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Appendix 1. INTERVENTION MANUAL for SAFE (Systemic Autism-related Family Enabling): an early intervention for families of children with autism and Asperger Syndrome Professor Rudi Dallos and Dr Rebecca McKenzie Timescale: 5 half days. 5 fortnightly sessions The intervention manual has been developed from the following bases of evidence and clinical experience: 1. Systemic Family Therapy. Systemic Family Therapy focuses on promoting positive changes in the relationships within families rather than the isolated behavior of individuals in the family (Dallos & Draper, 2015). Difficulties are seen to be maintained or exacerbated by family dynamics including the organization of families, communicational patterns and repetitive interaction sequences of problems. The combination of these is encapsulated in the idea of the formation of ineffective attempted solutions to their problems which rather than offering solutions can aggravate their difficulties. Systemic Family Therapy embodies a range of approaches and techniques for helping families to explore and re-organise their understanding, relationship patterns, emotional connections and problem-solving abilities (e.g. Monteiro, 2016). It typically involves a therapist and a supervision team working with one family at a time with close monitoring, based on feedback during and at the end of each session exploring the relevance, helpfulness and applicability of the therapy. Where supervision teams are not available a more flexible model - ‘in room consultation’ can be employed whereby two therapists support each other in a structure where one therapist takes on the role of monitoring the family’s reactions as therapy proceeds and periodically offering feedback as a form of live supervision. A development of this orientation is Multi-Family Therapy whereby groups of families work together to assist and facilitate change, effectively acting as consultants for each other. The SAFE program employs both these versions of Systemic Family Therapy with three single family sessions to explore in detail each family’s needs; and two group sessions using concepts and techniques from Multi-Family Therapy 2. Multi-Family Therapy Multi-Family Therapy is a recognised treatment approach which aims to provide a more empowering, flexible and intensive form of family intervention than single family therapy (Asen & Scholz, 2009). In Multi-Family Therapy similar techniques are employed to those used in single family therapy, but families are encouraged to work together, to be proactive in solving their own problems Multi-Family Therapy aims to help families rediscover their own resources by emphasising how families can take an active role in tackling dilemmas and assisting each other. At the same time families are encouraged to use the group setting to explore how problems have affected family life in consultation with other families and to share their solutions and competencies. This involves a power shift from the therapist-client relationship and encourages an empowering peer-support environment. The sharing of experiences and the dynamics of the group are important components of the treatment. 3. Family Models The SAFE program incorporates a range of concepts and techniques by integrating systemic and attachment based family models, in particular The Circle of Security Intervention (Powell et al., 2014) and Attachment Narrative Therapy developed by co-applicant Professor Rudi Dallos (Dallos, 2006). In the SAFE intervention, these systemic and attachment models have been combined with an emphasis on visual materials and active, play-based approaches designed to be appropriate for families of children with autism. 1 4. Autism friendly SAFE has been developed in collaboration with children with autism and their families to be autism friendly. Given the evidence in the literature for a visual processing style, communication difficulties and restricted interests among people with autism, the advice we have received from families is in line with current research. SAFE incorporates visual materials wherever possible and active, play-based activities. SAFE also acknowledges and works with the children’s talents and areas of special interest. It also recognizes that parents are often extremely well-informed and prefer an approach which recognizes their competencies and helps them to feel empowered rather than de-skilled by therapy. SAFE protocol: All sessions are facilitated by two therapists trained in the SAFE intervention model. Session 1 (3 hours Multi-Family Therapy for parents/carers): Families act as ‘consultants’ for each other exploring: • Introduction and overview of the program, online materials and aims: using ideas from attachment theory, systemic family therapy • Initial discussion, identifying needs, prior experiences of services, what has been helpful and unhelpful • Discussions regarding impact of autism on family