Our Right to Choose autism assessment process

You will meet with a different specialist clinician for the Autism Diagnostic Observation Schedule Second Edition (ADOS 2). This appointment takes up to 60 minutes.

ADOS 2 is a standardised observational assessment of:

• communication

• social interaction

• play or imaginative use of materials

• restricted and repetitive behaviours and interests

This appointment focuses on your current skills and behaviour. It can be used with adults across different communication styles, from those with limited speech to those who are verbally fluent.

During the appointment, the clinician uses a structured approach that includes conversation and a set of tasks. Some of these activities can feel unusual or a little artificial at first. That is completely natural. The tasks are designed to give the clinician consistent opportunities to understand your communication style, social interaction and problem solving in a way that is fair and comparable across patients.

If you are worried that the activities do not feel “adult”, please be reassured that this is still an adult autism assessment. The clinician will explain what to expect, guide you through each task, and focus on understanding your real life experiences and needs. There are no right or wrong answers, and you do not need to prepare or practise in advance.

Online ADOS 2 appointments

Some ADOS style assessments are delivered online using an adapted, evidence based approach. We will send clear instructions in advance for your online appointment.

To help the session go smoothly, it can help to:

• choose a quiet space with minimal distractions and a stable internet connection

• use a laptop or tablet where possible, rather than a phone

• position the camera so the clinician can see your face and upper body clearly, and your hands during tasks where needed

• allow enough time beforehand to settle in, and plan something calming afterwards if you tend to feel tired or overwhelmed

• avoid practising or preparing answers, as the clinician needs to see your natural communication style

• let the clinician know if you need breaks, need questions repeated, or would like things explained more clearly

Some tasks may feel unusual in an online format. That is expected. The clinician will guide you through each step and the focus remains on understanding your real life experiences and needs as an adult.

Your nominated informant will meet with an ADI R trained specialist clinician for the Autism Diagnostic Interview Revised (ADI R). This appointment can last up to three hours.

The ADI R is a detailed developmental history interview. Because autism is a neurodevelopmental condition, it helps us to understand how your communication, relationships and ways of experiencing the world have been over time, not just how things feel for you now.

Many of the questions focus on early childhood, often around the ages of 4 to 5, as this can help identify long term patterns. The interview also explores your current presentation, including how you manage day to day life as an adult.

Your informant will be asked about areas such as:

• communication and language development

• social interaction and relationships

• routines, sensory differences, and restricted or repetitive behaviours and interests

• how these experiences have affected education, work, relationships and daily functioning

Some people worry that their informant may not remember everything in detail. That is expected. The clinician understands this and will guide the conversation carefully, focusing on patterns rather than exact memories. There are no right or wrong answers, and your informant can say when they are unsure.

You are encouraged to attend the informant appointment as well.

Preparing for the ADI R

The ADI R is a detailed developmental history interview. Many questions focus on early childhood, often around ages 4 to 5, as well as your current presentation. It can help to do a little preparation, but you do not need to remember everything perfectly.

If it is available, you may find it helpful to:

• look back at early photos or home videos to jog your memory about communication, play, friendships, routines, and sensory differences

• gather any helpful documents, such as school reports, EHCP paperwork, old letters, or copies of previous assessments

• note down a few key examples from childhood and from adult life, including what you found difficult, what helped, and what you still find draining or effortful

• think about times you masked, copied others, or over prepared to cope, as these experiences are important too

• write down anything you want the clinician to understand, even if it feels hard to explain

Supporting your informant

Your informant does not need to have all the answers. Their role is to share what they remember and what they noticed over time.

You can support them by:

• letting them know the interview may take up to three hours and may include detailed questions

• reassuring them there are no right or wrong answers and it is fine to say “I’m not sure”

• sharing the areas likely to be covered, such as early communication, friendships, routines, sensory differences, and daily functioning

• offering to look at photos, videos, or old reports together beforehand to help trigger memories

• agreeing practical boundaries, for example whether you will attend the appointment with them, and whether they would like a short break part way through

You are encouraged to attend the informant appointment as well.

After both appointments have taken place, the clinicians bring together all of the information from your assessment. This includes your questionnaires, the ADI R developmental history interview, and the ADOS 2 appointment.

Each part of the assessment looks at a different aspect of your experience. By reviewing these together, the clinicians can build a clear and balanced understanding of your strengths, needs and presentation over time. The information is reviewed against recognised diagnostic criteria using an evidence based approach. This helps ensure the outcome is thorough, consistent and clinically sound.