A Guideline for the recognition, referral and diagnosis of autism In Children and Young people up to the age of 19 years With draft recommendations from.

A Guideline for the recognition, referral and

diagnosis of autism

In Children and Young people up to the age of 19 years

With draft recommendations from the adult guideline

Autism Spectrum Disorder:

• A disorder defined by behavioural symptoms.• Impairments in social interaction and social

communication combined with restricted repetitive interests and behaviours, often with sensory sensitivities and stereotyped mannerisms.

• Manifestations change over time and context and are often associated with other neurodevelopmental, mental/behaviour problems and medical symptoms and conditions.

• A neurobiological condition, heterogeneous in manifestation and causation

The reason for the guideline• Variation in availability of diagnostic services • Delays in diagnosis affect access to

services.• Inequalities of diagnosis eg those with

intellectual disability; those with good verbal ability and average or above intellectual ability; Girls; those with a dual language; ‘looked after’ children; those in the Criminal Justice system

Context

• National context

• Prevalence

• DSM & ICD diagnostic systems

• Categories/ dimensions

• A spectrum

• Terminology

National Context

• National Autism Plan• SIGN

• Equity and Excellence/The Health and Social Care Bill• DfE--SEN Green Paper

• Autism Bill 2009/Autism Act• Autism Strategy (Dec 2010)

The Autism Act 2009

A legal requirement on all LAs and Trusts to have:• A lead professional to develop diagnostic and assessment

services in every area with a clear pathway to diagnosis• Specialist training for key professionals and improved

awareness of autism in frontline staff through training• Assessment of individual needs• Planning relevant services to meet needs including

transition to adulthood• Gathering local information about numbers and needs

Aim: to improve health and wellbeing of individuals with autism (Fulfilling and Rewarding Lives)

Prevalence of autism and Asds

• Autism was previously thought to be an uncommon disorder, but is now thought to occur in at least 1% of children.

NB 6-14 fold variation in current studies estimating prevalence rates

? Number of children/YP with similar symptoms without

an ASD diagnosis

DSM 5 and ICD11

• New revisions of the classification systems

• Removal of subgroups of ASD

• Reduction in domains

• Severity specifiers

• Expected timing—2012/13

Context

• National context

• Prevalence

• DSM & ICD diagnostic systems

• Categories/ dimensions

• A spectrum

• Terminology

Context

• National context

• Prevalence

• DSM & ICD diagnostic systems

• Categories/ dimensions

• A spectrum

• Terminology

Guideline 1 for the recognition, referral and

diagnosis of autismIn Children and Young people up

to the age of 19 years

The aim• To make a difference to the current

recognition and diagnosis of autism .

• To make practical recommendations, using an evidence based approach, for ‘front line’ staff for recognition and referral and diagnostic assessment.

• To support person centred care and coordinated service delivery for children and families

NICE guidelines 2 &3

• 2. Recognition, referral, diagnosis and managment of adults with autism

• 3. Management and support of children with autism and their families

What did parents want?NAS parent survey

1. A clear pathway pre and post diagnosis

2. Decreased waiting time

3. Improved access to specialists

4. Increased awareness of co-existing mental/physical health problems and the uniqueness of each child’s presentation

5. Improve coordinated approach to diagnosis by different professionals

6. Make diagnosis more collaborative with parents and improve support during and after diagnosis

What did Community Paeds say?

1. Do not produce an unworkable guideline or suggest a diagnostic process that increases waiting times

2. Clarify terminology to produce some consistency across professionals noting that strict diagnosis is a ‘where do you draw the line’ problem which may not reflect a child’s needs.

3. Give guidance for difficult differential diagnoses eg attachment disorders and ‘quasi-autism’.

4. Clarify any biomedical investigations needed

NICE GDG decisions• To use the term autism in the NICE guideline to

refer to ‘autism spectrum disorders’ used as an umbrella term, synonymous with all diagnosed autism spectrum disorders.

• To use ICD10 and DSM IV but have regard to the future changes in ICD11 and DSM 5

• To conceptualise diagnostic assessment as a process that considers differential diagnosis, co-existing conditions and enables construction of a profile of the CYPs strengths and weaknesses, so that a plan of needs can be developed taking into account family and educational context.

Guideline Key questions:

1. What signs and symptoms should prompt recognition of autism and referral for diagnosis?

2. What is core to autism diagnosis? What tools should be used for autism diagnosis if any?

3. What biomedical investigations should be recommended as part of autism diagnosis

4. What coexisting conditions should be systematically assessed

5. What information/support should the child/YP/parents be given during and following diagnosis

Key RecommendationsIn every area: a strategy group; multi agency,

multiprofessional autism including Commissioners, managers and clinicians from health, education and social care, parents/users and the voluntary sector responsible for :

1. Establishing a Lead professional for autism diagnostic assessments for all ages and all levels of intellectual ability

2. Development of a Pathway to diagnostic services

3. Raising awareness of autism through multiagency training

4. Audit

5. Data collection

An Autism Team

May consist of few or many members who may be part of other teams but have:

Autism specific skills and competences in diagnostic assessment

Core team membership for each autism diagnostic assessment Doctor (paediatrician or child &adolescent psychiatrist), SLT, Psychologist (EP or Clin),

