Transition Autism Pathway
Preparing for Adulthood
1
Transition Pathway
Age 14
Identify young person’s needs
Refer to Children and Family
Act 2014 Local Offer
Refer to Children and
Family Act 2014 Local
Offer
Age 16
Age 17
Identify services that stop at 16
Referral to adult service(s) if still
required
Identify need for service transition
Consider if referral to Adult
Social Care for Community
Care Assessment would be
appropriate
Refer to Children and
Family Act 2014 Local
Offer
Consider if referral to Adult
Social Care for Community
Care Assessment would be
appropriate
Identify appropriate adult service(s)
 Referral 3 months prior
to 18th birthday
Age 18
Assessment by adult service(s)
Closure of case to CAMHS
Pathway Decision Tool
(Diagram 1)
Health
 Link to adult ASD
pathway
Local Authority
 Local Offer
Written Care Plan
Intervention:
Stepped Care Model
Consider if referral to Adult
Social Care for Community
Care Assessment would be
appropriate
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What is the Autism Spectrum?
Autism is a lifelong developmental disability that affects how a person
communicates with, and relates to, other people and the world around them.
It is a spectrum condition, which means that, while all people with Autism
share certain areas of difficulty, their condition will affect them in different
ways. Some people with Autism can live relatively independently, while
others require a lifetime of specialist care.
Asperger Syndrome and High Functioning Autism are part of the Spectrum
condition.
The three main areas of difficulty - which all people with Autism share - relate
to social interaction, social communication, and rigid and repetitive ways of
thinking and behaving. This is often referred to as the Triad of Impairments:
Social interaction difficulties centre around the person’s ability to
understand and take part in social situations with other people. Difficulties
range from disinterest / avoidance of social contact, through passive
acceptance of interactions with no attempt to reciprocate, to making one-sided
approaches on their own terms, to very formal, stilted interactions.
Social communication difficulties include problems using and
understanding spoken language, body language, gesture and facial
expressions for social purposes. Some people with Autism may speak very
little, or only to get their needs met; others may use very repetitive language;
still others may talk about their interests and needs whenever it suits them
and whatever the situation.
Rigid and repetitive ways of thinking and behaving include simple
repetitive actions or movements, complicated repetitive rituals, collecting
objects to excess, being obsessed with a particular topic (Sometimes called
having a ‘Special Interest’), living by a fixed timetable or routine, and difficulty
coping with change or unexpected events. People with Autism have
significant difficulties in imagination and predicting the consequences of
actions, and these behaviours can create structure and comfort for the person
in a highly unpredictable world.
It is likely that there will be additional problems, which are not core to Autism
Spectrum Disorder, or ASD, but may be a common accompaniment. These
include sensory processing problems, generalised learning disability (LD),
dyslexia, dyspraxia, epilepsy, and in adolescence and adulthood, anxiety
states and depression.
In many parts of United Kingdom, many people with Autism are still
experiencing inequalities, are socially excluded and dependent upon families
for support in coping with their everyday lives.
 Nearly two-thirds of adults with Autism in England do not have enough
support to meet their needs; at least 1 in 3 adults with Autism are
experiencing severe mental health difficulties due to a lack of support.
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(Rosenblatt M (2008). Only 15% of adults with autism in the U.K are in
full-time paid employment, 51% of adults with Autism in the UK have
spent time with neither a Job, nor access to benefits. ( Redmen, S et al
2009).
The Autism Act (2009), the National Autism Strategy “Fulfilling and
rewarding lives” (2010) and “Think Autism” (2014) aim to address these
issues.
Prevalence
The overall prevalence of ASD in adults in England was estimated to be 1.0%.
The rate among men (1.8%) was higher than that among women (0.2 %),
which fits with the profile found in clinic-based research and childhood
population studies (Adult Psychiatric Morbidity Survey (APMS), 2007,
http://www.hscic.gov.uk/pubs/psychiatricmorbidity07). An extension of the
APMS
(2012
http://www.hscic.gov.uk/article/1733/New-study-estimatesautism-prevalence-among-adults-with-learning-disability) estimates that the
overall prevalence of ASD is 1.1% including adults with Learning Disabilities
(LD) living in the community and in communal care establishments.
The Leicestershire population estimates of Autism (based on national
prevalence of Autism, 2007) suggest that there are likely to be 5,654 males in
Leicester, Leicestershire and Rutland with Autism and 447 women, a total of
6,101 people aged between 18 -64. It is highly likely that the numbers of
females with Autism is an underestimate, based on recent research.
According to the National Autism Plan for Children (2003), ASD affects at
