1. NAS International Conference 2008 – Family Support Issues affecting the family members of individuals on the autistic spectrum and considerations for supporting professionals.

2. Workshop Objectives Highlight some of the issues affecting specific family members of individuals with ASD Consider ways in which professionals can support and assist families in addressing such issues Emphasise issues directly impacting upon family members, rather than the individual with ASD

3. Presenter Background Twin sister to an individual with ASD High Functioning Autism Moderate Learning Difficulties Self injurious challenging behaviour Extremely rigid Assistant Psychologist working within an NAS school in Kent Particular interest in the needs and experiences of siblings to individuals with ASD

4. Presenter Background Cont…

5. Issues for ‘those’ affected by ASDs The individual with ASD e.g. Accepting their diagnosis Sensory differences Anger and emotion Self injury and challenging behaviour Education and employment Marriage and children The family of the individual with ASD Accessing specialist support services Maintaining ‘normality’ – friends, job, social life Siblings Individual parent roles Inter-parental relationships

6. Specific Issues For parents Between parents For siblings Between the sibling and their brother/sister with ASD For the family as a whole

7. Parents For parents: Accessing help & getting a diagnosis / statement Being isolated / becoming rejected Financial concerns and stresses Meeting the needs of other children Making the right choices Fears for the future

8. Between Parents Differentiation in parent roles: Father Bread-winner, source of income Alterations to the physical environment / adaptations to the home Secondary care-giver Mother Attends appointments and meetings Researches interventions / approaches More ‘home-based’ Primary care giver

9. Between Parents E.g. Father: wants to be more involved in the decision making but cannot access meetings / reviews / appointments etc… Mother: wants more time out of the house away from the situation but feels entirely responsible for maintaining the home, providing care etc…

10. Between Parents The result over time… Resentment and bitterness between parents manifested as arguments and breakdown in communication Limited availability of external support from friends and relatives if the family has become isolated Individual parents become depressed and angry and may not see a way out of the situation

11. For Siblings Knowing what is ‘wrong’ with their brother / sister and understanding his / her difficulties and behaviour…what is ASD? Understanding and accepting differences between their treatment and that of their brother / sister with ASD by parents Explaining to others about their brother / sister Wanting more from their parents in terms of attention and time away from their brother / sister with ASD Limited friendships and relationships with others

12. Between the sibling and their brother / sister with ASD Anger and resentment Guilt Responsibility and over-protection Worry and stress Embarrassment Duty of care for the future and pressure to provide this

13. Between the sibling and their brother / sister with ASD Very early sense of expectation and knowing that the responsibility will fall to them Conflicting emotions in addition to typical ups and downs particularly during adolescence Feeling misunderstood and alone, not wanting to burden parents further

14. The family as a whole A lot of pretence and papering over the cracks Unspoken stresses and strains which never get addressed until the family reaches crisis Isolation, withdrawal and becoming insular Reduced opportunity to access support as time goes by

15. Considerations for professionals Who can help: Schools Specialist organisations / charities (NAS, Sibs) Social Care Health Employers Citizens Advice Bureau / DWP

16. Supporting Parents Activity: Consider the issues raised so far… What does your service currently offer? What more could your service offer? What would you like local services to offer? How can these services be delivered / made available to parents?

17. Supporting Parents Practical Support Benefits and entitlements – support applying for these Altering appointment / meeting times so they become accessible to working parents Home visits for annual reviews and appointments etc… Domiciliary help Therapeutic Support Forums for discussion and inclusion e.g. parent groups Opportunities for parents to liaise with counselling professionals/ psychology services

18. Supporting Parents Cont… Advice and Education Invitations to twilight training sessions Access to information / resources Challenging behaviour and Physical intervention Feeding and toileting Further Education and Adult placement Sensory differences Made available in formats which are accessible to all

19. Supporting Siblings Siblings group are a great way of delivering specialist support, education and opportunity to siblings of individuals with ASD. Siblings groups can be organised and run with minimal cost to the organisation – there are a never ending supply of psychology students willing to volunteer for such projects! There is a a large literature resource specifically for siblings ranging from the very basic through to more insightful and detailed personal accounts.

20. Supporting Siblings Cont... Have you ever considered extending an invitation to siblings to attend reviews/planning meetings etc… This is often extremely fulfilling for the sibling as they feel they are making a positive contribution to their brother or sister’s care and at the same time get the opportunity to offload and share their perspective. The professionals involved often get some very useful and honest insights into family life which enrich parental accounts and compliment observations/assessment results.

21. Conclusions There is always more an organisation can do to support families Never take for granted how pressured and difficult life can be for families, regardless of how the individual with ASD presents in front of you Take time to remember the point of view of siblings Make your service as accessible to all family members as possible

22. Conclusions Cont… Sometimes a simple phone call, done on a regular basis, is enough to build up trust and enable positive working with families Consider cultural issues and respect the insights parents and siblings have to offer Be proactive. Don’t wait until the family reaches crisis. Let them know you are there.

23. Conclusions Cont… Questions??? Anna.neal@nas.org.uk www.nas.org.uk www.sutherlandhouse.org.uk Siblinks www.siblinks.org Young Carers Initiative www.childrenssociety.org.uk/youngcarers Sibs www.sibs.org.uk info@sibs.org.uk 01535 645453