A Reflection on the Potential Impact of e-Health Systems on the Prognosis

for Asperger Syndrome

Rudi Harmse

Institute for ICT Advancement

Outline

Consumer Focused e-Health SystemsAutism Spectrum DisorderAsperger SyndromeQuality of LifeOpportunities and Threats

What is the difference? Why does it matter?

Consumer Focused e-Health Systems

Aim to empower users:• To take greater responsibility

- for their own health- general wellbeing

• By providing - relevant- cost effective services - at the point of need.

This requires understanding the needs of the consumers.Especially if the consumer population has:

• Different cognitive processes• Different reactions to medications

Autism Spectrum Disorder

Spectrum of disordersCommon core deficits but diverse symptomsChanging understanding of prevalence

• Once thought 0.04% with 70-80% severe learning disability• More recently 0.6% with 80-90% normal learning ability

Triad of impairment:• Communication• Social skills• Behaviour inflexibility

Asperger Syndrome

Generally less severe autistic behaviourHigher IQsBetter language skillsShow desire to interact with others but lack social skillsTypically diagnosed later in life In adults difficulties may be subtle and especially present in

• Communication• Social relationships• Interests

“Quality of life”

Quality of Life (1/2)

Refers to factors that together express personal wellbeing8 quality of life domains can be recognised:

• Emotional wellbeing• Interpersonal relationships• Material wellbeing• Personal development• Physical wellbeing• Self-determination• Social inclusion • Rights

Quality of Life (2/2)

Renty and Roeyers (2006) found that among individuals with an ASD:• The support characteristics were a greater determining

factor on quality of life than the disability characteristics themselves

The most important factors found were:• Perceived (as opposed to actual) informal support • Unmet formal support needs

Therefore both perceptions and specific needs of individuals should be addressed to improve quality of life.

Opportunities and Threats

In this section the discussion will be guided by the work of Tantam (2006) “Opportunities and risks in e-therapy” and is divided into 4 categories:• Information• Interactivity• Openness• Disembodied presence

Information

OpportunityAvailability

Threat Information overloadMisinformationDisinformation

Interactivity

OpportunityClarifying adviceAlternative communicationLinks with peersAccess to services

ThreatUnreflective responsesConfidentiality breachWithdrawalAbuseVariable quality

Openness

OpportunityAvailabilityParticipation

ThreatPremature information

Disembodied presence

OpportunityAnonymity

ThreatWithdrawalDeception

Category Opportunity Threat AS characteristics Information Availability Information overload +Intense focus

+Persistence -Executive control issues -Relevance of focus

Mis-/Disinformation -Literal interpretation -Trusting

Interactivity Clarifying advice Unreflective responses -Social conventions -Excessive openness Confidentiality breach

Alternative communication

Withdrawal +Relative verbal strength

-Social anxiety

Links with peers

Abuse -Prone to victimization +Desire to socialize

Access to services Variable quality -Inconsistency in diagnosis -Susceptible to side-effects +Value of intervention

Openness Availability Premature information -Develop own theories Participation +Systemizing ability

Disembodied presence

Anonymity Withdrawal +Nonverbal deficits -Behaviour reinforcement Deception -Socially naïve

The goal

E-health systems should be designed to operate with• A person-centered methodology• Providing the means to strengthen social support networks• Providing support tailored to specific needs• Preserving individual control during the process

Researchers and system developers should engage with the autistic community to ensure that such systems are relevant and appropriate

Thank You

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