What does an adult autism assessment involve?

A team of trained, experienced professionals, not a single person. NICE CG142 (point 1.2.5) asks for a comprehensive assessment by competent staff, drawing on several professions. Where possible it also asks for a family member or other informant to be involved, or for documents about early development and behaviour, such as school reports.

At the start, the professional should explain what the assessment is for and how the outcome will be fed back to you (point 1.2.6). The setting, the length and the pacing can be adapted (point 1.2.1). That adaptation is part of the guideline: you are not asked to fit a format that would distort what is being observed.

NICE lists seven topics (point 1.2.7). The first is the core of the assessment: difficulties with social interaction and communication, and repetitive behaviour, resistance to change or very narrow interests, present in childhood and continuing into adulthood.

NICE adds a sentence that changes everything: the assessor directly observes the core features, especially in social situations. A questionnaire does not watch you. It records what you say about yourself.

NICE separates two levels. To decide who should be offered a full assessment, it suggests the AQ-10, a ten-item scale: a score of 6 or above, or a professional's suspicion, means a comprehensive assessment should be offered (point 1.2.3). That threshold decides a referral. It says nothing about the outcome of the assessment.

For more complex cases, point 1.2.8 names formal tools that can be used: the Adult Asperger Assessment (which includes the AQ and the Empathy Quotient), the ADI-R, the ADOS-G, the ASDI and the RAADS-R. Points 1.2.8 and 1.2.9 add that other tools, including the DISCO, can help structure the process. These tools help the professional. They replace neither judgement nor the team.

Not routinely. NICE says not to use biological tests, genetic tests or neuroimaging for the purpose of the assessment (point 1.2.11). Tests may be considered case by case (point 1.2.17): a genetic test when there are specific physical features, an EEG if epilepsy is suspected, or hearing and sight checks.

Be wary, then, of any service that claims to establish autism from a sample or an image. This guideline does not provide for it.

Other possible explanations, and what may coexist. Point 1.2.10 names other developmental conditions, mental disorders (including social anxiety disorder and obsessive-compulsive disorder), neurological disorders such as epilepsy, physical disorders, communication difficulties and sensory sensitivities.

It is one more reason not to rely on a score alone: similar answers can come from very different situations. Point 1.2.12 also asks assessors to look at certain risks, such as exploitation by others or the breakdown of family support, so that a plan can be built if needed.

NICE provides for three things. A second opinion can be sought when there is doubt, disagreement within the team, disagreement with the person, or a complex situation (point 1.2.16). Everyone who receives a conclusion of autism should be offered a follow-up appointment to discuss what it means, any concerns and the support they may need (point 1.2.18). A care plan is built from the assessment (point 1.2.13).

1. Before the appointment, look for traces of childhood: school reports, teachers' comments, what your parents remember.
2. Think about who has seen your behaviour over many years, and whether they would agree to answer questions.
3. Write down concrete situations at home, at work and in company, and which ones cost you the most effort.
4. List what bothers you about noise, light, touch or textures.
5. At the start of the first session, ask how and when the outcome will be shared with you.

The Brain Quiz autism spectrum questionnaire has 28 items. It describes what you recognise in yourself today. It does not ask about childhood in a structured way, involves no relative, observes nothing and rules out no other explanation.