The Challenge of Implementing a National

Autism Strategy

Tommy MacKayPsychology Consultancy Services and

National Centre for Autism Studies, University of Strathclyde

Northern Ireland Policy Summit – ‘Laying the Foundations’Autism Celtic Nations Partnership, 2 May 2013

What I’m not going to talk about• There are challenges in implementing almost

anything

• There are more challenges in implementing anything ‘national’

• There are still more challenges in implementing anything national that’s a ‘strategy’

The nature of a National Autism Strategy

‘A national 10 year autism strategy that addresses the entire autism spectrum and the whole lifespan of people living with ASD in Scotland’

- The Scottish Strategy for Autism, Overview, page 5

What makes it challenging

• The implications of the ‘10 years’• The complexity of the subject – Autism• The scale of ‘national’• The number of agencies involved• The things we don’t know

A comparison: two 10-year strategies

• The National Autism Strategy

• The West Dunbartonshire Literacy Initiative (and the Scottish National Literacy Commission)

(MacKay, 2006; 2007)

What makes it challenging:Literacy v Autism• The implications of the ‘10 years’

• The complexity of the subject

Uni-dimensional Multi-dimensional

• The scale of ‘national’

Aimed for regional level Aims for national level

• The number of agencies involved

Education with multi-agency support All agencies

• The things we don’t know

We knew all we needed There is a vast knowledge chasm

The same challenge

1 The implications of the 10 years

There are few known examples of any 10-year strategy in any field that has achieved

what it set out to achieve

Challenge of a 10-year strategy in West Dunbartonshire

• 6 changes of Director of Education• 3 changes of Education Officer responsible

for project• 3 changes of Project Leader• 90% change of specialist staff• 5 changes of Council Leader• 4 major political upheavals in Council.

The unforeseen is usually foreseeable• Governments will change• There will be economic crises• New priorities will stake their competing claims• There will be ‘project fatigue’• Key personnel will: retire; leave; get promoted

elsewhere; go off ill; take time out to increase the world’s population…

2 The complexity of the subject

Every layer of complexity multiplies the level of challenge to be addressed

• Autism is complex and multi-dimensional (a ‘pervasive’ developmental disorder)

• We still have a poor understanding of its boundaries and its variation

• The strategy must cover everything from 2 year olds awaiting diagnosis of autism and learning disability to 52 year olds with University degrees and Asperger’s unable to stay out of prison…

3 The scale of ‘national’

Things that are difficult at local level are vastly more difficult at national level

The declared scale of the Scottish strategy• The whole spectrum

• The whole lifespan

• The whole of Scotland

The example of competing policies and resource priorities Eradicating illiteracy: the West Dunbartonshire experience• The UK: ‘How can we roll this out to the whole UK?’

(PM Gordon Brown)• Competing policies: a commitment to local

management of resources at school level• Scotland: ‘A unique vision for Scotland’• Resource priorities: The competing issue of class

sizes

The example of training

• Half of those working mainly in the ASD field only had introductory training

• 38% of those working partly in the ASD field had no training at all

A National Training Framework forAutistic Spectrum Disorders (MacKay & Dunlop, 2004)

The example of diagnosis• Early diagnosis is important for planning, for

intervention and for supporting parents and carers• Average age of last 50 individuals diagnosed at the

National Diagnosis and Assessment Service for ASD (child and adult):

29 years• Number of adults entered in Scottish Autism Audit

(2004): 645• Only 8 out of 15 NHS areas had complete data and

4 had no data• Prevalence: 2/10,000 (excluding areas with no data)

Under-diagnosis of children

• 3,400 children and young people diagnosed with autism in Scotland

• Prevalence rate: 35/10,000• Expected prevalence: approx. 100/10,000

Scottish Autism Audit (2004)

The example of engagement‘The Autism Toolbox’ (2009)‘An Autism Resource for Scottish Schools’

• Only about 3-4% of Scottish schools responded to a national survey on its use

• Even of these, over 40% said the didn’t use it or hardly used it

The example of therapy• Lack of trained staff with expertise in therapy for ASD• Lack of ASD-specific therapeutic resources

The case of DLDL is a 15 year old boy who with autism who suffered PTSD following a minor accident in a bus in which he was travelling. He became unable to travel on buses and then on any vehicle. He was offered therapy by a CBT therapist using a standard protocol. This traumatised him further and he became frightened to leave the house. There is virtually no one with therapeutic expertise for ASD.

Therapy: the challenge

‘There is limited access and poor uptake of psychological treatment services by people with autism, largely due to limited availability but also because current systems for the delivery of such interventions are not adapted for use for people with autism’ (NICE, 2012, para. 4.2)

The Homunculi programme (Greig & MacKay, 2004, 2006, 2013; MacKay & Greig, 2008, 2011)

An intervention for children and young people which:

• Is evidence based• Applies theory to practice• Is ASD specific

4 The number of agencies involved

For every agency involved in fulfilling the strategy a new dimension of difficulty is added

Agencies: how many interfaces?• Across many Government departments• Across national and local government• Across agencies within local authorities• Across agencies with different geographical

boundaries• Across the child/adult divide• Across the public, private and voluntary sectors• Across budgets controlled by multiple agencies.

5 The things we don’t know

We still don’t really know what we should be spending our money on and why

The Microsegmentation Project‘to identify the escapable costs of autism, that is, those which would not be incurred with early and appropriate interventions for individuals on the spectrum, and to provide the evidence base on which these can be applied to the context of the population of Scotland’

Can we overcome the challenges?The West Dunbartonshire experience:‘Something quite remarkable… able to revolutionise an education system’ (PM Gordon Brown, 2007)

‘Content’ v ‘context’ variables (MacKay, 2006, 2007; Greig, Taylor & MacKay, 2013)• ‘Content’ is the what of the strategy; ‘context’ is

the howVISION

PROFILE

COMMITMENT

OWNERSHIP

DECLARATION

We can start with declarationWe once set out to do something that had never been done before:

To raise children’s reading levels by doing nothing different from what we were already doing, except…

…getting them to declare that they will do it