Services for Children and Young People with Autism Spectrum Disorder: Current activities and services

Key points

  1. current arrangements to support children and their families include: Support to the child and parents, support to families to enable services to be co-ordinated, and support for carers
  2. CAHMS service in Lewisham sees about 180 referrals for ASD per year
  3. a new school for children with Autistic Spectrum Disorder, Drumbeat, opened in September 2012


ASD diagnostic services for Lewisham lie within the Community Paediatrics team, currently based at Kaleidoscope and set up in 1995.

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.

The Communication Clinic has been reshaped as part of the new initial assessment pathway within the medical team. The service pathway changed at that time to reduce time-to-diagnosis. The majority of children 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 no documented referral pathway or protocol which all referred children follow. Most children would follow a standard but this is not documented or made known officially to those referring children in to the service.

Work was begun in 2009 to create a pathway for children of school age, but not yet completed, as priority had to be given to clearing the waiting list. It is important that planning takes into account the future contribution of the new Drumbeat school due to open in September 2012.

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 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.

Ongoing support of families

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. 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 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. 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.

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 mild or moderate behavioural problems and do not see very young children ( 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.

Approximately 80% of ASD referrals to CAMHS are from the community paediatrics service. The current wait is 12-13 weeks. The service generally continues to see young people for eight months to one year, but will close cases earlier if there is significant improvement.


There is no designated ASD pathway for Occupational Therapy in Lewisham. 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.

Multi Agency Planning Pathway (MAPP)

The 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. 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. 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.


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.

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, but ASD forms part of their remit.

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 are recognised as being a critical part of ASD services in Lewisham.

Carers Lewisham offer support to all carers, including carers of children with ASD.

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). The aims of the LAS service are 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. In 2011, LAS received 182 referrals to the service, and to June 2012 130 referrals had been received.

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.

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 is a source of concern for health-care professionals and service users alike.






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