The Issy Kolvin Memorial Lecture

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(No Transcript)
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UK initiatives on ASD

• National Service Framework for Children, Young
  People Maternity Services (NSF) 2004 -
• a more integrated approach across education,
  health and social services
• Aiming high for disabled children May 2007 -
  call for good data

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Development of Daslne

• Purpose
• Parental empowerment
• Service planning
• Epidemiology
• Research

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Purpose of Daslne

• Parental empowerment
• Consent
• Parents advisory group
• Equal access to data
• Raises profile of ASD

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Purpose of Daslne

• Parental empowerment
• Service planning
• Numbers
• Locality
• Needs of child/ young people
• Needs of families
• Representative consultation

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How did Daslne get started?

• Discussion ad hoc Working Party
• Support from parent organisations, professionals
  managers
• Funding applications
• Northern Rock Foundation
• Local Authorities

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Start up phase

• Branding
• Information sheet and Consent form
• Parent and professional questionnaire
• Ethical permission
• Database design and storage
• Launch in October 2003

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Public profile

• Logo and Acronym
• Flyers other promotional materials
• Website
• Newsletters
• Media coverage
• Newspaper and TV features
• Conferences and local events

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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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Local Co-ordinating Groups

• 6 districts Newcastle Northumberland North
  Tyneside Gateshead South Tyneside Sunderland
• Positive response and support from local
  co-ordinating groups
• Production of a shared list
• Distribution of Daslne packs
• Second approaches
• Procedure for newly diagnosed children

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Current status

• Survey phase
• Children born 1993 and later
• Minimum estimate 980
• (basis 6 per 1000 allow for age at diagnosis)
• Provisional lists show 1025

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Current statusWhat the data tell us

• 600 children on database
• 26 families with more than one child with ASD
• Additional problems reported by parents
• Dyspraxia 10
• ADHD 13
• Learning difficulties 37
• Epilepsy and other medical conditions 9

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Type of school
7
28
51
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Statement of special educational needs 63
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Behaviour problems
48
37
26
51
39
36
40
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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 reports

• 1) A voluntary organisation
• Information on numbers for the development of
  effective services, eg. autism-specific holiday
  playscheme
• 2) Feasibility study for a North of Tyne Autism
  resource
• Analysis of the numbers and needs of the most
  challenging children.

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Daslne challenges

• Unique database
• Maintain momentum for families professionals
• Successful partnerships across North East
• Ongoing recruitment
• Funding
• Data available on website by request
• www.ncl.ac.uk/daslne