Autism surveillance in UK

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Autism surveillance in UK

• Helen McConachie

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Prevalence

• Pre-school children
• Baird et al (2000) autism 31 per 10,000
• autism spectrum 58 per 10,000
• Chakrabarti and Fombonne (2001 (2005))
• autism 17 (22) per 10,000
• autism spectrum 62 (59) per 10,000
• School-age children
• Green et al (2004) autism spectrum 90 per
  10,000
• Baird et al (2006) autism 39 per 10,000
• autism spectrum 116 per 10,000

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Le Couteur et al (2003)
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UK child health surveillance

• Child Health Promotion Programme
• Antenatal care
• Soon after birth
• Immunisation
• Review at school entry (hearing, vision)
• Developmental checks no longer routine
• Response to parent concerns

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Child health registers

• Hutchison Harpin (1998) Arch Dis Ch
• Survey of computerised child health disability
  registers (93)
• Problems of expertise and support
• National Special Needs Information System
  Scotland
• 3178 children in Nov 2004 (53 with autism)

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(No Transcript)
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Daslne is 5 years old
Newcastle Evening Chronicle October 2008

• Launched October 2003
• Partnership parents, professionals, academics
• Aiming high for disabled children May 2007
• calls for good data

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Development of Daslne

• Purposes
• Parent empowerment
• Parents advisory group (eg. consent process)
• Equal access to data
• Service planning
• Epidemiology
• Research
• McConachie et al (2009) Arch Dis Ch, 94, 38-41

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Start up phase

• Branding
• Information sheet and Consent form
• Parent and professional questionnaire
• Database design and storage
• Ethical permission
• Initial survey of children up to age 11 years
• Local professionals compiled local listings
• Prospectively recruit newly diagnosed children

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Database of Children with Autism Spectrum
Disorder Living in the North East
Daslne News 4 Autumn 2006

• What should we include in future Daslne
  conferences?
• Examples of comments
• Small parent and professional workshops to
  generate questions for the panel.
• Workshops on needs identified such as behaviour
  management, bullying.
• Continue to include speakers who have ASD/have
  children with ASD, as this highlights the
  importance of the database.
• More detail on data collected.
• Perhaps some sharing from each district on how
  Daslne has informed practice.
• Local Authority plans for the future, for
  children, young people and adults with autism in
  their locality. How have they planned to budget
  for the increasing numbers of people with ASD?
• How to put pressure on statutory funders to
  provide basic services health, education,
  childrens services, and for diagnosis.
• Updates on research.

• Progress since the Daslne Conference
• We are delighted that there has been a marked
  increase in registrations to the database since
  the Daslne conference in March, with 500 children
  now included in the database.
• We are also in the process of making second
  approaches to families who we know have received
  a pack but have not yet returned their consent.
• Acting on ideas submitted at the Daslne
  conference
• We received a good response to our request for
  ideas at the conference. Some of the ideas now
  being acted upon include
• Publicise Daslne data to organisations.
• Report on numbers who will move from primary to
  secondary school to assist with planning of
  resources.
• Liaise with special schools to arrange insertion
  of a Daslne flyer in school welcome pack
• Liaise with leaders of More Than Words and
  EarlyBird courses to promote Daslne.
• Liaise with Parent Partnership Officers to
  promote Daslne.

Inside this issue Progress Page 1
Sleep Page 2 Causes Page 3
Strategies Page 3 Information Page 4 Team
news Page 4
Special Issue on Sleep!
www.ncl.ac.uk/daslne
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Data validation study

• 40 children chosen at random
• 20 - direct assessment and screening
  questionnaire
• 20 - check of medical notes
• 100 confirmed autism or ASD
• 80 exact agreement on language and ability
  level

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Representativeness

• Compared responders with local listings
• Gender boysgirls, 61 (?2 .28, p.60) ns
• Deprivation (Townsend index) (t5.61, plt0.001)
  but difference small

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Over 800 children on database (of 1400)32
families with more than one child with ASD
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27
51
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2 not known
Type of school
Statement of special educational needs 57
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Problem behaviours occurring 3 times a week or
more
Number of children
Number of problem behaviours
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Support needs

• Many childrens educational needs recognised
• but
• Training needs for staff in mainstream schools
• Overlapping sets of difficulties, therefore
• Leisure activities
• Support to families, especially during holidays
• Advice on managing behaviours

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Daslne contribution to service development

• MAP Multi-agency Assessment Pathway
• Local professionals working together as a team
• Information can be shared on an ethically sound
  basis
• A voluntary organisation
• Information on numbers for the development of an
  autism-specific holiday playscheme

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Research studies

• 10 studies supported with recruitment
• Daslne anxiety survey children aged 9 yrs
• Spence Childrens Anxiety Scale
• 210 parents
• 79 children
• 44 receiving help

• On average, comparable to children with anxiety
  disorder

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Daslne Strengths Weaknesses

• Unique database
• Confidential
• Families contribute to research
• Surveys of needs, Regional comparison
• Data available on website by request
• www.ncl.ac.uk/daslne

• Finance unstable
• Dependent on local enthusiasm
• 60 coverage
• Misses children with some other impairments

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Future

• ASD Research Family Register (application)
• UK national prospective database through
  paediatricians
• EU Autism Epidemiology study (application)
• 11 European sites, including Daslne
• through health and education records (cf CDC)
• UK version of Interactive Autism Network (IAN)
  (application)
• Family, child and adult volunteers for research