Adult autism informant guide
What is an informant?
When diagnosing autism, we ask the person being assessed to choose someone to support them throughout the assessment. This person is referred to as the "informant" and should be someone who has known the person being assessed from an early age. This is often a parent, partner, friend, or long-term companion.
The most important thing is that the informant has known the individual from an early age and has a good understanding of their behaviours during key developmental stages.
What is the informant's role?
Where possible, information about the person's experiences both in childhood and as an adult is collected from the informant. This isn’t about judging anyone's characteristics or behaviour – it’s about helping the clinician understand their developmental history and reach the most accurate and reliable conclusion.
If you've been chosen to be someone's informant, your role will be to help our assessment team build a full picture of this person’s developmental history and current behaviour. You'll be asked to complete two tasks before the assessment:
1. Take a brief online questionnaire
You will be sent a link to complete a questionnaire that focuses on behaviours during key developmental stages. This information is very important, so please be sure to complete them in as much detail as possible. Please complete and return your questionnaire online at least 48 hours before your interview.
2. Attend an online ADI-R interview via Zoom
The next step will be to attend an online interview via Zoom with a Consultant Psychiatrist. We call this the Autism Diagnostic Interview-Revised (ADI-R) and is a comprehensive interview that lasts between two and three hours, and looks at the developmental history and current behaviour of the person being assessed.
The original ADI was created in 1989 as a method for researching autism diagnoses. In 1994, it was revised, shortened and adjusted, resulting in a better diagnostic model that produces more valuable and accurate outcomes.
The ADI-R focusses on three main areas:
- Qualities of social interaction
- Communication and language
- Restricted and repetitive, stereotyped interests and behaviours
The interview has proven highly effective for making a formal diagnosis, as well as producing recommendations for ongoing support and planning. Your virtual appointment will be conducted online via Zoom. You can access your meeting using a link that will be sent to you by email.
What kind of questions are asked
A lot of the questions will focus on the time between the individual's third and fifth birthdays as this is a key stage in their developmental history. If you or a family member has any documents such as school reports, speech, language, or psychology reports from this time, it would be very helpful for your clinician to see these before the interview. Please email any documents to [email protected] at least 48 hours before your interview.
The clinician will begin by asking questions about life growing up, experiences at school, any strengths and difficulties, both now and in the past. They will also ask questions about specific milestones in the individual's development. For example, they might ask what their first words were, or how old they were when they learnt to walk. They will also ask more specific questions about imagination, body language, eye contact, friendships, and interests.
How do we use this information?
The information we receive from your questionnaire and interview is very important for helping us build a complete picture of the person's development, strengths and behaviours. It’s mainly intended to supplement the information they provide and to obtain an accurate account of both their current and childhood behaviour. Many people have difficulty recalling their own behaviour retrospectively, so this information is particularly useful in helping us understand their behaviour when growing up.
While it’s possible to receive a diagnosis without the support of an informant, evidence shows that the most accurate results come from this diagnostic approach, and we want to ensure the person being assessed has the most reliable answers
Any questions?
Acting as someone's informant is an important role. There's really nothing to be worried about, but it's understandable to have lots of questions. If you're unsure of anything at all, please don't hesitate to call us on 0203 326 9160.