• evaluative feedback
• training or booster training.
Finally
Managing the needs and challenges of a child on the autistic spectrum
is a big responsibility and very hard work. There is no magic solution
which is going to change that but – with Cygnet and others offering
the right tools, with parents’ and carers’ commitment and a consistent
approach – together we are making a difference.
“We both found the course very supportive, informative
and very useful. We don’t always get things right but we
get things right more often since Cygnet.”
Parent’s comment, three months after completing Cygnet
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Introduction
References
1. Sure Start Children’s Centres: (2006) Practice Guidance, HMSO.
2. Willey, L: (2003) Asperger Syndrome in Adolescence: Jessica Kingsley.
3. Le Couteur, A et al: (2003) National Autism Plan, National Autistic Society.
www.cafamily.org.uk
4. Davis, H et al: (2002) Working in partnership with parents: The parent adviser
model, Pearson Assessment.
5. Skinner, B: (1974) About Behaviourism, Cape.
6. Bandura, A. (1977). Social Learning Theory: General Learning Press.
7. K Sofronoff, M Farbotko: The effectiveness of parent management training
to increase self-efficiency in parents of children with Asperger’s Syndrome,
Autism 2002 Vol 6(3) 271-286.
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Cygnet for Parents
Introduction
Software and system requirements
The five Cygnet session slideshows use the Adobe Acrobat pdf file
format. Some slides include video and animation. To play these it is
recommended that Adobe Acrobat Reader 8 and Adobe Flash Player 9 are
installed on the computer, available as free downloads from www.adobe.
com. For best results when playing back sound it is recommended that
speakers are plugged into the computer.
Minimum system requirements to run Adobe Acrobat Reader 8 and
Adobe Flash Player 9 are:
Windows
Any of:
• Microsoft Windows Vista
• Windows XP Professional (Home Edition or Tablet PC Edition) with
Service Pack 2
• Windows 2000 with Service Pack 4
with Windows Media Player 7.
Macintosh
Mac OSX v10.4.3 with QuickTime 7.0
If you encounter difficulties, please contact your IT systems support or
visit the following websites for troubleshooting tips:
www.adobe.com/support/products/acrreader.html
www.adobe.com/support/flashplayer/
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