Additional desirable team members: OT, EP or Clin psych –(whichever not above), paed or psychiatrist—(whichever not above) Others depending on local circumstances eg teacher, specialist nurse, social worker

Recognition and referral

• Awareness raising through multiagency training• Tables of signs& symptoms for various ages• A clear local referral pathway and single point of

referral for autism diagnosis age up to 19 • ‘Screening questionnaires’ can be used but no

evidence to recommend routine universal use• School information to be sought in all with

parental permission-no specific tool recommended

CYP guideline-referral

Children under 3 years who regress in language and/or social skills

In other situations:• Severity, pervasiveness, impact and duration of

signs and symptoms• Concern shared by parents and professionals• Presence of factors increasing prevalence of

autism• Liklihood of alternative explanation of behaviour

Adult Guideline

Identification• Persistent difficulties in reciprocal social

engagement or social communication AND rigid repetitive behaviours or resistance to change AND one or more of:

• Problems in obtaining or maintaining employment or education

• Difficulties in initiating ir sustaining social relationships• Previous or current contact with CAMHS or LD services• A neurodevelopmental disorder

Adult Guideline-referral for autism assessment

Two or more of:• Poor reciprocal social interaction including being aloof,

indifferent, social approaches that are naïve or unusual, interactions to fulfil needs only,

• Lack of responsiveness to others social approaches• Little or no change in behaviour in response to social situation,• No or limited demonstration of social empathy,• Rigid routines and resistance to change,• Marked repetitive behaviours when under stress or expressing

emotion• In average ability clients—can use AQ 10 (score >6)

Adult Guideline

A comprehensive assessment should be :• Undertaken by professionals who are

trained and competent• Be team based drawing on a range of

professions and relevant skills• Involve an informant/ family member or

other or use documentary evidence of current/past behaviour and early development

Case Co-ordinator

• A Case coordinator to be appointed from within the team to be point of contact for each CYP and family and signpost support during process of assessment, coordinate information gathering and subsequent care plan

The following elements to be included in every autism diagnostic assessment:

• detailed enquiry about parent or carer concerns and if appropriate the child or young person’s concerns

• a medical history including prenatal, perinatal and family history past and current health conditions

• the child's or young person's experiences of home life, education and social care

• a developmental history focussing on developmental and behavioural features consistent with ICD-10 or DSM-IV criteria (consider using an autism-specific tool to gather this information)

• assessment through interaction with and observation of the child or young person of their social and communicative skills and behaviours focussing on features consistent with ICD-10 or DSM-IV criteria (consider using an autism-specific diagnostic tool to gather this information).

• consideration of differential diagnosis

The following elements to be included in every autism diagnostic assessment: • A physical examination. • No routine medical investigations in autism• Genetic tests as advised by local service• Other tests according to clinical judgment and symptoms

• A systematic assessment of co-existing conditions• communication of assessment findings with parent/carer and

where appropriate, the child or young person

• A profile of the individual’s strengths, skills, impairments and needs that can be used to create a needs-based management plan taking into account family and educational context.

Develop a Profile of strengths, skills, impairments and needs in the following to inform the management plan

• intellectual ability and learning style• academic skills• speech, language and communication• fine and gross motor skills• adaptive behaviour (including self-help skills)• mental and emotional health (including self esteem)• physical health and nutrition• sensory hypo and hyper sensitivities• behaviour likely to affect day to day functioning and social

participation• socialisation skills.

In both the FAMILY and EDUCATIONAL CONTEXT

Adult guideline

During comprehensive assessment , assess the following risks:

• Self harm

• Rapid escalation of problems

• Harm to others

• Self-Neglect

• Breakdown of placement

• Exploitation or abuse by others

Following assessment• Immediate ‘feed-back’ (involving CYP if appropriate)• A written report (a health passport)• (Formulate a management plan including a crisis

plan if needed)• Follow up appt within 6 weeks to discuss findings• Disseminate/share findings with all relevant services,

with permission, which may include a school visit• Signpost support services for family both statutory

and voluntary

Principles of Care in guideline

• Person centred

• Respectful and inclusive/partnership

• Professional knowledgeable about autism, course and impact of the condition on the individual, including gap between intellectual skill and adaptive function, and on family

• Impact of environment on autism

Potential areas for additional costs locally are:

• recruitment and training of autism team members.

• an increase in the overall volume of referrals to the autism team due to improved recognition

• additional costs to communicate the results of autism assessments, for example school visits by autism team

Savings

•Potential areas for savings locally are:

•efficiency savings due to better multi-agency working.

What is needed to effect change?• Leadership at national regional and local

levels

• A local strategy group including users

• Commissioners contracting for pathways and outcomes

• Clinicians/managers working together from health/social care and education

• Audit/inspection/tariffs?

Translates into• More with the same not more of the same• Change clinical practice• Redesign care pathways• Focus on integrated care• Use workforce as flexibly as possible• Share back office staff and functions

While retaining the High quality care :• Patient centred • Specialist Competence • Continuity of care

NICE Pathway

• The NICE Pathway published in October 2011 covers:

• recognising possible autism

• referral

• assessment

• diagnosis

Click here to go to NICE Pathways

website

NHS Evidence

Visit NHS Evidence for the best available evidence on all aspects of autism

Click here to go to the NHS Evidence

website

To be added- the latest NHS evidence image