The ADI-R is the interview part of an autism assessment: a detailed, structured conversation about your development and behaviour, both when you were a child and now. It was designed to be answered by a parent, which raises an obvious question for adults. What if you are 50, your parents have died, and nobody who knew you as a small child is around to ask? This article explains who can take part at different stages of adult life, how to rebuild a picture of your early years, and how the interview is adapted when no parent or sibling can help. A fair and thorough assessment is possible whatever your circumstances, and we work with the information that is available to you.
The full patient version of this guide is available as a PDF: Preparing for your ADI-R interview, a guide for adults.
What the ADI-R is
The Autism Diagnostic Interview-Revised is a gold-standard clinical interview and one of the tools NICE recommends for assessing autism in adults [1, 2]. It focuses on three areas: social interaction and relationships, communication and language development, and patterns of behaviour, interests and activities. It explores your early development and your behaviour both now and in the past. Autism is lifelong, so understanding how you were as a child matters as much as understanding how you are today [3].
At NeuroFX the ADI-R is conducted by Tina Fox, our clinical lead, online by video call. Allow up to three hours, with short breaks if needed. The interview runs at a comfortable pace, there are no right or wrong answers, and nobody is judged on their responses. If someone is helping with the interview, we agree the arrangements with you in advance, including whether you join the same session or speak with Tina separately. Everything shared is with your consent, and you stay in control of who is involved.
Who can take part
The most detailed information usually comes from someone who knew you well in early childhood. For adults, though, who is available changes over time, and there is no single right arrangement. In order of preference, the interview can draw on:
- A parent or someone who raised you. The ideal informant. They can describe your first years, your early language and play, and how you related to other children. Both parents are welcome if that is possible, as they may hold different memories.
- Another relative who knew you as a child. An older sibling, a grandparent, an aunt or uncle, a step-parent, a foster carer or a close family friend who saw you regularly when you were small can all contribute, even if they did not see everything.
- Someone who knows you well now. A partner, adult child, close friend, housemate or long-standing colleague may not know about your early childhood, but they can speak to your current social communication, routines, interests and sensory responses. Their contribution is most useful alongside early-years information from another source.
- You. Your own memories and reflections are always part of the process, and for some adults they will be the main source.
A combination often works best: a parent for your early years and a partner for the present day, or an older sibling together with your own recollections. When you book, tell us who you would like to involve so that we can plan the session around them.
How this changes across adult life
We see adults at every stage from 18 to 60 and beyond. The picture below is a general one, and it is here to reassure you that your situation, whatever it is, is one we are used to working with.
Late teens and twenties. Parents are usually available and their memories are relatively recent. School reports, health records and family photographs are often still to hand. This is the closest the adult interview comes to the childhood version.
Thirties and forties. Parents are often still able to take part, though memories of the early years may be less precise and the interview leans more on the overall pattern of your development than on exact ages. Siblings, partners and long-term friends become more important, and childhood records may need to be tracked down.
Fifties and sixties. Parents may be elderly, unwell or no longer living, and siblings may themselves be unsure of details. Here the interview often draws on a mix of your own memories, an older relative or family friend where one exists, any surviving records, and someone who knows you well now.
If your informant is older, reassure them that approximate timings and general impressions are exactly what we need. They are not being tested on dates.
If you have no parent or sibling who can help
Many adults, particularly those in their forties, fifties and sixties, have nobody from their childhood who can take part. Parents may have died or be living with conditions that affect their memory, families may be estranged, or you may have grown up in care. This does not prevent an assessment. NICE guidance for adult autism assessment recognises that a full developmental history is not always possible, and that clinicians can draw on other informants, on documentary evidence such as school reports, and on your own account [2].
In this situation Tina conducts what we call an adult-informed ADI-R. You act as the informant for your own history, and the interview is adapted to work with what you can remember and what you can gather.
What is different about an adult-informed ADI-R
- The questions are the same in content, but they are phrased for you rather than about you, and Tina spends more time helping you find your way back to specific memories.
- Where the standard interview asks about the years between four and five, you are asked about the earliest period you can remember clearly, which for most people is somewhere in the primary school years.
- Gaps are expected. Saying "I don't know" or "I can't remember" is a perfectly good answer and far more useful than a guess.
- Your current experiences carry more weight, and Tina explores in more depth how the things you describe show up in your adult life.
- Anything you have been told about yourself as a child, even second-hand, is worth mentioning. Family stories, nicknames, things teachers said, and the way relatives described you all help.
Building a picture of your childhood
Before the interview, it helps to spend some time deliberately reconstructing your early years. Adults who do this often surprise themselves with how much comes back.
- Make a timeline. List the houses you lived in, the schools you attended and the ages you were at each. Anchoring memories to places and years makes them much easier to retrieve.
