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REVIEW OF SERVICES FOR CHILDREN AND YOUNG PEOPLE WITH AUTISM SPECTRUM DISORDER IN LEWISHAM

DR. KITTY MOHAN

PUBLIC HEALTH LEWISHAM

JUNE 2012

CONTENTS

1. EXECUTIVE SUMMARY 4

2. INTRODUCTION 6

3. BACKGROUND 7

3.1 Definition of Autism Spectrum Disorders 7

3.2 Prevalence 7

3.3 Key Policy 8

3.31 Diagnostic criteria 9

3.32 Models of care 9

3.4 Transition to adult services 11

4. THE LEWISHAM PROFILE 13

4.1 Population profile 13

4.2 Population projections 14

4.3 Prevalence of ASD in Lewisham 14

5. SERVICES FOR CHILDREN AND YOUNG PEOPLE WITH ASD IN LEWISHAM 17

5.1 Diagnosis 17

5.1.1 Referrals to the service 17

5.1.2 Audit of ASD service in Lewisham 20

5.1.3 Making an ASD diagnosis 21

5.1.3.1 The case for Health Visitor and ASD specialist involvement in diagnosis 22

5.2 Following up children and young people with ASD 24

5.3 Children and Adolescent Mental Health Services (CAMHS) 27

5.3.1 Referrals to CAMHS 28

5.3.2 Transition to adult services 28

5.4 Therapies 29

5.5 Other specialist services 30

5.51 Multi Agency Planning Pathway (MAPP) 30

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5.52 Portage 31

5.53 Special Needs Nursing and School Nursing Services 32

5.6 Voluntary sector services 32

5.6.1 Lewisham Autism Support 32

5.7 Transition services 34

5.7.1 Transition between children and adult services 34

5.8 The management of children and young people with ASD 36

6. CONCLUSIONS 37

7. RECOMMENDATIONS 39

8. REFERENCES 43

APPENDICES

APPENDIX I Diagnostic criteria for ASD 45

APPENDIX 2 Conditions which may co-exist with a diagnosis of ASD 49

APPENDIX 3 Signs and symptoms of possible autism in preschool children 50

(or equivalent mental age)

APPENDIX 4 Signs and symptoms of possible autism in primary school children 52

(5-11 years or equivalent mental age)

APPENDIX 5 Signs and symptoms of possible autism in secondary school children 54

older than 11 years (or equivalent mental age)

APPENDIX 6 An ideal patient journey for a child with autism 56

APPENDIX 7 NICE guidelines: Recognising possible autism 60

APPENDIX 8 List of stakeholders interviewed and main questions asked. 61

APPENDIX 9 Full results of audit of ASD diagnostic service 63

APPENDIX 10 Eligibility criteria for social care 77

3

1. EXECUTIVE SUMMARY

This Healthcare Needs Assessment (HCNA) was undertaken to evaluate the services currently

available for children and young people with ASD in Lewisham. It incorporates a review of published

literature and key policy documents related to ASD; semi-structured qualitative interviews with key

stakeholders; and two audits comparing current practice in Lewisham with national policy

recommendations.

A comprehensive review of ASD services in Lewisham has revealed that there is good evidence to

support the view of local providers that the prevalence of ASD amongst children in Lewisham may be

as high as 2%. Future planning should be on the basis of a minimum prevalence of 1.5%

(Recommendation 1).

In general, services in Lewisham match what is recommended in key national policy documents.

However there are some areas of important areas of concern that the Partnership will need to

address to ensure the best possible care for children and young people in Lewisham:

Current service levels within the medical team need to be maintained (Recommendation 2).

There is a clear need for an agreed and shared pathway which includes a mechanism for

tracking children through the pathway. This pathway should take into account the services

provided at Drumbeat School, opening in September 2012. This is crucial to benchmark the

quality of ASD services in Lewisham (Recommendation 3).

Very careful consideration must be given to how Health Visitors can be used most effectively

to support existing ASD services (Recommendation 11 and 24).

Careful consideration needs to be given to whether an ASD specialist post is possible to

facilitate the management of the ASD pathway and individual children (Recommendation 10

and 13).

Options for supporting families should be considered in the light of evidence resulting from

the combined multi-disciplinary follow up pilot and also in the context of both existing

services and the opening of Drumbeat to ensure that needs are met in the most effective

way (Recommendation 14).

Transition beyond children and young people’s services must be planned for from 14 years

of age and involve joint working between health, social care, education and employment

organisations (Recommendation 26, 27 and 29).

4

The transition needs of young people with ASD without mental health or learning

impairment must be addressed urgently by joint working between Children and Young

People services and Adult services (Recommendation 16 and 29).

Consideration should be given to how key-workers from within health services could be used

for individual children or young people with ASD in Lewisham (Recommendation 30).

A comprehensive list of all recommendations made in this report is included in Section 7.

5

2. INTRODUCTION

This Healthcare Needs Assessment (HCNA) was conducted at the request of local Commissioners to

provide an in-depth review of the services available for children and young people with ASD in

Lewisham. It builds on work already undertaken by the Commissioners and Provider services, which

was prompted by an increase in referrals in recent years. First, this HCNA examines the prevalence

of ASD amongst children in Lewisham. Secondly, it includes an in-depth evaluation of the existing

pathway of care to establish whether the needs of children and young people in Lewisham are met

appropriately. Finally, recommendations have been made to ensure the provision of a patient-

focussed ASD service which meets the needs of the Lewisham population.

2.1 AIM

The aim of the Healthcare Needs Assessment was to evaluate services currently available for

children and young people with ASD in Lewisham. In particular the HCNA was designed to assess if

current services are adequately meeting the needs of children and young people with ASD, and the

needs of their families, and to highlight any gaps in the service to be addressed.

2.2 METHODS

Methods used included:

A review of published literature and key policy documents related to ASD

Semi-structured qualitative interviews with key stakeholders.

Two audits:

o a baseline audit to compare the ASD service in Lewisham with the recommendations

from the National institute of Clinical Excellence (NICE) guidance ‘Autism:

Recognition, referral and diagnosis of children and young people on the autism

spectrum’ published in September 2011;

o a clinical audit to review the notes of attendees of the Pre-Communication Clinic

during October 2011 and to compare current practice with the recommendations in

the NICE guidelines.

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3. BACKGROUND

3.1 Definition of Autism Spectrum Disorders

The term ‘autism’ is often generally used to mean the group of pervasive developmental disorders

and describes qualitative differences and impairments in reciprocal social interaction and social

communication, combined with restricted interests and rigid and repetitive behaviours. Autism

spectrum disorders (ASD) have a significant impact on function and are diagnosed in children, young

people and adults if these behaviours meet the criteria defined in the International Statistical

Classification of Diseases and Related Health Problems (ICD-10) and the Diagnostic and Statistical

Manual of Mental Disorders DSM-IV Fourth Edition (DSM-IV), shown in Appendix 11.

Both the ICD-10 and DSM-IV have similar symptom criteria for diagnosis broadly based on a triad of

impairments involving social function, language and communication and thought and behaviour2.

People with ASD often interpret situations differently from other people and struggle with new,

unpredictable and ambiguous environments3. It is now generally recognised that there is a spectrum

of autism disorders that includes individuals across the range of severity and intellectual ability. This

ranges from severely impaired individuals who have typical or ‘core autism’ symptoms to 'high

functioning’ children who may lead a normal life but have features of the disorder and are therefore

on the autism spectrum.

In addition, ASD may occur in concordance with other medical, behavioural and neuro-

developmental conditions listed in Appendix 2, the presence of which should be considered, and

investigated for if appropriate, at the time of diagnosis.

3.2 Prevalence

In 2003 the National Autism Plan for Children estimated that ASD affects at least 60 per 10000

children under the age of 8 years, of whom 10-30 per 10000 will have narrowly defined autism 4. The

SIGN guidelines in 2007 estimated the prevalence of autism amongst pre-school children to be 70.3

per 10000 in Scotland2; and more recently, both the guidelines published by the National Institute of

Clinical Excellence (NICE) and the Autism Postnote released by the Parliamentary Office of Science

and Technology have reported increasing prevalence with the figure of 1% of children commonly

expressed1,3.

7

Prevalence rates of closer to 1% were first estimated by Honda and colleagues in 2005 who found a

cumulative incidence rate of ASD in children up to seven years of age of 88.5 per 10000 5, and by the

2004 ONS British survey of child and adolescent mental health in which the prevalence of ASD for

the age group 5-16 years was estimated as 90 per 100006.

Baird et al in 2006 calculated the total prevalence of ASD to be 1.16% and the prevalence of

childhood autism to be 0.39% in a population cohort of children aged 9 – 10 years in South Thames 7.

Since then, studies have estimated the prevalence to be as high as 1.5% and 2.1% 8.9. Baird et al used

a multiphase screening design that aimed to assess the validity of ASD diagnoses made by local

clinicians and to detect the rate of possible missed cases of ASD in an at-risk sample of children with

identified special educational needs; this sample included children with various behavioural, learning

and medical problems but without a current ASD diagnosis. They found that this multiphase

population screening substantially increased the prevalence of ASD reported. If figures were

estimated using previous locally identified cases the prevalence of ASD would be 0.44% only7. It is

therefore hard to quantify to what extent there has been a real increase in prevalence rather than

improvements in the diagnosis and identification of ASD resulting in the diagnosis being missed in

fewer children.

However, even 1.5-2.1% may be a significant underestimate. The National Autism Plan for Children

in 2003 recognised the spectrum of ASD from those severely impaired, to ‘highly functioning'

individuals who may be able to complete daily living skills. As a result these 'highly functioning'

individuals’ clinical diagnosis may only be made at a much later age4. Recent research indicates this

problem persists. In 2009, Baron-Cohen et al found a ratio of 3:2 of known: unknown cases of ASD

identified after a survey to parents of all children aged 5-9 years attending participating schools in

Cambridgeshire8. This was further supported by research by Russell et al in 2010 who found that

within the Avon Longitudinal Study of Parents and Children (ALSPAC) cohort, 55% of children found

to have autistic traits at the same levels as those who had an autism diagnosis had not been

identified as needing extra support from education or health services10.

3.3 Key policy documents

The National Autism Plan was published in 2003 by the National Autism Society in collaboration with

the Royal College of Paediatrics and Child Health, the Royal College of Psychiatrists and the All Party

Parliamentary Group on Autism (APPGA) 4. The Plan set out what a good service for a child with

8

suspected/proven ASD would look like, and highlighted the need to focus attention on raising

standards in childhood disability services as a whole.

More recently, NICE guidelines (‘Autism Spectrum Disorders in Children and Young People:

Recognition, Referral and Diagnosis of Children and Young People on the Autism Spectrum’ were

published in September 2011. Whilst these guidelines do not contain guidance about the

management of autism, they highlight the need for patient-centred care, for good communication

between healthcare providers and the child or young person and their family, and for early planning

for transition between child and adult health services in order to avoid disruption and ensure

continuity of care.

3.31 Diagnostic criteria

The NICE reference tables of signs and symptoms of possible autism in preschool children, primary

school children, and secondary school children are given in Appendix 3, 4 and 5 respectively1.

A diagnosis of ASD, however, is a clinical decision and the use of a diagnostic tool or resources

should be used in conjunction with clinical judgment, to diagnose autism based on ICD-10 or DSM-IV

criteria.

Additionally, NICE guidelines highlight certain groups for whom a diagnosis of autism may be unclear

or uncertain. In particular, the following groups have been identified as those at risk of a missed or

delayed diagnosis:

children younger than 24 months

children or young people with a developmental age of less than 18 months

children or young people for whom there is a lack of available information about their early

life (for example some looked-after or adopted children)

older teenagers

children or young people with a complex co-existing mental health disorder

children and young people with communication difficulties.

3.32 Models of care

9

The National Autism Plan for Children 2003 recommended a three-stage framework, which should

take place after concern regarding a child with autism is identified. The plan outlined that Stages 1

and 2 should occur at a local level4.

Stage 1 consists of a general multi-disciplinary developmental assessment (GDA) as for any child with

a possible developmental problem. This should comprise of clear identification of concerns, a

developmental history, a full examination and appropriate further tests. The outcomes of a GDA

should include immediate feedback to the family, even where the diagnosis remains unclear. The

family should have adequate opportunity to discuss the outcome of the GDA.

Stage 2 - of the assessment process is a multi-agency assessment (MAA). A similar approach will

often be applicable to other developmental problems. All the components of a MAA should be

applied to all children in whom ASD are suspected since a full picture of the needs of the child and

family requires the contribution of all members of the multi-disciplinary, multi-agency assessment

team. A named key worker should be appointed at the beginning of the MAA process.

The central feature of the MAA is that it is undertaken by a multi-agency, multi-disciplinary team.

The team's core members should be available within a local area, including an educational specialist

and an ASD family support worker. The assessment should be completed and feedback given to the

family within 17 weeks from referral to the MAA team. In some children a final diagnosis may not be

possible at this stage, but the child's needs should have been identified.

All professionals involved in an MAA should be experienced and knowledgeable about ASD and it

should lead to specific recommendations. A written report should be produced and discussed with

the parents, and the key worker should be appropriately involved in these discussions. This should

include a needs based Family Care Plan (FCP).

Stage 3 - is the possible need for referral to a tertiary ASD assessment. The local area team may need

this referral for several reasons, including a second opinion, diagnostic doubt, complexity, and

specific advice about treatments or key transition stages. Either Stage 2 assessment or tertiary

service should include access to paediatric neurology, gastroenterology, metabolic medicine,

neuropsychiatry with competences in psychological and pharmacological treatments and other

specialist therapy services.

Specific recommendations in the National Autism Plan include:

• A co-ordinated care plan should be produced within six weeks of the MAA.

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• A trained professional in ASD in each local area should be available. He or she must be capable of

setting up a comprehensive home and pre-school based ASD specific intervention program within six

weeks of diagnosis.