least 60 per 10,000 children under 8 years, of whom 10 to 30 have narrowlydefined Autism. In a typical local population unit of 55,000 children under
sixteen with 4,000 births per year, an annual incidence of 24 new cases is
implied though presentation may be at varying ages. This, in turn, suggests
that there would be considerably more than 250 children (under 16 years) with
ASD at any one time in every such local health area. According to United
Kingdom Census 2001, in Leicestershire approximately 62,000 were aged
under 16, so there are more than 250+ children under 16 years with Autism at
any time in Leicestershire. These figures are likely to be an underestimate as
Baird et al (2006) revised this estimate to be 1:115 children affected by
Autism.
In 1993, Stephan Ehlers and Christopher Gillberg published the results of a
study carried out in Gothenburg, children with IQ of 70 or above. From the
numbers of children they identified they calculated a rate of 36 per 10,000 for
those who definitely had Asperger Syndrome and another 35 per 10,000 for
those with social impairments.
Difficulties Around Transition: National Picture
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Early identification is important for the future of children with Autistic Spectrum
Disorders. Children and young people with an ASD are likely to have a range
of services and professionals involved in their health care, social care and
education, and for many of these young people there will be a need for these
services to continue into adulthood. Joint working among professionals is
particularly important when an ASD is suspected.
Young people with ASD require an individualised, structured, focused and
coherent approach to transition planning. The very nature of Autism, which
often involves difficulty in predicting events; dislike of change: ritualistic and
repetitive routines; high levels of anxiety and lack of flexibility of thought,
means that moving from a safe, predictable environment to the unknown is
particularly traumatic. It is important that the young person’s history is
transferred with him/her, so that should behaviours reoccur, Adult Services
are aware of what kind of support and intervention works for each particular
individual (Smith & Mitchell 2002). We also need to be aware that a young
person with mild LD and ASD may face increased expectations from the
carers and service providers about further skills development and
achievements, which can at times be detrimental to the person concerned.
A number of individuals will present to services for the first time in adulthood,
when there is a loss of the protective supportive factors of childhood and
adolescence, alongside increased responsibilities and lack of structure.
Similarly, an ASD may come to light when an individual develops associated
mental health difficulties. Older adolescents and adults need easy access to
both specialised and general support services, to help them deal with the
transition into adulthood and maintain their independence. Adults with HighFunctioning Autism are often deemed ineligible for social care and mental
health services, and may only be able access them if they develop additional
mental health problems later. There is a need to develop Treatment and
Intervention services for this age group, and an equally important need to
establish support services to help people live their lives as independently as
possible. Adults with ASD may require support across health and social care,
housing, education, and employment.
A number of national and other key documents highlight the problems of
uncoordinated and poorly managed ASD services, particularly during the
transition to adulthood. They refer to the difficult experiences of children and
individuals with ASD and their families that result. For the faculty of Child and
Adolescent Psychiatry, Lamb et al (2008) recommended that young people
with particular diagnoses such as ASD (Asperger’s syndrome) specific
agreement for the transfer of clinical mental health care should be reached
and protocols written so that local arrangements reflect good practice
guidance. The authors indicate that ongoing mental health care for these
individuals can be complex but may not fulfil referral criteria for an adult
mental health team. Care Pathways and Transition Programmes for ASD
should involve young people and their families/carers together with
representatives from all relevant local stakeholders and multidisciplinary,
multiagency providers of child and adult mental health services.
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Good practice recommendations: (Services for Adults with Autistic
Spectrum conditions, DoH)
In comparison with Adult Services, over the last twenty years Children’s
Services have acquired more resources to respond to the needs associated
with Autism; nonetheless services are seriously stretched by the changing
demands the condition can impose. Transition from Children’s Services to
Adult Services can be difficult. The lack of a dedicated Adult Service for ongoing contact with the more vulnerable individuals is a distinct service gap.
There are also differences in the availability of services for those in the 16-18
range depending on if they are in full time education or where they live.
Key Issues