- Look at photographs and videos. Old family photos, school photos and home video can prompt memories of how you played, who you spent time with, and how you reacted to parties, holidays or crowds.
- Read anything written about you at the time. School reports are especially valuable because teachers often commented on friendships, playtime, following instructions and unusual interests. Old letters, diaries, certificates, and the notes in a baby book or Red Book can all help.
- Ask more distant relatives and family friends. An aunt, cousin, godparent or former neighbour may remember you clearly even if they only saw you a few times a year. A short conversation or a few written notes is enough; they do not need to attend.
- Reconnect with people from school. A childhood friend, a former classmate or occasionally a former teacher can describe how you were with other children.
- Request records. You are entitled to ask your GP practice for your childhood medical records, which may include health visitor and developmental checks [4]. Schools and local authorities may hold old educational records, and adults who grew up in care have a legal right to request their care files from the relevant local authority. These requests can take several weeks, so start early.
You do not need all of these. A single school report, one photograph that reminds you of something, or one conversation with a cousin can add real value. There is no need to produce a complete archive.
Involving someone who knows you now
Even where nobody can speak to your childhood, consider bringing in someone who knows you well today. A partner, a close friend, an adult child or a trusted colleague can describe how you come across in conversation, how you handle change, what your routines and interests look like from the outside, and how you respond to noise, light, textures or busy places. People often notice things about us that we do not notice ourselves, and this outside view is an important part of the picture when early history is thin. If you would prefer not to involve anyone else, that is your choice, and the assessment can still go ahead on your own account together with the other elements.
How to prepare, whoever is taking part
Some time spent preparing helps us gather the most accurate and complete information. This applies to you and to anyone helping with the interview.
Review developmental milestones. Think back, or ask your informant to think back, to when you first smiled, babbled or said your first words; when you started walking; how you played with toys and whether you played with, or alongside, other children; and whether anyone had concerns about your development or you were seen by a health visitor or speech and language therapist. Exact ages are not needed. The overall pattern is what matters.
Think about specific examples. Concrete examples are more useful than general descriptions: how you sought comfort when upset as a child and how you manage distress now; how you made and kept friends at school and what relationships look like today; how you take part in conversation, including small talk, eye contact and understanding jokes or hints; any routines, rituals or intense interests, past or present; how you cope with unexpected changes to plans; sensory sensitivities and how they affect daily life; and any patterns across different jobs or courses. Many adults find it useful to jot examples down in the days before the interview as they come to mind.
Gather relevant documents. Previous assessments or reports at any age, school reports or records of additional support, letters from other healthcare professionals, a Red Book or baby book, and occupational health or workplace adjustment records are all helpful to have available during the interview. None is essential.
If you are the informant. Read the guide before the interview, spend some time thinking back over the period you know best, and describe what you actually saw and remember rather than what you think it might mean. It is fine to disagree with the person being assessed or with another informant; different perspectives are helpful, not a problem. If you did not know the person during a particular period, simply say so.
During and after the interview
Tina guides you through each section and asks follow-up questions to clarify your answers. Some questions focus on the present day, others on childhood, particularly around ages four and five or the earliest period that can be clearly remembered. Answer as honestly and thoroughly as you can, describing both strengths and challenges. Many adults have spent years developing strategies to manage or mask their differences, and it helps us to hear about the effort that goes into this, not only how things look from the outside.
Revisiting childhood can bring up difficult memories, and hearing a family member describe you can be unexpectedly moving. If you need a short break, say so.
The ADI-R is never used on its own. It sits alongside the ADOS-2 observation, the questionnaires you complete, and any reports or records you provide [2, 3]. When the developmental history is limited, those other elements carry more weight, and Tina weighs all of the evidence together before reaching a conclusion. If there are areas where the information is not enough to be confident either way, we say so clearly and explain what would help. You then receive an outcome letter and a detailed report, as set out in the adult autism pathway document you were sent when you booked. If an informant took part, the report is yours, and it is for you to decide what you share with them.
What this means in practice
- The adult ADI-R is online with Tina. Allow up to three hours, with breaks.
- A parent is the ideal informant, but a relative, someone who knows you now, or your own account can each contribute, and combinations work best.
- No parent or sibling does not mean no assessment. An adult-informed ADI-R uses your own history, records and second-hand accounts, as NICE allows.
- Rebuild your childhood deliberately: a timeline, photographs, school reports, distant relatives, and records you are entitled to request.
- The ADI-R is weighed together with the ADOS-2, questionnaires and records. It never decides the outcome alone.
When to speak to a professional
If autism is on your mind for yourself, NHS routes start with a GP referral. NeuroFX offers private autism assessment for adults using both the ADI-R and the ADOS-2, with the observation at our Bedford clinic. If you are unsure who to involve or how to prepare, contact the clinic and we will talk it through. Seek same-day help via 111 (or 999 in an emergency) for any mental health crisis.
