Background
Autism is a lifelong neurodevelopmental disorder, with an estimated prevalence of around 1% for both children and adults (SIGN). It encompasses diagnostic criteria for Asperger’s Syndrome and Atypical Autism as defined in ICD-10 and DSM-IVR. Co-morbidity with ADHD and with intellectual disability is common.
NICE highlights that people across the whole autism spectrum are at higher risk of social and economic exclusion. Their condition is often overlooked by healthcare, education and social care professionals, leading to barriers in accessing care. They are more at risk of coexisting mental and physical disorders.
Early (childhood) identification is ideal, with vigilance by health care professionals during child health surveillance programmes in the domains of social interaction and play, speech, language and communication difficulties and behaviour – please see the CAMHS Autism page. But there are factors which mean that autism can present at any age, and awareness of later and adult presentations is also important. Severity is largely determined by functional impairment, which is therefore intrinsic to assessment.
The NICE and SIGN autism guidelines give further detail.
Treatment options include:
- Self-help and support – the first line treatment for those with traits / mild symptoms.
- Behavioural
- Supporting development of particular skills e.g. social communication
- Social / relational
- Educational for those still at school / employment support
- Psychological – largely for co-morbidity with mood disorders.
There is no pharmacological treatment for the core symptoms.
Assessing Autism in Adults
Symptoms must be present in early childhood but may not become fully manifest until adolescence or adulthood, when social demands can exceed limited capacities or early family ‘scaffolding’ and other protective factors decline.
Women may present differently and sometimes with apparently lower levels of impairment.
Autism is now defined as causing significant lifelong difficulties, which impair everyday functioning in two core domains:
1. Persistent deficits in social communication and social interaction over time and across a range of contexts
- Unusual or abnormal social approach and responses
- Limited reciprocal social interaction, reduced sharing of interests and emotions
- Difficulty in using or integrating verbal and non-verbal communication including eye contact, gesture, facial expression and body language
- Difficulty in developing and maintaining relationships, adjusting behaviour to suit social contexts.
2. Restricted, repetitive patterns of behaviour, interests, or activities as manifested by at least two of the following:
- Unusually formal, repetitive or inflexible use of speech, language motor movements or objects
- Insistence on routines or ritualised behaviour patterns, or excessive resistance or distress in response to change
- Unusually specific or intense interests or preoccupations
- Under- or over- reaction to sensory factors (e.g. adverse response to specific sounds or textures, excessive smelling or touching of objects).
An Autism diagnosis requires symptoms that limit and impair everyday functioning.
Assessment of severity is key to deciding whether and what treatment is needed and determines referral threshold. It is described in terms of the level of functional impairment which can be highly variable in different individuals (it can also help to consider this in terms of what additional support a person needs).
NICE identified that factors associated with autism include:
- problems in obtaining or sustaining employment or education
- difficulties in initiating or sustaining social relationships
- previous or current contact with mental health or learning disability services
- a history of a neurodevelopmental condition (including learning disabilities and attention deficit hyperactivity disorder) or mental disorder.
The Referral Pathway
The GP role includes being alert to the possibility of the diagnosis and establishing if the patient has suggestive symptoms. Using the short, validated AQ-10 questionnaire helps, and is recommended by NICE for initial assessment.
However also intrinsic to making a diagnosis is an assessment of functional limitation –patient leaflet to follow. SIGN 145 emphasises that impairments “in each of the areas relevant to autism diagnoses occur along a continuum from minimal to severe and categorical diagnoses inevitably involve defining a cut off”. The Neurodevelopmental Functional Difficulties Questionnaire (ND-FDQ) supports this functional assessment and assists both specialist triage and signposting for those with mild symptoms or traits. Patients may also find the autism packs in Resources and Links helpful. These were designed for those with the diagnosis, but are also helpful for those with symptoms who are not being referred or are awaiting assessment.
SS & CM 13.1.26
Adults who present with the core features of autism, namely significant difficulties in social interaction, communication and rigid or repetitive behaviours and thinking – are also at increased risk of developing additional mental health difficulties. Referral for further assessment and investigation should also take account of presenting symptoms suggesting additional, co-morbid conditions including anxiety, depression, sleep disorder, eating disorder and substance use disorder.
GPs should be alert to the possibility of the diagnosis, and, where indicated, check for symptoms, assess functional impairment and take account of context. It is helpful to refer with details of childhood concerns where those are noted in the GP record.
The national advice is that the diagnosis be made by a specialist, and preferably a multidisciplinary team, and those will be undertaken for patients with more severe symptoms. Should further information be needed not immediately available to the GP, or in the GP record, the team should seek that directly from other sources.
