Autistic Spectrum Disorder Developing Best Practice

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Autistic Spectrum Disorder -Developing Best
Practice
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Facilitator Annette English 1.30 Welcome and
introduction from Sheena McDonald,
Chair 1.35 Initiatives from across the country
and West Midlands work on ASD - Annette
English 1.55 ASD Transition toolkit - Heather
Boadle 2.10 KS2 and 3 curriculum - Mick
Connolly 2.25 Kar2ouche - Chris Lloyd 2.45 End
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Regional Initiatives on ASDs

• Annette English
• Regional Facilitator
• West Midlands SEN Regional Partnership
• 7th June 2005

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Aims for this session

• To introduce you to
• The work of the SEN Regional Partnerships on ASDs
  with a particular focus on the work in the West
  Midlands

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SEN Regional Partnerships Total of 11
Partnerships nationally Involving all 150 LEAs in
England
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Regional Initiatives on ASDs

• Training SW SCRIP EM WM
• Conferences EM NW SERSEN WM
• Networks /Sharing practice EM YH SERSEN SW
  NW WM
• Video/DVDs SW
• Info to parents/professionals YH WM SERSEN
  NW Merseyside
• Early Intervention/research SERSEN WM

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West Midlands Region focus on Autism Spectrum
Disorders

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The Impact on Families
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Carers Views?

• Regional Consultation
• Carers Questionnaire
• 625 returns

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Carers Questionnaire Contents

• Personal details
• Diagnosis
• Present education and education related provision
• Transport/Travelling time

• Staff Training
• External support
• Advocacy
• Beyond school
• Impact on Family Life
• The Future

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ASDs

• Language disorder/delay Delayed development
  Learning difficulties Emotional and/or
  behavioural difficulties Dyspraxia ADHD/ADD SLD
  Autistic tendencies Hyperactivity Dyslexia
  Deafness / hearing impairment Nothing wrong not
  ASD Communication disorder/difficulties Cerebal
  Palsy Epilepsy Pervasive developmental disorder
  Autistic features A few problems Brain damage
  Fragile X/ Tourette's Syndrome Downs Syndrome
  Elective mute Foetal alcohol syndrome
  Hyperkinetic disorder Idiopathic mental
  retardation Munchausen's by proxy Rett Syndrome
  Social problems Spoilt Valorprite foetal

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ASDs

• Asperger syndrome Autism ASD
• Semantic pragmatic language disorder
• Autistic tendencies/features
• Atypical autism Mild autism/Asperger
• Pervasive development disorder
• Able Autism Communication disorder
• High functioning autism

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How Parents felt following a diagnosis
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3 Greatest Sources of Stress for Parents of
Children with an ASD

• Primary source of stress Percentage
• Behaviour Management 32.9
• Constant care/supervision 12.2
• LEA including schools -
• service and lack of provision 11.5

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Sources of Stress - percentage of parents listing
source in top 3

• Source of stress Percentage
• Behaviour Management 51.1
• LEAs including schools 61.3

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Other sources of stress

• Identification, assessment and diagnosis
• Parental comments re the diagnostic process

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Parental comments

• It was cold, blunt and uncaring. We were told not
  to give up but not to expect too much and to stop
  comparing him with other children.
• Once the diagnosis of Aspergers Syndrome was
  made I was left to get on with it. I felt
  stranded not knowing what was in the future or
  where to go or what to do
• I wish I had it written down, I still don't know
  what type of Autism he has, I was told at least
  he wasnt dying but that still didn't make it any
  less bearable!
• It was a nightmare, the most demanding process. A
  process of survival of the fittest

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Regional Reports on ASDs
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Report on Autistic Spectrum Disorders (2001)

• Contains 6 free-standing sections
• 1) Executive Summary
• 2) Identification, Assessment and Diagnosis
• 3) Training
• 4) Provision
• 5) Home Based Programmes
• 6) Carers Questionnaire Analysis

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Regional Working Groups

ASD Identification Working Party












ASD Parent Pack Group
NAPC
Interventions in the Early Years (ASD) Group
ASD Parent Pack Production subgroup
ASD Training Protocols subgroup
Autism Research Group
ASD Training Steering Group
ASD Training Content subgroup
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APPGA Manifesto

• On the May 14th 2003 the APPGA launched its
  Manifesto

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APPGA Manifesto

• Goals to be achieved by 2013
• 4 general principles
• Training, Research, Service Provision, Tracking
  and Planning of Services.
• 11 Specific Objectives
• Diagnosis and Family Support, Early Intervention,
  Medical Care, Respite Provision, Mental Health,
  Leisure, Welfare and Social support, FE/HE,
  Employment, Housing.