• The recommendation is for access to 15 hours per week for each pre-school child.

• Every local area should have an ASD trained teacher with resource backing who can visit any

school and advise and set up as needed an appropriate ASD specific IEP for a pupil with ASD within

six weeks.

• The key service must be identified for follow up and rapid referral to the full range of appropriate

services recognising that needs change over time.

• A care manager should be identified for longer term co-ordination of the Care Plan for all complex

situations.

The National Autism Plan lays down a clear timescale of response: response to referral within six

weeks; Stage I (GDA) to plan of action – 13 weeks, and from referral for Stage 2 MAA to completion

with Family Care Plan (FCP) after a further 17 weeks.

This timescale was also reiterated in the DH Autistic Spectrum Disorders. Change for children: Every

child matters Exemplar 200411 that outlines an ideal patient journey for a child with autism as shown

in Appendix 6. More recently, the NICE guidelines published an algorithm demonstrating their

recommended model of care pathway. This is shown in Appendix 4.

3.4 Transition to adult services

Individuals with ASD struggle to process social and other information for the environment. In order

to cope with this, individuals rely on structure, routines and rules and therefore transition and

change, for example moving from school to adulthood, can be especially difficult for autistic

individuals3.

The Autism Act (2009) was created in response to increasing evidence that a significant proportion

of adults with autism, across the whole autistic spectrum, are excluded both socially and

economically12. For example, estimates suggest that only 15% of adults diagnosed with autism are in

employment, health outcomes are worse than for the population at large, and a large number of

adults with autism continue to live with their families rather than independently in their own

homes13.

11

The prevalence of ASD among adults is increasing and was shown to be similar to that found in

children in a population-based study of adults living in the community in the UK (9.8 per 1000 (95%

Confidence Interval 3.0-16.5)14. A study by Knapp et al looked at the cost of autism to the UK

economy and estimated that autism costs the UK economy £28.2 billion per year – with £25.5 billion

for adults and £2.7 for children. Or the total cost for adults, 59% is accounted for by services, 36% by

lost employment for the individual with autism, and the remainder by family expenses15.

The National Audit Office report ‘Supporting people with autism through adulthood’ published in

June 2009 recommended that management of the transition of young people with autism from

childhood to adult services requires effective planning and joint working between health, social care,

education and employment organisations. They recommended that every child with a Statement of

Special Educational Need (SEN) have a transition plan prepared in year nine of compulsory

education, i.e. roughly at 14 years of age. However, in their own survey conducted at the time of the

report, only 45% of Local Authorities who responded stated that they knew how many of their

children with autism and a statement of SEN had completed a transition plan16.

The report ‘Implementing “Fulfilling and rewarding lives”’ published by the Department of Health in

December 2010 to provide guidance to local authorities for the implementation of the autism

strategy, acknowledges the discrepancies which exist between the support available in children’s

and adult services for young people and their families with a diagnosis of ASD17. In particular, the

report emphasises the need for transition to be planned and managed over a number of years, and

for young people with autism, and their families and carers to be involved in transition planning.

However, the report also highlights the need for information to be passed on between children’s and

adult services. This is vital not only for the long-term needs of the individual to be met, but also to

share information about the numbers of children with autism in a local area and to assist longer-

term service planning17.

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4. THE LEWISHAM PICTURE

4.1 Population profile

According to the Greater London Authority estimates for 2011, Lewisham’s population is 274,900

people living in 116,600 households. This makes it one of London’s more highly populated boroughs,

in the second highest population quintile.

Almost a quarter of Lewisham's population are aged 19 years and under (Figure 4.1) with under 5’s

and primary school children each making up some 8% of the total population18.

Figure 4.1. The population of Lewisham by age.

Evelyn is the largest ward (total population 17,456, of whom 4634 are aged <20) but Downham

(total population 15,268) has the largest number of children and young people aged <20 (total

4,639)18. Downham also has the greatest proportion of children and young people <20 years (Figure

4.2).

13

Figure 4.2 Child population by ward, 2011 estimates (absolute numbers) 18

4.2 Population projections

Changes in the population age structure affect the need for health services. Population projections

therefore have an essential role in assessing the future need for services. Current trends in births,

deaths and migration are used to produce population projections.

Substantial population growth has been predicted over the next 30 years: increasing from an

estimated 274,900 in 2011 to 312,100 in 2031 - a rise of 14%. As today's children age, the adult

population will increase the most, however even in 2031, Lewisham will remain a relative young

population compared to the rest of England, and children aged under five years will remain an

important group. This needs to be taken into account when planning healthcare services in the

future18.

4.3 Prevalence of ASD in Lewisham

14

As mentioned in the previous section, there is good evidence to accept that the prevalence of ASD is

higher than previously thought, with studies frequently reporting prevalence rates of greater than

1% of children7,8,9. The most recent Learning Disabilities Profile published by the Learning Disability

Observatory Lewisham was reported as having the very highest rate of children known to have ASD

in the country, recorded as 17.43 per 1000 children (Figure 4.3).

Figure 4.3 Prevalence of children with ASD known to schools in 150 Local Authorities in England (per

1000 children) 19

This was substantially higher than both the London average (8.21 per 1000 children) and the England

average (7.58 per 1000 children). It important to note that only children known by schools to have

ASD were reported rather those known to healthcare professionals and that these figures only refer

to the school-age population. Furthermore these figures may include children attending Lewisham

schools who live out of borough, and exclude Lewisham children attending schools outside

Lewisham. However, there is an undoubtedly an increasing trend in ASD prevalence across south

east London, Kent and East Sussex (Figure 4.4) as well as other scattered pockets of increased

prevalence throughout the country. Both Lambeth and Southwark were amongst the six highest

local authorities with prevalence rates of 15.73 and 14.18 per 1000 children respectively. This may

be a combination of both an increased prevalence of ASD as well as increased knowledge of the

condition amongst health and education professionals, leading to a more ready diagnosis in these

areas.

15

Figure 4.4 Trend in prevalence of children with ASD known to schools in Lewisham compared to the

London and England average rates(per 1000 children) 19

Recommendation 1: There is good evidence to accept a current prevalence of ASD of between 1.5

and 2%. This is widely acknowledged, taking into account increased diagnosis of this disorder. This

needs to considered when planning health and education services for children and young people with

ASD.

16

5. SERVICES FOR CHILDREN AND YOUNG PEOPLE WITH ASD IN LEWISHAM

This section includes information collected during an audit of the ASD diagnostic services in

Lewisham and through semi-structured qualitative interviews carried out with key stakeholders and

representatives of each of the services mentioned. The audit used two tools: a baseline audit and a

clinical audit requiring review of case notes. These tools were taken from ‘Autism: Recognition,

Referral and Diagnosis of Children and Young People on the Autism Spectrum’ guidance published by

NICE in September 2011.

Interviews were carried out in person, with the exception of a focus group conducted by Contact a

Family organisation in order to collect the views of their users. A full list of those interviewed and a

list of the main questions and topics explored with each stakeholder is included in Appendix 8.

5.1 Diagnosis

ASD diagnostic services for Lewisham lie within the Community Paediatrics team, currently based at

Kaleidoscope and were set up in 1995. The number of children and young people referred to this

service has significantly increased over time. From April 2011 to February 2012, there were 1095

referrals to the Community Paediatrics team. Of these children, 47.5% were estimated to have a

diagnosis of ASD.

5.1.1 Referrals to the service

Entry into the ASD services is by referral. Referrals may be made by a General Practitioner (GP), by a

therapist who has been involved in the child or young person’s care, by a Health Visitor or school

nurse, or by another member of staff involved in the young person’s education. Once referred, the

case is discussed at a weekly meeting and the best place for the child to be reviewed is decided.

Over one year ago, the Communication Clinic was reshaped as part of the new initial assessment

pathway within the medical team. It was agreed at this time, that the current staffing capacity within

the Community Paediatrics team meant that the demands of current new ASD referrals could be

met, but the waiting list for a clinical decision could not be cleared. Since this time, and with the use

of CQUIN money, this waiting list has been cleared. As of April 2012, there were no children were

waiting over 18 weeks for an appointment rather than the 600 children waiting previously. Further

17

CQUIN money has been made available in 2012 to reduce the waiting time for follow-up

appointments.

The service pathway changed at this time to reduce time-to-diagnosis. Previously, most children who

were awaiting an ASD diagnosis would have both a Pre-Communication Clinic appointment – which

took the form of a General Developmental Assessment, as well as a Communication Clinic

appointment – which consisted of a Multi-disciplinary Assessment. Now the majority of children will

go from having a Pre-communications clinic appointment which may take two appointments in order

for a clinical decision to be reached, to having an intervention or therapy related to the specific

needs of the individual child or young person. This may increase to three of four appointments until

a diagnosis is made for children with complex histories and co-morbidities.

However, there is now no documented referral pathway or protocol which all referred children

follow, and whilst most children would follow the model outlined in Figure 5.1, this is not

documented or made known officially to those referring children in to the service.

Work was undertaken in 2009 to create a pathway for children of school age, however this has not

yet been finalised as attention had to be given to clearing the waiting list. Now this has been

achieved, it seems timely that both this work, and a referral pathway for children under 5 years of

age is completed and agreed by all stakeholders to reflect the current journey of children and young

people through the ASD diagnostic service. It is important that planning takes into account the

future contribution of the new Drumbeat school due to open in September 2012.

Recommendation 2: The current staffing capacity of the Community Paediatrics team in relation to

ASD needs to be maintained to avoid further increase in numbers of children waiting over 18 weeks.

Recommendation 3: Joint ASD pathways for children under 5 and school-age children should be

developed and agreed by all relevant parties including social care, education (taking into account the

opening of the Drumbeat school in September 2012) and health. Figure 5.1 might be used as the

basis for the health service contribution to a comprehensive pathway. Capacity may need to be

reviewed after agreement of this pathway.

18

Figure 5.1 Model of care used in ASD diagnostic service

5.1.2 Audit of referral to ASD service in Lewisham

As part of this report, two audits were carried out in order to ascertain how the ASD diagnostic

service in Lewisham was performing compared to national guidelines. The recent NICE guidelines

published in September 2011, includes a baseline audit tool which allows service provision to be

compared to the standards outlined in this document1. This baseline audit was carried out during a

WEEKLY REFERRAL MEETING

ASD REFERRAL

PRE-COMMS CLINIC

MORE COMPLEX CASEDIAGNOSIS OF ASD MADE

↓

MORE INFO NEEDED CHILD SEEN AGAIN IN PRE-

COMMS CLINIC BY SAME DOCTOR

CHILD SEEN IN

COMMUNICATION CLINIC

MORE INFO NEEDED

DIAGNOSIS OF ASD MADE

↓

↓

↓

↓

↓

↓

DIAGNOSIS OF ASD MADE

↓

↘↙

19

face-to-face interview with Dr. Sian Morgan, Community Paediatrician. Each recommendation was

individually reviewed to ascertain which were implemented in Lewisham.

Secondly, a clinical audit was conducted to review the notes of attendees of the Pre-Communication

Clinic during October 2011 and to compare current practice with the recommendations in the NICE

guidelines.

The detailed results of both the audits are found in Appendix 9, however the main findings are

summarised below.

The baseline audit showed that 64 of the 68 NICE recommendations had been implemented in

Lewisham, the ASD service in Lewisham, in some cases exceeding the minimum service

requirements.

This was confirmed by the results of the clinical audit. Of the 40 children booked in for Pre-

Communication Clinic in October 2011, 24 sets of notes were available and were reviewed. Of these

24, 20 had been referred with a suspected diagnosis of ASD. In the 20 sets of notes included in the

audit, 17 of the 20 recommendations specified in the clinical auditing tool were met in all of the

cases by the diagnosing physician.

In particular, the time in which children younger than three years with a regression in language or

social skills received their initial assessment, was found to be very good, with assessments normally

conducted alongside a paediatric neurologist. Furthermore, unless a child is referred to the Multi-

agency Planning Pathway (MAPP) team, they are not assigned a case co-ordinator, however a doctor

is allocated at the time of referral and this doctor remains responsible for the care of the child and

adult until after time of post-diagnostic follow-up.

In conducting this audit it was striking how difficult it was to track exactly what was happening to the

40 children who had been booked. Furthermore the diagnostic outcomes were not routinely

recorded on Rio resulting in difficulty in identifying children with a clinical diagnosis of ASD. This is

important to ensure all children are appropriately followed up, and not lost within the system.

Recommendation 4: All children should also have their diagnostic outcome recorded on Rio to ensure

appropriate and timely follow-up, and to enable audit.

A service gap was identified by the clinical audit. The NICE guidelines specify that the ASD diagnostic

assessment should be started within three months of referral to the medical team, and this target

20

was only met in 55% of cases. In several cases, the child or young person was assessed just outside

this time-period.

Recommendation 5: All ASD diagnostic assessments must begin within three months of referral to the

medical team.

In addition, the audit revealed that no child had a second appointment within three months of their

first. As no diagnosis is possible on the first appointment this suggests that many families have to

wait at least six months for a diagnosis.

Recommnedation 6: As well as considering the time from referral to first appointment, consideration

must be given to the time between first and second appointment, in order to minimise the time to

diagnosis for children with ASD and their families.

5.1.3 Making an ASD diagnosis

Another gap identified by the clinical audit is the absence of an educational psychologist within the

team. Despite schools being able to refer a child or young person, this can be a lengthy and arduous

process. NICE recommends that the autism team should either include or have regular access to

many different healthcare professionals, many of whom are readily available within the multi-

disciplinary team in Lewisham. Access to an educational psychologist, either positioned within the

team, or an identified person to whom the medical team can refer directly would expediate this

process.

Recommendation 7: The inclusion of an education psychologist within the diagnostic pathway, or

easily accessible for referral by the Community Paediatrics team is needed.