Transition to adulthood can be quite difficult for this population due to
the nature of the condition. To make the Transition successful, there is
a need for adequate preparation and support.

Highly individualised and person-centred Transition Planning includes
identifying all agencies involved in delivering services both currently
and post Transition. A Client-held Transition Plan should be drawn up
in an accessible format detailing who should do what and by when, and
be regularly reviewed.

A Co-ordinator should be identified for each young person, who needs
to liaise with services and support the young person and their families.

Families should be able to access good information about options and
choices. Effective Transition Planning requires good information and
signposting about available resources, and a clear, viable Pathway
through Services. The families should have early access to information
about what the future may hold such as learning and employment,
support services and opportunities for participation

Everyone should have the right to express their views, and it is
important to ensure that those with more complex communication
needs, including those who are non-verbal, are able to express their
views and preferences and also their communication needs should be
acknowledged and addressed.

Adult Services may have a focus on providing choices to the young
adult person with ASD in Transition which may at times overwhelm the
person in question.

Information should be shared in an accessible format.
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
Financial arrangements should be dealt with prior to transfer.

The health care needs of young people should be recognised and
Services should be supported to meet those needs.

People with complex health needs should be allocated a key worker
from health and be referred to a Transition Clinic, where multidisciplinary handover can occur and a Transition Health Plan agreed
upon.
Local Care Pathway Agreement
1. Age of transition
Transition will take place at the 18th birthday into Adult Learning Disability
Mental Health Services for those young people with moderate, severe and
profound LD who are currently being treated by the CAMHS Learning
Disability Team.
 Three months prior to the 18th birthday a detailed transfer letter is
written to the Adult LD Service and a Transition Appointment is
arranged. Care will then pass over from an agreed date from their 18 th
birthday.
 In some circumstances where this is highly complex care, clinical
responsibility transfers to the adult LD team at the appointment at 18
years but there may be some overlapping service with CAMHS from
the multidisciplinary team to complete a piece of work prior to the 19 th
birthday. Cases are closed to CAMHS by the 19th birthday.
For those young people with a mild LD who are seen by the generic CAMHS
Team, a transition appointment involving both a CAMHS worker and an Adult
Mental Health Worker can be requested to determine the most appropriate
service i.e. transfer to the LD service, adult general psychiatry service, or
adult general psychiatry with support from LD service.
.
2. Thresholds for accessing Adult Mental Health Services check
wording with adult pathway
Young people over the age of 16 who have a diagnosis of Autism or Asperger
Syndrome who have left school can now be referred to Adult Mental Health
Services for assessment. An additional severe Mental Health problem is not
an essential criterion. Referrals should be sent to the team leader for the
catchment area.
Post diagnostic ASD support and management is currently being discussed
with Commissioners.
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3. Identification of those young people requiring the Transition
Pathway
Person Centred Review Meetings are held from age fourteen for some of the
young people who attend Special Schools. This is an ideal process to identify
those in need of the Pathway. These meetings will lead to the Local Offer and
may include a Community Care Assessment. The age of this will vary, but will
be done before the child’s 19th birthday.
The majority of children who are known to have a diagnosis on the Autism
Spectrum will be known to the City Learning and Autism Support Team
and the County Autism Outreach Service.
4. Therapies for those over the age of 16
Therapy services for children such as Speech and Language Therapy (SLT)
and Occupational Therapy (OT) are commissioned to see children up to the