PLEASE SEE PRIMARY CARE MANAGEMENT FOR ASSESSMENT PRIOR TO REFERRAL
Referrals should go to the patient’s local sector CMHT who will undertake further screening and diagnostic assessment as appropriate.
Who to refer
Patients who:
- Score six or more on the Autism symptom screener (AQ10) and / or
- Are experiencing significant functional impairment (e.g. family life, work, education, looking after self, social life, risk taking)
- Have an existing diagnosis of autism and it is felt that further support for their mental health is needed.
Who not to refer
Patients:
- Scoring 5 or below on the AQ10 and who report no significant impact on everyday functioning. They will not be offered a diagnostic pathway either in primary or secondary care, unless there are additional concerns – please signpost to resources in the first instance.
- With an existing diagnosis of autism and no additional mental health concerns can be signposted to Number 6, the one stop shop for autism.
How to refer
Please include the Neurodevelopmental Functional Difficulties Questionnaire (ND-FDQ) wherever possible: where not available, outline the principle functional deficits in the referral text.
Through SCI Gateway to the local CMHT – except those with a diagnosis of learning disability or suspected learning disability (with or without a diagnosis of autism) – who should be referred to the Community Learning Disabilities Team.
Please include the AQ10 score with the referral
Screening for autism should:
- Check for symptoms
- Assess the level of functional impairment experienced
- Take account of contextual and / or third-party information (current and /or historical)
- Check for symptoms
The AQ-10 screening test is recommended by NICE, for all those without a moderate or severe intellectual disability. It is short and can be read to those with limited reading ability.
Ask the patient to complete the AQ-10 by ticking one option for each question.
Scoring:
- Score 1 point for ‘definitely or slightly agree’ on each of items 1, 7, 8, and 10
- Score 1 point for ‘definitely or slightly disagree’ on each of items 2, 3, 4, 5, 6, and 9.
If the individual scores more than 6 out of 10, refer for assessment by the local sector mental health team (CMHT): this is the threshold recommended by NICE.
If the patient scores less than 6 a referral may still be made if clinically indicated.
2 Assess the level of functional impairment experienced
Wherever possible, ask the patient to complete the Neurodevelopmental Functional Difficulties Questionnaire (ND-FDQ).
Referral to the local mental health team for a more detailed assessment of autism is only indicated if there is some evidence of functional impairment. This may be self-reported or described with the patient’s consent by an informant – please see below.
3 Record third party information
Where possible it is helpful to include any additional information on symptoms and functioning from a third party (family member or professional (e.g. Occupational Therapist or Clinical Psychologist), or someone who knows the patient in an educational or employment context).
What is helpful is information that indicates:
- Difficulties relating to social interaction and communication, rigid or inflexible thinking and behaviour and impact on everyday functioning
- An indication of difficulties apparent from an early stage in the patient’s life (by primary school age).
Please consult any previous letters from mental health services for results and recommendations from previous assessments.
For Professionals:
The NHS Lothian autism resource site (intranet) – has some patient resources too.
https://differentminds.scot/flipbook/autism-informed-services-ebook
SIGN 145: Clinical Guideline for Assessment, Diagnosis and Interventions of AUTISM
AQ-10 gives versions in several languages and the background to the questionnaire.
NICE 142 – AUTISM in Adults Diagnosis and Management
Patient Information
The Autism Post Diagnostic Pack contains information and signposting to resources. This is useful for people seeking further information and support who:
- have an autism diagnosis
- have some autism symptoms or traits but not reaching the threshold for diagnostic referral.
The pack is divided into six sections and is also available on the NHS Lothian intranet:
- https://apps.nhslothian.scot/files/sites/2/AUTISM-PDP-310518-S6-Finance-Employment-and-Education.pdf
Number 6, the One Stop Shop, Edinburgh
Funded through Autism Initiatives, Number 6 is a service for autistic adults who fit the following criteria: 16 and over, do not have a learning disability and live in the Lothians or the Scottish Borders. Number 6 provides free social opportunities, 1-1 advice and support on a range of issues.
Autism Awareness Charity & Services for Children & Adults in Scotland, providing information, services and support to families and professionals. Scottish Autism have developed an online programme, Right Click for individuals, parents and families of autistic people to access.
Pasda – Supporting families of autistic adults
SWAN – Scottish Women’s Autism Network
Scottish Women’s Autism Network (SWAN) was established in partnership with Autism Network Scotland and functions as a hub for peer support and networking.