In other stakeholder interviews, healthcare professionals and service users alike highlighted

difficulties in the response to a diagnosis of ASD, in particular within the education setting.

Suggestions made to parents and carers to doubt the diagnosis or to doubt the diagnoser due to

their healthcare background or experience, can be very confusing and even damaging, especially at a

time when the parent or carer may be still struggling to adjust to the diagnosis themselves.

Whilst it is important to acknowledge that making a clinical diagnosis may appear subjective and

dependent on the interactions between the child or young person and health and education

professionals involved, consistency in the messages to families is key. It is vital that parents and

21

carers understand what a diagnosis of ASD does and does not mean and that they are provided with

the correct information to have realistic expectations of the services available to them.

In 2011, a service related project investigating levels of parental or carer satisfaction with the

Lewisham Communication Clinic Report letter was undertaken by Elizabeth Banwell, trainee

educational psychologist, under the supervision of Dr. Kitty Kwan. A questionnaire, designed in

consultation with the lead Consultants for the Communication Clinic: Dr. Tony O’ Sullivan and Dr.

Sian Morgan, was sent out to all parents and carers of children seen in the Communication Clinic

from October 2008-2010. Of the 15 respondents, only six felt that ‘there was a clear plan to support

my child’ outlined in the report, whilst two strongly disagreed with this statement. This indicates a

gap in communication between the diagnosing professionals and families, which needs to be

addressed in order to avoid unnecessary distress and confusion20.

Recommendation 8: Good communication is needed between healthcare professionals and parents

or carers to ensure they understand what a diagnosis of autism means and feel fully informed

throughout the diagnostic process, and to maintain realistic expectations of services.

Recommendation 9: Better education for all professionals in the partnership regarding the role of

health professionals in making an ASD diagnosis.

5.1.3.1 The case for Health Visitor and ASD specialist nurse involvement in diagnosis

Two key stakeholders raised the case for Health Visitors and specialist nurse involvement in ASD

diagnosis. This issue was therefore considered separately.

In February 2011, the Department of Health launched the ‘Health Visitor Implementation Plan 2011-

15. A call to action’ which outlines a radical new vision and expansion of Health Visitor services

across England21. Health visitors are trained nurses or midwives with specialist training in family and

community health and are provide an important service to help meet the needs of families. They are

skilled at spotting early issues, which may develop into problems or risks to the family if not

addressed, for example a parent struggling to cope or a child health issue which needs special

attention. They are public health nurses trained to work at community, family and individual level.

However, at the same time they provide or are the gateway to other services which families may

need.

22

The report indicates that the purpose of this Health Visitor expansion - an extra 4,200 health visitors

(or full-time equivalent) – is to address existing imbalances and to provide opportunities for clinically

effective intervention both through prompt identification of issues arising in the early years during

routine visits and developmental checks, and supporting families in their subsequent navigation of

healthcare services.

Healthcare professionals in Lewisham consistently reported an increase in the number of pre-school

age children referred to the ASD diagnostic services and it is known that the earlier a diagnosis is

made, the earlier interventions or therapies can begin. Health Visitors, through their often

longstanding relationship with children and families, are ideally placed to help identify children in

their early years and support children and their families or carers through the diagnostic process.

Health Visitors can play an important role in gathering information needed in order for a diagnosis to

be made, and with the correct training, could make important observations themselves.

Another way to improve diagnostic rates and provide training for professionals involved in the care

of children and young people with ASD is the use of ASD specialist nurses. There are differing models

involving ASD specialists already in use around the country largely involving specialist nurses,

although this role could potentially also be filled by a therapist with a specialist interest in ASD.

Tameside and Glossop Community Healthcare have established an Autism Specialist Nurse service

with a brief to:

Act as a point of contact for enquiries regarding ASD and provide advice and support to

individuals with an ASC, their carers and staff who support them.

Chair the Autism Strategy Group that will develop an overarching strategy for Autism in

Tameside that responds to the demands of national guidelines, policies and best practice.

Consult with user and carers in the development of the strategy, and on possible future

service development.

Co-ordinate training in awareness and support strategies for staff and carers of people with

an ASD.

Lead on the development of a pathway for access to assessment and services for people

with an ASD22.

The ASD nurse in Tameside and Glossop has a very strategic and advisory remit, with no clinical

sessions being undertaken by the individual.

23

In contrast, the Specialist Nurse for Autistic Spectrum Conditions at Warrington Community Services

Unit undertakes home visits providing observational evidence to help in the diagnosis of children

and young people with ASD as well as running the monthly behaviour advice clinic23.

Members of the Community Paediatric medical team, the children and adolescent mental health

services (CAHMS) team, community therapists, and the service users interviewed, view the lack of an

ASD specialist as a gap in the service at Lewisham. It is the view of the local stakeholders that an ASD

specialist would be able to take on the following roles:

To be involved in the implementation of a locally agreed ASD care pathway

To be the point-of-contact for parents and carers, as well as other healthcare and

education providers regarding the ASD diagnostic service.

To go out to schools and provide education and training regarding ASD.

To conduct assessments and make observations to aid with the diagnosis of ASD.

To be involved in training other healthcare professionals, in particular to aid with the

training of Health Visitors as outlined above.

To be involved in clinics and in the follow-up of children and young people with ASD.

A further suggestion made was that the post-holder could be based at Drumbeat School, and

provide outreach to other schools in the area as well as fulfilling the roles highlighted above. The

role of an ASD specialist nurse or therapist should therefore be investigated further and cost/benefit

analyses conducted.

Recommendation 10: The possibility of a designated ASD specialist or specialists should be

considered within current resources. The essential role of such a specialist locally would be to help

ensure children diagnosed with ASD are managed appropriately using an agreed care pathway.

Recommendation 11: Early identification and improved management of ASD should be considered

within the context of the current Health Visitor expansion should also be used to increase training in

ASD for these professionals to allow early identification of children with ASD.

5.2 Following up children and young people with ASD

NICE guidance suggests that a follow-up appointment should be offered within six weeks of the end

of autism assessment. The 20 children reviewed in the clinical audit, were still awaiting clinical

24

diagnosis to be made, and therefore were not suitable for further comment on time to follow-up to

be made.

The follow-up appointment, which is offered to the parents or carer without the child or young

person present, should address any questions or thoughts arising in the immediate post-diagnosis

period. This appointment is made, unless due to avoidable circumstances, with the diagnosing

clinician.

This was deemed invaluable by service users and by voluntary sector group representatives, as it

allows questions to be discussed quickly and openly, with the professional who gave the initial

diagnosis. This is normally someone with whom parents have already built up a rapport. In cases

where it is unavoidable for a different clinician to conduct this follow-up appointment, service users

stated that they wished to be told why this had occurred.

There also is potential for the use of an ASD specialist nurse within the follow-up services in

Lewisham. In particular, novel methods of routine follow-up,(e.g.) by telephone or e-mail, for high-

functioning children and young people and their families should be explored

Recommendation 12: Families with an ASD diagnosis should be seen for their first follow-up

appointment by the doctor who made the initial diagnosis if possible. However, if this is likely to

cause unnecessary, they should be reviewed by another doctor, with the reasons for this change

made clear to them.

Recommendation 13: Long-term medical follow-up for children and young people with ASD needs to

be targeted and more effective. Telephone follow-up or an e-mail discussion not necessarily with a

doctor may be suitable for certain groups of children.

5.2.1 Ongoing support of families

As important as it is to have that first follow-up appointment with a diagnosing clinician, it is

recognised that many of the questions in the immediate period post-diagnosis are about issues

other than medical care i.e. social support, benefits etc. To this effect, a multi-disciplinary follow-up

model was designed with pilot multi-disciplinary clinics running on average two times a month. This

pilot model began in July 2011, with funding secured until March 2012. The concept is to combine

and utilise the skill-mix and particular strengths of the ASD professionals working within the health

25

and voluntary sector in Lewisham to free up ‘doctor’ time to see more families, whilst enabling

questions to be answered.

The pilot model takes the standard 60 minutes of follow-up time allocated to each family, and

breaks this down into a 20 minute slot with the diagnosing clinician, and 40 minutes with an ASD

advisor from Lewisham Autism Support, a local voluntary sector organisation. This enables doctors

to see three families in the time during which one family would previously have been seen, but

importantly it allows families’ specific concerns to be addressed. Often these are concerns which

clinicians would not know the answer to and so would have to refer them onto another party,

leading to further delay and another time-consuming appointment to attend. Further referral to

Lewisham Autism Support may still be required. An example of a clinic plan is demonstrated in

Figure 5.2, taken from the ‘Proposal to develop a skill mix approach to autism follow up by the

community paediatric medical team’ written by Dr. Georgina Siggers in May 201024.

Figure 5.2. An example clinic plan. Taken from ‘A proposal to develop a skill mix approach to

autism follow up by the community paediatric medical team’.(Reproduced with kind permission of

Dr. G. Siggers)24

Time Dr ASD Advisor 1 ASD Advisor 2

13.20 Family 1

13.40 Family 2 Family 1

14.00 Family 3 Family 1 Family 2







16.20 Family 9 Family 8

16.40 Family 9

26

Preliminary cost calculations indicate that a joint skills clinic using both doctor and ASD advisor, as

indicated above, could save £24000 across a total of 122 clinics per year, compared to a follow-up

service run by a doctor alone. Furthermore, this model will free up doctor time with the potential to

release 81 clinics back into the Initial Paediatric Assessment Service24.

This model has been met with support by healthcare professionals and the ASD advisors from

Lewisham Autism Support alike. Furthermore, evaluation of this service showed overwhelming

support of this combined multi-disciplinary model by the service users themselves as they felt their

needs were best met by this combination. Service users were asked whether they preferred the

diagnosing clinician only, ASD advisor, or this multi-disciplinary model, and were found to be in

favour of this combined approach. Service users were firm that the ASD advisor should be along-side

the diagnosing doctor, not in the place of the doctor, however the preferred model was a

combination of both services.

The new Drumbeat school for children with ASD is due to open in September 2012; Part of the vision

for this school is to provide support, not just for children attending the school but for children with

ASD and their families throughout Lewisham. It is essential that links between Lewisham Autism

Support, the Medical Team at Kaleidoscope and Drumbeat are fully explored and evaluated to

ensure the most effective support package for families.

The current arrangements to support children and their families also include: Support to the child

and parents e.g. Health Visitors, Specialist Nurses and Portage; support to families to enable services

to be co-ordinated e.g. MAPP, Health Visitor; and support to whole family including children e.g.

Signal, Contact a Family. Additionally support is available for parents / carers not directly with/ to a

child e.g. Lewisham Autism Support,as well as courses such as Early Bird, Early Bird Plus or other

courses/workshops/ training offered (previously) by the Communication and Interaction Team /

SALT.

Recommendation 14: Options for supporting families should be considered in the light of evidence

resulting from the combined multi-disciplinary follow up pilot and also in the context of both existing

services and the opening of Drumbeat to ensure that needs are met in the most effective way.

5.3 Children and Adolescent Mental Health Services (CAMHS)

The CAHMS service in Lewisham is based at Kaleidoscope and sees about 180 referrals for ASD per

year. They look after children and young people with ASD and severe mental health or behavioural

problems often around violence or aggression. They do not have the capacity to see children with

27

mild or moderate behavioural problems and do not see very young children i.e. 2-3 year olds where

parents or carers are worried about behaviour.

There is no capacity within the service to invite referrals and healthcare professionals worry that

there is a vast unmet need. It is important to note that 80% of all referrals to CAMHS query whether

ADHD or ASD is part of the child’s problems.

Changes to the provision of the Communication Interaction Services and to temporary arrangements

to ensure ongoing support of parents were noted by many stakeholders. It was felt that available

support for parents and carers had reduced causing an increase in often complex referrals to

CAMHS. With the opening of Drumbeat School in September 2012, the provision of post-diagnosis

support should be kept under review to ensure that the need of children with ASD and their families

is met.


resulting from the combined multi-disciplinary follow up pilot and also in the context of the opening

of Drumbeat to ensure that needs are met in the most effective way.

5.3.1 Referrals to CAMHS

Approximately 80% of ASD referrals to CAMHS are from the community paediatrics service. Every

referral received is initially screened by the team leader before being discussed at the weekly team

meeting. Children and young people are prioritised according to need, and placed on the waiting list

to be seen.

The current wait is 12-13 weeks however CAMHS stakeholders feel that this has the potential to

increase considerably with potential staff cuts due to service redesign. The service generally

continues to see young people for eight months to one year, but will close cases earlier if there is

significant improvement. However they frequently see the same young people again as they struggle

to cope. It is therefore important that staffing levels and resources are maintained at an adequate

level to avoid both an increase in waiting time for this service, and to ensure continuity of support

and for children and young people with ASD and their families, who access the CAMHS service.

Recommendation 15: Any review or change to CAMHS should include steps to ensure that staffing is

adequate to avoid waiting list increases and to move the service forward.

5.3.2 Transition to adult services

28

NICE guidance recommends that if young people present at the time of transition to adult services,

the children and young people’s ASD team should carry out the autism diagnostic assessment jointly

with the adult team. It was demonstrated by the baseline audit that this joint assessment does not

occur in Lewisham, and this is considered to be a major service gap.

However, South London and Maudsley Mental Health Trust have been commissioned to deliver a

secondary care Autism Spectrum Disorder (ASD) diagnostic service for adults. This service has been

operational since June 2011, and over 20 adults in Lewisham have received a diagnosis of ASD.

Referral is via the patient’s GP and involves screening by the Community Mental Health Team prior

to being referred on for diagnosis. Specialist Cognitive Behavioural Therapy for ASD has also been

commissioned to provide post diagnosis support for adults with a new diagnosis.