life, successes, challenges and problems, comparing themselves to other families • Central concerns regarding autism shared by many families, social anxiety, understanding relationships and emotions • View video tapes illustrating typical problematic scenarios: shopping, preparing to go to school, liaising with school family activities – mealtimes, bedtimes • Strategies for coping, building on successes • Discuss range of feelings generated: sense of failure as a parent, hopelessness, anger, frustration, helplessness and success Break • Description of the Circle of Security (COS) model (See Figure 1 below) to the families. The COS intervention and the graphic designed around it are designed to help parents increase awareness of their children’s needs and whether their own responses meet those needs. With increased awareness parents can expand their moment-to-moment parenting choices where needed. The model, therefore, encourages the potential to break the stranglehold of problematic patterns. Discussion can include: the parents as a secure base and haven, procedural memory, parents’ attachment needs, implicit responding, children as miscuing. • Deconstructing problematic cycles. Mapping a core problem, such as conflicts at bedtime, or mealtime or in a super market in terms of a cycles of actions, thoughts and feelings • Each family will also act as ‘reflective consultants’ to the other families regarding their problems and attempted solutions • Discussing coping strategies in terms of parents’ own childhood experiences what is transferable and what is unique to the challenges of autism Homework: Identify a problematic cycle and draw it is a circular pattern identifying actions, thoughts and feelings. Access the online materials. 2 -‐Watch over me -‐Help m e -‐Enjoy me I need you to support my exploration Secure base Safe haven -‐Protect me -‐Comfort me -‐Help organise my feelings I need you to welcome me back to you Figure 1. Graphic based on the Circle of Security (COS) Session 2 (3 hours home visit - whole family session): • Discussion of homework task • Self/Autism Mapping activity (SAM). SAM is initiated by introducing the child to two figures representing ‘Just me’ and “Me and autism’ (See Figure 2). Redrawing these figures can involve the child engaged in a discussion of the two figures in terms of what is, and is not affected by autism. At a later date a dotted circle is added and the children can identify aspects of themselves about which they are unsure. • The parents discuss the child’s responses and elaborate with their own views of what they regard as typical as opposed to autistic • Parents discuss differences of opinions and perceptions • Developmental perspective, how the influence of the autism may alter in different contexts and, reduce, expand as they develop • Area of Special Interest (ASI). The child and the parents discuss a special interest that many children with a diagnosis of autism show. Such areas can be seen as demonstrating both special abilities and ‘gifts’ but also an indication of the condition. • Therapist and child engage in a discussion around the child’s ASI and focus on how elements of the area may contain metaphors about other aspects of their lives, indirect references to key people in their lives • Parents are invited to engage in the ASI with their child as a way of joining and connecting with them • The family discusses their interest in the ASI along with any concerns that showing an interest may be ‘feeding’ the autism. This discussion will connect with the SAM to consider how sharing an interest with a child is a part of ‘typical’ parent-child relating. Discussion of how the ASI can be used positively to communicate wider issues, but also what they may feel is problematic about the ASI. Break • Consideration of how our own childhood attachment experiences shape how we respond, parenting styles, emotional responses 3 • • Mapping the family’s genogram with a focus on: transitions, similarities and differences between family members, parenting styles, attachment patterns – ways of coping with emotional needs and provision of comfort Trans-generational patterns of ‘autistic’ like symptoms. How families responded, heredity vs relational patterns (cf. SAM) Homework: Identify times in their interactions where they see the child as acting: as a typical child, governed by autism, where they are not sure. Log differences in how they respond at these different times Not sure “Which bits of you are you unsure whether they are affected by the autism or not?” Just Me “Which bits of you are not affected by the autism?” Me and autism “Which bits of you are affected by the autism?” Figure 2 Self/Autism Mapping (SAM) graphic Session 3 (3 hours home visit - whole family session): • Discussion of the homework and feedback • Further discussion of the COS model. Exploration of parents own attachment histories • Corrective and replicative scripts. What they have learnt from their own childhoods in