age of 16, then only to 19 if have additional needs in a statutory placement.
The SLT service may still be involved with young people if they are in a
special school or specialist SLT unit.
N.B. It is noted that Adult Generic SLT Services are only commissioned
to provide services for acquired communication disorders and
swallowing disorders.
Physiotherapy services are primarily commissioned to provide input into the
community hospitals, for musculoskeletal conditions, community rehabilitation
in an outpatient setting and The Falls programme.
a. Any concerns about services not being provided to specific patients
should be directed to the Medical Director. Action will then be taken via
the service line to address the needs of the individual.
b. Training and skill development for specific professionals or teams may
be required
c. There needs to be Commissioning Intent in relation to provision of
Therapy Services.
d. The Transition Autism Pathway will be discussed at the Health and
Wellbeing Board.
Sensory integration is not being commissioned in Children’s Services.
Therapy provision for adults who also have a Learning Disability is provided
by the Adult Learning Disability Service. Therapy provision for adults without
a Learning Disability is currently under discussion with Commissioners.
5. The ADHD-Autism comorbidity is recognised and included in the
Pathway.
6. The NICE Guideline (CG 128) ‘Autism: recognition, referral and
diagnosis of children and young people on the Autistic Spectrum’
indicates good practice for diagnosis and follow-up post-diagnosis. It
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does not contain a Pathway for Transition. The option regarding
undertaking Autism assessments jointly remains a clinical decision.
7. The NICE Guideline (CG 142) ‘Autism: recognition, referral,
diagnosis and management of adults on the autism spectrum’
indicates good practice for adults. The guidance states the need to
‘establish clear links (including access and entry points) to other care
pathways’.
8. Training for professionals has been identified and is being made
available via E-learning and other formats.
9. The clinical network around LD will continue.
Diagram 1 Pathway Decision Tool
References:
Stage 1.
Stage 2.
Stage 3.
Consider
ASD
diagnosis
at
Transition
ASD
suspected
Consider if
mental
health /
behaviour
needs
No
No health
referral
indicated
Yes
Go to stage 3
Consider if
associated
moderate /
greater LD
Associated
mild LD
Yes
Follow LD
Transition
Pathway
Yes
IQ in
normal
range
Yes
Transition
appointment
with Adult
LD Service
Mental
Health needs
predominant
Co-morbid
psychiatric
condition
predominant
ASD
already
confirmed
Assessment
via Adult
Autism
Pathway
Go to stage 2
Consider need
for education /
social care /
CJS input
Agree input
from LD
Service / Adult
CMHT
Adult CMHT
Adult
Specialist
MH Team
ADHD / PIER /
Drug & Alcohol
Service /
Eating Disorders
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
Taking Responsibility, good practice guidelines for services for people
with Asperger Syndrome (2002) Andrew Powell. London: National
Autistic Society.

Rosenblatt, M (2008). I Exist: the message from adults with autism in
England. London: The National Autistic Society,

Redman, S et al (2009). Don't Write Me Off: Make the system fair for
people with autism. London: The National Autistic Society, p8.

National Autism Plan for Children, March 2003. www.autism.org.uk

Leicester, Leicestershire & Rutland: Adult Asperger Strategy and
Delivery Action Plan (2011) www.autism.org.uk/...strategy/LeicesterLeicestershire-and-Rutland-Adult-asperger-strategy-and-deliveryaction-plan-2010-2013.ashx

Ehlers, S. and Gillberg, C. (1993). The epidemiology of Asperger
syndrome. a total population study. Journal of Child Psychology and
Psychiatry, 34 (8), pp. 1327-1350.

Services for Adults with Autistic Spectrum conditions – DoH, April
2009. www.dh.gov.uk/en/Publicationsandstatistics/.../DH_097418

Lamb C, Hall D, Kelvin R, Van Beinum M. 2008. Working at the
CAMHS/Adult Interface: Good practice guidance for the provision of
psychiatric services to adolescents/young adults. A joint paper from the
Interfaculty working group of the Child and Adolescent Faculty and the
General and Community Faculty of the Royal College of Psychiatrists,
May 2008.

Smith, J.A. & Mitchell, C. (2000) Transition Planning – Through School
into Adulthood. The Scottish Society for Autism, Alloa.