The provision of adult health and social care services for adults with ASD was a major theme of

concern from all the stakeholders interviewed and shall be covered in more detail later in this

section. However CAMHS health professionals interviewed highlighted the huge problem they faced

with particular regard to young people with ASD without a learning disability, who fall between the

remit of mental health and learning disability adult services but who may have severe behavioural

issues and are not equipped to live independently. These behavioural problems may be related to

aggression or sexual behaviour, and these young people and their families, having been supported

by CAMHS up to the age of 18 years, can suddenly find that there are no services out there to help

them. Adult mental health services will only get involved if there is a specific mental health problem

as well as a diagnosis of ASD and therefore these young people may end up in prison or sleeping on

the streets.

This appears to be a national problem, with no obvious cases of good practice or examples of where

these issues are being handled particularly well. The over-riding view in CAMHS as well as among

other stakeholders and service users is that even if there are no services out there to support a

young person as they reach the end of CAMHS services, this needs to be communicated explicitly to

the young person and their family, and preparation for this needs to start early, and be designed

around the individual needs of the young person and their family.

This view is not, however, shared by everybody and there is no local consensus as to exactly how

adult mental health services should or might provide urgent support for all adults with ASD. There

needs to be a more explicit discussion amongst stakeholders on this point.

29

Recommendation 16: Transition beyond children and young people’s services needs to be started

early, and if there are no adult services available for a young person to access this must be prepared

for from an early age.

Recommendation 17: A more explicit discussion amongst stakeholders as to how adult mental health

services will support young people with ASD through transition from children’s services is needed.

This discussion should take into account the commissioning of the adult secondary care Autism

Spectrum Disorder (ASD) diagnostic service in Lewisham.

5.4 Therapies

There is no designated ASD pathway for Occupational Therapy in Lewisham. This was identified by

therapists as a service gap as it affects the therapy goals that physiotherapists and Speech and

Language therapists (SLT) are able to achieve with children and young people referred to their

services. Physiotherapists would normally only see children and young people with ASD and a co-

morbidity. However because there is no OT pathway physiotherapists find that children with ASD are

often referred to them although there are no other significant problems.

ASD forms about 30% of the caseload for the paediatric Speech and Language (SLT) service in

Lewisham. However, this service, and the therapy goals they are able to achieve with children and

young people with ASD is also affected by the lack of the OT service. It was noted by both therapists

and service users that a pathway including all therapies would avoid therapies all dealing separately

with individual children at the same time.

Recommendation 18: A designated ASD pathway to meet Occupational Therapy needs is needed

urgently in order to improve outcomes and throughput of children across all therapies.

Recommendation 19: A pathway involving all therapists for children under 5 and school-age children

should be developed in order to avoid therapies all dealing separately with individual children at the

same time.

The way in which therapy is conducted i.e. in blocks of 6 weeks on and 6 weeks off was highlighted

by service users as being confusing or even unhelpful. It is therefore important that there is good

communication between therapists and the families so that they may understand the rationale for

this.

30

Recommendation 20: Good communication is essential between therapists and families in particular

regarding the reasoning for 6 week blocks of ‘therapy time’ with no formal therapy in between.

5.5 Other specialist services

5.51 Multi Agency Planning Pathway (MAPP)

The Multi Agency Planning Pathway (MAPP) service in Lewisham is involved in the care of ASD

children and young people with complex behavioural difficulties, or where there is a complexity of

family need. MAPP uses a ‘team around the child ‘approach whereby the specific needs of the child

are identified, and referrals to necessary services are made. There were 36 children and young

people referred and five re-referrals to MAPP between January 2010 and August 2011. An additional

eight referrals were not accepted by the service.

After a child’s needs are identified, a meeting is held with the family and representatives of the

necessary services to formulate a plan suited to the needs of the child and their family. Due to the

number of services involved, and work pressures within these organisations, there can be a long

delay between the time of referral and the ‘team around the child’ meeting. Due to the complexity

of cases referred to MAPP, this delay must be minimised in order to formulate a timely plan to

provide the stability needed for the child and their family. A different structure to these meetings,

i.e. more than one ‘team around the child’ meeting scheduled for a particular day could be

considered to allow partner service representatives to attend these meetings more easily.

Recommendation 21: MAPP and partner organisations must work together to minimise delay in time

from referral to the ‘team around the child meeting’.

Children and young people may be referred to MAPP by any healthcare professional or by their

school, and remain under MAPP until either the family is known to be coping well, or they move out

of borough. Most children remain under review and are contacted annually to monitor progress.

Of note, there is a consistent stream of late diagnoses referred to MAPP, many of whom are young

people not succeeding at school at Year 9 or 10. Of the 36 children and young people accepted by

MAPP between January 2010 and August 2011, 20 were aged 14 years or above at the time of

referral. The oldest person referred was aged 22 years at the time of referral to this service. It is

likely more older children may be affected in this way. Better training for education providers,

31

particularly in mainstream schools, is needed in order to identify older children who may not have a

diagnosis of ASD before they fail to succeed in school.

Recommendation 22: More training is needed for education providers to identify ASD in older

children and young people without a previous diagnosis before they fail to succeed at school.

5.52 Portage

The Lewisham Portage service is a home-visiting education service for children under four years who

have special needs. The management of Portage now lies within the MAPP service. A weekly home

visit is offered to families where there is no other educational provision. Portage review children

referred with a six month delay in development or disability. In particular, children may be referred

at two years of age due to Health Visitor concerns. 75% of children seen have ASD but may not have

their diagnosis yet. Once referred, children are retained within the service until they are completing

15 hours a week in an educational setting – be that in school or nursery, or until they reach the

statuatory school age of five years. Children can be referred to portage up until their 4 th birthday,

after which time they will not be accepted. The cut-off point for access to Portage services used to

be five years of age, however due to capacity issues this was reduced to four years. There is now no

service in place for children referred after their 4 th birthday until they reach the age for referral to

school services. It was also noted by a range of stakeholders that despite a shortage of staff and

managers within this service, the demand for Portage is increasing.

Recommendation 23: How the needs of children referred to Portage services between their fourth

and fifth birthdays should be met requires review.

5.53 Special Needs Nursing and School Nursing Services

The Special Needs (SN) nurse service in Lewisham looks after children and young people aged 0-19

years of age. Children and young people are referred to this service by paediatricians or health

visitors for support and practical advice with specific issues e.g. continence or feeding. There is no

defined ASD pathway for either Special Needs Nursing Services or for the School Nursing team,

however ASD forms part of their remit. Special Needs Nurses also go into Special Schools such as

Watergate, and play a part in transition planning for children and young people with ASD.

32

The SN nurses are trained paediatric nurses. They work closely with the Special Needs Health Visitor

currently working in Lewisham, and are being involved in Heath Visitor training. The projected

increase in numbers of Health Visitors should be used to provide a safe environment for

‘embarrassing’ issues such as toileting or problems with continence to be discussed with the families

of children with ASD. This will allow strategies to be introduced into family routine from the early

years.

Recommendation 24: The expansion of the Health Visitor programme, should be used to provide a

safe environment for issues such as toileting or problems with continence to be discussed with the

families of children under five years of age with ASD. This will allow strategies to be introduced into

family routine from the early years.

5.6 Voluntary sector services

The main voluntary sector services available for children and young people with ASD are Contact a

Family, Signal, and Lewisham Autism Support. The input and support given to families by these

services were recognised as being a critical part of ASD services in Lewisham. In particular, the 16+

group run by Signal was described as being one of the few groups where parents and carers of young

people with ASD can discuss issues and get support as their child undergoes transition from child

services to adult services.

Carers Lewisham offer support to all carers including carers of children with ASD and provide

support to enable a carer to have a break. This may include providing support directly to the child

they care for. Lewisham Opportunity Group provides early year’s provision and support to families

who have children under five years of age, including families who have children who are not yet

accessing the nursery.

In particular the service provided by Lewisham Autism Support was highlighted by service users and

by all healthcare professionals interviewed as being crucial to the ASD service in Lewisham in the

nature of its support to parents.

5.6.1 Lewisham Autism Support

Lewisham Autism Support (LAS) was started in 2003 to provide support, post-diagnostic advice and

information to the parents and carers of children with a diagnosis of ASD. Currently LAS are funded

by LB Lewisham (Children’s Social Care) (£26,800) and by NHS Lewisham (£13,200).

33

The aims of the LAS service is to provide a highly effective, individualised family support service

immediately post diagnosis to improve the knowledge and confidence of parents/carers of children

and young people with Autism Spectrum Disorder living in Lewisham. LAS also provides a level of

behaviour support advice & information to families as part of the family support service.

The key aims of LAS are to:

enable parents to be informed on what a positive diagnosis of ASD means and where / how

support can be sought

build capability of parents to effectively meet needs of children with ASD

work with parents to foster resilience to challenges and difficulties

facilitate the development of local support networks and partnerships, and encourage self-

help across local ASD community

Referrals to LAS are made by the Lewisham Healthcare NHS Trust Community Paediatricians and

from specialists at the South London and Maudsley NHS Trust, both based at Kaleidoscope. All

families with a child/young person (0-19 years) who has recently been diagnosed as having ASD can

access the LAS service. The core element of the LAS service delivery is to respond to this need as

soon as possible post diagnosis.

LAS were re-specified in March 2011 in consultation with SIGNAL. The re-specification was

undertaken to respond to the clearance of the waiting list for ASD diagnostic assessments by the

Medical Team, and at this time a temporary uplift to the LAS service was specified to help deal with

an anticipated increase in numbers of referrals. In 2011, LAS received 182 referrals to the service and

to date in 2012 130 referrals have been received. It was anticipated that the clearance of waiting list

by the Medical Team would increase the number of referrals to LAS. However, since the clearance of

the waiting list, there has not been a proportional increase in referrals to LAS with no clear indication

why this has happened. This suggests that there have been issues with the referral process from the

Medical Team to LAS.

Monitoring data shows that whilst the service is prioritising post-diagnostic support, some families

continue to ‘come back’ to the service for additional support at various points, often in line with key

events in their children’s lives. This needs to be considered in the context of the future ASD pathway.

There continues to be difficulties in engaging with some families after diagnosis for various reasons,

and current monitoring would indicate that a significant amount of activity is directed to trying to

34

contact families to arrange support. The LAS advisers have also been involved in a pilot twice

monthly multi-disciplinary follow-up clinic alongside the Medical team at Kaleidoscope. This clinic

utilises the skill-mix and particular strengths of both the LAS advisers and the doctors, freeing up

‘doctor’ time to see more families.

As described in Section 5.2, the pilot clinic model takes the standard 60 minutes of follow-up time

allocated to each family, and breaks this down into a 20 minute slot with the diagnosing clinician,

and 40 minutes with an LAS advisor. This enables doctors to see three families in the time one family

would previously have been seen, but importantly it allows families’ specific concerns which in the

immediate period post-diagnosis may be about issues other than medical care i.e. social support or

benefits, to be addressed.

This model has been met with support by healthcare professionals and the ASD advisors from

Lewisham Autism Support alike. Furthermore, evaluation of the pilot follow-up clinics showed

overwhelming support of this combined multi-disciplinary model by the service users themselves as

they felt their needs were best met by this combination.


resulting from the combined multi-disciplinary follow up pilot and also in the context of both existing

services and the opening of Drumbeat to ensure that needs are met in the most effective way.

5.7 Transition services

The term ‘transition’ is generally used to describe transition between children and adult services,

however it was noted by many stakeholders that ‘transition’ for a child or young person may occur

at other time-points and these also need careful planning. In particular, the move from nursery to

primary school and between primary and secondary school need to be prepared for. Children who

are able to manage adequately, or even well, with support provided by their primary school may

struggle upon transition to secondary education. Strategies need to be put in place and regularly

reviewed to ensure they adequately address the specific needs of a child and their family, and to

support children to remain within the mainstream school system in Lewisham if possible.

Recommendation 25: Early planning needed for transition from nursery to primary school, and

primary to secondary school to allow children to remain within the mainstream school system in

Lewisham if possible.

35

5.7.1 Transition between children and adult services

The lack of defined services or a pathway for young people with ASD once they exceed the age of

children’s services was a source of concern for health-care professionals and service users alike. This

was described by many stakeholders as being one of the most important service gaps across the

entire ASD service in Lewisham. Whilst Lewisham is not alone in not providing adult ASD services for

young people without a mental health or learning impairment, this deficit was felt to impact on all

areas of the current ASD children’s service.

The lack of hand-over of care was highlighted as of particular concern by the therapists, however the

main concern amongst health-care professionals and service-users was the lack of services and

support for young people and their families with a previous diagnosis of ASD. Appendix 10 shows the

eligibility criteria for both Children’s and adult social care25. Once they reach the age of adult

services, young people are assessed as one of four levels of need using Department of Health

criteria, and which are less inclusive than eligibility criteria used by children’s services. The four

levels of need describe the risk to a person if they do not receive support and are defined as: critical,

substantial, moderate and low. Since 2005, the policy in Lewisham has been that those defined as

critical or substantial risk are eligible for a Community Care assessment26.

The nature of ASD, as a pervasive communication disorder of social communication and behavioural

impairment means that eligibility for an assessment is unlikely, except for the distinct minority of

young people. There are clearly outstanding needs which are met in childhood by the provision of

social care through the local authority or through schools, however in adulthood there is no

statuatory obligation to meet this need27.

Transition should begin in Year 9 at 14 years of age and should involve effective planning and joint

working between health, social care, education and employment organisations. There should be

clarity about who the lead clinician is, to ensure continuity of care. Plans need to be realistic and if it

is likely a young person will be ineligible for support or services, this must be made explicitly clear

and planned for. Educational opportunities should be tailored to identify a pathway into

employment for young people with ASD if appropriate.

Recommendation 26: Planning for transition to adult services for every young person with ASD must

begin at 14 years of age and involve joint working between health, social care, education and

employment organisations. There should be clarity about who the lead clinician is, to ensure

continuity of care.

