What the Social Communication & Autism Spectrum Service offers

We asked some young autistic adults about their experiences of autism diagnosis, and you can read their answers here Autistic young people talk about assessment and diagnosis

We will send you and your family a selection of questionnaires to complete and return to the clinic before the first meeting. These enable us to gain important background information, which will inform the assessment process and save time. We also request reports (including questionnaires) from your child’s school, with parental consent. If your child is not in school, we would normally request equivalent reports from the last school they attended.

Initial family consultation

The aim of this consultation is to gain an understanding of your child’s current presentation from the family’s perspective and to identify your hopes and goals, and your child’s hopes and goals for our assessment. It is also an opportunity for you to ask any questions you may have about the assessment process.

We know that many children referred to us struggle with anxiety so we may also discuss with you how we can help make visits to the hospital and any virtual interactions with us as manageable as possible, for example by providing photos of the team in advance, or visual timetables. Here are some Social Stories which you might find helpful to look at with your child before their appointment: Social Story for coming to SCASS for an assessment Social Story for remote or in-clinic assessment with SCASS

Developmental, Dimensional and Diagnostic Interview (3Di)

Parents/carers are seen together for a diagnostic interview with a clinician from the team (face-to-face or virtually). The interview is based on a computerised procedure developed here at Great Ormond Street Hospital (GOSH) and covers many aspects of your child’s development and current behaviour. The interview is very detailed and takes around 3 hours.

Autism Diagnostic Observation Schedule (ADOS-2)

This is an assessment for children and young people that uses a range of age appropriate activities to assess social communication skills. For younger children it includes games, looking at books, cartoons and pictures. For older children and teenagers it is more conversation-based, although there are also activities and tasks. Most children find the ADOS relaxed and enjoyable. It takes about an hour. We will ask for permission to video the session so that sections of it could be reviewed if necessary. If you or your child does not consent to be videoed, we will still do the assessment but this may make it harder for us to analyse what we have observed.

Educational profile

As well as autism-spectrum specific assessments, your child may be seen by one of our team’s psychologists for approximately two hours to complete age-appropriate tasks that assess their abilities. The purpose of this assessment is for us to find out about their unique profile of learning strengths and any difficulties, to inform our diagnostic decisions and recommendations. This may include an estimate of their intellectual ability (IQ). This assessment is not always needed (for example if your child has already had an Educational Psychology assessment), and we will let you know if we plan to do one.

Many children on the autism spectrum have an uneven pattern of strengths and challenges in different aspects of their learning and understanding. For instance, they may be really good at art, or building things, but find it harder to understand or remember complicated verbal instructions. It is important to identify these strengths and challenges to help us make helpful recommendations for school and daily life, and how to maximise your child's potential and wellbeing. We may also ask questions about how your child manages everyday tasks (this is sometimes called their 'adaptive functioning').

Further assessments

Before a conclusion is reached about a diagnosis we may carry out a school visit in order to observe your child in a more familiar environment. We will ask your permission to conduct this visit if necessary and will be happy to discuss it with you. Some children may also benefit from a speech and language assessment at this stage in order to determine whether language processing difficulties are impacting on their communication skills, and to make recommendations for language and communication development. We may advise the child is seen by an Occupational Therapist to assess and advise on their motor skills and their sensory processing, and how these are affecting their daily life at home and at school.

Physical examination

Some children coming to the clinic will have their height, and weight, and blood pressure measured as part of a physical health examination. If you think your child would struggle with this (e.g. due to sensory sensitivities or anxiety), please let the clinic assistant know when you arrive that you would like to opt out of these, as we would like the child to start their appointment with us feeling as relaxed as possible.

NB. We are not currently carrying out any genetic testing.

Mental health assessment

Many young people who attend our clinic will be offered an assessment with a psychiatrist or psychologist to explore wellbeing and any mental health concerns. This can help us to understand how their mental health may be affecting their current presentation, and/or how undiagnosed autism may be affecting their mental health. In turn this helps us to make the most useful recommendations we can for the local team managing their care.

Feedback

The feedback appointment offers you the chance to discuss the findings of your child’s assessment with the same clinicians involved in their assessment. This appointment is arranged as soon as possible after the diagnostic appointments. Following the feedback session, we send detailed summary reports to the professional who referred your child to us and to the local service that has accepted responsibility for your child’s future care and management. A copy will also be sent to you and the family doctor (GP). No reports are sent to other agencies without your consent. We would encourage you to share these reports with all those involved in your child’s care, with your child's school, and with others involved in their education and care, as relevant.

Follow-up

We do not routinely offer follow-up as your child's care is handed back to the referrer and the local team once we have completed our assessments. However, we may liaise with your local teams and school if needed, to ensure there is a successful handover to your local service providers. In addition, young people who receive an autism diagnosis from our team are offered the opportunity to attend our Pegasus post-diagnosis group.

Currently this consists of three meetings online (1.5-2 hours each session) with clinicians and with a small group of other young people and parents who have been through assessment with us. There are separate child and parent groups. Pegasus stands for Psycho-education Groups for Autism Understanding and Support. The aims of the group are to find out more about the autism spectrum and what it means for your child and family, and to explore their strengths and how they can use these to best effect in their lives. The group is also an opportunity to meet other like-minded young people and parents and to talk in a confidential, non-judgemental space with other people who understand.