Challenges Faced by Families For NAS Conference 19 September 2008

we are …. John Dickinson Joshua Muggleton Steve McGuiness Virginia Bovell

Questions about “challenges faced by families” what is a family? who poses what challenges and to whom? literature: what are the messages about “challenges” coming from research and other sources?

Messages vs reality? - What the literature emphasises Stress on mothers Adaptation of fathers Parental relationships Depression Psycho-social and health impacts Impact on siblings Sibling behaviours Caregivers’ coping strategies

The questions we asked ourselves For Josh and Steve, as people on the spectrum: what do you feel are the biggest challenges/pressures on you as individuals? do you feel these have repercussions for the rest of the family? (if yes, what are these? and if no, why not?) what things help – or could help – to reduce these pressures/challenges?

more questions for us For Josh as a sibling what do you feel are the biggest challenges on your family arising from having autistic younger siblings? (if there aren’t any, please say why not) what things help – or could help – to reduce these?

more questions For John, Steve and Virginia as parents: what do you feel are the biggest challenges on you as parents of someone on the spectrum? do you feel these have repercussions for the rest of the family? what things help – or could help – to reduce these pressures/challenges?

more questions For John, as parent of an adult / woman on the spectrum: do the challenges change as your child gets older? if yes, in what way? If no, why not? what things help – or could help – to reduce these challenges?

Josh “The need to make ourselves appear normal - like wearing a mask or a costume” “people’s lack of knowledge” “anything that causes stress will always affect the family” “public knowledge …. if people could accept us for who we are, then we may be able to start to let down these masks”

Steve “the way society is arranged” “prejudicial attitudes are learnt at home” “people with ASD are some of the most tolerant people I know” “barriers have been created by non- autistic (non-disabled) people”

pressures for Josh as a sibling “my sister can’t have many friends round” “one of my brothers intentionally winds the other up, and doesn’t understand when he has done something wrong” “…if people had a better understanding of Autism … maybe they would not be so scared of us and so my sister could have friends over, maybe they would not tease or bully our autistic siblings” “family support, a 24/7 hotline with advisers on how to deal when someone ‘kicks off’, better support from the council”.

Challenge for parents Steve “ as our autistic children grow, social demands become more complex” “the constant worry of social isolation and family isolation is also a common problem” “financial issues – bankruptcy, stripping of equity of homes to pay for services like assessments/statements etc” “isolation, confusion, anger, fear, embarrassment, then having to face up to the guilt about having these feelings.”

… parents continued Virginia Gut problem, pain, sleep disturbance, aggression Fight for recognition and support from health and social services (education thankfully ‘sorted’ for now) Constant ‘minding’, restrictions on most aspects of life Solutions are physical space, resources, research, skills  affirmation of Danny

parent of an adult / woman on the spectrum John When she was a child Getting agencies to recognise an indefinite responsibility and a genuine partnership with family Family solidarity but the challenge of contrasting expectations and achievements between siblings Early retirement

John continued Now she’s an adult Less structure outside formal education Balancing independence and protection Serious mental health problems exacerbated by lack of statutory agency support Uncertain future

Question time! Social model? Medical model? Alternative models? …. Are models helpful?