1. A Reflection on the Potential Impact of e-Health Systems on the Prognosis for Asperger Syndrome
Rudi Harmse
Institute for ICT Advancement

2. What is the difference? Why does it matter? Outline
Consumer Focused e-Health Systems
Autism Spectrum Disorder
Asperger Syndrome
Quality of Life
Opportunities and Threats
What is the difference?
Why does it matter?

3. 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

4. Autism Spectrum Disorder
Spectrum of disorders
Common core deficits but diverse symptoms
Changing 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

5. Asperger Syndrome Generally less severe autistic behaviour Higher IQs
Better language skills
Show desire to interact with others but lack social skills
Typically diagnosed later in life
In adults difficulties may be subtle and especially present in
Communication
Social relationships
Interests

6. “Quality of life”

7. Quality of Life (1/2)
Refers to factors that together express personal wellbeing
8 quality of life domains can be recognised:
Emotional wellbeing
Interpersonal relationships
Material wellbeing
Personal development
Physical wellbeing
Self-determination
Social inclusion
Rights

8. 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.

9. 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

10. Information Opportunity Threat Availability Information overload
Misinformation
Disinformation

11. Interactivity Opportunity Threat Clarifying advice
Alternative communication
Links with peers
Access to services
Unreflective responses
Confidentiality breach
Withdrawal
Abuse
Variable quality

12. Openness Opportunity Threat Availability Participation
Premature information

13. Disembodied presence
Opportunity
Threat
Anonymity
Withdrawal
Deception

15. 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

16. Thank You
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