36

Recommendation 27: Identification of pathways into employment must be formal part of education

for young people with ASD.

Historically, there has been no service specifically to support adults in the borough with Autistic

Spectrum Disorder (ASD) who are not FACS (Fair Access to Care) eligible. However, a new Lewisham

Information, Advice and Support Service for adults with a diagnosis of ASD or Asperger’s syndrome

has been commissioned to support this client group. This service is provided by Burgess Autistic

Trust and commenced in June 2012.

The main outcome areas for this service are:

Information Development

Facilitating Peer Support

Support in decision making and accessing generic services. (This will include

supporting people in identifying and accessing employment opportunities)

Providing an advisory function on autism for health and social care professionals

Recommendation 28: The single access point for the ‘Information, Advice and Support Service’ will

provide useful information and trouble-shooting services for young people with ASD. This service

should be monitored regularly to identify any gaps in the service provided and to ensure it meets the

needs of adults with ASD in Lewisham. These findings should be shared with the Children and Young

People’s Services.

Recommendation 29: Transition between children and adult services, and in particular the current

gap existing for young people with ASD without mental health or learning impairment needs to

addressed urgently by joint working between Children and Young People services and Adult services.

5.8 The management of children and young people with ASD

As mentioned in the previous sections, once a diagnosis of ASD is made a range of services may be

involved in the care of the child or young person. Whilst these services may over-lap in certain

circumstances, for example, the services utilised to form the ‘team around the child’ if referred to

MAPP, there is no documented management pathway for all children with ASD. A management

pathway could be personalised and contain details of all the services involved in a child’s care, help

to highlight quickly which services are outstanding, and ensure that children are followed up

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adequately. This pathway is crucial to help bench-mark the quality of the service provided in

Lewisham and urgently needs to be agreed by all stakeholders






The NICE guidelines recommend a key-worker be assigned to each child or young person at the time

of referral. A key-worker or care-co-ordinator from within the health services may be particularly

useful as within the care pathway in Lewisham as after diagnosis a child may be referred to different

members of the multi-disciplinary team or external services, the family may not be sure if the

referral was ever made, or if they are now waiting to be seen. A key-worker could provide a link

between the family and healthcare professionals, and be the first port of call should the family have

any questions or concerns regarding their care. A key worker could also help a family to understand

the role of the different services to which a family has been referred, which will help maintain

realistic expectations and help them understand which appointment relates to which problem their

child is experiencing.

Recommendation 30: Consideration should be given to how key-workers from within health services,

as recommended in the NICE guidelines, could be used to co-ordinate care for individual children or

young people with ASD in Lewisham.

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6. CONCLUSIONS

A comprehensive review of ASD services in Lewisham has revealed that there is good evidence to

support the view of local providers that the prevalence of ASD amongst children in Lewisham may be

as high as 2%. Future planning should be on the basis of a minimum prevalence of 1.5%

(Recommendation 1).

In general, services in Lewisham match what is recommended in key national policy documents.

However there are some areas of important areas of concern that the Partnership will need to

address to ensure the best possible care for children and young people in Lewisham:

Current service levels within the medical team need to be maintained (Recommendation 2).

There is a clear need for an agreed and shared pathway which includes a mechanism for

tracking children through the pathway. This pathway should take into account the services

provided at Drumbeat School, opening in September 2012. This is crucial to benchmark the

quality of ASD services in Lewisham (Recommendation 3).

Very careful consideration must be given to how Health Visitors can be used most effectively

to support existing ASD services (Recommendation 11 and 24.

Careful consideration needs to be given to whether an ASD specialist post is possible to

facilitate the management of the ASD pathway and individual children (Recommendation 10

and 13).

Options for supporting families should be considered in the light of evidence resulting from

the combined multi-disciplinary follow up pilot and also in the context of both existing

services and the opening of Drumbeat to ensure that needs are met in the most effective

way (Recommendation 14).

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Transition beyond children and young people’s services must be planned for from 14 years

of age and involve joint working between health, social care, education and employment

organisations (Recommendation 26, 28 and 29).

The transition needs of young people with ASD without mental health or learning

impairment must be addressed urgently by joint working between Children and Young

People services and Adult services (Recommendation 16 and 29).

Consideration should be given to how key-workers from within health services could be used

for individual children or young people with ASD in Lewisham (Recommendation 30).

A comprehensive list of all recommendations made in this report is included in Section 7.

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7. RECOMMENDATIONS

Recommendation 1: There is good evidence to accept a current prevalence of ASD of between 1.5

and 2%. This is widely acknowledged, taking into account increased diagnosis of this disorder. This

needs to considered when planning health and education services for children and young people with

ASD.

Recommendation 2: The current staffing capacity of the Community Paediatrics team in relation to

ASD needs to be maintained to avoid further increase in numbers of children waiting over 18 weeks.






Recommendation 4: All children should also have their diagnostic outcome recorded on Rio to ensure

appropriate and timely follow-up, and to enable audit.

Recommendation 5: All ASD diagnostic assessments must take place within three months of referral

to the autism team.

Recommnedation 6: As well as considering the time from referral to first appointment, consideration

must be given to the time between first and second appointment, in order to minimise the time to

diagnosis for children with ASD and their families.

Recommendation 7: The inclusion of an education psychologist within the diagnostic pathway, or

easily accessible for referral by the Community Paediatrics team is needed.

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Recommendation 8: Good communication is needed between healthcare professionals and parents

or carers to ensure they understand what a diagnosis of autism means and feel fully informed

throughout the diagnostic process, and to maintain realistic expectations of services.

Recommendation 9: Better education for all professionals in the partnership regarding the role of

health professionals in making an ASD diagnosis.

Recommendation 10: The possibility of a designated ASD specialist or specialists should be

considered within current resources. The essential role of such a specialist locally would be to help

ensure children diagnosed with ASD are managed appropriately using an agreed care pathway.

Recommendation 11: Early identification and improved management of ASD should be considered

within the context of the current Health Visitor expansion should also be used to increase training in

ASD for these professionals to allow early identification of children with ASD.

Recommendation 12: Families with an ASD diagnosis should be seen for their first follow-up

appointment by the doctor who made the initial diagnosis if possible. However, if this is likely to

cause unnecessary, they should be reviewed by another doctor, with the reasons for this change

made clear to them.

Recommendation 13: Long-term medical follow-up for children and young people with ASD needs to

be targeted and more effective. Telephone follow-up or an e-mail discussion not necessarily with a

doctor may be suitable for certain groups of children.


resulting from the combined multi-disciplinary follow up pilot and also in the context of the opening

of Drumbeat to ensure that needs are met in the most effective way

Recommendation 15: Any review or change to CAMHS should include steps to ensure that staffing is

adequate to avoid waiting list increases and to move the service forward.

Recommendation 16: Transition beyond children and young people’s services needs to be started

early, and if there are no adult services available for a young person to access this must be prepared

for from an early age.

Recommendation 17: A more explicit discussion amongst stakeholders as to how adult mental health

services will support young people with ASD through transition from children’s services is needed.

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Recommendation 18: A designated ASD pathway to meet Occupational Therapy needs is needed

urgently in order to improve outcomes and throughput of children across all therapies.

Recommendation 19: A pathway involving all therapists for children under 5 and school-age children

should be developed in order to avoid therapies all dealing separately with individual children at the

same time.

Recommendation 20: Good communication is essential between therapists and families in particular

regarding the reasoning for 6 week blocks of ‘therapy time’ with no formal therapy in between.

Recommendation 21: MAPP and partner organisations must work together to minimise delay in time

from referral to the ‘team around the child meeting’.

Recommendation 22: More training is needed for education providers to identify ASD in older

children and young people without a previous diagnosis before they fail to succeed at school.

Recommendation 23: How the needs of children referred to Portage services between their fourth

and fifth birthdays should be met requires review.

Recommendation 24: The expansion of the Health Visitor programme, should be used to provide a

safe environment for issues such as toileting or problems with continence to be discussed with the

families of children under five years of age with ASD. This will allow strategies to be introduced into

family routine from the early years.

Recommendation 25: Early planning needed for transition from nursery to primary school, and

primary to secondary school to allow children to remain within the mainstream school system in

Lewisham if possible.

Recommendation 26: Planning for transition to adult services for every young person with ASD must

begin at 14 years of age and involve joint working between health, social care, education and

employment organisations. There should be clarity about who the lead clinician is, to ensure

continuity of care.

Recommendation 27: Identification of pathways into employment must be formal part of education

for young people with ASD.

Recommendation 28: The single access point for the ‘Information, Advice and Support Service’ will

provide useful information and trouble-shooting services for young people with ASD. This service

should be monitored regularly to identify any gaps in the service provided and to ensure it meets the

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needs of adults with ASD in Lewisham. These findings should be shared with the Children and Young

People’s Services.

Recommendation 29: Transition between children and adult services, and in particular the current

gap existing for young people with ASD without mental health or learning impairment needs to

addressed urgently by joint working between Children and Young People services and Adult services.

Recommendation 30: Consideration should be given to how key-workers from within health services,

as recommended in the NICE guidelines, could be used to co-ordinate care for individual children or

young people with ASD in Lewisham.

8. REFERENCES

1 Autism: Recognition, referral and diagnosis of children and young people on the autism spectrum.

NICE. September 2011

2 Assessment, diagnosis and clinical interventions for children and young people with autism

spectrum disorders. A national clinical guideline. SIGN guidelines July 2007

3Parliamentary Office of Science and Technology Autism Postnote

4 National Autism Plan for Children 2003

5 Honda H, Shimizu Y, Rutter M. No effect of MMR withdrawal on the incidence of autism: a total

population study. J Child Psychol Psychiatry. 2005; 46: 472-79

6 Green H, McGinnity A, Meltzer H, Ford T, Goodman R. Mental health of children and young people

in Great Britain. London: Stationery Office; 2004.

7 Baird G, Simonoff E, Pickles A, Chandler S, Loucas T, Meldrum D, Charman T. Prevalence of

disorders of the autism spectrum in a population cohort of children in South Thames: the Special

Needs and Autism Project (SNAP). Lancet. 2006; 368@ 210-15.

8 Baron-Cohen S, Scott F, Allison C, Williams J, Bolton P, Matthews F, Brayne C. Prevalence of autism-

spectrum conditions: UK school-based population study. B J Psych. 2009; 194: 500-509

9 Posserud M-B, Lundervold A, Gillberg C. Autistic features in a total population of 7-9 years old

children assessed by the ASSQ (Autism Spectrum Screening Questionnaire). Journal of Child

Psychology and Psychiatry. 2006; 47(2):167-75.

44

10Russell G, Ford T, Steer C, Golding J. Identification of children with the same level of impairment as

children on the autistic spectrum and analysis of their service use. Journal of Child Psychology and

Psychiatry. 2010; 51(6):643-51.

11DH Autistic Spectrum Disorders. Change for children: Every child matters. Exemplar 2004

12 Autism Act 2009, Section 1 (1)

13NAS (2008) Think Differently – Act Positively: Public perceptions of autism, p. 19

(www.autism.org.uk/content/1/c6/01/47/21/think%20diff%20acrt%20pos.pdf)

14 Brugha TS, McManus S, Bankart J, Scott F, Purdon S, Smith J, Bebbington P, Jenkins R, Meltzer H.

Epidemiology of autism spectrum disorders in adults in the community in England. Arch Gen

Psychiatry. 2011; 68(5): 459-65

15Knapp M, Romeo R, Beecham J. Economic cost of autism in the UK. Autism. 2009 May;13(3):317-

36.

16 Supporting people with autism through adulthood. National Audit Office. June 2009.

17Implementing ‘fulfilling and rewarding lives’. Statuatory guidance for local authorities and NHS

organisations to support implementation of the autism strategy. Department of Health. December

2010.

18http://data.london.gov.uk/datastore/package/gla-demographic-projections

19 Children with autistic spectrum known to schools. Learning Disabilities Profile 2012. Learning

Disabilities Observatory. www.ihal.org.uk/profiles

20Banwell E. Service related project levels of parental satisfaction with the Lewisham

Communications Clinic Report Letter. January 2012.

21Health Visitor Implementation Plan 2011-15. A call to action. Department of Health. January 2011.

22http://www.tamesideandglossop.nhs.uk/templates/Page____1869.aspx

23http://www.warrington-pct.nhs.uk

24Siggers G. A proposal to develop a skill mix approach to autism follow up by the community

paediatric medical team. May 2011.

25 The Children Act 1989.

45

http://www.tamesideandglossop.nhs.uk/templates/Page____1869.aspx

http://www.ihal.org.uk/profiles

http://data.london.gov.uk/datastore/package/gla-demographic-projections%20

http://www.ncbi.nlm.nih.gov/pubmed/19369391#%23

http://www.ncbi.nlm.nih.gov/pubmed?term=%22Beecham%20J%22%5BAuthor%5D

http://www.ncbi.nlm.nih.gov/pubmed?term=%22Romeo%20R%22%5BAuthor%5D

http://www.ncbi.nlm.nih.gov/pubmed?term=%22Knapp%20M%22%5BAuthor%5D

26 Prioritising need in the context of Putting People First: A whole system approach to eligibility for

social care: Guidance on Eligibility Criteria for Adult Social Care, Department of Health 2010.27 Autism needs analysis: The needs of adults with an Autism Spectrum Disorder (particularly

Asperger syndrome). Sadie King. March 2009.

