Challenges Faced by Families

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Challenges Faced by Families

• For NAS Conference
• 19 September 2008

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we are .

• John Dickinson
• Joshua Muggleton
• Steve McGuiness
• Virginia Bovell

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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?

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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

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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?

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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 arent any, please say why
  not)
• what things help or could help to reduce
  these?

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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?

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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?

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Josh

• The need to make ourselves appear normal - like
  wearing a mask or a costume
• peoples 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

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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

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pressures for Josh as a sibling

• my sister cant have many friends round
• one of my brothers intentionally winds the other
  up, and doesnt 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.

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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.

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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

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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

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John continued

• Now shes an adult
• Less structure outside formal education
• Balancing independence and protection
• Serious mental health problems exacerbated by
  lack of statutory agency support
• Uncertain future

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Question time!

• Social model?
• Medical model?
• Alternative models? .
• Are models helpful?