The assessment and diagnosis of Autism Spectrum Disorder (ASD) in children and young people: Information for GPs and Primary Care

What is ASD?

Autism is a lifelong developmental condition that affects how a person communicates with and relates to, other people and the world around them. It is thought to affect at least one per cent of the population. 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.

Using Autism-Friendly Strategies:

People with autism may:

be over- or under-sensitive to light, sound, and pain

have a very literal understanding of language

find open-ended questions difficult to answer

need more time to process information

respond to medication very individually

find it very stressful when appointments run late.

Adjustments need to be tailored to the individual but consider the following:

ensure your reception staff are autism trained and aware

explain clearly what will happen at the beginning of the consultation to reduce anxiety

ask clear, specific questions – be aware of how you phrase questions

give people time to process what you’ve said before asking more questions
check people understand what you’ve said – even if they appear to have understood

use visual aids to support your discussion if possible, e.g. pictures/diagrams

adjust to any sensory needs – e.g. reducing electric lighting if possible

minimise clutter

schedule appointments at the start of the day to reduce delays and time spent in the waiting room

provide a written summary.

What types of difficulties might a child or young person have?

Signs and Symptoms of possible ASD in Children and Young People (NICE Guidelines)

Social interaction and reciprocal communication behaviours

Spoken language may be unusual in several ways:

very limited use

monotonous tone

repetitive speech, frequent use of stereotyped (learnt) phrases, content dominated by excessive information on topics of own interest

talking ‘at’ others rather than sharing a two-way conversation

responses to others can seem rude or inappropriate.

Interacting with others

reduced or absent response to other people’s facial expression or feelings

reduced or delayed response to name being called, despite normal hearing

subtle difficulties in understanding other’s intentions; may take things literally and misunderstand sarcasm or metaphor

reduced or absent social interest in people, including children of his/her own age – may reject others; if interested in others, may approach them inappropriately, seeming to be aggressive or disruptive

social isolation and apparent preference for aloneness, lack of shared interests with peers

reduced or absent greeting and farewell behaviours

lack of awareness and understanding of socially expected behaviour (appropriate to developmental level); makes comments without awareness of social niceties or hierarchies

unable to adapt style of communication to social situations, for example, may be overly formal or inappropriately familiar

problems losing at games, turn-taking and understanding ‘changing the rules’

reduced or absent awareness of personal space, or unusually intolerant of people entering their personal space

reduced or absent ability to share in the social play or ideas of others, plays alone
reduced or absent enjoyment of situations that most children like.

Eye contact, pointing and other gestures

reduced and poorly integrated gestures, facial expressions and body orientation, eye contact (looking at people’s eyes when speaking) and speech used in social communication.

In young children, reduced or absent joint attention shown by lack of:

gaze switching

following a point (looking where the other person points to – may look at hand)

using pointing at or showing objects to share interest.

Unusual or restricted interests and/or rigid and repetitive behaviours

repetitive ‘stereotypical’ movements such as hand flapping, body rocking while standing, spinning, finger flicking

play repetitive and oriented towards objects rather than people. History of a lack of flexible social imaginative play and creativity, although scenes seen on visual media (for example, television) may be re-enacted

over-focused or unusual interests. Preference for highly specific interests or hobbies

rigid expectation that other children should adhere to rules of play

excessive insistence on following own agenda
excessive emotional distress at what seems trivial to others, for example, change in routine

strong preferences for familiar routines and things being ‘just right’

over or under reaction to sensory stimuli, for example, textures, sounds, smells

excessive reaction to taste, smell, texture or appearance of food or extreme food fads.

Other factors that may support a concern about autism

unusual profile of skills or deficits (for example, social or motor coordination skills poorly developed, while particular areas of knowledge, reading or vocabulary skills are advanced for chronological or mental age)

social and emotional development more immature than other areas of development, excessive trusting (naivety), lack of common sense, less independent than peers.

Further information about autism in different age groups for Primary Care Practitioners is available on the following website: asd.nes.scot.nhs.uk

How should I raise concerns?

Families may approach you with a specific concern that their child may have ASD. Alternately, concerns may be raised by another professional following developmental review or observations.

It can be difficult for professionals to raise concerns with families. Rather than talking in terms of diagnostic labels, it may be more appropriate to give descriptions of behaviours or developmental concerns. If they do not share your concerns, you may need to make this a gradual process.

How do I refer for an assessment for ASD?

The Cornwall multidisciplinary pathway for the assessment and diagnosis of Autism Spectrum Disorder (ASD) in children and young people was developed using national guidelines.

It aims to provide timely assessment and where appropriate, diagnosis close to home if possible.

The process is initiated by a referral to the most appropriate members of the multidisciplinary team.

For children under 5 years 6 months, they can only be referred through a joint agreement with a Speech and Language Therapist (SLT) and Community Paediatrician with those specific professionals making the referral. If the child is not already known to both of these teams then a referral should be made to these specialists who will then decide with the family about an autism assessment.

To refer to SLT please complete the referral form on the Early Help Hub. To refer to Community Paediatrics please write or email them (contact details can be found at the end of this leaflet).

For children over 5 years and 6 months, if CAMHS already have involvement, please contact the CAMHS team in the first instance to discuss your concerns.

If CAMHS are not involved, a referral to the ASD Assessment Team (ASDAT) can be made through the Early Help Hub

(contact details are provided at the end of this leaflet). This should be accompanied by more detailed information from the family and school (these forms are found with the referral form on the Early Help Hub)

If the young person is over 16 and does not have a Learning Disability, please refer to Outlook Southwest – contact details are provided at the end of this leaflet.

What information do I need to gather?

please complete all sections on the referral form. Please describe what you see.

please request additional information from the school and the parents on the forms that accompany the referral form; this will enable us to establish if this is the most appropriate assessment pathway. Until we have all of this information, we will not screen the referral.

Where can I signpost families for support whilst they are waiting?

Cornwall Autism and Wellbeing Wheel provides information about various aspects of ASD

www.supportincornwall.org.uk/kb5/cornwall/directory/autismwheel.page

The Early Help Hub can provide advice and information about local services:

www.cornwall.gov.uk/earlyhelphub

01872 322277

The National Autism Society has lots of useful information about specific difficulties and also have a help-line:

www.autism.org.uk

0808 800 4104

Spectrum provides a telephone helpline and advice about local support etc. They can be contacted on the following link/telephone number

01326 371000

www.spectrumasd.org