APPENDIX 1

Diagnostic criteria for ASD

(DSM-IV-TR and ICD-10)

1. DSM-IV-TR

299.00 Autistic Disorder

A. A total of six (or more) items from (1), (2) and (3), with at least two from (1), and one each from (2) and (3):

(1) qualitative impairment in social interaction, as manifested by at least two of the following:

(a) marked impairment in the use of multiple nonverbal behaviours such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

(b) failure to develop peer relationships appropriate to developmental level

(c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (eg, by a lack of showing, bringing, or pointing out objects of interest)

(d) lack of social or emotional reciprocity

(2) qualitative impairments in communication as manifested by at least one of the following:

(a) delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gestures or mime)

(b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

(c) stereotyped and repetitive use of language or idiosyncratic language

(d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

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(3) restricted repetitive and stereotyped patterns of behaviour, interests and activities, as manifested by at least one of the following:

(a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

(b) apparently inflexible adherence to specific, non-functional routines or rituals

(c) stereotyped and repetitive motor mannerisms (eg, hand or finger flapping or twisting, or complex whole body movements)

(d) persistent preoccupation with parts of objects

B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication or (3) symbolic or imaginative play

C. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder

299.80 Asperger’s Disorder

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

(1) marked impairment in the use of multiple nonverbal behaviours such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

(2) failure to develop peer relationships appropriate to developmental level

(3) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (eg, by a lack of showing, bringing or pointing out objects of interest to other people)

(4) lack of social or emotional reciprocity

B. Restricted repetitive and stereotyped patterns of behaviour, interests, and activities, as manifested by at least one of the following:

(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

(2) apparently inflexible adherence to specific, non functional routines or rituals

(3) stereotyped and repetitive motor mannerisms (eg, hand or finger flapping or twisting, or complex whole-body movements)

(4) persistent preoccupation with parts of objects

C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

D. There is no clinically significant general delay in language (eg, single words used by age 2 years, communicative phrases used by age 3 years).

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E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behaviour (other than in social interaction), and curiosity about the environment in childhood.

F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.

299.80 Pervasive Developmental Disorder Not Otherwise Specified (Including Atypical Autism)

This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction associated with impairment in either verbal or nonverbal communication skills or with the presence of stereotyped behaviour, interest, and activities, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example, this category includes ‘atypical autism’ – presentations that do not meet the criteria for Autistic Disorder because of late age at onset, atypical symptomatology, or subthreshold symptomatology, or all of these.

The diagnostic criteria for DSM-IV-TR have been reprinted with permission from the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision, (Copyright 2000). American Psychiatric Association.

2. ICD-10

F84 Pervasive developmental disorders

A group of disorders characterized by qualitative abnormalities in reciprocal social interactions and in patterns of communication, and by a restricted, stereotyped, repetitive repertoire of interests and activities. These qualitative abnormalities are a pervasive feature of the individual’s functioning in all situations.

Use additional code, if desired, to identify any associated medical condition and mental retardation.

F84.0 Childhood autism

A type of pervasive developmental disorder that is defined by: (a) the presence of abnormal or impaired development that is manifest before the age of three years, and (b) the characteristic type of abnormal functioning in all the three areas of psychopathology: reciprocal social interaction, communication, and restricted, stereotyped, repetitive behaviour. In addition to these specific diagnostic features, a range of other nonspecific problems are common, such as phobias, sleeping and eating disturbances, temper tantrums, and (self-directed) aggression.

Autistic disorder Infantile:

• autism

• psychosis

Kanner’s syndrome

Excludes: autistic psychopathy (F84.5)

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F84.1 Atypical autism

A type of pervasive developmental disorder that differs from childhood autism either in age of onset or in failing to fulfil all three sets of diagnostic criteria. This subcategory should be used when there is abnormal and impaired development that is present only after age three years, and a lack of sufficient demonstrable abnormalities in one or two of the three areas of psychopathology required for the diagnosis of autism (namely, reciprocal social interactions, communication, and restricted, stereotyped, repetitive behaviour) in spite of characteristic abnormalities in the other area(s). Atypical autism arises most often in profoundly retarded individuals and in individuals with a severe specific developmental disorder of receptive language.

Atypical childhood psychosisMental retardation with autistic features

Use additional code (F70-F79), if desired, to identify mental retardation.

F84.5 Asperger’s syndrome

A disorder of uncertain nosological validity, characterized by the same type of qualitative abnormalities of reciprocal social interaction that typify autism, together with a restricted, stereotyped, repetitive repertoire of interests and activities. It differs from autism primarily in the fact that there is no general delay or retardation in language or in cognitive development. This disorder is often associated with marked clumsiness. There is a strong tendency for the abnormalities to persist into adolescence and adult life. Psychotic episodes occasionally occur in early adult life.

Autistic psychopathySchizoid disorder of childhood

F84.8 Other pervasive developmental disorders

F84.9 Pervasive developmental disorder, unspecified

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APPENDIX 2: Conditions which may co-exist with a diagnosis of ASD1

Mental and behaviour problems and disorders:

ADHD

anxiety disorders and phobias

mood disorders

oppositional defiant behaviour

tics or Tourette syndrome

OCD

self-injurious behaviour

Neuro-developmental problems and disorders:

global delay or intellectual disability

motor coordination problems or Developmental co-ordination disorder

academic learning problems, for example in literacy or numeracy

speech and language disorder

Medical or genetic problems and disorders:

epilepsy and epileptic encephalopathy

chromosome disorders

genetic abnormalities, including fragile X

tuberous sclerosis

muscular dystrophy

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neurofibromatosis

Functional problems and disorders:

feeding problems, including restricted diets

urinary incontinence or enuresis

constipation, altered bowel habit, faecal incontinence or encopresis

sleep disturbances

vision or hearing impairment.

APPENDIX 3 Signs and symptoms of possible autism in preschool children (or equivalent mental age)1

Social interaction and reciprocal communication behaviours

Spoken language

Language delay (in babble or words, for example less than ten words by the age of 2 years)

Regression in or loss of use of speech Spoken language (if present) may include unusual:

- non-speech like vocalisations

- odd or flat intonation

- frequent repetition of set words and phrases (‘echolalia’)

- reference to self by name or ‘you’ or ‘she/he’ beyond 3 years

- reduced and/or infrequent use of language for communication,

(eg) the use of single words although able to speak in sentences

Responding to others

Absent or delayed response to name being called, despite normal hearing Reduced or absent responsive social smiling Reduced or absent responsiveness to other people’s facial expressions or feelings Unusually negative response to the requests of others (demand avoidant behaviour) Rejection of cuddles initiated by parent or carer, although may initiate cuddles

themselves

Interacting with others

Reduced or absent awareness of personal space, or unusually intolerant of people entering their personal space

Reduced or absent social interest in others, including children of his/her own age – may reject others;

if interested in others, may approach others inappropriately, seeming to be aggressive

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or disruptive Reduced or absent imitation of others’ actions Reduced or absent initiation of social play with others, plays alone Reduced or absent enjoyment of situations that most children like, for example,

birthday parties Reduced or absent sharing of enjoyment 1 (continued) Signs and symptoms of possible

autism in preschool children (or equivalent)Eye contact, pointing and other gestures

Reduced or absent use of gestures and facial expressions to communicate (although may place adult’s hand on objects)

Reduced and poorly integrated gestures, facial expressions, body orientation, eye contact (looking at people’s eyes when speaking) and speech used in social communication

Reduced or absent social use of eye contact, assuming adequate vision Reduced or absent joint attention shown by lack of:

- gaze switching

- following a point (when someone points at object– may look at hand)

using pointing at or showing objects to share interest

Ideas and imagination

Reduced or absent imagination and variety of pretend play

Unusual or restricted interests and/or rigid and repetitive behaviours

Repetitive ‘stereotypical’ movements such as hand flapping, body rocking while standing, spinning, finger flicking

Repetitive or stereotyped play, for example opening and closing doors Over-focused or unusual interests Excessive insistence on following own agenda Extremes of emotional reactivity to change or new situations, insistence on things being

‘the same’ Over or under reaction to sensory stimuli, (e.g.) textures, sounds, smells Excessive reaction to taste, smell, texture or appearance of food or extreme food fads.

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APPENDIX 4 Signs and symptoms of possible autism in primary school children (5-11 years or equivalent mental age) 1


Spoken language

Spoken language may be unusual in several ways:

very limited use monotonous tone repetitive speech, frequent use of stereotyped (learnt) phrases, content dominated by

excessive information on topics of own interest talking ‘at’ others rather than sharing a two-way conversation responses to others can seem rude or inappropriate

Responding to others

Reduced or absent response to other people’s facial expression or feelings Reduced or delayed response to name being called, despite normal hearing Subtle difficulties in understanding other’s intentions; may take things literally and

misunderstand sarcasm or metaphor Unusually negative response to the requests of others (demand avoidant behaviour)



Reduced or absent social interest in people, including children of his/her own age – may reject others; if interested in others, may approach others inappropriately, seeming to be aggressive or disruptive

Reduced or absent greeting and farewell behaviours Reduced or absent awareness of socially expected behaviour Reduced or absent ability to share in the social play or ideas of others, plays alone Unable to adapt style of communication to social situations, for example may be overly

53

formal or inappropriately familiar Reduced or absent enjoyment of situations that most children like

Eye contact, pointing and other gestures

Reduced and poorly integrated gestures, facial expressions and body orientation, eye contact (looking at people’s eyes when speaking) and speech used in social communication

Reduced or absent social use of eye contact, assuming adequate vision Reduced or absent joint attention shown by lack of: Gaze switching Following a point (when someone points at object– may look at hand using pointing at or showing objects to share interest

5–11 years or equivalent mental age)


Reduced or absent flexible imaginative play or creativity, although scenes seen on visual media (for example, television) may be re-enacted

Makes comments without awareness of social niceties or hierarchies



Play repetitive and oriented towards objects rather than people Over-focused or unusual interests Rigid expectation that other children should adhere to rules of play Excessive insistence on following own agenda Extremes of emotional reactivity that are excessive for the circumstances Strong preferences for familiar routines and things being ’just right’ Dislike of change, which often leads to anxiety or other forms of distress (including

aggression) Over or under reaction to sensory stimuli, for example textures, sounds, smells Excessive reaction to taste, smell, texture or appearance of food or extreme food fads

Other factors that may support a concern about autism

Unusual profile of skills or deficits (for example, social or motor coordination skills poorly developed, while particular areas of knowledge, reading or vocabulary skills are advanced for chronological or mental age)

Social and emotional development more immature than other areas of development, excessive trusting (naivety), lack of common sense, less independent than peers.

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APPENDIX 5 Signs and symptoms of possible autism in secondary school children older than 11 years (or equivalent mental age) 1


Spoken language

Spoken language may be unusual in several ways: very limited use monotonous tone repetitive speech, frequent use of stereotyped (learnt) phrases, content dominated by

excessive information on topics of own interest talking ‘at’ others rather than sharing a two-way conversation responses to others can seem rude or inappropriate



Long-standing difficulties in reciprocal social communication and interaction: few close friends or reciprocal relationships

Reduced or absent understanding of friendship; often an unsuccessful desire to have friends (although may find it easier with adults or younger children)

Social isolation and apparent preference for aloneness Reduced or absent greeting and farewell behaviours Lack of awareness and understanding of socially expected behaviour Problems losing at games, turn-taking and understanding ‘changing the rules’ May appear unaware or uninterested in what other people his or her age are interested

in Unable to adapt style of communication to social situations, for example may be overly

formal or inappropriately familiar Subtle difficulties in understanding other’s intentions; may take things literally and

misunderstand sarcasm or metaphor Makes comments without awareness of social niceties or hierarchies Unusually negative response to the requests of others (demand avoidant behaviour)

55

Eye contact, pointing and other gestures

Poorly integrated gestures, facial expressions, body orientation, eye contact (looking at people’s eyes when speaking) assuming adequate vision, and spoken language used in social communication


History of a lack of flexible social imaginative play and creativity, although scenes seen on visual media (for example, television) may be re-enacted

age)



Preference for highly specific interests or hobbies A strong adherence to rules or fairness that leads to argument Highly repetitive behaviours or rituals that negatively affect the young person’s daily

activities Excessive emotional distress at what seems trivial to others, for example change in

routine Dislike of change, which often leads to anxiety or other forms of distress including

aggression Over or under reaction to sensory stimuli, for example textures, sounds, smells Excessive reaction to taste, smell, texture or appearance of food and/or extreme food

fads

Other factors that may support a concern about autism

Unusual profile of skills and deficits (for example, social or motor coordination skills poorly developed, while particular areas of knowledge, reading or vocabulary skills are advanced for chronological or mental age)

Social and emotional development more immature than other areas of development, excessive trusting (naivety), lack of common sense, less independent than peers.

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APPENDIX 6. An ideal patient journey for a child with autism11

Timeline Action Who involved

Day 1 Parents identify problem and seek help via health visitor

Child, parents

Day 7 Health visitor visits. Gives parents note to give to GP.

Child, parents, health visitor

Day 9 GP visit. GP advises referral to Child Development Centre (CDC) for full consultation. Advises referral to SALT immediately. GP tells parents to keep in touch with health visitor or GP practice if problems in meantime.

Child, parents, health visitor, GP

Week 7 CDC Developmental Assessment. Likely diagnosis ASD. Opportunity to discuss – copy of assessment report sent to parents. Appointment to review the report is made for the parents in 3 weeks time

Child, parents, GP, Paediatrician, SALT

Week 10 CDC Developmental Assessment review meeting.

Multi agency assessment

Child, parents, Paediatrician, SALT, Voluntary organizations. Local authority/ SEN lead at PCT involved if needed.

57

recommended. If Special Educational Needs (SEN) – local education authority informed and designated SEN lead at the PCT.

Information about benefits, services, possible interventions and local and national support groups – such as Contact- a-family, NAS, Parents for the Early intervention of Autism (PEACH), Family fund given to parents.

Week 16 Multi-agency assessment (MAA) meeting including representatives from health, social services and education.