terms of what they want to do differently and similarly as parents • How do their scripts relate to how they act when their child is ‘typical’, e.g. typical ‘naughty’ behavior as opposed to autism • Discuss sense of hopelessness, anger and helplessness that might be generated by the ‘autism’ for the parents and the child • How any feelings of hopelessness, anger and helplessness derive from early insecure attachment childhood experiences, e.g. parents with mental health problems (depression, anxiety) domestic violence, abuse and neglect, substance abuse in parents, emotional unavailability etc 4 Break • View video tape of a family problematic scenario: analyse and discuss in terms of: a) what aspects of the child’s behavior appear to be typical vs autistic, b) how they would respond, c) how their responses would be guided by their own childhood experiences (corrective and replicative scripts, d) their unconscious (procedural) embodied responses • Discuss any feelings of helplessness, anger and hopelessness that appear to be generated in the parents and the child • Role-play typical current problematic sequence at home. DVD record this scenario Homework: - Family to identify a similar problematic interaction at home and keep notes on how they react in terms of their corrective and replicative scripts and feelings. Session 4 (3 hours home visit - whole family session): • Discuss homework and feedback from previous session • View sections of the film footage of their role-play. Discuss in terms of a) what aspects of the child’s behaviour appear to be typical vs autistic, b) how they would respond, c) how their responses would be guided by their own childhood experiences (corrective and replicative scripts, d) their unconscious (procedural) embodied responses, e) competencies and strengths • Family sculpt (using buttons) – mapping of changes in family relationships, intimacy, connections, family patterns: prior to the diagnosis of autism, current family configuration and ideal/ hoped for family configuration. Different family members starts each of the three phases, then the others offer how they see the configurations Break • Story Stem activity - child engages in creating narratives regarding three story-based play scenarios each depicting attachment dilemmas: Getting lost – Little Pigs, Pain – burnt hand, Empathy – Mum’s headache. Story Stems should incorporate ASI where possible and use toy figures appropriate to the child’s age • • Parents respond to each activity, how they would have responded – now and if they had been their child’s age. Discuss attachment dilemmas, how they support each other and their child with such situations. Homework: Keep notes on how they support their child regarding attachment dilemmas, in the Story Stem scenarios Session 5 (3 hours Multi-Family Therapy for parents/carers): Representatives of local support groups, trained SAFE will be present at this meeting. • Discuss homework, focus on attachment dilemmas that may have arisen and how they responded 5 • • View sections of the DVD recordings of the Story Stems Discuss the child’s responses, their ability to engage with the story, play and fantasy, connections to how they see the world How they guide the child regarding such dilemmas The parents’ own experience of such dilemmas and their attachment coping strategies • • Break • Discuss similarities and differences in their perceptions, changes in their relationships, impact of the diagnosis, refer back to SAM • Create a future orientated timeline and discuss problems that may arise and how to overcome them. • Feedback from parents/carers regarding implementing ideas from the programme. • Future challenges and developmental stages that will face the families. On-going support available from local voluntary support workers trained in the intervention, On-going peer support options including the online discussion forum Homework: setting our own goals with COS in mind Overview of the 5 sessions: What has been useful, what they have been able to implement. Future issues dilemmas envisioned. What further support they would wish to have. Developmental perspective: how the influence of the autism may alter, reduce; expand as the child develops cognitively and emotionally. Key references Asen, E., and Scholz, M. (2009) Multi-Family Therapy: Concepts and Techniques, London: Routledge Dallos, R. (2006) Attachment Narrative Therapy: Integrating Attachment , Systemic and Narrative Therapies. Maidenhead: Open Univ. Press/McGraw Hill Dallos, R. and Draper, R. (2015 4th Edn) An Introduction to Family Therapy. Maidenhead: Open Univ. Press/McGraw Hill Monteiro, M. (2016). Family Therapy and the Autism Spectrum: Autism Conversations in Narrative Practice. London: Routledge. Powell, B., Cooper, G., Hoffman, K. and Marvin, B. (2014). The Circle of Security Intervention: Enhancing Attachment in Early – Child Relationships. London: Guilford Press 6
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