The role of health services in the care of people with autistic spectrum disorders

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The role of health services in the care of people
with autistic spectrum disorders

• Dr Mary Lindsey
• Consultant Psychiatrist

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Key issues

• Context
• Diagnostic issues
• Treatment/ intervention issues
• Role and service delivery issues

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CONTEXT

• Wants of clients (patients, carers, relatives)

AUTISM?
WHAT SHOULD WE DO?
WHY?
FUTURE?
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CONTEXT

• Wants of clients (patients, carers, relatives)
• Needs of clients
• Knowledge and skills of staff
• Knowledge and skills of other agencies
• Nature of relationships
• National policy
• Resource constraints

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DIAGNOSTIC ISSUES

• Disease, disorder or disability?
• A fundamental issue
• Disease implies the possibility of cure
• There are different models of disability

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MEDICAL MODEL OF DISABILITY

• The medical model views disability as a personal
  problem, directly caused by disease, accident or
  some other health condition, and capable of
  amelioration by medical interventions including
  rehabilitation.
• This model is also known as the tragedy or
  charity model
• It tends to stereotype people as ill, powerless
  and dependent on doctors.

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SOCIAL MODEL OF DISABILITY

• The social model, by contrast, sees disability
  not as an inherent attribute of a person but as a
  product of the persons social context and
  environment, including its physical and social
  constructions and beliefs, which lead to
  discrimination against disabled people.

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DIAGNOSTIC ISSUES

• Disease, disorder or disability?
• Diagnostic criteria and their elasticity
• Co-morbid and causative conditions

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Developmental disorders
Learning disability
Epilepsy
Language disorders
Autistic Spectrum
Dyspraxia?
Tic disorders
ADHD
Specific l. diffs
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BEHAVIOURAL and PHYSICAL PHENOTYPES

• Fragile X syndrome
• Tuberose sclerosis
• etc

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Abnorm. brain dev.
Gene fault
Virus
Injury
Causes
Brain disorder
Neuro - chemical
Structural
cingulate gyrus? temporal lobe? prefrontal?
cerebellum? frontal? temporo-parietal? right or
left or both?
Areas affected
?attention ?emotion perception ?theory of mind
?sensory discrimination ?executive function
?sequencing ?planning ?central coherence ?context
dependent meaning ?motor
Core deficits
socialisation
communication
imagination
Core problems
Behaviours
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DIAGNOSTIC ISSUES

• Disease, disorder or disability?
• Diagnostic criteria and their elasticity
• Co-morbid and causative conditions
• Prognosis

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TREATMENT ISSUES

• Specialist health needs
• Autism
• Co-morbid conditions
• Ordinary health needs
• Physical
• Mental

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TREATMENT OF AUTISM??

• Based on cause
• known
• hypothetical
• Empirical
• trial and error
• luck

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TREATMENT OF CO-MORBIDITIES

• Developmental
• Mental/ behavioural
• Individual
• Family and other carers
• Physical

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ORDINARY HEALTH NEEDS

• Health promotion, primary care, specialist
  services
• Issues of access
• attitudinal
• physical
• staff knowledge and skills e.g. communication
  skills

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HABILITATION AND REHABILITIATION

• Role of SALTs, OTs, psychologists, psychiatrists,
  nurses etc.?
• Prevention at every level
• The boundary with education and social care?

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KNOWLEDGE AND SKILLS

• Generic and specialist tiered teaching

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The problem is understanding.
the solution is understanding people are the
resource
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KNOWLEDGE AND SKILLS

• Generic and specialist tiered teaching
• Overlap essential but causes role confusion
• The boundary of NHS with education and social
  care needs on-going negotiation

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COMPLEXITY NOT SIMPLICITY

• Complex problems have simple solutions that do
  not work.
• Not dealing with autism but its efects/
  consequences
• Systemic/ strategic not linear
• Problem solving techniques not recipes
• Multi-faceted and multi-skilled approaches needed

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COMPLEX SOLUTIONS

• Multi-agency working
• Care-pathways
• Negotiation and clarification at every level
  (within teams, between agencies, between
  commissioners etc.)
• Culture change can do not cant do
• Multi-disciplinary and carer training and
  information
• Standards of good practice rather than
  prescriptive dictates.

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NATIONAL POLICY and LEGISLATION

• Valuing People
• Disability policy and legislation
• DoH policy and legislation generally
• Care standards
• Inspection
• Resources

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CONCLUSIONS about the role of health services in
the care of people with autistic spectrum
disorders

• Impossible to clarify role without involving
  other agencies
• There is an individual process of shift from
  medical to social conceptualisation of disability
• Diagnosis is a complex process that needs to take
  into account the family and various professional
  perspectives

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CONCLUSIONS about the role of health services in
the care of people with autistic spectrum
disorders

• Often NHS staff take on roles by default because
  other professionals are not empowered (or
  skilled). Sometimes they deliberately opt out
  because of resource issues
• It is important to identify and address co-morbid
  conditions
• Knowledge and skills need to be tiered.

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CONCLUSIONS about the role of health services in
the care of people with autistic spectrum
disorders

• NHS staff must work hand in glove with relatives,
  other teams and agencies
• Negotiation and planning is an ongoing process
• Culture change underpins this
• But resource constraints do require focus

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CONCLUSIONS about the role of health services in
the care of people with autistic spectrum
disorders

• The delicate balance between role clarity and a
  holistic approach is only achieved by joint
  working
• Effective joint working is extremely difficult to
  achieve in an effective and efficient way and
  requires skills and commitment.