This involves

A review of previously gathered information

Observations of the child’s behaviour in varied settings

Cognitive assessment including psychological input by ASD trained clinical or educational psychologist and educational input by specialist teachers or ‘early years’ professional and/or educational

Child, parents, paediatrician, SALT, clinical psychologist/ educational psychologist/ specialist ‘early years’ professionals.

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psychologists

Mental health and behaviour assessment

A decision re: keyworker needed is made at the MAA.

Week 17 Multi-agency assessment team feedback. The child, parents and key worker attend feedback meeting with 2 team members of the MAA team to go through the draft report.

If needed:

ASD pre-school educational support: a Family Support Plan and co-ordinated programme of intervention is developed. This will link in with any additional interventions developed by the Special Educational Needs Co-ordinator (SENCO).

Tertiary ASD development: attend for a tertiary ASD assessment to provide co-ordinated specialist advice, assess to paediatric neurologist, and gastroenterologist as well as Child and

Child, parents, keyworker, MAA team-members, SENCO, tertiary paediatric specialists (neurologist/gastroenterologist/psychiatrist)

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adolescent Mental Health Service (CAHMS) referral.

5 years of age Statement of SEN Primary School. Statement means that appropriate support provided – i.e. in an ASD unit with ASD trained staff within a mainstream primary school

Child, parents, SENCO.

11 years of age Transition to secondary school. ?Move to special unit within a mainstream school. Statement of SEN adjusted by 15th February in his year of transfer (year 6).

Child, parents, SENCO.

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APPENDIX 7 NICE guidelines: Recognising possible autism

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APPENDIX 8: List of stakeholders interviewed and main questions asked.

List of stakeholders

Dee Carlin Head of Adult Joint Commissioning team

Dr. Bruce Clark Consultant Psychiatrist, CAMHS

Dorrett Davis Therapies lead covering Speech and language therapy, Physiotherapy and Occupational therapy

Carol Etheridge Community Physiotherapy lead

Liz Guy Head of Nursing Services including School Nurses and the Special Needs Nursing team

Christine Hannan Community Speech and Language therapy for over 5s lead

Viv Hinchcliffe Headmaster of Drumbeat School

Jane Keogh Lewisham Autism Support

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Dr. Kitty Kwan Team lead for ASD, CAMHS

Bev Meddens Lewisham Autism Support

Corinne Moocarme Adult Joint Commissioner with responsibility for ASD

Dr. Sian Morgan Community Paediatrician, Team lead for ASD

Dr. Tony O’Sullivan Consultant Community Paediatrician

Alison Royle Community Occupational Therapy lead

Dr. Georgie Siggers Consultant Community Paediatrician, Team lead for Community Paediatric Services.

Sam Spencer, PT Community Physiotherapy lead

Ros Swift Community Speech and Language therapy for under 5s lead

Helen Tilley ASD Service User

Ann Wallace Team leader for MAPP/ Portage services

Nancy Woodcock Contact a Family, Lewisham (on behalf of the Parents Forum)

Main Interview questions:

What do you think the issues are?

What is the biggest problem? What the are 3 biggest problems?

What do you think the prevalance of autism is? Nationally? In Lewisham?

Is there a model service for therapies for children with ASD? How do you think our service is doing compared to this? What is the parental/user satisfaction of our service?

How is our service different from what is outlined in the NICE guidelines published this September? In the National Autism Plan? Are there aspects of the NICE guidelines you particularly agree with/disagree with?

Identification

When do you find that most children are referred and by whom? When do you think the most appropriate time for referral is? (NAP valid diagnosis made in most by 2-3 years) Do you think there are certain groups of children who are more likely to be missed? When are these children being picked up?

Assessment

How are children assessed in Lewisham and by who? What is the CAMHS involvement?

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How are the recommended time-lines followed? What are the particular difficulties in following these time-lines? Are these time-lines necessary?

(NAP recommendation is that the first professional contact with the parents following referral to theCDS or CAMHS is within 6 weeks of the date of referral and that the time period for the General Developmental Aassessment process to action plan (Stage 1) should be completed within 13 weeks.)

Who takes part in a Multi-Agency Assessment? How many children will go on to have this in Lewisham?

At what stage is a diagnosis of autism made? By whom? Are interventions started before a diagnosis made?

What are your concerns/worries for the ASD service in Lewisham? Do you think the waiting lists for ASD assessment will increase if maintained at current capacity?

What’s the one thing you would change? What are the top 3 things? 5 things?

APPENDIX 9: Full results of the audit of ASD services in Lewisham

1. Clinical audit of Pre-Communication clinic attendees in October 2011.

Total number booked: 40. Number of notes reviewed 24.

Criterion number Criterion Result

1 The autism diagnostic assessment should be started within 3 months of the referral to the autism team. 53%

2

Every diagnostic assessment should include: • detailed questions about parent's or carer's concerns and, if appropriate, the child's or young person's concerns 100%• details of the child's or young person's experiences of home life, education and social care 100%• a developmental history, focusing on developmental and behavioural features consistent with ICD-10 or DSM-IV criteria 100%

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• assessment (through interaction with and observation of the child or young person) of social and communication skills and behaviours, focusing on features consistent with ICD-10 or DSM-IV criteria 100%• a medical history, including prenatal, perinatal and family history, and past and current health conditions 100%• a physical examination 89%• consideration of the differential diagnosis 95%• systematic assessment for conditions that may coexist with autism 95%• development of a profile of the child's or young person's strengths, skills, impairments and needs that can be used to create a needs-based management plan, taking into account family and educational context 100%• communication of assessment findings to the parent or carer and, if appropriate, the child or young person. 100%

3

A general physical examination should be performed. 89%This should look specifically for:• skin stigmata or neurofibromatosis or tuberous sclerosis using a Wood's light 0%• signs of injury, for example self harm or child maltreatment 89%• congenital anomalies and dysmorphic features including macroephaly or microephaly. 89%

4

Parents or carers should be provided with a written report of the autism diagnostic assessment. 100%If appropriate, the child or young person should be provided with a written report of the autism diagnostic assessment. 0%This should explain the findings of the assessment and the reasons for the conclusions drawn. 100%

5 Information, including the written report of the diagnostic assessment, should be shared with the GP. 100%

6

For children and young people with a diagnosis of autism, a follow-up appointment should be offered with an appropriate member of the autism team within 6 weeks of the end of the autism assessment for further discussion. N/A

1. Baseline audit and NICE recommendation review completed with Dr. Sian Morgan on 17/01/2011

NICE recommendation Is this currently done How demonstrated

Autism1.1 Local pathway for recognition, referral and diagnostic assessment of possible autism

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A local autism multi-agency strategy group should be set up, with managerial, commissioner and clinical representation from child health and mental health services, education, social care, parent and carer service users, and the voluntary sector.

Yes but has been lapsed. Meeting coming up though.

Multi-agency group exists – wasn’t very active in last few months but

meeting coming up soon

The local autism strategy group should appoint a lead professional to be responsible for the local autism pathway for recognition, referral and diagnosis of children and young people. The aims of the group should include: • improving early recognition of autism by raising awareness of the signs and symptoms of autism through multi-agency training (see tables 1–3 in appendix C) • making sure the relevant professionals (healthcare, social care, education and voluntary sector) are aware of the local autism pathway and how to access diagnostic services• supporting the smooth transition to adult services for young people going through the diagnostic pathway• ensuring data collection and audit of the pathway takes place.

Yes Lead professional assigned.

In each area a multidisciplinary group (the autism team) should be set up. The core membership should include a:• paediatrician and/or child and adolescent psychiatrist• speech and language therapist• clinical and/or educational psychologist.

Yes All present in group.

The autism team should either include or have regular access to the following professionals if they are not already in the team: • paediatrician or paediatric neurologist• child and adolescent psychiatrist• educational psychologist• clinical psychologist• occupational therapist.

- Yes- Yes- No direct access –

school can refer .- Yes – part of team- Yes.

No direct link with Educational psychologist.

Consider including in the autism team (or arranging access for the team to) other relevant professionals who may be able to contribute to the autism diagnostic assessment. For example, a specialist health visitor or nurse, specialist teacher or social worker.

Yes Portage/ Specialist HV/ Special Needs nurse team/ CIT team (but now disbanding)

The autism team should have the skills and competencies to:• carry out an autism diagnostic assessment• communicate with children and young people with suspected or known autism, and with their parents and carers, and sensitively share the diagnosis with them.

Yes

Autism team members should:• provide advice to professionals about whether to refer children and young people for autism diagnostic assessments • decide on the assessment needs of those referred

Yes

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or when referral to another service will be needed• carry out the autism diagnostic assessment• share the outcome of the autism diagnostic assessment with parents and carers, and with children and young people if appropriate • with parent or carer consent and, if appropriate, the consent of the child or young person, share information from the autism diagnostic assessment directly with relevant services, for example through a school visit by an autism team member• offer information to children, young people and parents and carers about appropriate services and support.Provide a single point of referral for access to the autism team.

Yes Via weekly referral meeting

The autism team should either have the skills (or have access to professionals that have the skills) needed to carry out an autism diagnostic assessment, for children and young people with special circumstances including: • coexisting conditions such as severe visual and hearing impairments, motor disorders including cerebral palsy, severe intellectual disability, complex language disorders or complex mental health disorders• looked-after children and young people.

Yes

If young people present at the time of transition to adult services, the autism team should consider carrying out the autism diagnostic assessment jointly with the adult autism team, regardless of the young person’s intellectual ability.

No No adult autism team – refer to learning disability team if appropriate.

1.2 Recognising children and young people with possible autism Consider the possibility of autism if there are concerns about development or behaviour, but be aware that there may be other explanations for individual signs and symptoms.

Yes

Always take parents’ or carers’ concerns and, if appropriate, the child’s or young person’s concerns, about behaviour or development seriously, even if these are not shared by others.

Yes

When considering the possibility of autism and whether to refer a child or young person to the autism team, be critical about your professional competence and seek advice from a colleague if in doubt about the next step.

Yes

To help identify the signs and symptoms of possible autism, use tables 1–3 (see appendix C). Do not rule out autism if the exact features described in the tables are not evident; they should be used for guidance, but do not include all possible manifestations of autism.

Yes

When considering the possibility of autism, be aware that: • signs and symptoms should be seen in the context

Yes DISCO training conducted.Greenvale – secondary

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of the child’s or young person’s overall development • signs and symptoms will not always have been recognised by parents, carers, children or young people themselves or by other professionals• when older children or young people present for the first time with possible autism, signs or symptoms may have previously been masked by the child or young person’s coping mechanisms and/or a supportive environment • it is necessary to take account of cultural variation, but do not assume that language delay is accounted for because English is not the family’s first language or by early hearing difficulties • autism may be missed in children or young people with an intellectual disability • autism may be missed in children or young people who are verbally able • autism may be under-diagnosed in girls• important information about early development may not be readily available for some children and young people, for example looked-after children and those in the criminal justice system• signs and symptoms may not be accounted for by disruptive home experiences or parental or carer mental or physical illness.

severe school.

When considering the possibility of autism, ask about the child or young person's use and understanding of their first language.

Yes

Do not rule out autism because of:• good eye contact, smiling and showing affection to family members• reported pretend play or normal language milestones• difficulties appearing to resolve after a needs-based intervention (such as a supportive structured learning environment)• a previous assessment that concluded that there was no autism, if new information becomes available.

Yes

Discuss developmental or behavioural concerns about a child or young person with parents or carers, and the child or young person themselves if appropriate. Discuss sensitively the possible causes, which may include autism, emphasising that there may be many explanations for the child’s or young person's behaviour.

Yes

Be aware that if parents or carers or the child or young person themselves have not suspected a developmental or behavioural condition, raising the possibility may cause distress, and that:• it may take time for them to come to terms with the concern• they may not share the concern.

Yes

Take time to listen to parents or carers and, if appropriate, the child or young person, to discuss concerns and agree any actions to follow including

Yes

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referral.1.3 Referring children and young people to the autism team

Refer children younger than 3 years to the autism team if there is regression in language or social skills.

Yes See regressions very quickly and involve neurologists

Refer first to a paediatrician or paediatric neurologist (who can refer to the autism team if necessary) children and young people:• older than 3 years with regression in language • of any age with regression in motor skills.

Yes As above

Consider referring children and young people to the autism team if you are concerned about possible autism on the basis of reported or observed signs and/or symptoms (see tables 1–3 in appendix C). Take account of: • the severity and duration of the signs and/or symptoms• the extent to which the signs and/or symptoms are present across different settings (for example, home and school)• the impact of the signs and/or symptoms on the child or young person and on their family • the level of parental or carer concern and, if appropriate, the concerns of the child or young person• factors associated with an increased prevalence of autism (see box 1) • the likelihood of an alternative diagnosis.

Yes

Box 1 Factors associated with an increased prevalence of autism • A sibling with autism• Birth defects associated with central nervous system malformation and/or dysfunction, including cerebral palsy• Gestational age less than 35 weeks • Parental schizophrenia-like psychosis or affective disorder• Maternal use of sodium valproate in pregnancy• Intellectual disability• Neonatal encephalopathy or epileptic encephalopathy, including infantile spasms• Chromosomal disorders such as Down’s syndrome • Genetic disorders such as fragile X• Muscular dystrophy• Neurofibromatosis• Tuberous sclerosis

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If you have concerns about development or behaviour but are not sure whether the signs and/or symptoms suggest autism, consider:• consulting a member of the autism team who can provide advice to help you decide if a referral to the autism team is necessary• referring to another service. That service can then refer to the autism team if necessary.

Yes

Be aware that tools to identify children and young people with an increased likelihood of autism may be useful in gathering information about signs and symptoms of autism in a structured way but are not essential and should not be used to make or rule out a diagnosis of autism. Also be aware that: • a positive score on tools to identify an increased likelihood of autism may support a decision to refer but can also be for reasons other than autism • a negative score does not rule out autism.