Autism Act 2009. www.legislation.gov.uk/ukpga/2009

National Autism Strategy, ‘Fulfilling and Rewarding Lives’(2010)
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/Publicati
PublicationsPolicyAn/DH_113369

'Think Autism': an update to the government adult autism strategy
(2014)
https://www.gov.uk/government/publications/think-autism-anupdate-to-the-government-adult-autism-strategy

‘Autism: recognition, referral, diagnosis and management of adults on
the autism spectrum’ CG142: (2012)
http://publications.nice.org.uk/autism-recognition-referral-diagnosisand-management-of-adults-on-the-autism-spectrum-cg142
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Appendix 1
Children and Families Act 2014
Key recommendations
- Education, Health and Care Plans will replace Statements of Special
Educational Needs from September 2014. There will be a phased approach to
their implementation.
- From 1st September 2014, the statutory guidance in the Special Educational
Needs and Disability Code of Practice for 0 to 25 years will take effect.
- The Leicester City Education, Health and Care (EHC) Statutory assessment
process guidance outlines the operational details for all partners working with
Children and Young people who may be subject to these procedures.
Key Principles
Participation - The Act promotes the participation of young people in decision
making about how their learning difficulties or disabilities should be met.
Outcomes- the Act focuses on outcomes, including employment, Independent Living
and Community participation for young people with SEN.
A joint approach - The Act will require education providers (including Further
Colleges and Independent Specialist Colleges) and Health & Social Care agencies to
co-operate at a local level to meet the needs of young people with SEN.
Local authorities and education providers will be expected to work with other
partners, such as employment and housing agencies to help achieve good outcomes
for young people with SEN. Local authorities and health commissioning groups will
be required to commission services jointly for young people with SEN.
The Local Offer
Local authorities must produce a local offer, setting out in one place, information
about provision they expect to be available for Children and Young People in their
area who have SEN, including those who do not have Education, Health and Care
Plans.
The local offer must include provision in the local authority’s area and also outside
the local area that the local authority expects is likely be used by Children and Young
People with SEN for whom they are responsible. From a Health perspective, it will
include the wide range of Health Services and support available for the 0 – 25 age
range across Leicester City.
In addition, Adult Social Care are developing their Information, Advice and Guidance
strategy for people eligible for Social Care support, but also the signposting to support
services and opportunities for those young adults who do not meet Adult Social Care
criteria for support. As this work develops, it will need to be part of the local offer.
The Local offer also needs to include opportunities for young people in further
education, work based learning, work, community opportunities and Independent
Living.
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The Leicester City Disabled Children’s Services is producing a “Preparing for
Adulthood” website for Leicester City, focusing on the four pathways:
Education, Learning and work
Planning for Good Health
Friends, relationships and Community
Independence and Independent Living
This website will be an introduction to ‘Preparing for Adulthood’ and will link to the
local offer which will offer much more detailed information on the Pathways outlined
above and the support services available in Leicester City..
www.localofferleicester.org.uk provides further information on the Leicester City
Local Offer, including details on how to request a Community Care assessment.
The Care Act
Proposed implementation date April 2015.
The Act gives young people a legal right to request an Adult Social Care assessment
before they turn 18 years.
This is to help them plan for the Adult Care and support services they may need. The
act states that Transition assessments should take place at the right time for the young
person and at a point when the local authority can be reasonably confident about what
the young person’s or carer’s needs for care or support will look like after the young
person in question turns 18. There is no set age when young people reach this point,
every young person and their family are different, and as such, transition assessments
should take place when it is most appropriate for them.
The Act says that if a child or adult caring for a disabled child (or child’s carers) are
likely to have needs when they, or the child they care for, turns 18, the local authority
can assess them if it considers there is ‘significant benefit in doing so. This is
regardless of whether the person currently receives Children’s Services.
Please refer to Chapter 16.of the Care Act for full details of the guidance on
Transition to adult care and support.
Until the guidance on Transition to adult care and support outlined in the Care Act
takes effect, the current arrangements under Section 5/6 of the Disabled Person Act
continue to operate to ensure that those young people who are likely to need a
Community Care assessment by Adult Social Care are identified and considered in a
timely way.
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