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Work in the West Midlands towards the APPGA
Manifesto

• Diagnosis and Family Support
• Welfare Support
• Early Intervention
• Training

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APPGA Manifesto

• Diagnosis and Family Support Autism-specific
  multi-agency diagnostic and assessment teams will
  be established in every local area, able to
  provide accurate and sensitive information on
  autism to families. There will be a clear target
  that all children with autism will be diagnosed
  by the age of five, with no more than six months
  between the time a parent first contacts a health
  professional to express concern and a confirmed
  diagnosis. Support and training services will be
  available for all carers, siblings and families
  immediately following diagnosis

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Identification Working Party

• A multi-agency working group looking at issues
  regarding identification, assessment and
  diagnosis of ASDs
• Regional guidelines
• Key underlying principles for a service for ASD

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NAPC

• Guidelines addressing the identification,
  diagnosis and access to early interventions for
  pre-school and primary school children with
  autism spectrum disorders
• It is hoped they will encourage transparent,
  efficient, diagnostic processes able to meet
  local area needs that are not prescriptive but
  demonstrate good practice

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APPGA Manifesto

• Welfare Support Autism will be explicitly
  designated as eligible for all appropriate
  disability benefits, including those pertaining
  to mobility, personal care, housing support and
  independent living. Information on the range of
  benefit and entitlements will be offered to
  families affected by autism at the point of
  diagnosis

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Regional ASD Parent Information Pack
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Contents

• Section 1 Introduction
• Section 2 What is an ASD?
• Section 3 Professionals Involved
• Section 4 Approaches to ASD
• Section 5 Who Can Help
• Section 6 Living Together at Home
• Section 7 Your Childs Education
• Section 8 Transitions
• Section 9 Training
• Section 10 Publications and Websites
• Section 11 Information Leaflets

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Contents and design

• Sections are different colours
• Loose leaf
• Folder design
• Space for other national and local leaflets
• NAS
• autism.west midlands
• Afasic
• Midlands SEN Mediation Service
• SEN Regional Partnerships
• Code of Practice Quick Guide

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APPGA Manifesto

• Early Intervention, primary and secondary
  education All children receiving a diagnosis of
  an autism spectrum disorder will be offered a
  prompt and appropriate early intervention
  programme based on best available evidence

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Framework for Successful Early Interventions

• A regional framework has been created that local
  services can use to evaluate provision of
  interventions in the early years for children
  with ASDs
• Framework acknowledges the importance of allowing
  scope for flexibility and the ability to meet
  diverse needs when developing provision

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Framework for Successful Early Interventions

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APPGA Manifesto

• Training there will be a statutory requirement
  that all professionals or auxiliary staff working
  with people with autism will have received autism
  awareness and job specific training in autism
  prior to commencing their employment. All
  professionals working in the health, social care,
  education and criminal justice sectors will
  receive autism awareness and job-specific
  training in autism as part of their continuing
  professional development

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Training and Expertise is a vital key to
inclusion
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Regional ASD Training

• FREDA
• Forum for Regional Education Development Autism
• A multi-agency regional Training Steering Group
  set up to follow the recommendations from the
  National Autism Plan for Children

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Regional ASD Training Protocol

• The Forum for Regional Education Development
  Autism upholds a vision in which high quality
  multi-agency training in ASD is available to
  everyone in the region, is supported by statutory
  funding and is designed to meet the diverse and
  changing needs of the full range of universal and
  specialist services and all their users

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Regional ASD Training Protocol Examples of the
Key Principles

• Recognises the evolving and dynamic nature of
  childrens and families needs over time and
  provides a diversity of training content and
  methods
• Involves children/young people with ASD in its
  development and/or presentation
• Is developed to encourage common understanding
  and information sharing by bringing together
  agencies, organisations and/or individuals for
  joint training

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Regional ASD Training Protocol Key Principles

• Promotes inclusion by acknowledging and
  celebrating diversity and working to increase
  understanding of ASD
• Underpinned by a philosophy of shared
  responsibility in which everyone in society has a
  part to play in seeking positive outcomes for
  children/young people with ASD

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ASD Training Content subgroup

• No one regional training package but core
  competencies/minimum standards suggested at 4
  levels
• Pre-Foundation
• Foundation
• Core
• Extension

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Regional ASD Core Competencies

• 4 levels
• Pre-Foundation
• Understanding Practice Task/Activities
• Foundation / Autism Awareness
• Understanding Practice Task/Activities
• Core
• Understanding Practice Task/Activities
• Extension
• Understanding Practice Task/Activities

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Regional ASD Core Competencies

• Pre-Foundation
• Understanding Practice Task/Activities

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Regional ASD Core Competencies

• Pre-Foundation level
• Public awareness in public areas
• (e.g. Shop Assistants)
• TASK/ACTIVITIES
• Sticker for side of shop till -
• Perhaps I am not being naughty,
• Perhaps I am frightened.

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Regional ASD Core Competencies

• TASK/ACTIVITIES
• Information cards
• Because I can speak well, doesnt mean that I
  understand
• If I say or do something that offends you, please
  tell me and be tolerant
• Give me time and slow down
• Link to customer service and competitive
  advantage - kite mark for training

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Regional ASD Core Competencies

• Foundation Level
• Will include headings such as
• Nature of ASDs
• Implications of ASDs for daily living
• Understanding the position of parents and
  families
• Diversity within the autism spectrum
• Key principles of current interventions in ASDs
• Useful sources of local and national information

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Regional ASD Core Competencies

• Foundation Core Extension levels
• Analysis of key components into Understanding
• Practice
• Task/Activities
• Numbered sections like National Curriculum ?
  Regional Framework for Training

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Action Plan 2005 - 2006