Yes Use ADOS tool but not rely on it

When referring children and young people to the autism team, include in the referral letter the following information:• reported information from parents, carers and professionals about signs and/or symptoms of concern• your own observations of the signs and/or symptoms.

Yes

When referring children and young people to the autism team, include in the referral letter the following information, if available:• antenatal and perinatal history • developmental milestones • factors associated with an increased prevalence of autism (see box 1)• relevant medical history and investigations• information from previous assessments.

Yes Get schools involved early – educational report

Explain to parents or carers and, if appropriate, the child or young person, what will happen on referral to the autism team or another service.

Yes Leaflet available

If you do not think concerns are sufficient to prompt a referral, consider a period of watchful waiting. If you remain concerned about autism, reconsider your referral decision.

No Tend to see all referred children

If the parents or carers or if appropriate, the child or young person, prefer not to be referred to the autism team, consider a period of watchful waiting. If you remain concerned about autism, reconsider referral.

Yes If young – get health visitors to see/ discuss with parents.If older – escalate to see.

If a concern about possible autism has been raised but there are no signs, symptoms or other reasons to suspect autism, use professional judgment to decide what to do next.

Yes

1.4 After referral to the autism team

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When a child or young person is referred to the autism team, at least one member of the autism team should consider whether to carry out: • an autism diagnostic assessment and/or• an alternative assessment.

Yes

Carry out an autism diagnostic assessment if there is regression in language or social skills in a child younger than 3 years.

Yes

Refer first to a paediatrician or paediatric neurologist (if this has not already happened) children or young people: • older than 3 years with regression in language • of any age with regression in motor skills. The paediatrician or paediatric neurologist can refer back to the autism team if necessary.

Yes

If there is insufficient information to decide whether an autism diagnostic assessment is needed, gather any available information from healthcare professionals. With consent from parents or carers and, if appropriate, the child or young person, seek information from schools or other agencies.

Yes This happens – more info needed from school/ therapy reports etc.

If there is uncertainty about whether an autism diagnostic assessment is needed after information has been gathered, offer a consultation to gather information directly from the child or young person and their family or carers.

Yes

Once it has been decided to carry out an autism diagnostic assessment, with consent from parents or carers (and the child or young person if appropriate):• seek a report from the pre-school or school if one has not already been made available • gather any additional health or social care information, including results from hearing and vision assessments.

Yes

Avoid repeated information gathering and assessments by efficient communication between professionals and agencies.

Yes

1.5 Autism diagnostic assessment for children and young peopleStart the autism diagnostic assessment within 3 months of the referral to the autism team.

No Try to but not always able to

A case coordinator in the autism team should be identified for every child or young person who is to have an autism diagnostic assessment.

No There is a doctor allocated who should follow child through to diagnosis. If referred to MAPP – then key worker.

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The autism case coordinator should: • act as a single point of contact for the parents or carers and, if appropriate, the child or young person being assessed, through whom they can communicate with the rest of the autism team • keep parents or carers and, if appropriate, the child or young person, up-to-date about the likely time and sequence of assessments • arrange the provision of information and support for parents, carers, children and young people as directed by the autism team• gather information relevant to the autism diagnostic assessment (see recommendation 1.4.7).

No As above

Discuss with the parents or carers and, if appropriate, the child or young person, how information should be shared throughout the autism diagnostic assessment, including communicating the outcome of the assessment. Take into account, for example, the child or young person's age and ability to understand.

Yes

Include in every autism diagnostic assessment:• detailed questions about parent’s or carer’s concerns and, if appropriate, the child’s or young person’s concerns • details of the child's or young person's experiences of home life, education and social care • a developmental history, focusing 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 social and communication skills and behaviours, focusing on features consistent with ICD-10 or DSM-IV criteria (consider using an autism-specific tool to gather this information)• a medical history, including prenatal, perinatal and family history, and past and current health conditions• a physical examination • consideration of the differential diagnosis (see recommendation 1.5.7)• systematic assessment for conditions that may coexist with autism (see recommendation 1.5.15)• development of a profile of the child’s or young person’s strengths, skills, impairments and needs that can be used to create a needs-based management plan, taking into account family and educational context. • communication of assessment findings to the parent or carer and, if appropriate, the child or young person.

Yes

Yes

Yes

Yes

Yes

YesYes

Yes

Yes

Yes

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Perform a general physical examination and look specifically for:• skin stigmata of neurofibromatosis or tuberous sclerosis using a Wood’s light• signs of injury, for example self-harm or child maltreatment • congenital anomalies and dysmorphic features including macrocephaly or microcephaly.

Yes

No – no Wood’s light specifically used.Yes

Yes

Consider the following differential diagnoses for autism and whether specific assessments are needed to help interpret the autism history and observations:• Neurodevelopmental disorders: - specific language delay or disorder - intellectual disability or global developmental delay - developmental coordination disorder (DCD).• Mental and behavioural disorders: - attention deficit hyperactivity disorder (ADHD) - mood disorder - anxiety disorder - attachment disorders - oppositional defiant disorder (ODD) - conduct disorder - obsessive compulsive disorder (OCD) - psychosis.• Conditions in which there is developmental regression: - Rett syndrome - epileptic encephalopathy.• Other conditions: - severe hearing impairment - severe visual impairment - maltreatment - selective mutism.

Yes

Consider which assessments are needed to construct a profile for each child or young person, for example:

• 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 sensitivities• behaviour likely to affect day-to-day functioning and social participation• socialisation skills.

Yes

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If there are discrepancies during the autism diagnostic assessment between reported signs or symptoms and the findings of the autism observation in the clinical setting, consider:• gathering additional information from other sources and/or • carrying out further autism specific observations in different settings, such as the school, nursery, other social setting or at home.

Yes

Use information from all sources, together with clinical judgment, to diagnose autism based on ICD-10 or DSM-IV criteria.

Yes

Do not rely on any autism-specific diagnostic tool alone to diagnose autism.

Yes

Be aware that in some children and young people there may be uncertainty about the diagnosis of autism, particularly in:• children younger than 24 months • children or young people with a developmental age of less than 18 months • children or young people for whom there is a lack of available information about their early life (for example some looked-after or adopted children)• older teenagers• children or young people with a complex coexisting mental health disorder (for example ADHD, conduct disorder, a possible attachment disorder), sensory impairment (for example severe hearing or visual impairment), or a motor disorder such as cerebral palsy.

Yes

Be aware that some children and young people will have features of behaviour that are seen in the autism spectrum but do not reach the ICD-10 or DSM-IV diagnostic criteria for definitive diagnosis. Based on their profile, consider referring to appropriate services.

Yes

If the outcome of the autism diagnostic assessment clearly indicates that the child or young person does not have autism, consider referring them to appropriate services based on their profile.

Yes

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Consider whether the child or young person may have any of the following as a coexisting condition, and if suspected carry out appropriate assessments and referrals:• Mental and behaviour problems and disorders: - ADHD - anxiety disorders and phobias - mood disorders - oppositional defiant behaviour - tics or Tourette syndrome - OCD - self-injurious behaviour.• Neurodevelopmental problems and disorders: - global delay or intellectual disability - motor coordination problems or DCD - academic learning problems, for example in literacy or numeracy - speech and language disorder.• Medical or genetic problems and disorders: - epilepsy and epileptic encephalopathy - chromosome disorders - genetic abnormalities, including fragile X - tuberous sclerosis - muscular dystrophy - neurofibromatosis.• Functional problems and disorders: - feeding problems, including restricted diets - urinary incontinence or enuresis - constipation, altered bowel habit, faecal incontinence or encopresis - sleep disturbances - vision or hearing impairment.

Yes Yes – in particular:Genetics: big emphasisEpilepsyFeedingBowel habit

Be aware that in children and young people with communication difficulties it may be difficult to recognise functional problems or mental health problems.

Yes

1.6 After the autism diagnostic assessmentIf there is uncertainty after the autism diagnostic assessment about the diagnosis, consider keeping the child or young person under review, taking into account any new information.

Yes

If any of the following apply after assessment, consider obtaining a second opinion (including referral to a specialised tertiary autism team if necessary):• continued uncertainty about the diagnosis• disagreement about the diagnosis within the autism team • disagreement with parents or carers or, if appropriate, the child or young person, about the diagnosis • a lack of local access to particular skills and competencies needed to reach a diagnosis in a child or young person who has a complex coexisting condition, such as a severe sensory or motor impairment or mental health problem

Yes Handful of children only – referred to Prof. Baird at Newcomen Centre, Guys.

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• a lack of response as expected to any therapeutic interventions provided to the child or young person.During the autism diagnostic assessment, consider any potential risk of harm to, and from, the child or young person and take appropriate action.

Yes

1.7 Medical investigationsDo not routinely perform any medical investigations as part of an autism diagnostic assessment, but consider the following in individual circumstances and based on physical examination, clinical judgment and the child or young person’s profile:• genetic tests, as recommended by your regional genetics centre, if there are specific dysmorphic features, congenital anomalies and/or evidence of intellectual disability • electroencephalography if there is suspicion of epilepsy .

No Diagnosis made on clinical judgement but genetic test, FBC, Ferritin, thyroid, CK performed on all children.

1.8 Communicating the results from the autism diagnostic assessmentAfter the autism diagnostic assessment discuss the findings, including the profile, sensitively, in person and without delay with the parents or carers and, if appropriate, the child or young person. Explain the basis of conclusions even if the diagnosis of autism was not reached.

Yes

Use recognised good practice when sharing a diagnosis with parents, carers, children and young people.

Yes ASD pack given

For children and young people with a diagnosis of autism, discuss and share information with parents or carers and, if appropriate, the child or young person, to explain:• what autism is• how autism is likely to affect the child or young person’s development and function.

Yes Teenagers spoken to by themselves.

Provide parents or carers and, if appropriate, the child or young person, with a written report of the autism diagnostic assessment. This should explain the findings of the assessment and the reasons for the conclusions drawn.

Yes Report (often multiple copies for parents) given to family

Share information, including the written report of the diagnostic assessment, with the GP.

Yes

With parental or carer consent and, if appropriate, the consent of the child or young person, share information with key professionals involved in the child’s or young person’s care, including those in education and social care.

Yes Parents/Carers have 2/52 to review/ check the report before sent out to other parties.

With parental or carer consent and, if appropriate, the consent of the child or young person, make the profile available to professionals in education (for example, through a school visit by a member of the autism team) and, if appropriate, social care. This is so it can contribute to the child or young person's individual education plan and needs-based management plan.

Yes Always to education, if appropriate to social care.

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For children and young people with a diagnosis of autism, offer a follow-up appointment with an appropriate member of the autism team within 6 weeks of the end of the autism assessment for further discussion (for example about the conclusions of the assessment and the implications for the child or young person).

No Variable – but 6-8 weeks at earliest. Often later.

For children and young people with a diagnosis of autism, discuss with parents or carers the risk of autism occurring in siblings and future children.

Yes

1.9 Information and support for families and carersProvide individual information on support available locally for parents, carers, children and young people with autism, according to the family’s needs. This may include:• contact details for: - local and national support organisations (who may provide, for example, an opportunity to meet other families with experience of autism, or information about specific courses for parents and carers and/or young people) - organisations that can provide advice on welfare benefits - organisations that can provide information on educational support and social care • information to help prepare for the future, for example transition to adult services.

Yes

APPENDIX 10: Eligibilty criteria for social care

1. Children in Need Eligibility Criteria (Statutory responsibilites under The Children Act 1989)25

A child is in need of protection and should be dealt with as Section 47 Enquiry when:

We are informed that a child who lives in their area, or is found in our area is the subject of an emergency protection order or police protection, or

We have reasonable cause to suspect that a child who lives, or is found in our area is suffering, or likely to suffer significant harm

We have statutory obligation to make, or cause to be made, such enquiries as we consider necessary

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to enable us to decide whether we should take any action to safeguard or promote the child’s welfare.

Children Act 1989 s47 (1)

A child is in need if:

He/she is unlikely to achieve or maintain or have the opportunity of achieving or maintaining a reasonable standard of health or development without the provision for him/her of services by a local authority

His/her health or development is likely to be significantly impaired or further impaired without the provision of such services, or

He/she is disabled

Children Act 1989 s17 (10)

2. The eligibility criteria for social care framework for adults 26

Critical life is, or will be, threatened; and/or

significant health problems have developed or will develop; and/or

there is, or will be, little or no choice and control over vital aspects of the

immediate environment; and/or

serious abuse or neglect has occurred or will occur; and/or

there is, or will be, an inability to carry out vital personal care or domestic

routines; and/or

vital involvement in work, education or learning cannot or will not be

sustained; and/or

vital social support systems and relationships cannot or will not be

sustained; and/or

vital family and other social roles and responsibilities cannot or will not be

undertaken.

Substantial there is, or will be, only partial choice and control over the immediate

environment; and/or

abuse or neglect has occurred or will occur; and/or

there is, or will be, an inability to carry out the majority of personal care or

domestic routines; and/or

involvement in many aspects of work, education or learning cannot or will

not be sustained; and/or

the majority of social support systems and relationships cannot or will not

be sustained; and/or

the majority of family and other social roles and responsibilities cannot or

will not be undertaken.

Moderate there is, or will be, an inability to carry out several personal care or

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involvement in several aspects of work, education or learning cannot or

will not be sustained; and/or

several social support systems and relationships cannot or will not be

sustained; and/or

several family and other social roles and responsibilities cannot or will not

be undertaken.

Low there is, or will be, an inability to carry out one or two personal care or


involvement in one or two aspects of work, education or learning cannot or will not be

sustained; and/or

one or two social support systems and relationships cannot or will not be

sustained; and/or

one or two family and other social roles and responsibilities cannot or will

not be undertaken.

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3€¦ · Web view3.1 Definition of Autism Spectrum Disorders The term ‘autism’ is often generally used to mean the group of pervasive developmental disorders and describes qualitative

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