12 Intellectual disability12.4 Clinical
12.4.1 Assessment and communication
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Written by Resident Doctor Committee · Published
Adapting the interview
Prepare by reviewing the person's communication preferences, sensory needs and any augmentative system, and arrange a quiet setting, enough time and a familiar supporter if wanted.
Use familiar words, one idea at a time and specific time anchors, and allow processing time before rephrasing.
Acquiescence and suggestibility rise with anxiety or a wish to please, so start with open questions, then neutral focused prompts.
Check understanding through explanation or demonstration, not by asking "Do you understand?".
Address the person first, because a supporter's account is not automatically the person's preference.
Communication systems
Makaton is a multimodal programme for people with learning disability or autism whose speech and language are limited.
In Makaton the person keeps speaking and signs the main words in spoken word order, with matching graphic symbols, using signs borrowed from the national sign language.
British Sign Language is a complete natural language with its own grammar, used by Deaf people, whereas Makaton only supplements speech in English word order.
Objects of reference, symbols and Talking Mats help when matched to the individual.
History and baseline
The baseline is the person's mood, sleep, appetite, activities, communication and skills before the current concern.
A new change can matter even within population norms, and a longstanding unusual pattern may not be a new symptom.
Ask each informant how long they have known the person and in what settings.
Observation and physical causes
Withdrawal, agitation, lost skills or self-injury signal distress but are not a diagnosis.
An imaginary friend can be misread as hallucination, and longstanding echoed speech as thought disorder.
Pain from teeth, constipation, ear infection, reflux, injury or menstruation can show as changed behaviour, and a low observational pain score does not exclude it.
PAS-ADD supports adapted screening, but a positive screen prompts assessment rather than making the diagnosis.
Screening for dementia
The Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID) is completed by a carer and screens adults with intellectual disability, particularly Down syndrome.
It was designed and validated for intellectual disability and measures decline from the person's own baseline, unlike tools normed on typical premorbid cognition.
Autism assessment in adults
The National Institute for Health and Care Excellence (NICE) lists tools according to level of learning disability.
Tool | Format | Content | Suitable for |
|---|---|---|---|
AQ-10 (Autism-Spectrum Quotient, short form) | Brief self-report screen with a cut-off, can be read aloud to people with poor literacy | Primary care screening | Adults without moderate or severe learning disability |
ADI-R | Semi-structured investigator-based interview with parent or carer, algorithm-scored | Behaviour at four to five years: social reciprocity, communication, repetitive behaviour | Adults with or without learning disability |
DISCO | Lengthy informant interview | Lorna Wing and Judith Gould's triad of impairments, dimensional view of development at every age, also records features of conditions such as attention deficit hyperactivity disorder | Any level of ability |
ASDI (Asperger Syndrome Diagnostic Interview) | 20-item structured clinician-led interview | Gillberg's criteria for Asperger syndrome | Adults without learning disability |
The ADI-R pairs with the observational ADOS-2.
Capacity and safeguarding
Assess capacity for the specific decision at the relevant time, after giving accessible information and support.
Family involvement replaces neither the person's wishes nor a formal legal safeguard.
People with intellectual disability face more abuse, and the perpetrator may be someone involved in their care, so ask about safety in non-leading language.
Supporter stress or turnover alone proves neither abuse nor neglect.