Children, their family members, carers and associated professionals are seen for focused assessments plus feedback sessions; sometimes, these will take place at the ENC, but we also undertake assessments in the local community. In some instances, children may be unable to attend a clinic and their difficulties may mean that they have to be seen in their home or in their local community. A clinic based assessment may be supplemented with home, school, workplace or other observations if necessary. The clinic produces a detailed multidisciplinary assessment report for families and professionals.
The ENC recognises the importance of the NICE guidelines for the assessment of autism in children and adults, and we works within this framework. The centre aims to support the local pathways for autism assessments, working to supplement and compliment these processes for the most complex and subtle of cases.
Referrals are accepted from:
Children and Adolescent Mental Health Services, (including consultant psychiatrists, clinical psychologists and other mental health professionals)
Consultant paediatricians in hospital and community settings
Professionals working within Learning Disability Services
Educational psychologists and other professionals from Specialist Educational Services
• Children aged from 7 to 17 years; for those over 16, we would expect that their consent to the assessment unless they have been identified as lacking the capacity to do so and a best interest decision has been made on their behalf.
• A formal assessment for ASD has been completed, where diagnostic clarification or a second opinion is required.
• Agreement that the local team (Clinical, Social Care or Education) will hold care coordination responsibilities for the individual.
• The ENC will consider offering assessments for individuals who have been refused access to the local ASD assessment pathway, where there is evidence to indicate the presence of significant social communication difficulties.
• Individuals with profound learning disabilities
• Presence of an acute psychiatric disorder or difficulty requiring urgent assessment or treatment, unless under local psychiatric care for risk management and/or undergoing medical treatment.
Referrals should include:
• The clinical questions to be addressed (including information regarding current concerns and difficulties experienced).
• Summary of developmental and recent history.
• Copies of previous diagnostic assessments, diagnostic and community therapy reports.
Providing the above information will help referrals to be processed in a timely fashion. Failure to provide the evidence above will delay the referral or we may be unable to accept the referral at this time.
What we offer
We undertake a variety of diagnostic and assessments, depending on the needs of the individual, their family circumstances and the tasks. These include:
• Diagnostic assessments for Autistic Spectrum Disorders and related conditions
• Functional assessments, with detailed guidance and recommendations for education, care and health services and for commissioners of these services
When the referral has been accepted and before the assessment
We will request disclosure of documentation which allows our MDT to decide on the most appropriate approach to the assessment process.
This should include:
• Relevant health records and records of the involvement of other agencies who have supported the individual and their family.
• Records from school, education providers, care services and any other appropriate services that have been involved with the individual.
• We may send the individual and/or their family a selection of questionnaires to complete and return to the clinic before the first meeting.
This enables us to gain important background information and develop a detailed chronology, which is required in order for the MDT to make appropriate decisions about the most appropriate form for the assessment process.
The Assessment Process
Prior to the assessment, telephone consultations with the referrer and with the family will be undertaken by a member of the clinical team to ensure that the arrangements for the clinical assessment are understood and to identify particular concerns and needs.
The aim of this consultation is to gain an understanding of the individual’s current presentation and to identify the families hopes and goals for the assessment and to clarify what the centre can offer. It is also an opportunity for the referrer to ask about how the assessment process works, who is involved and how long it is likely to take before the assessment is completed. We will also ask for information to help us offer an assessment that is tailored to the needs and comfort of the individual.
The assessments are undertaken by a team of two or three members of the team; one of our consultants will always led the team. The team members are individually selected to best meet the outcomes required for the assessment. We prefer to undertake assessments in settings that are familiar to the individuals and we want to ensure that the settings we use are comfortable for those contributing to the assessment. This will often mean that we will take our assessment team to the local area, seeing the child at home or in school; however, we can also offer assessments at the Elizabeth Newson Centre. The assessment process is an interactive one; we plan this carefully in advance and have clear aims and objectives for the assessment to ensure we can provide answers to the particular questions and issues we have been asked to assess. We work hard to have meaningful and effective interactions with the child, with the parents and with other family members. However, we will alter and change our plans as the assessment progresses, both to respond to any difficulties that occur and to help us understand problems and difficulties if these are not apparent. The core aims of the assessment our to understand how the child interacts, engages and responds to members of the team, their personal and family history and their current functioning at home, school and in the community.
Detailed chronology and developmental and personal history
Prior to the assessment, chronology and developmental history are prepared based on the information provided and this is discussed and supplemented during the assessment. This always involves the use of use of semi-structured interview schedules that have been developed by the centre and may also involve the use of formal tools, such as the Autism Diagnostic Interview or the DISCO. This will be supplemented by more general and wider ranging personal and family history, considering family life, education, employment and relationships. If possible, this audio data is recorded to improve analysis.
Some form of playful activity based session is always used, if possible observed by members of the family and/or other members of the assessment team. If appropriate, this session may use formal assessment processes, such as the ADOS. Wherever possible and unobtrusive, the audio and video of these sessions is recorded to improve analysis of this data.
Cognitive, Communication and Functional Profile
The assessment will involve evaluation of cognitive and functional skills and may include formal or informal assessment according to previous assessments, current presentation and needs.
We may carry out visits to the home and/or other settings, in order to observe the person in a range of environments.
We always offer some general feedback and comments at the end of the assessment and before completing our report we will provide more detailed feedback to the parents and, wherever appropriate the child, through discussion with the lead clinician of the assessment and our findings. The form that this takes will be agreed on the day of the assessment. This could be at a meeting at the centre or via the telephone and we will provide this within 6 weeks from the date of the assessment. Following the feedback session, we send detailed summary reports to the referrer and to the parents and, wherever appropriate, the child. With permission, we will send a copy to the local services responsible for future care, education and management. We encourage those concerned to share the report with all those involved in supporting and working with the individual.
A detailed report is provided which will include a summary of the assessment process and findings, our diagnostic opinion and recommendations. The centre uses recognised diagnostic criteria, in accordance with best practice. Currently, we use both the 5th edition of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, DSM–5 and the 11th revision of the International Classification of Diseases, ICD-11, when providing diagnostic opinions. These reports also contain detailed recommendations and guidance for the individual, their family and the services supporting them. The centre has a target of completing these reports within 10 weeks of the assessment.
After the assessment, the ENC can provide consultation to local teams and services if this is commissioned. The aim of this would be to ensure the successful handover to local service providers.